BabyWhispererForums.com
EAT => Food Allergies => Topic started by: alligirl on November 17, 2005, 21:03:57 pm
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You mentioned a few weeks ago that you were having Nathan tested for Celiac Disease. Have you gotten the tests back and/or a diagnosis? How long did it take for you to get the results back?
I'm having the boys tested tomorrow, I think. I have no idea how long it will take to get the results back and I can ask tomorrow, but just wanted to have an idea.
I kinda have a "bad" feeling about Stephen....
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Hi Alli, we had a blood test done which is a screen of 4 blood tests - two came back negative and two positive (the two positives were the more reliable of the tests - something like 95% accurate). I think they only took about 3 days? There is a "gold standard" test which is a biopsy that is recommended for a more definite diagnosis (they take a sample of the intestine), but my doctor recommended not to have that done since the bloods came back as they did and because he had "symptoms" it pretty much spoke for itself. So, we have embarked on a 100% gluten free diet - it's been almost 3wks. I haven't seen any major changes yet, but I understand it can take a while for the intestine to heal enough and of course if he was to eat a bit of gluten by accident then that would set us back, I'm confident he's not eating any, but there is always the risk of cross-contamination from elsewhere or other products. We have a paediatrician appt in a couple of weeks, so will discuss it further then. I'm undecided yet what to do with Danielle as far as introducing gluten into her diet - there are different theories about normal introduction or delayed or never. Still pondering that one and sorry for blabbering on about more than what you asked for. :lol:
Good luck and keep me posted. :)
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Thanks...I'm gonna PM you, I should have done that in the first place! :roll: :lol:
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Actually -- It is good to talk about it here so others can learn more about it. :)
Do you mind sharing what the symptoms are?
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Good idea Colleen! :) Maybe Alli could change the title to say Celiac Discussion/Awareness or somthing...
Nathan's particular symptoms are (mostly poop related :lol: ):
Pale poop (pale yellow)
Undigested food in poop (all the time and literally chunks of everything he's eaten - not just common things like corn)
Frequent pooping - in Nathan's case - 4-6 times a day
Very soft poop and falls to bits (diarrhoea would be common for a lot of celiacs, but Nathan's never had diarrhoea)
Skin rashes (he's had his for 6+mths) including a nappy rash that never went away even when he was toilet trained - but his isn't the celiac related skin rash, can't remember the name of it - dermatitis something
Stunted growth (he stopped growing as his food wasn't being digested) - but with diagnosis most celiacs catch up
Constantly hungry - never satisfied
Anaemia (fortunately he was only slightly low in iron)
The only real reason I put all of these things together was from reading my What to Expect book about the diseases at the back and came across this one and was surprised to see he had a lot of the symptoms. He's a really healthy well child apart from that, so wasn't looking ill or displaying anything much different from his ordinary. Also my homeopath mentioned that his frequent pooping actually was a lot whereas I thought it was from eating too much fruit.
Others are, which Nathan's not affected by:
Fatigue
Developmental delays - both speech and physical
Diarrhoea
Celiac (or Coeliac as it's spelt in NZ and Britain and a lot of other countries) is a genetic disease, but it is often triggered by something like a virus - which I have traced Nathan's back to a vomiting virus he had about 5mths ago. Some believe that Celiac is misdiagnosed as Irritable Bowel.
Improvements I've already noticed:
He's growing in height again
His hunger isn't quite as insistent
Rashes are beginning to clear
Only poops 2-3 times a day now
Poop is getting darker, firmer and less chunky
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Well, I had to take Lici to the doctor for something else but we ended up talking about her lack of size (although she is growing steadily, she is a long thin child and still fits some 6-9 month shorts - in fact most shorts she owns are still size one and she's three) and I had talked about her allergy to wheat which was mostly elimination diagnosed. Although we took her to a paediatric gastroenterologist, he faffed about so much I couldn't be bothered returning as I felt we had figured out what was causing the problem..... Anyway, her doctor now thinks it's a good idea to get her properly tested for coeliac disease.
Her initial symptoms were ezcema and then when she was weaned, we put her on weet bix for breakfast and WHOA!!!!! Her nappies absolutely REEKED! (Even the paediatric gastro guy who you thought would have seen (smelt) some bad stuff in his time was amazed :lol: :oops: )
She went through a failure to thrive phase at this time too but we moved her to a lot of rice based carbohydrates and give her a limited amount of bread.
I really should get her tested especially as I am lax about cutting out wheat products completely and since I don't change her nappies anymore (YAY) I can't really monitor her bowel movements.
Will let you know when I get my act together and get her tested.
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Celiac discussions can get kinda gross kinda quick! :lol: Especially from what I've seen on Celiac message boards.
Stephen's symptoms are very similar to Nathan's and it sounds like his pooping habits are identical--
frequent and pale color poops
stools that float rather than sink (there's a technical term for that "stratorrhea" or something like it) with undigested food
and come to think of it, he is hungry and asking to eat all the time (perhaps that's just normal toddler behavior, though)
and he's waffled between diarrhea and constipation for well over a year now--we've just in the last few months gotten him "un-constipated" and now he deals with bouts of diarrhea.
Zachary's poops are a little harder to tell since they're still in his diaper, but he also has VERY foul and HUGE dirty diapers a lot (it's nothing for me to have to change his clothes 2-3 times a day because he poops out of them so much)! He's also quite small (not quite 19 pounds and a year old) and has a couple developmental delays. And he has eczema. Even two people who are related and both have Celiac disease can have very different symptoms.
We had the tests done yesterday. Poor kids, they took a lot of blood. They only did two tests and it'll be about a week till we find out...I'm hoping it's not delayed by the Thanksgiving holiday. THen again, I don't want them to have to be gluten-free for THanksgiving! :cry:
I'll change the name of the thread....and I might move it to the food allergy forum, it's probably better suited there than the Lounge (especially with all the talk about poop! :lol: ).
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:lol: Who would have thought we'd be talking about poop?
