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Can It Be Celiac?


Misscellany

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Misscellany Rookie

I was diagnosed with Sjogren's syndrome earlier this year, after running several blood tests to figure out a back issue. I was positive for SS-b, ANA and ENA. 

 

I've been feeling pretty good the last few months, except for the extreme fatigue. I've recently connected it with eating. No matter how much or what I eat I feel like I've been hit by a truck RIGHT AFTER I eat. Only if it's just a bell pepper, I get fatigued. I started Googling food fatigue, and came across Celiac and so many things fit with me.

 

I moved to the States from Norway when I was 20 years old and I'm currently 33 years old. Ever since I moved over, my stomach has had a hard time adjusting (or that's what I thought), giving me diarrhea and extreme bloating. The diarrhea was so bad I was worried about eating out, especially at Italian restaurants, because I was afraid I wouldn't be able to make it to a toilet in time. Most of the time I looked like I was 7 months pregnant, and I am underweight if you consider the BMI standard at 18.2. 

 

I got pregnant when I was 30 and the diarrhea suddenly stopped. Then I had a miscarriage at 10 weeks...  This entire spring I have had few bowel movements (was up to 12 days in between), but it didn't cause me any discomfort or bloating for some reason. 

 

I have RLS that I manage by taking 1000 mg Magnesium. I've also has twitching eyelids since November which could be caused by another deficiency. Every single day my eyelids are twitching, even in my sleep. This winter, the twitching would spread throughout my muscles, but it seems to have set on my eyelids now.

 

I've had fatigue for as long as I can remember. I also have unexplained rashes. I have brain fog all the time. Symptoms that I do not have that seems to be common are headaches and depression. 

 

Even though I have the blood for Sjogren's, I measured within normal range for the lip biopsy and Schirmer's test. I've also had a low WBC since November, when I did my first blood test.

 

Here's some of the blood result I've had over the last year, I don't even know if any of these can point to Celiac, but please let me know if something looks familiar:

 

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I'm surprised they didn't run the Celiac panel.  Your IgA level is really low so the blood test for that won't come back accurate. Your IgG levels are ok so that might show something.  I would request an endoscope too.  Did you actually got to Mayo for your testing or did they just send the test to Mayo?  I was at Mayo on 6/20 as well so we may have crossed paths!!

Misscellany Rookie

I was at the NIH for Sjogren's screening, that's probably why they didn't care about Celiac testing. I haven't been back to a doctor after getting these results back but I guess I should. 

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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
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • 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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