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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
  On 7/5/2020 at 6:27 PM, 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.  

  On 7/5/2020 at 6:27 PM, 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.  

Expand Quote  

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

Expand Quote  

 

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
  On 7/5/2020 at 8:35 PM, 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?

Expand Quote  

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
  On 7/9/2020 at 6:45 AM, 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?  

 

 

 

Expand Quote  

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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