Alli, we don't get the floaters anymore! :lol: 8)
Emma, I think it would be a good idea to get Lici tested, especially if it is Coeliac she will need to do a 100% GF diet for life, any small amounts will continue to damage her body and it won't get a chance to repair itself and may lead to other illnesses later in life. She will need to be on a full normal diet though to be tested from what I understand and then it's just a blood test - at least you'll have a better idea of whether it's an allergy thing or an intolerance (wheat allergy is quite different from Coeliac - CD is an autoimmune disease). I guess she could have the allergy tests done too - I wish in a way that we'd done that with Nathan too, but I'm reluctant to go back for more blood tests again (although he completely didn't even notice and only slightly flinched when the needle went it :shock: ).
Go on! :wink:
Alli, I know what you mean about thinking of holiday meals not being the same. Already with Christmas lunch I've vetoed going to a restaurant since my parents suggested it. Too much to worry about just yet I think, so we'll end up having a bbq lunch which should be easy to cater for.
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hi all,
weve been having problems with our little fella from pretty much birth. ( bottle / breast fed 50 / 50 since about a week. SMA GOLD )
he would always get real bad wind ( often trapped ). we were always given the old "colic" excuse.
quinns just turned 1 and on his birthday he had the mother of all screaming fits. ( not seen since the septacimia scare!! )
his stomache was swollen up like a bowling ball :(
it wasnt the first time hed had it but you kinda put it down to the whole baby experiance.
5 days later he had the same experience...
that was it.. off to the doctors with him
good ol NHS.......
"well refer you to a specialist... could be a month or 2!!!"
now never being one to sit around and wait ( :D ), and also knowing a fair bit about adult nutrition i decided to take matters into my own hands :shock:
knowing that i was fairly sensative to milk products, all cow products were 1st off the shopping list.
next off the shopping list was GLUTEN.
didnt really know too much about Gluten TBH.
the one thing i did know though was that it was in almost all processed( :evil: ) food.
i dont eat processed( :evil: ) food so neither does Quinn. ( now )
this was last tuesday that we implemented these changes
no dairy ( soya milk now )
no processed( :evil: ) food
no wheat.
no gluten.
the change weve seen him was noticable on the 2nd day.
im reckoning its lactose rather than Gluten.
( the exception will of course be Celiac Spore )
but fingers are most definately crossed.
the changes weve witnessed are.
he's happier in general
his poo is more like adult poo. ( ie not like peanut butter)
he sleeps more soundly and for longer
only 1, sometimes 2 poo's per day as opposed to 3 or 4
less trapped wind ( although broccoli and cauliflower are now off the menu, after yesterday)
so now were just waiting to see the specialist. hopefully theyll be able to narrow the list of intolertable foods..
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Good for you quinns dad! So what are you going to do now with re-introducing food? Or will you stay free of all those foods until you have your specialist appointment? What sort of meals are eating with being free of all those food groups?
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Would you expect that in a skin prick test for wheat that if you had no signs of problems that coeliac disease would be not an issue ?
Just wanted to know your thoughts :D
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Khyan's--Celiac can only be diagnosed through blood tests/biopsies/GF diets (like Nikki has said, the biopsies are the best, but I think you can kind of figure it out by positive blood tests and a positive reaction to a GF diet). It's an intolerance, not an allergy (someone smarter than me can explain the difference) and it has to do with how your body processes it (namely, the small intestine). Does that make sense?
Quinn's Dad--sounds great that you've begun figuring out stuff. Be careful though with the soy milk (I'm assuming that's what you mean by "soya" :? ) because I've read that some brands also have gluten in them. Just "food" for thought.....no pun intended. :wink:
*twidling my thumbs waiting for our results....*
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Good for you quinns dad! So what are you going to do now with re-introducing food? Or will you stay free of all those foods until you have your specialist appointment? What sort of meals are eating with being free of all those food groups?
the meals were on is just real natural home made food.
breakfast is GM / GL / WH / DA free, corn flakes and oats. made with organic soya milk
his other 2 meals are either rice or potatos and meat/fish and veg.
weve put him onto cow n gate soya milk for his 2 bottles
luckily our local tesco has a fantastic selection of GM / GL / WH / DA free snacks and treats
as for introducing new food.... yeah were gonna start next week :?
were leaning (hoping) towards that he is lactose rather than gluten intolerant.
were going for 1 food at a time. Weetabix ( his fave ) with soya milk.
so fingers are well and truly crossed
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Well I finally got my act together and went for the blood tests for Lici. Got three phials taken - a couple of allergy tests, coeliac and some others.
Got one result that afternoon - very low in iron. (Which completely does not match symptoms, I thought those kids low in iron had no evergy which begs the question, just how active is she going to be when she has normal levels of iron :shock: :lol: should I be worried :lol: ).
But now I play the waiting game to get the rest of the results and I guess another trip to the doctor soon.
Will let you know.
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Good luck Emma! Actually, funny you mention low iron - from the reading I've done, kids tend to suffer hyper activity rather than fatigue, so once her levels are normal she may tone it down a bit, that's why low-iron is also linked to disturbed sleep. Strange but true.
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Alli and Emma, any news yet?
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No word yet....I called the dr's office on Friday to see if they knew anything. The nurse wouldn't tell me anything because the doc hadn't signed off on the results and given her instructions yet ( :? )and they weren't having full office hours till Monday. They didn't call yesterday so I expect a call today, and if not I'll call them tomorrow....it's driving me BATTY! Thanks for asking about us!
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Not yet but we were told to expect not to hear for I think it was 10 days to two weeks. (I think, Mummy brain seems to have kicked in...)
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Still no result for the coeliac test but get this, negative on the gluten allergy.... What? Through elimination we can SEE (through exzema) that she must have an allergy to this. Sigh. Back to retest I guess.
If it's not gluten, what else is in bread, biscuits and wheat bix that could be causing the problems.... any ideas?
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I am a bit confused, but I wonder if it's possible to not be allergic to gluten but still have gluten intolerance aka coeliac since one is an autoimmune disease and the other allergy? I've been reading a book that talks about additives and preservatives in relation to kids - is there a common food additive number on the back of any of those products?
Alli, any word yet?
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YES! My boys' tests came back NORMAL!! YAY!! :D
Although, I have to admit, I still have my doubts since they told me that the test isn't accurate for kids under 5. *sigh* But going gluten free seems so drastic since they're results came back normal, ya know?
