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Does this seem like Celiac and/or or gluten insensitivity?

flapdragon
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flapdragon Newbie
flapdragon
Posted

Sorry if this is long.

Every month since last September I've been getting really sick. Always starts off the same way, I'll suddenly have the urge to pee a lot, like every 5-10 minutes and this lasts for 2-3 hours. Then my stomach will feel really empty like there's a hole in it. I'll start to get stomach cramps, then chills and extreme fatigue (the worst part), and I feel like I'm gonna faint. No fever. This will last a couple weeks (I'll be bedridden most of the time due to the fatigue) then I'll be recovered for a couple more weeks, then it will start back up again.

First time this happened it was September, started a couple days after unprotected sex with someone, though I have no idea if that's related or not (I got a visual diagnosis for HSV right after the encounter, test results all negative, doctor still thinks I have it though. Tested again recently, and negative for all other STD's). I started throwing up bad, had to go to the ER and they did a scan and found a small hole in my small intestine. I've had these symptoms every month since, minus the vomiting, and I'm waiting for the results of an endoscopy at the moment.

I'm just wondering if this sounds gluten-related, because it seems to happen often whenever I have pasta for dinner. My doctor did a blood test and it was negative for Celiac.

Thanks for listening

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cyclinglady Grand Master
cyclinglady
Posted

Which celiac disease blood tests were given?  While you could still have celiac disease, I am glad you had an endoscopy (which your doctor could still check for signs of celiac disease).    Celiac disease does not cause a large visible hole in your small intestine, but other autoimmune disorders or other illnesses can.  

flapdragon Newbie
flapdragon
Posted
  • Author
1 hour ago, cyclinglady said:

Which celiac disease blood tests were given?  While you could still have celiac disease, I am glad you had an endoscopy (which your doctor could still check for signs of celiac disease).    Celiac disease does not cause a large visible hole in your small intestine, but other autoimmune disorders or other illnesses can.  

1 hour ago, cyclinglady said:

Which celiac disease blood tests were given?  While you could still have celiac disease, I am glad you had an endoscopy (which your doctor could still check for signs of celiac disease).    Celiac disease does not cause a large visible hole in your small intestine, but other autoimmune disorders or other illnesses can.  

Thanks. It was an antibody test and was negative for ttg

 

cyclinglady Grand Master
cyclinglady
Posted

The TTG is the standard common screening test for celiac disease.  It is good, but does not catch all celiacs.  If still on a daily diet of gluten, you could ask for the EMA and DGP tests (IGA and IgG versions).  But I would suggest waitIng for the endoscopy results.  Again, a hole in the small intestine is not a sign of regular celiac disease.  I could be wrong, but I have never seen that in literature or from members.  
 

 

Scott Adams Grand Master
Scott Adams
Posted

Did your doctor test you for diabetes? Frequent urination is a common symptom for it.

Do you have you celiac disease blood test results? I wonder if they were really negative, or were really not strong positive, give that your doctor did an endoscopy. Also, did they do the endoscopy to find celiac disease?

cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, Scott Adams said:

Did your doctor test you for diabetes? Frequent urination is a common symptom for it.

Do you have you celiac disease blood test results? I wonder if they were really negative, or were really not strong positive, give that your doctor did an endoscopy. Also, did they do the endoscopy to find celiac disease?

You would think an ER would run a standard glucose test, but you never know.  The perplexing thing is that the OP had a hole in his/her gut on a scan.  I think that is why the endoscopy was ordered.  Hopefully, they also checked for celiac disease.  
 

You have been here a long time.  Ever hear of celiac disease causing a perforation of the small intestine?  Not me.  Other things, but not celiac disease.  

flapdragon Newbie
flapdragon
Posted
  • Author

The endoscopy results came back. Everything looked normal. They think it's ibs so they're giving me an anti depressant that may help with the gi symptoms. Also I was tested for diabetes, no sign of it

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knitty kitty Grand Master
knitty kitty
Posted

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

This article is about gastrointestinal Beriberi.  Are your symptoms similar to the patient in the article? 

What did the doctor do about that hole in your intestine?  

 

 

 

flapdragon Newbie
flapdragon
Posted
  • Author
51 minutes ago, knitty kitty said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

This article is about gastrointestinal Beriberi.  Are your symptoms similar to the patient in the article? 

What did the doctor do about that hole in your intestine?  

 

 

 

Thanks. That doesn't really sound like my symptoms. She didn't really do anything about the hole. It was small and seemed to heal on its own

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      I had to rush to the hospital last week due to anaphylactic shock from taking a dose of an antibiotic. Received EpiPen, steroids, antihistamines, zofran (all injected/IV). When I woke up the next day, ALL of the rashes I've had that started since going gluten free were cleared up. EVEN THE dermatitis herpetiformis was gone. Has anyone else experienced this or happen to know why that would happen? The meds they gave me were all meds that I've taken to try to resolve the rashes, but they never worked in pill form. I'm wondering if it the addition of the epi that helped, it if injected steroids and antihistamines were what did the job.
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      Test interpretations

      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      Test interpretations

      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
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      Test interpretations

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      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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      Test interpretations

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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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