Newbie here!

Hi Mugrad03, I was told that I did not have Celiac based on blood tests, so I continued to eat gluten. After a while, I decided to try going gluten free anyway, in case I had non-Celiac gluten intolerance. It helped me a lot! I kept to it because it made such a difference. Then some people started to convince me that Celiac was the only "real" gluten intolerance and it must all be in my head. So I started having bits of gluten when I was with those people. Then my new doctor ordered a blood test for Celiac for me - testing for IgA antibodies, IgB antibodies, total IgA, and TTG. It showed up that I have IgA deficiency, which had skewed my blood test results in the past to look negative even though they were really strongly positive. Also, it showed positive for TTG levels, even though I've only been having small amounts of gluten infrequently.

My main Celiac symptoms have been: joint pain, neuropathic pain, brain fog, migraines, headaches, anemia, fatigue, anxiety, depression, weakness, constipation alternating with diarrhoea, severe stomach cramps, nausea,

Basically, based on my experience, I recommend you do this:
1) ask for a blood test that tests for IgA deficiency, TTG levels, IgA antibodies and IgB antibodies.
2) negative blood test > trial gluten free because you may have non-Celiac gluten intolerance (even if you don't have digestive symptoms; you may have an atypical presentation)
2) positive blood test > have an endoscopy to assess internal damage and confirm Celiac diagnosis > then go gluten free AFTER the endoscopy

Going gluten free will be beneficial if you have Celiac or non-Celiac gluten intolerance.

Oh I don't mean to say that it IS the answer. It is just one of many possible answers; everyone's body is different and has different reasons for manifesting fibromyalgia symptoms. I'm just saying it's worth ruling out Celiac as a possible diagnosis, and that a 3-week gluten free trial should reveal to you whether or not that is part of the answer to your health problems.

Going gluten free has helped me but I am still unwell, so I am still getting tested for various things to find out what else is going on.

By the way, for anyone diagnosed with both IBS and fibromyalgia, these are interesting reads:
http://arthritis-research.com/content/15/6/R201
http://www.empr.com/is-there-a-link-between-ibs-fibromyalgia-and-celiac-disease/article/327058/

Post Edited (Jasmine Grace) : 3/29/2014 6:49:17 PM (GMT-6)

Hi, Mugrad. Welcome! You've landed in a friendly place.

I have a couple of suggestions - one is to read "Fibro 101," first thread on the forum. It has all kinds of info on Fibro.

And then, we have limited diet discussions to one thread...right now it's on the 4th page of threads -"Diet and Food Discussions." (We do this because we've learned that otherwise, people tend to want to talk about their own eating habits and problems extensively during other discussions, and it can get out of hand.) Celiac and gluten intolerance is one of the things discussed a lot there.

I hope to see you around more - we are here for you.

I'm adding "newbie" to your thread title, so it will be more likely to be noticed...

Debbie

Thank you everyone for the encouragement! Couchtater I tried Gabapentin but had to stop because it made me too "foggy".