And another good thing....my dad is getting tested! I was so afraid he wouldn't being the stubborn guy he is, but he went to the doc just a few days ago and asked about it! I'll be getting tested after the first of the year...WHICH BRINGS ME TO....
If you're kids have it, you really should be getting tested!! Undiagnosed celiac disease can lead to malnutrition, osteoporosis (which my aunt has), and lymphoma (how my grandmother died). Just a friendly nudge to get you going in the right direction! :wink:
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That's great news Alli! You must be stoked! :D
I actually discussed it with my doctor and she said if I wasn't having symptoms at the moment then things are ok, I don't think I've been "triggered" yet. My mum got tested and she came back negative. I know, I should, but we don't have med insurance and I can't justify an appointment just yet without another reason since I'm well. :roll: DH and I are pretty much living a gluten-free diet anyway since Nathan is so I wonder if the test will work anyway now? I will talk to Nathan's paediatrician next week when we have his appointment and also discuss Danielle since she's gluten-free still.
Now I'm thinking that we're also dealing with Diabetes Type 1 with Nathan, he has some terrible rages which are miraculously fixed by food. :x :cry: . Apparently they can go hand in hand, so that will be another discussion point. Think I better write a list to make sure I cover all points.
Emma, I'm surprised that test is taking so long to come back, Nathan's only took 3-4 days. Guess it depends on the lab they send it to.
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Emma-was Lici tested for milk allergy? You'd be amazed at all the things that have milk in them, almost every bread/biscuit/pastry does.
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What I'm thinking is once we get back from our short trip to Australia and perhaps, I guess after Christmas (depending on how busy we get in the week before) I'll take her back for another range of allergy testing - at least have a proper consult with the dr once the coeliac's test is back because I have only talked to the practice nurse who phoned through the result.
Not sure what exactly the tests were but they took 3 phials of blood off her.
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Hi
My DD 18 months just got diagnosed with celiac disease three weeks ago. We took her to the doctor because her tummy was so big and arms and legs skinny. Anyway they ended up doing a endoscopy and she had no vili left at all :( Anyway I realised her runny poos which were 4-6 times daily and her constant eating, and moodyness were not normal either (which everyone I asked previously said it was). Anyway she was a perfect sleeper before but a few months before she got diagnosed she was waking 2 hourly during the night for food, we now realise it was because she was constantly hungry as she wasnt absorbing any nutrients/calories. Anyway I have a few questions for those who have experience similar.
How long will it take for her tummy to go down? It has been 3 weeks, they told us it would take 6 but tummy still is not much smaller, does it go down all of a sudden?
When will she stop getting up during the night - some nights she doesn't but it is really hard to get her to bed at night, her word for food is 'door' and I am not sure if she is using it for an excuse to stay up or is she really hungry? I really don't know where to draw the line and think she may be manipulating us a bit, but I feel so sorry for her I can't be too hard on her - probably setting myself up for a terrible toddler?
Her mood has improved dramatically but she is still super clingy with DH and he can't 'do' anything when she is around as she gets hysterical. He is the one who has looked after her at night as I have a newborn in the midst of all of this (he is 4.5 weeks old).
Any help will be appreciated
Belinda
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Hi Belinda, sorry to hear about your dd's diagnosis, but great that you've gotten to the bottom of the problem. Since I'm the only one on this board with my son having Celiac, I can only give you my perspective. You may want to check out http://www.celiac.com, there is a message board with a lot of experienced people.
Anyway, once going on the diet (and it has to be completely 100% gluten free to see the results) it took about 6wks for my ds to have poos that were dark, solid and sunk again (we saw positive results a bit sooner), but I'd say 6wks for those changes, his tummy has gone down a bit, but I'm not too sure since toddlers have pokey outey tummy's anyway. We have terrible night wakings, but not sure if it's linked to celiac or not. Nathan can also be clingy, but same thing, maybe just normal toddler stuff?
Sorry, I can't be much help, but 3wks does sound a bit too soon to see many changes, I think I just gradually noticed the changes, nothing suddenly dramatic.
HTH :)
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Hi Nikki
Thanks for your reply, I checked out that website and have posted some questions.
It is so hard to tell the difference between normal toddler behavour/tummy then celiac disease symptoms, thats why it took so long for us to realise something is wrong.
Her tummy has gone down a bit (it was the most noticable symptom) and her poos are getting harder but still as frequent. Her mood is the most noticable thing that I have noticed, she now enjoys playing again and giggles again too.
I guess I just have to keep waiting hey
Thanks again for your help
Be
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Hello all, hoping to talk to some experienced coeliac parents out there.My second child, Alfie-Richard was diagnosed with coeliac disease about 6 weeks ago, and has since been on a completly wheat and gluten free diet. He was breastfed from birth until he got croup at 10 months and decided to ween himself, however he became ill as soon as i introduced food.(at approx. 5 months) He was never a fantastic sleeper but after he started on solids his night times became a nightmare. He would wake with awful pains in his belly which was often followed by lots of vomiting, this would happen at the very mimimum of 5 times and anything up to 10 tims a night, which obviously meant endless trips to the doctor, which eventually got us to a wonderful peadiatritian who discovered my little chap had coeliac disease. He is now 19 months and was diagnosed at 17 months and i have seen massive changes in him since i started the diet, no more "loose" poos and no more vomiting, just a totally happy and content baby, so here is the "but", he still wakes 5-10 times every night, and will drink between 12-24 ounces of his milk, is this waking habit or is he actually hungry, it`s only 8 weeks into the diet so i`m wondering is this part of the upheavel as his system adjusts? If anyone has any useful advice this very tired Mammy and Daddy would really appriciate it. :wink:
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hallahmay, the same thing happened to my DD, but she would wake up for food not milk, evenutally I thought it was just a bad habit and one night I said not food do you want me to read you a book, and sure enough every time she woke she asked for a book, then after a few nights she stopped waking. In the beginning was was waking out of need but then it just became a bad habit, if you try to replace the milk with something else you will know for sure. We are now 6 weeks into the diet and DD has improved dramatically although her tummy hasn't gone down yet, and her poos are not solid, but her mood is incredibly different she is like a different child.
