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Sunshine_Lollipop

Neurogenic Celiac?

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I think I have neurogenic celiac, but I have not been officially diagnosed. I can't get the blood test because I have been off of gluten for a couple of years already. I currently need help sorting out some other allergies and nutritional deficiencies as well - knowing whether this is celiac or just extreme gluten-sensitivity with some other allergy related problems would be very helpful.

Which doctor should I go to for more information: a GI, a GP, a Neurologist, or other?

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I think I have neurogenic celiac, but I have not been officially diagnosed. I can't get the blood test because I have been off of gluten for a couple of years already. I currently need help sorting out some other allergies and nutritional deficiencies as well - knowing whether this is celiac or just extreme gluten-sensitivity with some other allergy related problems would be very helpful.

Which doctor should I go to for more information: a GI, a GP, a Neurologist, or other?

I am in the same boat.

I'm currently trying to work out finding a good family practice. With my military insurance I have to be referred to a specialist and they either have to be willing to let me if I want to...OR...listen to my concerns and feel I do have reason to go.

I will let you know if I find out anything helpful.

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I am not sure what you mean by neurogenic celiac. I call what I have neuroceliac because at this point it mostly affects my brain but neurogenic would mean something like it originates in the brain?

The doc to go to depends probably on your symptoms and in any case it will likely be hard for them to consider celiac as a cause of neuro symptoms because most American doctors know so little about that, even docs who happen to be familiar with classic (i.e. gut symptom) celiac.

If you are showing symptoms you may have more success with the blood test than you think... I was dizzy, having trouble walking, nauseated, and having trouble with my eyes (not being able to focus, peripheral vision losses) crushing headaches, pulsatile tinnitus.....

I had been knowingly eating wheat intermittently for years, every couple weeks or months - enough to keep my fibromyalgia symptoms under control - but I wasn't sure that would be enough to get a diagnosis when the neuro symptoms started. I ate a huge quantity of wheat one night, got really sick, and got the blood test the next day. I will let you know what my results were. IN the meantime I figured out I had been getting very frequent exposure to gluten that I knew nothing about from how restaurants were cooking the meat I ate (spice mixes and dusting with flour to keep from sticking to grill) and at home from Tasty Bites which I think has no added gluten but is made in a facility that uses gluten in some of their mixes.

The take home message is that if you are having symptoms that are truly caused by gluten you have to have circulating antibodies and that may be enough to get the diagnosis. I will let you know how my test results come out as a check on that idea.

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Thank you for the advice :)

Yes, I suppose I mean neuro celiac - I think I had heard someone else use the term neurogenic celiac. Generally "genic" means generates, or creates. Like the cyanogenic glucoside in flax creates cyanide when it comes in contact with glucose. So I had assumed neurogenic means it generates neurological symptoms.

I really haven't had wheat for years - I was having such strong reactions to wheat and other foods that I had to stop eating out entirely, and now I make everything from scratch at home. When I do eat wheat I feel absolutely bonkers, so there's no chance that I'd go back on even for a short time. However I also have some other allergies, and I suspect they may be complications from celiac. That is why I am hoping to find a doctor who is familiar with neuro celiac so they can help me sort out all the layers of the problem.

I had a blood test fairly recently but it obviously didn't show anything since I've been off of wheat for four years at least.

I am not sure what you mean by neurogenic celiac. I call what I have neuroceliac because at this point it mostly affects my brain but neurogenic would mean something like it originates in the brain?

The doc to go to depends probably on your symptoms and in any case it will likely be hard for them to consider celiac as a cause of neuro symptoms because most American doctors know so little about that, even docs who happen to be familiar with classic (i.e. gut symptom) celiac.

If you are showing symptoms you may have more success with the blood test than you think... I was dizzy, having trouble walking, nauseated, and having trouble with my eyes (not being able to focus, peripheral vision losses) crushing headaches, pulsatile tinnitus.....

I had been knowingly eating wheat intermittently for years, every couple weeks or months - enough to keep my fibromyalgia symptoms under control - but I wasn't sure that would be enough to get a diagnosis when the neuro symptoms started. I ate a huge quantity of wheat one night, got really sick, and got the blood test the next day. I will let you know what my results were. IN the meantime I figured out I had been getting very frequent exposure to gluten that I knew nothing about from how restaurants were cooking the meat I ate (spice mixes and dusting with flour to keep from sticking to grill) and at home from Tasty Bites which I think has no added gluten but is made in a facility that uses gluten in some of their mixes.

The take home message is that if you are having symptoms that are truly caused by gluten you have to have circulating antibodies and that may be enough to get the diagnosis. I will let you know how my test results come out as a check on that idea.

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