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Should I Get Tested Again?


kprince

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kprince Apprentice

Hi Everyone-

I found out I had celiacs the day I found out I was pregnant and I had almost no systems. Now that I have had my daughter, some weird symptoms have poresented themselves and I am not sure if it is related to the celiacs or not. I never really had any systems..sometimes a "fatty stool," so I am ot sure if there is gluten sneaking into my diet etc. Is it proper protocal to get a follow-up blood test to be sure your numbers have ndeed gone down? Is ther any other "post-diagnosed" test that I should be taking?

I have a lot of "allergy-like" things going on now and I am not sure if it is because I just had a kid, or something related to what I am eating. I pretty much eat the same things everyday, so there really isn't any rhyme or reason why somedays I have a reaction and some days I do not.

I have had a lot of skin rashes ( sort of like a heat rash), I have episodes where the bottoms of my feet itch like crazy, and my stools go from being hard to diarreah...anagin, no changes in what I am eating.

I am at the point whewre I need to start eliminating possible factors and thought this might be a good start. I am thinking about getting tested for lactose intolerence too.

Any thoughts or ideas would be amazing!!!

Thanks-

Kathy


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ang1e0251 Contributor

It would be appropriate to be retested at a year's interval. You don't need a test for lactose, just eliminate it and see. My daughter required an endoscopy and a biopsy for them to test for lactose. If I had understood it better, I wouldn't have put her through it. It wasn't hard on her, just unnecesary.

gfb1 Rookie
[snip] Is it proper protocal to get a follow-up blood test to be sure your numbers have ndeed gone down? Is ther any other "post-diagnosed" test that I should be taking?

[snip]

interesting question.

during the 'early days', when my wife was first diagnosed with celiac disease (going on 10 yrs) -- we blood tested her every 3-4 months for the anti-gliadin ab's (to find if gluten was sneaking into her diet) and, with less frequency, the ttg/em ab's (to be sure there was no continuing damage to the bowel).

we also had regular checks on her iron nutriture -- to monitor anemia. her celiac disease manifests itself in severe anemia due to an inability to absorb iron. over the last several years, she's been receiving iron infusions every 6-8 wks.

lastly, a check on vitamin status may also be a good idea. data in the literature are equivocal as to whether vitamin deficiencies (or requirements) are different for celiac patients -- but, it is clear that a gluten-free diet can be significantly lower in B6 and folate than a diet that includes wheat products. (i generally recommend a decent multi-vitamin anyway... just make sure its gluten-free. we buy Wegman's Women's Daily -- gluten-free and CHEAP!).

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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