In regards to the milk are you using lactose free milk?
A question in regards to weaning and celiac, I have a 2 month old (I know I have a while yet) but wanted to know how I should introduce solids, has anyone got any ideas?
Belinda
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Hi Belinda, thanks for the tip regards the book instead of food, am definatly going to give it a try. As regards weaning your 2 month old, i know some other friends of mine would perhaps peel and wash some fruit (eg. a pear) gently boil it and then blitz it with a hand held electric mixer. Then freeze it in portions in an ice-cube trays, so you could defrost it as you need it and even mix it with breast or bottle milk. Of course you could do the same thing with veg, like, broccoli, carrots, whatever! Coincidentally carrot juice is supposed to be fantastic for the ceoliac digestive system. I hope i have been some help.
Becky.
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Does nayone know much about having celiac w/o the digestive symptoms? Liam has had what they thought was exzema since birth and nothing has worked. We have tried everything and are now looking into the possiblity of celiac. The docs are pretty sure it's not excema and they don't know what it is. I'm just overwhelmed by it all and I'm tired of them putting him on steriods and antibiotics all the time. He's had all types of skin biopsies and fungal and bacteria test and nothing showed up! They even checked for all types of rare skin disorders (includeing dermatitis herptaformis sp? the one associated w/ celiac). I guess I'm just shooting in the dark that soemone hassome sort of an idea what this might be.
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Lisa, I've been wondering how you were getting on. :)
Have you had the celiac blood tests done? Nathan has never had the diarrhoea associated with celiacs which is why it took a while for me to realise that it wasn't normal, and it wasn't eating too much fruit that was causing the small amount of problems he was having.
I do think though, that malabsorption is the main symptom though (ie there would be some digestive problems).
Nathan also had eczema/nappy rash basically from birth too on and off. Nothing would keep it away, and even when toilet trained he had a rash all over his bum. It was only with the removal of gluten that it went away. We have recently accidentally given him some gluten food and it took a week for the eczema to clear (it was over his entire body basically which was the worst it's ever been). Interestingly, the doctor gave us some steroid cream, aqueaous cream etc, we didn't get to use them though since we figured he'd eaten some gluten, so on it's own it disappeared within a week.
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They did do one test for gluten and it came back negative, but they are going to do a celiac panel and see what comes of that. I'm quite confused b/c we really have avoided all gluten for at least 3 months and nothing has changed! I just don't know what this is!
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This may have already been covered, but I haven't read through all the posts, so forgive me if I'm repeating someone else.
THere is a skin disorder that is related to Celiac. It's called DH (dermatitis herpatiformis, or some mouthful like that) that goes away on a gluten free diet, but it's not exactly Celiac disease, if that makes sense. Many of the websites that have celiac info also have info on that. It was one of the reasons I wanted Z tested because he has an eczema-like rash on his wrists and ankles.
Hope you get it figured out Lisa!
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I did not see this covered -- any thoughts?
I have gluten intolerance -- do I introduce wheat to the baby? If I avoid giving him wheat altogether, would he be more likely to be gluten intolerant?
He's now 3 months, and is on breastmilk only. I'm on a GF free diet (but it's a pain, and eating out is like walking through a mine field, so I'd like him to have to do this.)
Advice?
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Oh I shouldn't have read this thread. Cause of course you find that all the symptoms match once you read them.
My dd was diagnosed with a milk allergy in June and most of her symptoms did improve with a milk-free/dairy-free diet (constant runny nose, terrible exzema, ear infections, etc). But I'm still worried that she's not 100%. So I have a few comments and questions and would love to hear someone's thoughts.
- DD has NO sleeping issues and never wakes through the night for food
- She does however have frequent BMs (4-5/day) and they are loose, hasn't had a solid poop...maybe ever. Her veggies are often undigested (peas, corn), but all other food seems digested. Never tested the "floating vs sinking" theory though.
- She does have a distended belly, but it could just be the typical toddler puffy belly
- She is growing well, but no weight gain in months. But again, could just be due to less eating and more activity as a toddler.
Those of you with more experience, can you tell me if I'm dealing with a typical toddler or if celiac is something I should investigate further?
Lisa, don't know if you ever had Liam's allergies tested. My dd's eczema improved dramatically with a milk-free diet.
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Nikki - what great information. Thank you so much! I will mention my thoughts to dd's doctor at her next appt. And as for the upset digestive system...my dad and sister have both had "those" issues for years but we never thought anything of it besides the typical stuff. Hmmm, food for thought I guess.
Thanks again for your insight. Your comparisons to the average toddler, your dd, really put me at ease too (re: weight gain, toddler belly, etc).
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Ok, if I don't post now, I won't get back to it, so here goes!
I'm back to this discussion after just reading through it months ago when my dd (at around 7 mo?) had crazy "episodes" of fussing/passing out after I had first intro'd her to oats (5hrs later, but had oats later on in the week w/o an episode, but possibly cranky?) and barley (1hr later) during the summer. They did Celiac testing after the barley was intro'd, and it all came back negative. (However, I haven't found any research stating their exactness in infants, just adults & children. Someone mentioned something about that in a prev. post....) So, it was attributed to possibly gluten setting off acid reflux, which, actually, we realized she did have. (one of those, oh, yeah, she does ___, ____, ___, etc.)
We kept her off all gluten until just recently. Fri, Nov. 3rd, we gave her wheat, and Tues, Nov. 7th we gave her oats. No episodes, so we totally sighed in relief and brought on the Cheerios and graham crackers, which she so totally loved. (One day she even refused all food--except the graham crackers!!! And she hadn't even had sight of them yet that meal! She just wouldn't eat anything offered to her, and then I told my hubby, "Watch this." I pulled out a cracker and Oo! Instant happy child! Fabulous video clip of that! So, we hid the crackers after that night so she'd actually eat!) Right now at least 1/2 of her grains diet consists of Cheerios, if not like 80%. Come Sunday, she had this nasty blow-out right in the middle of church. She doesn't even poop on Sundays, come to think of it, not to mention during church. Then, Monday and Tuesday she three diapers of horrible-smelling yellow stuff. Yum. She had another this morning around 8:30. She normally only has dirty diapers every 2 or three days, sometimes even 5 days, and it's typically around lunch time, when she's all covered with food! :) Now, it's like breakfast, lunch, and dinner that she's filling those pants! (and leaking all over them!)
