BabyWhispererForums.com
EAT => Food Allergies => Topic started by: rinajack on December 19, 2008, 04:39:49 am
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Hi all
Zara is now 2.75 yrs old. For many months now (could even be up to a year?) she hasn't been eating much. I cannot pinpoint exactly how long because I tried not to worry about it or focus on it. More recently (as in maybe 4 months) she started randomly complaining "I feel sick, my tummy hurts". This was said probably every other day, at no particular timing or event (eg meal). But her main symptom is definitely poor appetite. I am really happy with her eating in a day if she manages 1 whole weetbix, or a banana, plus the few small other bites she "might" take in a day (sometimes she doesn't take any). Like I said, that would be a pretty good day. It is not fussiness, she doesn't finish junk food either, and often refuses junk food altogether also.
I had her at the Dr for something else, and she weighed Zara to check her weight for a dosage calc, and when entered into her chart, commented that she has slipped through the chart quite considerably, and that she thought Zara should be investigated by a paed. We have done that, and in the time Zara has been seeing the paed (just over 2 months) she has actually lost .5 kg, leaving her at 11.5kg (so lost over a lb, leaving her at about 25lbs). She has grown taller in this time. (about 3cm or just over an inch). I have not been one to watch my kids weight closely, however I think she hasn't gained any weight (or gained and kept on any weight) in over a year now.
She has tested negative to Coeliac Disease, and has no viral or bacterial infections. Has had an ultrasound, and stool samples both indicating that her "gut" (intestine) is inflamed, leaving white cells (pus) in her stools, and her lumph nodes around her gut are raised. So something is going on, but nothing obvious iykwim.
She was put on Pediasure (high calorie formula, no dairy, no gluten) but still lost weight (although honestly, since she doesn't like to eat, she doesn't get too much of that, but the 1st two weeks were great, until the novelty wore off). When she was drinking this, she also ate much more, but that brought about increased frequency of compaints about feeling sick and tummy pains (increased to several times daily).
So, paed is now recommending consultation with a paediatric GI, who may or may not suggest either colonoscopy or endoscopy. In the mean time, paed has suggested that we start Zara on InnerHealth powder (good bacteria), and begin an elimination diet - removing wheat/gluten and dairy (she did better on soy formula as a baby but we thought she had grown out of this issue). Leaving not much really :P. We are going with eliminate most stuff, then add back in to see if we find a culprit.
Incidentally, I have noticed that Zara is now sleeping about 13 hours per 24, the most she has slept since prior to 1 yr old, and I don't know wether this is related, or whether she has finally grown into being a "good sleeper", since she was NEVER a good sleeper.
Any advice on where to find info, what she can eat (and me, I am doing this in sympathy with her), recipes etc. What symptoms would we be looking for if it IS food intolerances? Can you think of anything else it may be? Paed is not ruling out coeliac, since the only 100% sure way to test is to look inside.
Any advice, hugs, info will be welcome.
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{{Hugs}} So what exactly are you eliminating?
--Dairy
--All gluten
Anything else?
I have more to write, but my eyes are about to fall out of my head, so I'd better go to bed and come back tomorrow. :-*
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That is it for now, but we are including hidden dairy.
Thanks Bethany. My mum thinks I should leave all as is, that all of us kids were small kids. BUT we were also small babies, which Zara was not (average to above average) and didn't complain of tummy pain. And we ate reasonably well too, so I don't feel this is the same at all.
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Hi Rina, I hope your lo feels better on this diet. If it makes you feel any better my daughter is going to be 3 in a month and only weighs 25 lbs. She hasn't lost any weight, but she keeps getting taller, she is really tiny though. She's a picky eater.
About Pediasure, you say it was dairy and gluten free, but on their website they list it is "lactose free" and "gluten free", but it does contain dairy and soy. Here is their website: http://abbottnutrition.com/products/products.aspx?pid=224 Perhaps the doctor thought it wasn't a dairy issue, but a lactose issue. Which could have been why your daughter still complained of tummy pains.
In regards to elimination here is a thread on this board listing all the hidden ingredients of dairy, soy, and gluten. I know a lot of babies who cannot tolerate dairy cannot tolerate soy either, so just keep that in mind if you find no results and she's still consuming soy. http://babywhispererforums.com/index.php?topic=135427.0
In regards to recipes and more information I recommend this site: http://www.kidswithfoodallergies.org/community.html
You need to be a member to have access to the recipes, it's $25, but it's well worth it. They have a huge databank of recipes. You can tick off which foods to avoid and it will pull up many items, either breads, cookies, candies, main courses, etc. They also have a great message board, with many experienced posters with varying issues, not just food allergies, but other types of intolerances as well. I don't believe you need to pay membership to have access to the main general board, which is a great place to ask questions.
