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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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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

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      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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