So, Mommy here is starting to get frustrated. Could it possibly be dairy-related? (lactose, not the proteins, I drink milk all the time but it's lactose-free) She's breastfed, and I'm lactose-intolerant and and splurge on occasion. I had dairy at a friend's Saturday night w/out taking a lactase supplement. I'd much rather deal with a dairy intol. than gluten intol!!!! If it's dairy, those diapers should clear up pretty soon--like today! in my book. Oh, wait, she did have mac & cheese yesterday because I was tired. That and one bite of ice cream (she was begging ;D), or was it a few bites of ice cream? :D, is all the dairy she's had as I was hoping that putting off the dairy would help her be less likely to develop lactose-intolerance problems. (Not anything I read, just my own guesses/hopes. Always forget to ask the dr.)
I have a dr. appt for her tomorrow morning (ear infection?), so I'll bring all of this up with the dr, even though he's not her usual dr. I think he may be the same dr she saw after the "barley episode", though, as her dr was out of town. Hopefully that's the case.
Oh, and she often has mucous in her poops--including in some of these latest yellow ones. Could that be Celiac or lactose related? Her dr. just kinda shrugged it off the first time we mentioned it, then the next time she said to keep an eye on it, and then when I told her about her having just a wad of mucous in her diaper one day (prob 4 days after the dairy, but after having one bout of random diarhea, but didn't elaborate on that to the dr), she didn't say anything about it. ? But, I was probably rambling off about stuff, so . . . maybe I just didn't let her get a word in.
Well, that's pretty much the story. Baby's growing/developing well, except that she is a poor sleeper (reflux?/teething?) and she hasn't gotten any teeth yet, which of course this morning I read can happen w/ kids with Celiac. However, the book didn't elaborate on what was considered "late teething", so it could just be her developmental schedule. (I'm getting tired of all of her chewing and teething pain that hasn't yet produced a tooth yet, though. This girl's been teething since she was 3mo! unless she just likes to chew on stuff when she's upset! ???)
Anyway, have a great day, everyone! ;D
Oh, and I'm wondering what this great info is that Nikki passed on to Kinlagh's Folks. . . . ;)
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Okay, here's an update:
1) no ear infection, wish me luck in my continued attempts to get this reflux med in her!
2) she only had 2 nasty yellow diapers yesterday, and then this evening one normal diaper--surprise! So, maybe this is all lactose related anyway. ?
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After reading these posts, made me wonder about my dd. She recently has had some soft poops w/undigested food (carrots,peppers,peas and corn) and I had read that was normal so I didn't think anything about it, and her poops also float at times. She is a great sleeper, eats at meal times and seems satisfied (she actually has been a little fussy and hard to feed) and she doesn't seem to have any gas or tummy pain. Oh and her bum has been sore and red(welts) due to frequent poops and them being so soft (not loose) for about a week now. I was just wondering is this all due to her teething (#5&6 are coming through) and she has a cold, or should I look into it further? She has always pooped anywhere from 2-4X a day and they have never been "hard" always formed and soft ever since she started solids, and she started eating wheat in between 6-8 months. Should I be worried??? Thanks in advance for any responses! :)
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Has anyone ever noticed a correlation between having an intolerance to gluten and breastfeeding? I am breastfeeding and suspect I may have an intolerance. I have now been gluten free for 4 days and the temperament and poops of my lo have totally changed. For the better...
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i have been waiting for lo tests to come back from consultants office for nearly 3 weeks now and it is driving me crazy.we already know she is milk,soya,fruit intolerant-butthe gluten/wheat thing has also made a huge difference.she still has gaviscon in her milk substitute but is now sleeping through the night.it has only taken 19 months ::)
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Hi all, hope you don't mind me hopping in here! My ds has an appointment with a GI specialist in a couple of weeks to be tested for IBD, Coeliac, allergy, etc. In the meantime, I've been reading like crazy on coeliac disease and have convinced myself that is what ds has. We've been GF / DF for two weeks and I have a completely new kid to get to know! However, the doctor gently reminded me that if he is on a GF diet before testing that he may result with a false negative test. :o So now that he is getting better, I have to put him back on a non-restrictive diet before going to the doctor, so they can test him and get a positive test result. ::) (if that is indeed what he has) He'll be happy to get his Teddy Grahams back again, if only temporarily!
Jitter Bug's Mom: You may have had coeliac disease, symptom free and didn't know it until your pregnancy/breastfeeding triggered it. That is what happened to me. My ds and I are both being tested since we both are symptomatic now. While bf my ds, I could not eat enough and felt weak/fatigued more than I thought I should. I stopped bf ds at 13 months, but the symptoms didn't go away, in fact I just got new ones. So, if I were you, I'd go have a chat with my doctor, mention celiac and ask to get tested.
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I know this thread is old, but maybe some of you are still around? I have a 3 month old lo who seems to be sensitive to dairy and soy. Once I cut both of those out, his mood, spit up, mucousy poops, and painful digestion seemed improved, but his poops turned dark green. They had been green on and off since birth, but most likely due to a fore/hind milk imbalance that has since corrected. So, I cut out wheat (all gluten, actually, accidentally), and they turned a more normal yellow (for a bfing baby) within two days. My questions for you are two: 1. Does that sound like any of your babies' poop? Most of you seem to have slightly older children, and you are describing pale, loose poops. 2. The ped told me not to bother cutting out gluten since she was worried I could become malnourished and green poops are considered "normal." Does that seem right to you? I'm so confused!
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I unintentionally cut out gluten from my diet while b'fd. My dr. was fine. You will not get malnourished if you cut out gluten. That is ridiculous. I chose to eat tons of potato and rice along with good fats and lean proteins. I felt great. If you suspect a GF diet would be better for your LO do it. BTW, if it's occassionally a darker color with out mucous and your ped. isn't worried then let it go. Good luck
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I'm curious if those of you who have kids with Celiac's disease stopped immunization or still do immunize? My friend stopped immunizing her son as she thought there was a link between that disease and getting autism. I have no idea.
