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Ok, Need Some Advice


GlutenFreeAl

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GlutenFreeAl Contributor

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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HAK1031 Enthusiast

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!

gfpaperdoll Rookie

you probably have gluten intolerance, not a good thing to have as you can see. I suggest testing thru Enterolab.com for your husbands peace of mind... If he has health issues, I would also test him!!!

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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