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Need Moral Support And Advice For My 4Yo
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Hi Everyone, I would love any advice from parents of young kids with celiac for the first few months. And I just need reassurance that I'm on the right track. The problem is I have a celiac specialist but my son hasn't seen one yet so I don't really have anyone to ask. His old GI, who did the testing and endoscopy doesn't believe he has celiac so I can't really ask her if he's on track. (Just for background, my son has had slow growth and weakened teeth for a few years, I thought he was tested but realized he wasn't tested for celiac, then this summer he started getting major diarrhea. He's actually had diarrhea almost daily since August. Also he has some poor nutrient levels and other signs of illness on blood work up. First couple of celiac blood tests came back negative but, because of diarrhea, GI went ahead with endoscopy/colonoscopy. I also talked her into doing another round of tests and she did full panel through Prometheus. He came back with DQ2 gene, which I have (as well as diagnosed celiac) and a strong positive DGP IGA. Biopsies were negative, but I'm having the pathologists at another hospital look at them.)

He's been off gluten for two weeks and still having diarrhea and bloating. I'm trying to be patient and also realize the gluten-free diet might not cure everything. I'm pretty sure lactose is the issue because I've tried to keep him off it and he seemed to do better this weekend. But today I let him have macaroni and cheese (gluten-free of course) and he blew up like a baloon and had pain and diarrhea.

So I've cleaned out my kitchen, trying not to eat out or get processed food, now I'm goiing to keep a food and symptom log for him and be strict about lactose. But please tell me I'm on the right track. I see a celiac specialist on the 28th of November. I hope she can confirm his diagnosis or at least confirm something besides indigestion is wrong here.

Also, is there anything wrong with giving a little lactaid to get him through Thanksgiving? I mean, whatever's on the menu, I get to drink wine! The kid should at least be able to enjoy some gluten-free cookies and dessert with gluten-free ice cream.

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From the reading I have been doing lactose intolerance can go hand in hand with celiacs. All of my family have a problem with dairy. We drink coconut milk instead, and there is coconut icecream that is delicious! So Delicious is one and my favorite is Larry and Lunas icecream - it tastes like the "real" thing.

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does he play with playdough? or anything that has gluten in it?

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He might be able to get some lactose back, but first he's going to have to go off of it for a while, because the same part of the intestine lining that got damaged by gluten, is the part that digests lactose. If he's really sensitive to all dairy now, there are lots of non- dairy alternatives, as mentioned above. And there is no reason I can think of that gluten-free cookies cannot also be made dairy free cookies, with all the milk alternatives and butter alternatives for the "fat." (you can even make cookies with olive oil, besides palm shortening or coconut oil) He may be able to eventually handle things like butter, cream, yogurt, hard cheeses in reduced quantities, if he does not also have a casein (milk protein) problem.

Of course you are on the right track, don't let any doctor tell you that a major gut malfunction is "normal" if it responds to the elimination of a food protein category, with that family history, symptoms, and the blood test result.

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:) You are a GREAT mom and are on the right track! It is difficult at first and you will definitely find your rhythm. We talk all the time about how awesome it is that ice cream is gluten free (we often eat the coconut milk ones and have made three batches of homemade ice cream for Thanksgiving--lactose free, one dairy free).

Yes, find some non-provocative "treats" for him for Thanksgiving...and keep telling him/yourself that having Celiac helps you be really healthy--that you're taking care of your bodies so you can really enjoy life!

BTW, our twins and I were all diagnosed this calendar year. Last Thanksgiving one of our girls ate tons of pasta and vomited a half dozen times after our feast. I promised her I wouldn't serve pasta of ANY kind this year. She was so thankful! Sometimes it's about feeling "not bad" and sometimes it's all about feeling good!

Thinking of you! Happy Thanksgiving!

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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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