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Interesting. Personally the whole immunization stuff is a personal choice and I something that is not dicussed easily on these threads.
I would go off the advice of your doctor.
But, I have never heard of Celiac Disease and Autism related.
Wendy
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The only relation, they have, is that both do better on a gluten free diet.
Celiac disease is an autoimmune diesease & herediatary disease.
My DH is celiac, so my kids have a 15% chance of deveolping the disease. so i monitor them closely. DD 21 monyhs & DS 2 months (he's more colic).
Austism I don't know.
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Interesting. My mom was Celiac - diagnosed at birth but back then doctors thought it was something you naturally outgrew. By her teens she was a wreck - docs had a million excuses for all of her symptoms - and it took until her early 30s, when celiac was more understood and starting to be studied and looked at for her to get a re-diagnosis. By then, her bowel had been put through YEARS of gluten and it never really seemed to heal properly.
My mom did also have some 'emotional' problems. She did some research on things and ended up with a book called The Brain Bowel Connection (or something along those lines, I'd have to look through Amazon to confirm title) and it did look at the connections between problems in the bowel - celiac, Crohn's IBS, etc - and how they affected the brain. In the end (as you can guess by the title) the conclusion is that there is a strong link between things like depression (although that's not a surprise to me given the nature of the bowel problems), autism, schizophrenia, manic episodes, bi-polar disorders, etc.
It is an interesting read, if this is something you are thinking of. I'll try to find the exact title and let you know.
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Yes, my DH, as a kid, had lots of stomach problems, then they mellowed, and in his 30is, he had an emotional/traumatic year and the problems resurfaced. This disease is trigger in adult by stressers. My neighbour is a GI and diagnosed him with celiac, looking back thinks he must of been a celiac baby. But as you said, back in the days they were unfamiliar with the disease. Now there is a lots of info. Gluten free products ...
Yes it was a change in our lifestyle, but for the best. We are much healthier and there is still plenty to eat!
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The book I have explains how babies/children back then were told they would just outgrown the disease. Once they felt better, they added back in gluten and seemed okay until in their adulthood when stress/trauma/pregnancy or something triggered it. Then they were dignosed with IBS, Chron's, Chronic fatique, anything until finally getting the proper diagnose.
I totally agree about the bowel thing and your brain. I think that is why children with autism do better on a gluten free diet because autism is a disease of the brain.
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My DH, MIL, and 2 SILs all have celiac so I am concerned for my babies. My son was tested and was negative. I am waiting for my daughter to be tested, until then I am keeping her gluten free.
I spoke to the doctor today and she said that a new study says it is best to nurse the baby until 4 months and then at 4 months keep nursing and slowly introduce gluten. Adding higher and higher amounts of gluten as time goes on.
Has anyone else heard of this or tried it?
Anna
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I nursed my DD until 1 years, I started her on cereal at 5 1/2 months, 1st rice cereal, then barley, oats,... She has no gluten intolerance. I've never gotten her tested, cause she has no syptoms. She is 22 months now. Kids only have 15% chance of being celiac. My DS is only 3 months, still solely breastfeed, I'll introduce cereal/gluten by 5-6 months.
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What test did your son get? You can get a blood test to see if you have the marker, but the only true test is a biopsy.
If Celiac Disease runs in the family that much, I would stay away as long as possible.
People who have CD, have it their entire life, but may never know it until adulthood.
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Hi all, interesting thread. Ive had a quick scoot through the pages and had some of my questions answered but I was wondering if any of you have heard about CD skipping a generation iykwim?
DS paternal grandmother has CD and she has always said that it skips generations so the chances of DS being affected are higher??? dont know if this is true can anyone help?
TIA
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Hmmm, not sure about the skipping generations thing, but if there is a family history, often you will find that other auto-immune or digestive disorders such as Crohns, IBS, etc also run in the family. My mother was celiac, and so I am aiming to keep DS off of all gluten until 12 months, which apparently gives plenty of time for the small intestine to form and for the villa to get stronger and the seive-like walls to be strong enough to be able to process the gluten. (That said, I have trialed oats this week, as some celiacs can eat oats, and we've had terrible results :( )
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I just found out in Canada you can claim Gluten Free Food as medical expenses and this will help at tax time. Does anyone know if this is available in other parts of the world? Here is the information for Canadians: http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/clc-eng.html
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I just found out in Canada you can claim Gluten Free Food as medical expenses and this will help at tax time. Does anyone know if this is available in other parts of the world? Here is the information for Canadians: http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/clc-eng.html
Oh Melanie thanks so much for posting this. It almost made me cry! It doesn't affect me, but as I've posted before this was one of my mother's big campaigns, she worked and fought so hard to push the gov't for this, as when she was really ill with her celiac the gov't still hadn't recognised it as a medical expense. She worked for years campaigning, raising awareness and rallying her other celiac friends together to write letters, work with MPs, etc to fight for this. It must have come into place since she died, and I am so happy that it went through, even though she wasn't around to see it.
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Oh wow. Sounds like quite a woman. I think it's great. I always wondered what people do in those situations where money is tight and Gluten Free food, along with other Top 8 Allergy Free food, is more expensive. I'm glad there is something now for people. :)
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In the UK you can get gluten free foods on prescription without a problem if you have coeliac disease. You do have to pay a charge for the prescriptions if you do not qualify for free nhs prescription. However you can order in bulk on prescription so I think it probably works out cheaper for most items.
Kelly
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Hi, I have coeliac disease - got my diagnose in my 20s - so like 10 years ago. I have kept a close eye on DS (now 22 months) and how he reacts to wheat and gluten, and must say I am getting more and more worried. He is very windy (smells like there's poo in the nappy, but most often there isn't), 1-2 loose poos a day, some eczema and nappy rash - apart from that he is a happy boy, sleeping very well and gaining weight - has always been on the 98th percentile! That is why the GP says to me not to worry, because DS is big. But what else could it be? Should I try to exclude gluten or dairy from his meals for a couple of weeks and see if that helps? Or is it better to have the blood tests done before you experiment with food?
