Celiac diagnosis: GF, but still have abdominal pain, what next?

Oh no!! Word should be treat! Sorry

Aaah, now I understand-thanks!

Does anybody have any experience they can share with using Pamelor. My GI doc wants me to try it for IBS associated with my Celiac disease but the potential side effects are quite worrisome to me!

I was diagnosed with celiac about five years ago and struggled with burning gastrointestinal pain until about 6 months ago. Seems like we tried everything. I finally made an appointment with Mayo Jacksonville gastroenterologist. They did extensive tests and the only thing found was that celiac diet had worked as far as healing intestines, but I did have esophageal spasms. She put me on Pamelor at a very low dose, pepcid and I take that and miralax every day now. Constipation had been an ongoing problem. I am so much better now.

I am in my 4th month after being diagnosed with Celiac disease. I have diligently been gluten-free but think I have suffered from cross contamination at least 2-3 times. My doctors also feel I’m suffering from IBS and have put me on Bentyl. Because I have continued to have abdominal cramping, gas pains and lower back and rib pain,I have also been given a script for Pamelor. I plan to start that script tonight. All of the reviews I have read have been overwhelmingly positive with great results alleviating cramps and pain with the Pamelor. I hope it works for me as well. Thanks for your feedback- it’s very much appreciated and helpful!

Hi I’ve had a celiac diagnosis for about 7 years and it took a very long time for my gut to heal and the pain to subside. It also took 6 years for me to gain the weight I lost due to the disease. I was also diagnosed with lactose intolerance over 2 years before the celiac disease. At this point everything is much better and stable but it is diet controlled.

My doctors thought that I had refractory celiac disease because I continued to have symptoms even on a GF diet.
They eventually realized that I have also a primary immune deficiency with autoimmunity and autoinflammatory complications.
At one point they thought I might have MS to go along with everything else and I can not even begin to tell you all of the invasive testing I went through.
I had a bad downturn neurologically. My doctors were really quite frankly at their wit's end as to why. We had ruled out MS and some other things. They didn't think it refractory celiac disease anymore. Then, my PCP guessed. She figured out that the "GF" pizzas I was eating really weren't gluten free. Turns out she was right. About 5% are contaminated. That is enough for people like me to have symptoms.
I did more research. It turns out that people with neurological complications from celiac disease are more sensitive for lack of a better way to put it. My sister, also has celiac disease. She did not even know she had celiac disease until they screened her. When she is glutened she has symptoms now, but fairly mild ones. So, you see, we are all different.
In my case, I thought I was being GF enough. I thought if it was marked GF then I was all set. Turns out if food is prepared where flour is in the air that it is likely to be contaminated - especially enough to get people as sensitive as I am.
I hope that helps.