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Out of curiousity what kind of food does she usually like to eat?
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Hi Rina:
Can you get in really soon with a GI doctor? More than likely they will want to do an endoscopy and take biopsies. If something is going on and you eliminate gluten and dairy and that is the culpit, then everything may look fine and you will never have a deft. answer.
I went through this with Zach (3 yrs old). When he was 15 months old, he was having diaherra, everything was coming out whole, you name it. After many test they did confirm that he had very low antibodies and he was getting repeated infections.
Once I removed all dairy and soy and started a good gluten/dairy/soy free probiotic, within 4 months he was like a new kid and he has not really been sick since.
Now at about 2 years old, after Tyler was born. He started complaining more of stomach aches and pointing to the top of his tummy or his throat for reflux, he started vomitting at least 2 times a week. That is when we decieded to do the endoscopy and it showed nothing, just reflux.
At the same time, someone also asked me what I was cleaning with. I used to clean everything with Clorox Wipes. I switched to an All Natural Cleaner and I sware shortly after he stopped complaining, no joke.
We also did a test for Delayed Gastric Emptying, which he does have. The food sits in the stomach longer than normal, causing it to become sour or reflux back up. I personally have this and with certain foods, the only relief is to throw up.
Pediasure is a great product, BUT it contains both Dairy and Soy protein. It is lactose and gluten free though. There is also a lot of sugar in it, but it does have all the vitamins, minerals, etc. that such picky eaters need.
Zach still drinks about 2 to 3 8 oz. cups a day and still eats 3 meals. I think this is why he has grown so much.
Just wanted to share our stories, because it is worth looking into. If you can't get in with a GI doctor for months, I would eliminate all dairy first and see how it goes. If no improvement, then try wheat. But, if she does have celiac disease and she is not digesting wheat, then the biospy test will be negative.
Please keep us posted. If you ever need to talk, I am here, because I have been through all this with Zach. Feeding clinics, GI, you name it.
Hugs, Wendy
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Just marking, bbl when my two snot monsters are quiet. HUGEST of hugs, Rina xx
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Here's another recipe site: http://www.cookingallergyfree.com/
My DS has similar tummy issues (and odd colored mushy poops) if he has even a hint of dairy! We were letting him have bread where the final ingredient (meaning there was just a tiny bit of it) was milk and he was having all sorts of tummy and bowel issues. He was constantly putting his hand on his tummy like it was bugging him and saying, "tummy broken." Eliminating every trace of dairy has helped tremendously. It can take up to 2 weeks to see results though as the protein can linger.
{{hugs}}
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Thanks guys.
Melanie - The foods that Zara likes to eat are fruit, bread (with nothing on it), cheese and veggies...if I had to sum it up. She is not really a fussy eater, just doesn't eat much iykwim, although she really doesn't eat much protien. I also understand that Zara is not unusually small. The reason this was identified is because she was about average most of her life - around the 50th percentile, and was often even more than that, closer to the 75th (for weight). Now she is under the 25th, closer to the 10th I think. Will run off in a sec to check our Pediasure - Dr def said no dairy in it, and she is sure this isn't lactose, was more thinking MPI. I am aware of how common it is to be MSPI instead of just MPI, and am exluding most soy, but not hidden soy. Am excluding hidden dairy (trying very hard anyway). OK checked Pediasure - let me guess, the culprits are Sodium Casinate and Whey protien concentrate?
Wendy - Being the Xmas period, and because we live rurally (nearest GI is about 7 hrs drive away, and there is just 1 in that town, the next nearest is 10hrs drive, and although there is about 6 there, it takes even longer to get in) it could be close to March before we get in. Paed is trying to arrange a video linkup consult, where they can at least decide on the need to scope or not, and if so, then that can be done at the 1st available appt, instead of waiting for an appt, deciding on the scope, then waiting for the next available time for that iykwim.
Zara does not have diarrhea and never vomits (I mean NEVER not for about 18 months I would say). I have tried to ask her Qs about reflux, but she says no to everything I ask. Her tummy pain is lower, like belly button low. And it isn't bad enough to make her cry, just bad enough to mention to me and want a bit of a cuddle for a minute.
