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Problem For Parent Going Gluten Free?

mmmomx2

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mmmomx2 Rookie
mmmomx2
Posted

My 5 yo son just tested positive for a wheat allergy, and I suspect celiac is the real problem. Although he hasn't complained of GI issues (but had them when he was younger), he has many other symptoms, and I suspect his low weight (he's 32 lbs), which started our medical journey, is part of it. He was scheduled for an endoscopy in a few weeks, but I decided to put it off for now, since we have already started the gluten free diet, and he has refused to go to any more doctor appointments (he also has sensory processing disorder, and all of these visits have been really hard on him).

However, my question is actually about me. This is our fourth day of the diet, and my GI symptoms have been outrageous since we started! I've always had some mild GI issues, and nausea, but I've attributed it to my dairy and soy intolerance. This has been pretty constant since we started the diet, from gas and bloating to GI, and it starts from the time I wake up, which I've never had before. I don't feel sick otherwise, but my energy the first three days was pretty low. Has this ever happened to other parents? Would this indicate that I might have a gluten issue? Thanks for any thoughts on the issue!

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TotalKnowledge Apprentice
TotalKnowledge
Posted

There seems to be a genetic component to Celiac's Disease. It is well within reason that you could have it as well. There can be a withdrawal period when starting a gluten free diet. If you notice some things bothering you more, and others bothering you less, this could be what is happening.

Maiko Newbie
Maiko
Posted

I've had some similar thoughts myself. My boys were recently diagnosed and our household is going gluten-free. My husband, daughter and I are still waiting for test results....

I'm expecting #4 and asked about eating gluten-free and have eaten a lot less wheat. I've noticed some horrible symptoms but don't know if I should chalk it up to being pregnancy related or not. I hope more people reply with their thoughts.

ChemistMama Contributor
ChemistMama
Posted

Celiac is genetic; however, if you have celiac and went gluten-free, your symptoms should decrease; however, maybe some people's systems overreact at first until their body is used to the diet. I have DH (the skin form of celiac), and after I went gluten-free my skin symptoms actually got worse for awhile before they got better. This isn't too uncommon with DH, from what I've read on these forums. I read another thread recently about the same thing (cant find it now!), where the husband had lots of GI problems with gluten-free food after his wife was diagnosed.

What grains are you eating a lot of? It could also be that either your system isn't used to a low fiber diet, or you have another food senstivity (sorry!).

If you want to be tested for celiac, I would get tested ASAP, since when you're gluten-free for too long the tests don't mean a thing because you don't have gluten in your system.

Good luck!

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    • trents
      Inflammation and Menier’s disease link?

      By trents · Posted

      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Inflammation and Menier’s disease link?

      By nataliallano · Posted

      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      Hypothetical question about antibodies

      By Scott Adams · Posted

      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Chest pain from celiac

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      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
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