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HELP not sure if i'm on the right path


birdie761

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birdie761 Newbie

I wanted to see if you could give some insight to this; if Celiac is a real possibility

I have struggled with digestive issues on and off for years but last few years, have been the worst lately.  I had some bowel issues (blood in stool, change in bowel movements) recently more. I immediately went to my doctor and he ordered a colonoscopy. They did find some very small polyps but rest was clear.    I’ve always felt “pressure” or bloating so I pushed my doctor as I feel something is off. I work out extensively including multiple running activities (did an 8K run a few weeks ago and training for 10k).

I see my gynecologist to rule out anything with my issues ovaries just to be sure (I had a hysterectomy but left ovaries years ago). In the process of all the blood test, a celiac test was done and my doctor referred me to a GI specialist, saying something about having the markers for it. Not sure what that means.  Since the colonoscopy in March 2018, I’ve had discomfort in my upper abdomen, feeling gassy (feels like I have to burp all the time), nausea, continue loose stools or diarrhea. Always tired.  

Here are my blood test

DQ ALPHA 1 (CELIAC HLA-DQ)

01:03,02:01  

 

DQ BETA 1 (CELIAC HLA-DQ)

02:02,06:03

 

 

My pictures I attached showed my stomach in September 2017 at the Tough Mudder I did and now (this last Sunday)

 

Not sure I’m going down the wrong path or not… any thoughts or tests I could do or maybe I’ve done already, to determine this or not

stomach.webp


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Ennis-TX Grand Master

The distention looks like what some of use get with celiac or in my case even my ulcerative colitis but it is more around the outside rim and lower abdomen.

I can not read panels very well, and in most cases they vary from lab to lab and require a reference range to determine how relative the actual numbers are. You have to be eating gluten daily prior to the labs, and they are not always accurate as some do not test positive on the blood but will have villous atrophy in the endoscope biopsies and even then with a surface area the size of a tennis court...they sometimes miss the damaged areas. You can look up more on the testing here. If you do test positive then at least you can look forward to a cure without meds and getting most of your life back with a very strict diet change. Open Original Shared Link

RMJ Mentor

Those blood tests are for genetics, to see if you have the genes that predispose one to celiac.  Almost a third of the population has the genes for celiac but only 1-2% develop it.  You’d need antibody tests, and if those are positive an endoscopy, to find out if you have it.

Juca Contributor

You need to get tested.

In the meantime, stop eating sugar and artificial sweeteners. It helps with all sorts of digestive issues and it won't mess with you tests (keep eating bread and pasta).

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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.
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      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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