Paed did say that if Zara does well off the gluten, we will have to add it back in before any scopes, otherwise we won't be able to see if coeliac or not.
Can I ask for a moment of total honesty - do you think based on the tummy complaints (not particularly distressful to the child) and the lack of appetite and growth - would you put your lo through a scope? or even an elimination? It feels so harsh on a child who appears to be mostly well iykwim. I have so much self doubt about this, I guess I need to be reassured that I am not overreacting iykwim. Then I think on the other hand, if it DID turn out to be Coeliac, most people are adults before diagnoses...would I have put her through a childhood of discomfort for nothing? :\
Thanks Michelle. Right now it feels like there is just so little she can eat :P
Is Saturday now, will call Paed on Monday and mention the Pediasure contianing milk. Zara complained of tummy pain so much more when drinking it (and eating) but now I am thinking that is a pretty obvious connection, so maybe we should just exclude dairy?
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{{{{{hugs}}}}} Rina, hope you get to the bottom of this soon xx
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Rina, yup, those would be the culprits.
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we have simmilar issues here rina.
india is neg on a bloods to celiac and tbh at the mo i am holding off on her gluten so am not willing to have a biopsy.
we have gluten ,milk and soya free bread here but the nhs provide this.corn pasta etc .
india took weeks to start to pick or graze at her food after the change but we got there.not where i would like to be but better!
i also noticed her mood totally changed,no crying,whinging,clingingness or huge moodiness.
hugs.
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Oh interesting jenny - moodiness is something I comment on about Zara all the time!
After reading the posts on here and learning about the dairy in the pediasure, I am almost certain now that our culprit is MPI. When she was drinking the pediasure, she complained of tummy pain so much more often. And, when I think back, she started complaining of tummy pain at a time when we were trying to get hugh to eat solids (issues with total food refusal due to reflux) and were giving them both much more custard and yoghurt than normal. Incidentally, that was when Hugh's reflux flared up too, so most likely they both need to cut dairy, which I am starting for Hugh today. Based on these observations, I am going to skip eliminating the gluten at this stage, and will call the paed on Monday to tell her my decision. If there is still no improvement by the next appt with the paed (22 Jan) then we can cut the gluten then.
Thanks so much everyone, I feel so much more comfortable now that I feel like I have connected some dots iykwim.
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Hi there. I think you are doing 100% the right thing right now.
Dairy is a lot easier to cut then gluten, IMO.
Why do they suspect gluten? Does she have a lot of very loose, very smelly bowel movements or is because of the weight lose/going down on her growth curve?
I am friends with a mother and her daughter has celiac. Up until about age 2, she always always had extremely loose poops,never formed. She nursed her until age 2, so she was getting via milk and the foods she ate. Once they took the gluten out, her bowel movements got better.
Just an FYI: If she does okay on Soy Milk, then there is a Soy Pediatric Drink that you can get just like Pediasure. www.brightbeginnings.com/product-soy-pediatric-drink.aspx
Will she eat eggs or have you tried peanut butter? These are great ways to get her to have protein.
PB on a piece of whole wheat bread is a complete protein. They also make soy yogurts, etc. If you see that she can have them.
I think you are doing the right thing though. And I am with you about not knowing what to do about the scope, if it comes to that. It took me 3 years to finally decide to do Zach's. I just kept talking myself out of it.
On one hand she seems well, happy, but just some tummy pain, but on the other hand, she is dropping off her weight curve, not eating well and you would feel so bad if something was wrong and you could fix it. I went back and forth so much, but in the end I am very happy I did Zach's scope. I know now that it is nothing major and if it had been I would have been mad at myself for not doing.
So IMO, I would go off ALL dairy and see how things are going. If no improvement, then I would consider the scope.
Hugs to you..... Wendy
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You seem to have a confident plan Rina. Let us know how it goes. :)
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Thanks everyone.
Stacy, thankyou for encouraging me that I am not overreacting. FWIW, everyone except my DH (so everyone not in my home) thought I was overreacting about Hughs reflux too, and when it flared even DH said it was behavioural not medical - then was proven wrong when I saw a dr and restarted the meds for hugh. Now with them finding that there IS inflammation in Zara's gut, he has been proven wrong again, as has everyone else (although they won't accept that).