Thanks for any input!
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If you are having a blood test done, then I believe that it is just an IgE "marker" they are looking for which should be present whether there is gluten in your system or not. You can get home tests, I know you can get them in Canada but the company I know will not ship outside of Canada. There must be a similar product in the UK although I have never looked. If you google for it you may find one. It's not 100% accurate but it is a good start.
If you are having a bowel biopsy done (which is the ONLY accurate way to diagnose celiac for 100% certain) then if you have gone onto a gluten free diet and the bowel has repaired itself then it can cause false results. So in this case you need to be eating a "regular" diet for a time period before the bowel biopsy.
Probably the best way to do it is go gluten free for your son for a time period and see if he changes, and ask the doctor for a blood test.
The thing is, at this age lots of LOs are windy and have loose bowel movements, 1-2 a day is normal I think, and eczema and nappy rash aren't really signs of celiac disease -- just toddlers. Windiness can be caused by lots of foods and it might just be his body getting used to digesting them as his system is still young an immature. Foods like beans, cabbage, brocolli, etc all cause windiness! Eczema can be food related or environmental or even just sensitive skin. I wouldn't worry if those are his only symptoms - they seem really toddlerish rather than celiac. IMO!
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Im also a coeliac, carefully watching my babies for any signs. My 4 year old is still not showing any symptoms and I am keeping the 8 month old gluten free for the first year, just in case, I don't want him to get ill when he is this little. I will however get them tested immediately if I have any reason to suspect gluten intolerance, and actually, I will probably test them anyway, I know I didn't have any obvious symptoms myself. And just a blood test, why not, probably one less thing to be worried about.
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Just had a chat with my specialist and we discussed testing children without very clear symptoms and he is very much against it. He says the chance of a false positive blood test is v high in children without symptoms, and then you end up needlessly forcing a tube down a childs throat under general. So actually, I will not now get them tested unless we have serious symptoms lasting for more than a month, failure to thrive etc.
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hi i wana know if if i can't drink diary products then it is really necessary for me to go for a celiac test? right now i can't drink milk and the things those r made of milk . if i will drink then probably i'll get the diarrhea soon . so help me to figure it out what can helps me ?
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Hello folks,
just wondering about experiences with false positives from blood tests for coeliac disease?
I'm taking LO off for the blood test on Friday afternoon (they almost did it last week but botched it so we have to go back to the hospital again, argh). There's coeliac disease in my family, I don't have it, but LO has had very large, soft poos (always poo in the coeliac discussions!) for some months now, he's always hungry (or saying he is), isn't particularly tall for his age and, having kept a food diary for him, it does look like there's a pattern.
The docs seem to be relying on the blood test rather than the other information we've provided so that's why I'm a tad concerned about false positives. Thanks for any help!
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Tagging along as i appear to have gluten issues too!
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Deb, sorry to hear you have issues. We're off for our blood test today and going on a GF diet after that just to see what that does for himself.
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Can I tag along. DS is undiagnosed at the moment but the paediatrician seemed very interested in the fact that DH has pernicious anaemia and I know that goes hand in hand with coeliac. CD is just one of many possibilities for him at the moment but I don't want to lose this thread as DH and I both have a feeling that there could be something in the coeliac angle.
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Wow, forgot all about this thread! Been gluten-free now for a few months and LOVE it!!! The chronic joint pain is GONE, and except for a recent bout of sciatica which has slowed me down some (temporarily, mind you!) which has caused me to gain back a few pounds, I lost 10-15 pounds in the last few months between the loss of excess carbs from grains and some increased exercise that came with a temporary teaching job. :) I also have been able to go off my thyroid meds (I have Hashimoto's) doing this, and my migraines have also gone away. :)
I didn't have any reaction in blood tests and my (former) doctor said I could have all the gluten I wanted and it wasn't causing problems, but phooey, I feel better, which to me only validates the invalidity of the blood tests. :(
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Deb, that's interesting you had chronic joint pain - one of DS1's symptoms is that his knees swell up at intervals and he is unable to weight bear. The swelling only lasts a short time but we are convinced he gets pain in between the swellings.
The more we look at it, the more coeliac seems a possibility. We're going to wait until we hear from the hospital before we try an ED with him though.
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Sorry ladies - I have what is probably a silly question.
DS2 is showing signs of reflux or a food intolerance. I took him to the docs today as the Gaviscon is only having a very limited effect for him (and starting to bung him up). It was a different doc and I told him that DH has perniscious anaemia and that I suspect he may have CD alongside it but refuses to go to the docs about it - I asked if it was a possibility with DS2 and he said that it is always possible when there is tummy trouble so has given me a blood test form and told me to book up with the hospital.
So, seeing as I've been trying a wheat and dairy ED for about the past week (which I didn't own up to - they get a bit freaked out at the word 'diet' from a BF'ing mum) is that likely to scew the results? Do I need to quit the diet until he has the test and then go back on?
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I'm pretty sure you have to still be eating gluten for the test to work - but that said, false negatives abound on these things. I'm living proof.
The best test in the absence of actual gut damage - which happens when the problem is already bad! - is apparently a DNA test. And most doctors don't even know about it, much less are amenable to doing it. The DNA test doesn't tell you for sure if you HAVE celiac, but if you have the gene for it, which would predispose you to it. Here's a link to some more information about that test, both the pros and cons: http://theliberatedkitchenpdx.com/basics/celiac-testing-myth-dna-proof/ There are links at the end that I haven't read yet but definitely will.
On a different note, I looked up the DF links to find pictures and I'm 95% sure that Josie's rash is DF. I don't know if I can get her doctor to do the skin test - they take a small sample of skin from around the rash and test it for antibodies to gluten - but if we can, it would help us to understand how sensitive she is to gluten and whether we even need to avoid trace gluten; right now I'm not reading labels to see if things are processed in gluten-free facilities the way a full-on celiac patient would have to, but if I have to go that route I do have a couple of stores near me that I can go to for true gluten-free foods and resources, plus with all the scratch cooking I do, I can modify things for her.
