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New To The Forum, And I Have Some Questions

AaronM761138

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AaronM761138 Newbie
AaronM761138
Posted

  I went to a gastro 8 months ago for IBS and pain in my lower stomach and was given a colonoscopy, and also blood tests for celiac.  The doctor was Pakistani, there were some communication issues, and he didn't spend much time talking to me . He said the blood tests were negative for celiac and my colon was perfect.   I've had GERD and an endoscopy done, but the doctor was not looking for celiac at the time, but he saw gastritis and symptoms of GERD.  My general practioner also believes I have Small Intestinal Bacterial Overgrowth (SIBO), and a course of flagyl made me so ill I could barely eat anything, and that's when I really noticed the gluten and casein intolerances.

 

  5 months ago signed up for 23andme and I got my results back.  I eventually had them looked at through Prometheas and it tells me I have the HLA DQ2.5 genoset, which is a gene for celiac.

 

 If I eat either gluten or casein, I get constipation... not diarrhea.  I've never heard of celiacs complaining of constipation, however.    Currently I don't eat wheat, barley, or rye, and I don't eat cow's milk or cheese (but I occasionally eat goat cheese and it doesn't seem to bother me).  My symptoms are getting better but I wonder if I should bother with pursuing a formal celiac diagnosis, or if I'm merely gluten intolerant.  No one else in my family has been diagnosed with celiac disease.

 

  

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Here is a link to the University of Chicago's Celiac website. It explains the tests needed and some 300 symptoms. Constipation is one of them, along with GERD.

Open Original Shared Link

I happen to be the first in my family to be diagnosed and my symptom was anemia, although most of them have some identified autoimmune disorder like R. Arthritis, thyroiditis, lupus, etc. The old classic "wasting away" does not apply to my family. That is the stereotype that many doctors think.

I am sorry that your doctors were unable to help. That is what happened to my hubby. He went gluten free per the advice of my allergist and his GP. His symptoms went away and he faithfully sticks to the diet. He wishes he had a formal diagnosis, but refuses to do a challenge. Can you blame him? He knows gluten makes him sick.

Who would have guessed that we would both have gluten issues? I have an Aunt and 1 cousin who went gluten free after their testing was inconclusive. My cousin had an endo, but biopsies were not taken. She just decided to go gluten-free like her Mom and feels better. Now, that I was diagnosed, we think they really do have celiac disease since we have other autoimmune disorders and non-functioning, rotting gallbladders removed. I am sure others have it, but they do not want to know!

So, it is up to you to decide what you want to do. I wish you well!

AaronM761138 Newbie
AaronM761138
Posted
  • Author

Gluten and casein bother me so much, that I can't see myself eating them for a month again just to pass a test that may not show anything.  The constipation is horrible (my digestion just shuts down, the only cure seems to be using magnesium citrate to flush it out) and I'm worried about long term issues like getting distended bowels and esophageal cancer.  I can get bloating for days and it just gets worse.  In some ways, I envy the folks that just get diarrhea.

 

  I will make a doctors appointment and discuss whether he thinks its a good idea to just give me a celiac diagnosis.

cyclinglady Grand Master
cyclinglady
Posted

Good idea and keep up on the research!

hayley3 Contributor
hayley3
Posted

I have terrible constipation but so far only a SIBO diagnosis.  I would work on getting them to do an upper endoscopy, where they can check for SIBO and celiac at same time.

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