Re the blood sugar - Zara is the only kid I know of whos behaviour improves when I give her sugar to eat. Which tells me she had low blood sugar and was feeling tired and crappy until I gave it to her iykwim. With Zara, I have on numerous occasions resorted to giving lollies to my cranky daughter in the hope it will improve her mood (not because she asked for them) and then found it did help. I know sugar is not the best answer there, but when she is hardly eating it is sometimes the easiest option to get lots of energy into Zara with a small quantity of food. We still have a 1 treat a day rule, so if she doesn't ask for it, I offer it when I feel she is getting into one of those moods....
As for eating eggs and peanut butter - I offer, but getting her to eat anything most times is an issue.
Stacy - you may remember that Zara has never been a good reliable sleeper - do you think it could have been related to this all along? (Made worse by the fact she is spirited?)
Thanks for the mention of soy pediasure equivalent - I am not sure if I can get this where I live, but will call the pharmacy of a town 1.5 hrs away that I am going to on Tues and see if they have any. If not, will try to order some online and have it posted.
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good plan.
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big hugs rina!!!
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Hey Rina, Funny you say that about the sugar. Zach is so similiar. I know sugar is a quick fix, but it really does seem to help his mood a lot.
Stacy, I did not realize inability to maintain blood sugar can come from DGE. Gosh that makes perfect since because both Zach and I have it.
You are a wonderful Mom Rina!!! My DH and family has also doubted me, but you know when something is just not right.
Hugs to you and let us know if you can get the Soy Drink! Wendy
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Just sending you hugs Stacy, I just read your post. Sounds a lot like me... I can relate to you. I never knew the high fat, low fiber for DGE or just feeling so sick after eating.
Funny because most say increase your fiber....
P.S: For both of you, Allergy testing may be a good thing if you have not done it. I have always had tummy problems and came back allergic to potato's. Since cutting them out, my bm's are normal, but I still get a stabbing pain in the top of my stomach when I eat a lot or certain things.
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{{hugs}} to everybody! :-*
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*why is the site changing m.a.r.k.i.n.g to ooops!!*
Rina, I have read through all the posts, and although I don't have any advice to offer, I would just like you to know I will be following along and hope everything works out well for your little girl xx
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Thanks Michelle.
It has now been 1 week without dairy. And today, she ate the most she has eaten in a day for ages, and she didn't do all that badly yesterday either.
For breakfast, she ate 1/2 a peice of toast with non-dairy butter and half a fried egg. No morning snack, but she had just split her lip open and was simply in no mood for food. Lunch she ate a whole 2 slice a bread sandwhich with non-dariy butter and non-dairy peanutbutter (she may have even eaten more than that, I made 2 sandwhiches and she and Hugh were sharing), then she ate 2 large slices of rockmelon (canteloupe). She had a couple of crackers in the afternoon, and a "snow cone" (crushed ice with cordial on it). Didn't really eat any dinner maybe a mouthful or two. But then did eat a peice of dry bread. Lots of diluted juice (V8 veggie and fruit, and apple juice), and some water.
She ate almost as well as that yesterday, and the day before that managed a whole banana and a whole piece of toast , with a couple of odd bites here and there. So, I really think this may be starting to work already? We can only hope...
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That seems like a significant amount of food to me! Yay Zara!
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Hi everyone....we need more help.
Zara has been eating up a storm, which is great! I started giving her soy yoghurt about 5 days ago, and I didn't quite make the connection at first, but she started complaining of a sore tummy again, and now she has gastro like symptoms, but her poo is very very green. Does this mean she is MSPI not just MPI? Or does she simply have gastro?
Also, I had not eliminated any soy, if you think it is the soy, do I need to eliminate all, or just major sources....thing is, I live in a remote place, and getting bread etc without it in will be quite difficult. I had thought she was doing ok prior to the intro of soy yoghurt.
Also, we knew zara was a bit MPI as a baby, but she did well on soy formula.....just thought I would throw that in in case it sways what you think above.
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Hmmmm . . . I'd tend to vote to eliminate all soy, including trace amounts for a period of 3-4 weeks. If that goes well, then, I'd add back in trace amounts. That's just me though.
You can back your own bread. ;) Actually, I can't find any bread that doesn't have trace milk, so I bake me own just because of that.
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Hi guys.
New update. Not changing anything with the soy just yet, because Hugh, Daddy and Nana (who is visiting) have all also come down with gastro. :P
Will wait and see once everyone is feeling better.
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How are things going?
Kelly