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Celiac Disease (refractory type)

Posted by Reny @reny, Jul 13, 2019

I do not see any discussion about this disease and I suffer not only with this but with IBS that goes from D to C quite regularly. I have a strong gluten free diet, but suffer daily with symptoms that range from simple headache to all over exhaustion and muscle fatigue. I need a support group, either online or in the Orlando area. I really do. I need a positive support group. I also have hypothyroid, anemia, fibromyalgia, and chronic migraine. No, I am not a hypochondriac. Most of these are military service connected. I served 18 years from 1983 to 2001 and was deployed several times. Persian Gulf one veteran. Of course Celiac is genetic and I was diagnosed with that in 2008; however, the rest is SC and I am not able to work right now. I am getting a higher lever degree so I can work again (doctorate). I do miss working; however, I never know when my symptoms will keep me near a bathroom or in bed, so I need a job that is flexible and I can make my own hours (thus the doctorate).

Please let me know if anyone wants to chat.
Reny

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lisa53 | @lisa53 | Oct 16, 2019

My doctors thought I had the refractory type at first. Turns out I have the atypical form of Celiac Disease with its extra-intestinal manifestations which include, among other things, neuropathy.
I continued to have neurological problems despite the GF diet until my PCP thought to take me off the GF pizzas I was eating. It turns out that about 5% of those are contaminated - because they are processed in facilities that also produce regular pizzas. Anyway, my neuropathy has now vanished.
I read that patients with neurological complications are even more sensitive - such that even the foods marked GF can still contain too much gluten. I read that foods marked GF can contain up to 20 ppm. This can add up and trigger symptoms. I now eat mostly food that I know can not contain gluten. It is hard for example, to gluten me with a banana, watermelon, cantelope, etc. I also don't let anyone prepare my food for me. I almost never eat out. It has made all the difference in the world, so it has been worth it in my case.
Good luck to you.

REPLY
airey2 | @airey2 | Oct 16, 2019
In reply to @lighthouseceliac "Oh forgot!! 15% of us cannot do oats of any kind. They are a rotation crop..." + (show)
@lighthouseceliac

Oh forgot!! 15% of us cannot do oats of any kind. They are a rotation crop with wheat fields. Even safe ones make me extremely sick.

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Hello, I am a possible Celiac. I went gluten free f5 yrs ago for another problem. Felt so much better that I decided to get tested for celiac, not realizing that one must be on gluten for an accurate test. I did test positive though in 2 out of 3 areas. I too cannot do oats until last year when my gluten free magazine recommended Purity Protocol type of oats. They are grown in fields reserved for oats only and harvested/processed with equipment reserved for oats only, and they are organic (no pesticides). I have never found Purity Protocol oats in stores, so I order online. I can now enjoy oats again. Most oats say they are gluten free (they are naturally gluten free) but they still make me sick. They must be Purity Protocol.

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