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Elle1

Tingling, itching, fatigue, tummy trouble & much more!

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I've been having strange health issues for about 8 months, and only after seeing a holistic nutrition expert have I begun to wonder if I have a problem with gluten. Reading studies, articles, and personal accounts has made so many light bulbs go off in my head. I would like to share my situation in the hopes that someone out there can tell me what path I should take for the fastest resolution to this problem.
Background: Lifelong digestive issues, off-and-on, incl. diarrhea and constipation but more often painful gas/bloating. Diagnosed with GERD at 29, been on PPIs for 10 years (way too long, I know).
Nine months ago, began to experience a strange sensation in my left shin/calf. Sort of like the skin was mildly tingly and more sensitive than normal, like how sheets feel on your legs when you've just shaved them. Accompanied by fatigue, mild digestive distress, brain fog, tiny twitching of muscles here and there, mostly at night and mostly in my legs. Diagnosed with low B12, put on supplements. Should have stayed on them but got off track with them. Symptoms did mostly go away.
Within last month, leg sensations back, along with fatigue, brain fog, and minor twitching. Some days I have little itches randomly all over my body. I'll scratch one and it disappears, then one pops up somewhere else, and so on. I  have had a lot of other symptoms that I read about in celiac articles at times in the past -- headaches, insomnia, depression, abdominal pains, benign breast lumps, breast tenderness, etc.
I think I'm on the right track with this holistic person, who is helping me to wean off the PPIs. I have read there may be a correlation between PPIs/GERD and celiac. She did the zinc deficiency taste test and it was positive. Just started me on some supplements and said we'd work up to other supplements when my tummy is healed from the PPIs. She is the one who mentioned a gluten problem, told me about the possible link with PPIs and that since I'm very fair, blue-eyed, redhead, that may make it more likely that I don't tolerate gluten.
I have always thought celiac disease was only manifested in severe digestive problems, and since I have only had moderate digestive problems -- albeit off and on for a very long time -- I never considered the possibility of celiac disease. My mom has bad IBS, but to my knowledge was never tested for celiac.
This has been long-winded and I apologize, but since I don't think the holistic person can do a celiac test or order one, where would you all go from here? I don't want to waste a ton of time if this is damaging my body. My GP mentioned MS and wanted to send me to a neurologist, but I feel like it's smarter to explore the diet issue at this stage than wasting a lot of time and money, and scaring myself to death, by going to a neurologist. Thank you in advance to anyone who takes the time to reply.

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Do not go gluten free just yet.  Now is the time to ask your doctor for a celiac blood test:

http://www.cureceliacdisease.org/screening/

The catch is that you must be consuming gluten daily in order for the tests to detect any antibodies.  celiac disease a can manfest in so many ways and because this it is often not caught by doctors.  There are over 300 symptoms!

i recommend that you continue to research and advocate for yourself!  Get tested.  If all else fails, then consider a gluten-free diet, but only as a last resort.  Why?  The diet is hard to maintain and more so if you have doubts.  Also celiac disease is genetic.  Your mom very well may have had celiac disease instead of "I be stumped."  You might end up helping yourself and current and future family members.  

I wish you well!  

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Thank you, cyclinglady. I really appreciate your response. I will try to find a doctor who will do a celiac test on me. I have high health anxiety and find myself spiraling into fear that I have something really bad. Not that celiac is not bad, but I would like to get some kind of answer and start working on a solution. Thanks again.

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