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How To Ask For Testing And Be Taken Seriously!

cranberi58

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cranberi58 Newbie
cranberi58
Posted

I'm looking for some advice on the best way to go about getting tested for gluten sensitivity/celiac. After reading a lot I've come to realize that it can be hard to get doctors to listen and that there are some problems with bloodwork screening.

Here's the deal, I'm in the process of figuring out if I have Multiple Sclerosis. I suddenly had my feet go numb several months ago and went to a neurologist. After ruling out many things (lupus, lyme disease, etc etc etc) and getting an MRI, I learned I have a lesion on my spine and 3 on my brain. While everything so far is highly consistent with MS, I only have this one attack so I am not able to be clinically diagnosed yet.

Anyway, with everything going on I've been reading about MS and stumbled across some links between autoimmune diseases such as MS and celiac and anecdotal evidence that people with MS get great relief from gluten free diets. Many things I've (including info from Enterolabs) read suggest that people with MS get tested for celiac/gluten sensitivity. I completely agree, if consuming gluten is harming me then I'm more then ready to give it up if it'll lead me to a healthier life!

As I've been really thinking about my medical history and the way I feel, I realize I may have had symptoms that I didn't realize. For the last 2 years, my boyfriend and I have a running joke that saying my stomach hurts is my excuse to get out of everything. Now I'm realizing it's not really a joke, I literally say my stomach hurts all the time!

So, I think investigating gluten problems is a very good idea for me at this point but I don't know how to go about doing this. I'm afraid that if I go to a doctor I'll be written off as a hypochondriac. I also don't know if I should just do the enterolabs test. I'm also not sure if it's better to head to a GP, a gastro doctor or an allergist/immunologist. It seems like the main key is to find a doctor that is familiar with celiac and gluten.

I'm just looking for advice from people who have been through this on who to go to and what to ask for!? I have enough appointments already scheduled for all this MS stuff, so I don't want to waste time trying to get a doctor to believe me that I should worry about gluten!

Thanks!

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mushroom Proficient
mushroom
Posted

As you may have realized, it is not easy to find a doctor who is familiar with celiac in all its many guises, and there is no right or wrong as far as a GP, GI, allergist, immunologist etc., is concerned. Rheumatologists don't know RA is linked with celiac, neurologists mostly don't know MS is linked with celiac, GI's think they know everything but can be even more ignorant of celiac than the rest.

I think your best bet would be to contact your nearest celiac society and seek their advice in finding a doctor who can help you. They should be familiar with the doctors in your area who are most knowledgeable about this disease.

ravenwoodglass Mentor
ravenwoodglass
Posted

What did they call those lesions? Are they in slightly different places from where the lesions usually are with MS? I also have brain lesions but a spinal tap didn't show any debris that would usually confirm MS. My neuro was clueless and called the lesions 'UBOs' or unidentified bright objects. These lesions are diagnostic of neuro impact celiac. At least in countries other than the US that are more celiac savvy. After you have done all the testing you choose to do for celiac you should give the diet a try. My MS symptoms and much else was directly related to celiac but since I am one of the 20% or so that show negative on blood work my doctors never mentioned this or suggested the diet. That cost me many painful years.

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