Edited to add: Here's another link to one of the links at the bottom of that last one, in case anyone doesn't want to click them all: http://theliberatedkitchenpdx.com/physical-health/celiac-testing-myth6-negative-results-no-problems/ This is the one I wish I'd read before my own iG testing for gluten intolerance. But at least by then I knew to not trust the blood tests and I went ahead and did my own thing anyway. LOL
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Thanks Deb,
TBH I know that the blood test isn't that accurate but since the docs freak out at the mention of an ED I'm *hoping* that the test will work out for us. It would be so much easier when dealing with people generally if I have the backing of a formal dx. I tend to get looked at as a bit of a nutter even over DS1 and his reflux, which improved massively with medication, especially by the IL's. People don't believe how bad they get.
I think to be honest that if the blood test comes back positive I will push for a Dr supervised ED and food challenge rather than any other invasive testing. It's daft really because I can't get a blood test done for a couple of weeks (under 3's have to be booked in at the hospital) by which time I could have been well on the way with a diet - by the time the results come back I probably could have finished the diet and done the challenge but there we are. Apparently it's not possible for a BF'ing mum to eat healthy and get all her calories and nutrients if there is even a whiff of restriction.
If the test comes back negative I will still push for a supervised ED (purely so that it is all in his notes and the results can be recorded at the surgery) on the grounds that he is certainly intolerant to something.
We haven't really seen much improvement with me avoiding wheat and dairy but tbh I have mucked it up a couple of times - misreading lables etc - and I guess if it was celiac then avoiding wheat wouldn't be enough.
In the meantime, I think I will try to stick to dairy free but reintroduce wheat for now, just until they have taken bloods.
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Sorry ladies, me again.
DS was tested on Tuesday (blood test) and we are awaiting results. I'm back on a wheat and dairy ED as of Wednesday morning (did a big shop on Tuesday afternoon after a week at my parents) and DS is already much, much better at night. Surely that is too quick?
He had an ear infection last week (which I have suspected for some weeks but keep being sent away as his ears looked clear) so I expected the abx would give some relief but he was as horrendous as ever and very grumpy in the day. Almost the second I stopped dairy and wheat he is much happier and, although it's still far from perfect, sleep is much better. Is this the placebo effect? I'm fairly certain if he has coeliac he wouldn't improve that fast, would he?
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While it can take up to a couple of weeks to see changes in some people after starting an ED, it's possible to see changes in less time. as the bulk of the offending food isn't getting in any more, and then further improvement as the rest of the leftover proteins are processed out.
As fr the abx, if they're causing tummy upset, they would improve one set of symptoms while causing another, so probiotics would help with that. There are dairy-free probiotics out there, but you have to hunt them down. I think Culturelle makes one. :)
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Thanks Deb.
I previously used Optibac (it's an icky powder type) which seemed to help with colic when he was younger but hasn't seemed to help lately. It doesn't list dairy - just potato starch, fructooligosaccharides and a string of probiotic cultures. Haven't tried giving it direct, I've just taken it myself and hoped he would get it in my milk.
I don't know whether to keep FX that the ED helps, or that it doesn't.i
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Probiotics aren't food proteins like gluten or casein, but organisms on their own. I don't think they can be given thru breastmilk but have to be ingested directly. They live in the gut, and aren't carried in the bloodstream, so I am pretty sure that breastmilk wouldn't be the way to transfer them. You could try some on your nipples while you nurse; I did that with Natalie as a baby. :)
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DS was tested on Tuesday (blood test) and we are awaiting results. I'm back on a wheat and dairy ED as of Wednesday morning (did a big shop on Tuesday afternoon after a week at my parents) and DS is already much, much better at night. Surely that is too quick?
It can be that quick! - not sure if it is with Coeliacs though, that is a different kettle of fish as far as I know.
However if he is on abx then it can be hard to tell. They affected Olly's digestion hugely - we dreaded any infections that needed them :-X
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I spoke too soon :( He was up much of the night. Sick this morning. Screamed blue murder all morning and went down exhausted for a nap at 8.15 this morning.
We had stir fry last night but onions don't seem to upset him if I eat, say, bolognase (with gluten free pasta). I used a jar of sauce but the ingredients looked safe.
My Mum suggested putting him on an allergenic formula so that what I'm eating doesn't confuse things but the thought of stopping BF'ing makes me a bit emotional. Am I being selfish?
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Hang on. He got hold of DS1's (empty) bottle during bedtime last night. I wonder if he got a couple of drops of milk off the nipple before I removed it. Hmm. It was goat's milk though.
I'd rather be dealing with a dairy intollerance than coeliac...
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I'm MPI and I can't drink goats' milk either (unless it's raw, in which case I can drink cow or goat). So if he's truly MPI, that could have been a trigger.
Yeah, formula is nice because you KNOW what's in it and it's (theoretically, anyway) consistent all the time. But in many ways that's also the beauty of breast milk. And there's no guarantee that it won't take several different tries of formula in the event he reacts to something else in the formula that you don't know about yet.
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Deb, escuse my ignorance but what is raw milk? Would that be straight from the cow/goat? My friend's husband is a farmer and she keeps a few chickens and a couple of ponies - maybe I can persuade her to get a goat - I am such a horrible friend ;)
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Yes, raw would be unpasteurized. You do have to make sure it's nice and clean, mind you, but yes, as close to right-from-the-animal as possible. There's a site you can search in Britain to find farms that sell raw milk.... lemme see if I can find it.... ah-hah! http://www.realmilk.com/where-other.html#uk
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Cool, thanks Deb.
At the risk of going off topic - how does that work, the MPI but can drink raw milk? Does the pasturising/heat treating affect the particles or something - like mixing breast milk with formula?
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Milk comes with its own enzymes. The theory goes that pasteurizing kills the enzymes and thus makes the milk hard or impossible to process in the body. If you try it be sure to use a reputable farm. There's a reason pasteurization became standard practice in the West. :( I've seen a 4YO who got hives from regular milkndrinknraw from a cup w/no ill effects at all, to her mommy's delight. :-)
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Now that DH is celiac positive, I found out the cost of his specialized breads, baking items are tax deductible as medically necessary! Anyone else doing this??