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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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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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