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A bit concerned I got an incorrect diagnoses that it's NOT Celiacs. Just looking for some perspective?

lilahrae
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lilahrae Newbie
lilahrae
Posted

In mid March I began getting very crampy and having diarrhea after meals. In a few weeks I made the connection that gluten might be the problem. I cut out gluten and my symptoms largely subsided. I had a tiny little bit of cake in May and my body seemed to handle that ~ok~. Not great, but not as bad as March.

More recently, I've been able to see a gastroenterologist. In mid July she preformed and endoscopy and took a biopsy. I had my follow up with her and she said my villi looked great and nothing looked inflamed, so that ruled out Celiacs and IBD.

Ok, great, I thought. But I hadn't eaten gluten in months, so I wanted to reintroduce slowly. I started eating a few saltines one day. No issues. The next day a few more saltines, 2 hours later I suddenly get feverish, nauseous and feeling like I needed to go to the bathroom, but I don't actually have diarrhea. Freaked me out a little, and I wasn't sure if I could connect it to the gluten. 

It also made me wonder how accurate the scope would've been, if my body had months to heal, so of course it didn't look atrophied or inflamed. So was surprised she so confidently said it wasnt celiacs.

I looked through my DNA and found I don't have the HLA-DQ2.5 or HLA-DQ8 polymorphs associated with celiacs. But I do have polymorphs on HLA-DQ2.2 associated with celiac, but that's only a risk factor if the polymorph at HLA-QD7 is present, which 23 and me doesn't test for.

No one in my family has been diagnosed with celiacs, and I seem to have the only sensitive stomach in the family besides my brother, who is an airline pilot and regularly eats fast food on weird schedules. The only autoimmune thing we have for generations is one instance of Hashimoto's in my other brother.

Am I overthinking this? Honestly I know I fully could be, I have anxiety so I tend to. Just looking for some input and perspectives from people with an actual diagnoses. 

Thank you so much!

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Scott Adams Grand Master
Scott Adams
Posted

You’re correct that the endoscopy could not accurately rule out celiac disease if you had been gluten-free in the months before it was done, and your gastro should have known this...did you tell them you were gluten-free beforehand? Did they even ask? 

From you description you could have gluten sensitivity, but the proper way to rule out celiac disease would be to eat gluten daily for 4-6 weeks and get a celiac disease blood panel done:

If you don’t wish to go this route and being on the diet improves your symptoms, then you could get a full genetic test, but it would not rule out gluten sensitivity or CD 100% (it would be very unlikely to have CD without the genetic markers).

lilahrae Newbie
lilahrae
Posted
  • Author
1 hour ago, Scott Adams said:

You’re correct that the endoscopy could not accurately rule out celiac disease if you had been gluten-free in the months before it was done, and your gastro should have known this...did you tell them you were gluten-free beforehand? Did they even ask? 

From you description you could have gluten sensitivity, but the proper way to rule out celiac disease would be to eat gluten daily for 4-6 weeks and get a celiac disease blood panel done:

If you don’t wish to go this route and being on the diet improves your symptoms, then you could get a full genetic test, but it would not rule out gluten sensitivity or celiac disease 100% (it would be very unlikely to have celiac disease without the genetic markers).

yea she was very aware! thats why i was surprised. i brought up multiple times i have been gluten free, she even explained the blood test to me that id have to eat just a little bit of gluten every day for a few weeks to test for the antibodies. we talked multiple times directly and specifically about me not having eaten ver much gluten since march

i have also considered non-gluten sensitivity, my symptoms just feel so systemic. im probably going to try to get the genetic testing done, since i'm only missing one piece of the puzzle with the HLA-DQ7...

thank you for your reply! i sincerely appreciate you taking the time

cyclinglady Grand Master
cyclinglady
Posted
(edited)

Scott’s advice was good.  My advice would be to consider getting second opinion from a celiac-savvy GI.  (Get your records).  Your GI should know that you can heal the small intestine within weeks.  Usually, it can take much longer to heal because celiac disease affects other body part systems and the diet can be hard to master.  
 

My family is riddled with Hashimoto’s.  I bet you have more than just a brother who has it.  It is the most common Autoimmune disease and usually thyroid antibodies are never checked unless you have nodules or a goiter or you ask for it.  Hashimoto’s is strongly linked to celiac disease.    I have both.  
 

Finally, if celiac disease is firmly ruled out, do not assume you do not have IBD, if you have symptoms.   My niece went to four GI’s before a pill camera was ordered.  The damage from Crohn’s  was beyond the reach of both scopes.  I am not saying you have Crohn’s or even celiac disease, I am encouraging to keep advocating for yourself!  

Edited by cyclinglady

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