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Concerned I may have Celiac


Wilk

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Wilk Newbie

I am a 40 male that just realized I may have celiac disease and trying to get tested. I have most of the characteristics. Last week my stomach was bloated and I was gassy for 5 days, 3 of which had liquid stools. Unfortunately I have been drinking regular beer daily (6 or more per day) for the past year (quit during this week of the above episode).

What damage could I have caused and how long could it take to clear out all the gluten I ingested?
 

I am really concerned being 40 years old and just now finding out I may have celiac.


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trents Grand Master

First of all, don't attempt to eliminate gluten from your diet until you get tested or you will likely invalidate the test. Many doctors don't know or don't think to tell their patients this. You should be eating at least 2 slices of wheat bread or the equivalent amount of gluten for 6-8 weeks before the serum antibody test and at least two weeks before the endoscopy/biopsy of the small bowel lining, should your physician order both.

I was in my early 50's when diagnosed with celiac disease and it took several years for my small bowel lining to completely heal. However, I probably was not being as consistent as I should have bee in avoiding gluten. You can expect a couple of years for complete healing but substantial healing will typically happen sooner than that. If you really are consistent from the get go in avoiding gluten then you should start feeling better in weeks.

It took me 13 years from the onset of symptoms to get diagnosed so your damage may be less. I would not worry about the amount of damage already done as you should experience good overall recovery in your body if you are consistent once starting on the gluten free diet. And "consistent" doesn't mean you will never get "glutened" again, it means being as diligent as you can. We all have a glutening accident once in a while but as long as it doesn't happen frequently you should be on the path to healing once your testing is done and you can focus on educating yourself about where gluten is hidden in the food supply and how to avoid it. There is a significant education curve in this regard.

 

Scott Adams Grand Master

Many people on this forum found out they had celiac disease in their 50s, 60s, or even 70s, so I would not worry too much about your age. The important thing is to get tested and diagnosed so you can regain your health. Keep in mind that there is also a condition called non-celiac gluten sensitivity that perhaps ~12% of people have, and unfortunately a celiac disease test won't show if you have this...unfortunately there is not test for it. This means that if your CD test is negative you may still want to try a gluten-free diet to see if you feel better. There are many gluten-free beers available.

Wilk Newbie
6 hours ago, Scott Adams said:

Many people on this forum found out they had celiac disease in their 50s, 60s, or even 70s, so I would not worry too much about your age. The important thing is to get tested and diagnosed so you can regain your health. Keep in mind that there is also a condition called non-celiac gluten sensitivity that perhaps ~12% of people have, and unfortunately a celiac disease test won't show if you have this...unfortunately there is not test for it. This means that if your celiac disease test is negative you may still want to try a gluten-free diet to see if you feel better. There are many gluten-free beers available.

I appreciate the responses. Since that episode happened last week, my stomach hasn’t been right. I feel & hear like bubbles above my belly button. Today I ate two hot dogs for lunch and my hands were shaking afterwards when trying to put together a drone at work. Would non-celiac gluten sensitivity have similar issues after eating gluten? 

trents Grand Master
1 hour ago, Wilk said:

I appreciate the responses. Since that episode happened last week, my stomach hasn’t been right. I feel & hear like bubbles above my belly button. Today I ate two hot dogs for lunch and my hands were shaking afterwards when trying to put together a drone at work. Would non-celiac gluten sensitivity have similar issues after eating gluten? 

Yes. The symptoms are largely the same. And the antidote is the same.

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    • Nicbent35
      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
    • trents
      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
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