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GlutenFreeAl

Ok, Need Some Advice

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Ok. Here's the condensed version of my story. Had stomach problems for years, namely pain and bloating and what felt an awful lot like menstrual cramps, only they happened throughout the month. Also prone to constipation. In the absence of other obvious problems, I had a doctor recommend to me about 2 years ago that maybe I had a problem with wheat. Blood test for Celiac was negative but I was so miserable I decided to go gluten free anyway. Initially I did have some improvement on the diet, and followed it for about a year. I eventually gave up because I was still having digestive problems and hey, the blood test was negative. Everyone in my life rejoiced when I gave up the diet, because it's obviously a burden for anyone who cooks for me/lives with me/goes out to eat with me.

Fast forward another year. I am having incredible problems again with bloating and cramping and pains. I land in the ER because of the pain, go through a battery of tests and procedures. I am eventually diagnosed with Endometriosis, which was removed with a laser. Post-surgery, I am in more pain than ever, despite the fact that the Endo is supposedly gone and I am on continuous birth control pills to help prevent it from coming back. The daily bloating is unbelievable (taking my morning flat belly to 3-4 months pregnant by 3:00). The pains in my lower abdomen/pelvic area literally take my breath away.

I am at my wits end and don't know what else to do. Several days ago I decided to give up every single trace of gluten in my diet (not a big wheat eater these days, but eating oats and things). Of course, everyone thinks I'm crazy and even my normally super-supportive husband thinks I'm grasping at straws and should just continue eating normally.

The weird thing is, I actually feel better. My thought is that the first time I was gluten-free, I was still eating occasional dairy and a lot of gluten free packaged products. These days my diet is a lot cleaner, with mostly fruits, veggies, fish and chicken, and some whole gluten-free grains such as rice.

I suppose it could be the "placebo effect," but my theory is that while I probably do not have Celiac Disease, could gluten be contributing to or even causing my other problems with inflammation in my gut?? If everything is sensitive down there from the Endo, could gluten be making the inflammation/swelling/bloating worse?

Any thoughts?

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First of all, the blood test has a crazy high number of false negatives, with me, my brother, and several of my friends on that list.

Secondly, many believe there is a link between endo and celiac. I have both, as do quite a few others on here...there was a thread a while ago. My endo symptoms are definitely better off gluten, and my celiac symptoms (when I was on gluten) definitely got worse around that time of month. Gluten is one of the things they say to avoid on a diet to help endo anyway.

If the gluten-free diet helps you, go for it. Who cares why? And I highly doubt it's placebo...your symptoms sound like mine, and I can't imagine those disappearing without a real cause. Good luck!


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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