Go to Allergist re Celiac?

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Date Joined Mar 2014
Total Posts : 167
   Posted 5/23/2014 11:27 AM (GMT -7)   
Around 1.5 years ago, I began having terrible pain in my lower abdomen about 20-30 minutes after I ate. Then I started having lose stool and diarrhea. Often times, it would be rather mucusy and sometimes it would have red blood in it, 3-4 times per day. In about September of last year, I went to the gastroenterologist, who did a blood allergy test. My results came back with a small food allergy to wheat. My celiac test was negative. I went gluten free after that but would sometimes have a sub sandwich or a cookie here or there. I had a colonscopy in November, which came back pretty clear. I do have a “loopy” colon and hemorrhoids. The doctor said that he thought I had IBS with potential GERD. He has prescribed me Bentyl, Omeprazole and Hysociamine but I have not taken them because of the terrible side effects and my wish to control this naturally. I went completely gluten free at that point and cut foods like tomatoes and spicy food out. The pain in my lower abdomen went away, for the most part, but I still have loose stool every single day. It is usually only once a day but sometimes 2-3. I am now down to about 10 foods that I know don’t make me sick and low acid coffee. I exercise 4-5 times a week and have lost 32 lbs (40 is my goal).

about 4 months ago, I began having shooting ear pain in my inner ear. I went to the ENT who said that she thought I had LPR “silent reflux” and prescribed me Omeprazole, which I did take for two weeks. It did help somewhat with the ear pain. But then in April, I woke up one day with terrible ear pain and could not hear (except very quiet muffles) out of my left ear and I was somewhat dizzy. I frantically called the ENT, who could not get me in for three days. When I finally went in, my symptoms were gone and she did some vertigo tests, which she ruled out. She stated that next time it happens, she wants me in the same day and wants to perhaps send me to a rheumatologist.

I went to my GI doctor for a check-in yesterday and described my success with limiting the abdominal pain through a strict diet but that I was still having loose stool. He recommended that I go to an allergist for further food allergy testing, specifically for celiac. He also offered to an endoscopy, which I declined at this point, after the colonoscopy was kind of hard on me and I’ve missed so much work already for all of these appointments.

What do you guys think? I also have what seems like cyclical swelling (hands, feet, legs), some arthritic pain in my forearms and upper legs and sometimes, I just can’t get out of bed. My mom had lupus and I’ve always been on the lookout for that, but it’s hard to diagnose and my ANA is negative. Here’s where I am confused – if I have been gluten free for months now, why am I still having these issues if it’s celiac? I asked him and he said it could be cross-contamination. I prepare all of my own food, so I know it’s not that. Can the allergist help me? Does it sound like celiac to you guys? Should I just go for the endoscopy? Any input is appreciated.

Veteran Member

Date Joined Oct 2009
Total Posts : 4937
   Posted 6/7/2014 4:40 AM (GMT -7)   
Poor Aubry.

Blood tests for celiac are getting better but still not definitive. The standard is the endoscopy and biopsy. So, trust your gastroenterologist and do the test. You try the meds he prescribed too. Not everyone gets the side effects. Forget the natural stuff for now. Get treated. You had a confirmation that you needed treatment from the ENT. An allergist can help if you can find an experienced one familiar with celiac and plain old wheat sensitivity. I went to one once who told me I had no food allergies after skin testing, but I got GI upset and tachycardia after eating certain trigger foods. An older and better allergist had me keeping a food journal, which identified my sensitivities.

There are some great meds for loose stools. Colestipol is a nice cheap generic. Demand the granules, not the horse pill. Sprinkle it on applesauce.

See if you can get in with a rheumatologist about the ANA and arthritis symptoms. That can take several months because there aren't many of them and they are badly underpaid for what they do for us. They take two residencies where most specialists only take one.

If you have celiac you have to be completely gluten free. But you have to be on gluten for a couple of months to get an accurate endoscopy. It makes a huge difference if you are just sensitive or celiac. If it turns out to be celiac you have to avoid wheat in your shampoo, laundry detergent, lotions ... in addition to foods. So get tested and find out.

Best wishes.
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