How many of you with neuropathy have celiac disease?

ChookityPop

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How many of you with neuropathy/suspect neuropathy have celiac disease/suspect celiac disease?

Im asking since neurological disorders are thought to occur in 6-10% of people with celiac disease. Disorders like autonomic neuropathy and peripheral neuropathy.

one thing I did before my relapse in 2019 is that I started eating gluten again. I remember eating a ton of cake one evening and woke up and though I was dying. Idk if it was the gluten tho, but my understanding is that gluten is not well tolerated by humans in general.

I have been thinking if the consumption of gluten could have triggered dysautonomia which I strongly suspect. Or possibly SFN which Im testing for soon. In any case I think it wasn't a good move to consume gluten in retrospect.
 

seamyb

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I definitely can't eat gluten and have been this way for years before I got ill. Celiac test was inconclusive though. I've been excellent at gluten free too. If I could choose any food intolerance I'd probably stick with it.
 

xebex

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My sister is officially diagnosed celiac, she doesn’t have neuropathy or ME. My celiac test was negative but I feel much better gluten free and do have some very mild neuropathy but it developed long after I stopped eating gluten. The even weirder thing is I react much more obviously to gluten Than my officially celiac sister.
 

katabasis

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I have SFN and neither blood tests nor intestinal biopsy showed any evidence of Celiac disease. I have a lot of food intolerances, though I have never noticed a particular reaction to wheat/gluten beyond the baseline gastrointestinal symptoms that persist regardless of diet. I'm not currently not eating gluten just because I'm trying to eat a diet that is as minimal/consistent as possible - almost entirely meat and rice.

Theoretically, gluten could cause neuropathy even outside of Celiac disease. Celiac involves a particular immune reaction that causes very histologically-specific damage to the villi of the small intestine, but there are many ways in which the immune system could react to gluten, and this reaction need not even be local to the intestine if you subscribe to the idea of 'leaky gut'. A lot of these possibilities seem to get lumped together under the label of 'non-Celiac gluten sensitivity'. Keep in mind also that other compounds that occur in the diet, such as lectins or casein, might behave similarly to gluten in this sense.
 

ChookityPop

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I have SFN and neither blood tests nor intestinal biopsy showed any evidence of Celiac disease. I have a lot of food intolerances, though I have never noticed a particular reaction to wheat/gluten beyond the baseline gastrointestinal symptoms that persist regardless of diet. I'm not currently not eating gluten just because I'm trying to eat a diet that is as minimal/consistent as possible - almost entirely meat and rice.

Theoretically, gluten could cause neuropathy even outside of Celiac disease. Celiac involves a particular immune reaction that causes very histologically-specific damage to the villi of the small intestine, but there are many ways in which the immune system could react to gluten, and this reaction need not even be local to the intestine if you subscribe to the idea of 'leaky gut'. A lot of these possibilities seem to get lumped together under the label of 'non-Celiac gluten sensitivity'. Keep in mind also that other compounds that occur in the diet, such as lectins or casein, might behave similarly to gluten in this sense.
Very interesting!
I really like that theory. Do people need to have leaky gut for gluten and other compounds to trigger autoimmunity like neuropathy? In theory? I assume the neuropathy caused by gluten would be considered autoimmune, yes?

I have a history with anaphylaxis and lots of food intolerance as well. I have designed my diet similiar to yours where I eat mostly meat, organ meats, egg yolks, raw honey, rice etc. Egg whites can alledgedly trigger autoimmunity. I really think it is something to the triggers in food. There are lots of compounds in food that can trigger people. Thousands of anecdotes of people reversing their autoimmune diseases with the carnivore diet. Really interesting.
 

katabasis

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Very interesting!
I really like that theory. Do people need to have leaky gut for gluten and other compounds to trigger autoimmunity like neuropathy? In theory? I assume the neuropathy caused by gluten would be considered autoimmune, yes?
So, my understanding of the pathophysiology is a little shaky, but gut membrane permeability does seem to govern many (but maybe not all) aspects of the immune reaction to gluten or similar compounds.

For the most part, immune cells (T cells, B cells, etc.) are not present in the intestinal lumen - they are sequestered behind the epithelium in the lamina propria. Instead, dendritic cells that branch through the epithelium detect bacterial metabolites, and release cytokines, indirectly triggering the production of immunoglobulins, which then diffuse back into the lumen where they target bacteria or other antigens. However, gluten and other prolamins disrupt the tight junction in between epithelial cells, which allows larger molecules (such as proteins) to pass through the epithelium. Note that even in healthy people, gluten can increase gut permeability.

In people with Celiac disease, the immune system overreacts to the presence of prolamins, such as by the transglutaminase enzyme which is meant to help deal with the prolamins. But as I said before, it's likely there are many types of dysfunctional immune reactions to gluten as well as other proteins. I'm not a hundred percent sure, but this is probably due to antibodies that are being generated locally, in the lamina propria and deeper parts of the mucosa, eventually entering systemic circulation.

I have a history with anaphylaxis and lots of food intolerance as well. I have designed my diet similiar to yours where I eat mostly meat, organ meats, egg yolks, raw honey, rice etc. Egg whites can alledgedly trigger autoimmunity. I really think it is something to the triggers in food. There are lots of compounds in food that can trigger people. Thousands of anecdotes of people reversing their autoimmune diseases with the carnivore diet. Really interesting.
There are a lot of ways which a really restrictive diet such as the carnivore diet could be helping in autoimmune disease. Obviously, without carbohydrates, there are going to be massive changes to the gut flora and thus what chemicals the dendritic cells detect. And between the absence of carbohydrates and the absence of inflammatory plant proteins, there be less of an immune reaction in the lamina propria, as well as possibly improving the integrity of tight junctions to begin with.