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cwj-tlj

So Frustrated With Mayo Clinic

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Beware somewhat long:

Diagnosed with gluten intolerance by enterolab 5/07: gluten free the day I sent off the test.
Had the best month I can remember. Sx's: recurrent bouts of DEBILITATING fatigue with herpetic mouth ulcer worsened over 2 years came to a major crash after eating Kashi bars(whole wheat,barley,rye ) 2-6 per day I loved those things!

Thought I was cured ,but became hypersensitive with each accidental glutening the symptoms worsened to include neurologic sx's of dementia,fatigue so severe I literally can't get out of bed for 2-3 days only to pee, severe suicidal depression/anxiety this typically lasted 3 days with another 3-5 days of sluggishness inability to wake beore 11:00 unrefreshed sleep things like this.

My DH became very worried and insisted I go to Mayo. I was willing as I have become seriously debilitated to the point of temporary leave from my own business(Medical by the way) I went thru the whole 9 yards ,psychiatrist, endocrine,allergy Gi. Blood drawn including Hla. They basically considered Fine's teste invalid and told me they could not help as my BX and blood tests were neg. DUH! after 8 months gluten-free. I said why don't you feed me gluten and see what happens? This was felt to be nonscientific.
HERE'S THE DEAL if you don't have classic celiac you don't exist. They said well if you do feel better gluten-free then stay that way. Dr Murray has a special enterest in enteric neuroscience that's why I thought they might help me, Also I had one low cortisol on a lousy day 2 days later I felt great the repeat was normal. I feel my adrenal gets stressed during glutening making my sx's so severe. anyone else with same experience?

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Well I never went to Mayo but I bet a lot of us have similar stories to tell in how we arrived at being gluten-free. My personal journey took 11 years and if I eat gluten I have both physical and neurological symptoms, after being gluten-free for 6 or so years I'm also very sensitive to it and the slightest little bit makes me sick for weeks.

I had a Dr. that insisted I did NOT have celiac. I didn't care what he said, I went gluten-free and felt so much better after just a few days. I did have the symptoms of classic celiac and I was still ignored. So don't feel its because your symptoms weren't classic, it can happen to anyone and its all about the individual doctor and their beliefs. My doctor was a bit older and I'm sure if he even learned about Celiac in med school it was that it was very rare and as a doctor you'll never see it. Thats how it use to be taught. We all know thats just not true and more and more medical people are becoming aware of it.

I changed doctors, got scoped (actually for other issues) and was diagnosed formally but I didn't need that. I knew I had it. Things are changing but slowly..... but I can tell you this, in the 6 years I've been gluten free... at the beginning of that time period when I'd go to a restaurant virtually no one had heard of it. Now there are very few places I've gone too in the past year or so where when I start telling the waiter that I can't eat wheat, most of the time they look at me and say, "oh do you have Celiac"? And most of the restaurants I go to have handled it many times in the past and do a darn good job at it. (granted I don't eat fast food and don't do much casual dining, more individually owned bistro type places).

So change is happening all around us.

Good Luck, Susan

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Howdy. It seems frustrating if they won't accept Enterolab. But it sounds to me like you need to be super, super careful about hidden gluten.

If you are being very careful and still having symptoms, have you considered that you may have other food intolerances? I'm not sure if Enterolab checked you for that. But I personally have found through trial and error that I am intolerant to casein (dairy), soy and potatoes.


"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams

Currently gluten-, casein-, soy- and nightshade-free.

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