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Need Moral Support And Advice For My 4Yo

megsybeth

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megsybeth Enthusiast
megsybeth
Posted

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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Mayasmum Rookie
Mayasmum
Posted

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.

shadowicewolf Proficient
shadowicewolf
Posted

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

Takala Enthusiast
Takala
Posted

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.

mamaupupup Contributor
mamaupupup
Posted

:) 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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      By Dr. Gunn · Posted

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      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
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