Hi! My name is Tiffany. I need help with something. I just got diagnosed with celiac disease last year. I think I have had it for maybe 10 years. I am 30 and over the last couple of years have been experiencing horrible pains throughout my body. Most recently {the last 6 months} I have had pains shooting up my shins also through my feet, joints, thighs, and lower back. The shins are the worst though. I have been to my GI specialist and she is baffled, got a referral to a reumetolegist. Waiting to see what He thinks.
Has anyone experienced pains like this? They feel like shin splints {like I had when I was a teenager} but can't be because I haven't been excersizing. Also I have been overly tired yet am sticking to a gluten free diet.
Thanks

Hi Tiffany, welcome to NeuroTalk. There are some really nice and caring people here. I hope you get some answers to your questions.

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Here is a link to our Gluten Sensitivity / Celiac Disease forum, there are a great number to assist you.

http://neurotalk.psychcentral.com/forum13.html

Again welcome, looking forward to seeing you around.

Darlene

I see you have already found the forum for Celiac Disease. Just wanted to give you a hardy . We alos have a great amount of forums that you are very welcome to cruise through. Hope all is well with you today!

Actually, it sounds like you may have either neuropathy or myopathy (or both), which can be consequences of cleiac disease/gluten sensitivity.

At the celiac forum here, we have some of the leading lay experts on the subject in the world, including JCCglutenfree (Cara), who has created The Gluten File, surely one of the msot comprehensive databses on teh subject ever compiled.

I hope you have doctors who are at least aware of the spectrum of gluten disorders--at least by going through The Gluten File, you'll have access to papers and studies to bring to doubting physicians.

I think my doctor is trying to rule some things out by sending me to other specialist. It's a long painful haul to try to figure out what's wrong with me. Thanks so much for your advice. I don't want to self diagnos but atleast I can look into the Neuropothy and Myopathy and see what it is and where I may need to go.

hello and welcome to neurotalk ... i see you found the celiac forum .... there are lots of friendly and supportive people here ... feel free to post where ever you feel comfortable ... i hope to see you posting soon ... and again ...

Yes, not myself but a family member with Celiac. There are multiple metabolic nutritional issues correlated with Celiac even after being on a gluten-free diet. These cause "functional nutritional deficiencies."

The family member had excrutiating burning pain right under the skin/surface of the muscles. You may want to look into methylated B vitamins, but there is even more to consider. You might want to be tested for the MTHFR genetic defect.

are you sure, that you are gluten free?? just because it isnt listed, doesnt mean it isnt present.....eating a very primitive diet is the best way to go...at least at first...and if every one in the household isnt on board it is VERY difficult.....good luck

Hello and welcome to Neuro Talk, feel free to explore and do not hesitate to ask questions concerns and or worries you may have. Folks here are fantastic helpful and kind, again welcome to NT