Celiac Disease discussion

[bobby's mama]

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.

[Nikki~Nathanamp;Danielle]

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.

[bobby's mama]

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!

[alligirl]

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!

[kc456]

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?

[Kinlagh's Folks]

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.

[Kinlagh's Folks]

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).   

[Hannah's Mom]

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  ), or was it a few bites of ice cream?  , 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!   
Oh, and I'm wondering what this great info is that Nikki passed on to Kinlagh's Folks. . . .

[Hannah's Mom]

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. ?

[sophiasmommy]

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!

[~Kiki]

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...

[jennyh]

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

[cubritmum]

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.    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. 

[kcamelia]

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!

[fitfamily]

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