Hi!

I just saw a new neurologist yesterday and she thinks that I may have celiac neuropathy. I have been on the GF diet now for almost 6 years, and lately have been having major weakness and numbness in both of my hands. I have dealt with other kinds of PN over the last 10 years, but this seems different.

I have neurological celiac and celiac ataxia.

If this is celiac neuropathy, what, besides the GF diet, can be done about it? and how does it progress?

On Friday I go back for nerve conduction testing.

Mary Rosser / MR (for short)

Hi Mary,

Has your doctor tested your B12 level, and do you know what the result was?

Celiac neuropathy can be caused by both immunological and nutritional factors.

Has your doctor run follow up antibody tests on you to see whether your antigliadin and celiac related antibodies are negative? Hidden gluten can sneak up on even the most vigilant.

You might also want to consider other foods as being causative, particularly cow's milk, but also yeast, legumes, etc. The MS-Direct site uses a dietary approach to treat MS, removing gluten, but these other foods, too. I'm not suggesting you have MS, just that they use a dietary approach for treating the neuropathy of "MS" with some good results in many people. (see the MS page of The Gluten File for the link or google it)

If you are sure you are 100% gluten free (with negative antigliadin antibodies), you might consider removing these other foods, too. There is not as much in the medical literature in regard to cow's milk and PN as there is about gluten and PN, but some people do appear to benefit from removing additional foods. You could also do IgG food allergy testing, and remove any foods you are positive to. IgG food allergy testing is somewhat controversial, but we've seen the neurological problems gluten can cause even in the absence of Celiac Disease. Why not other foods? (see food allergy page of TGF)

Also be sure you don't have any underlying nutritional deficiencies. I'd take a multivitamin, B-complex, and 1000mg of B12 for sure to cover those nutritional bases. There are other supplements that may be useful to PN and ataxia patients, too, like vitamin E, CoQ10. If you check the individual pages for PN and ataxia in The Gluten File, you will probably find mention of them.

Do you take any prescription drugs, and are they known to cause neuropathy? I think this first article mentions which drugs can cause neuropathy. You might find the other articles helpful, too.






Other food intolerance, nutritional deficiency, and medications are all things to be considered (and there are more things, too). If you are new to BT, there is also a Peripheral Neuropathy board and many of them use a nutritional regimen with varied success.


Cara

Hi Cara,

Thank you very much for all this information. I will take all this to my doctors and this will help to figure things out.

MR

You're welcome, and good luck! Two more things I didn't mention, and are probably in the articles and may have already been tested for, are diabetes and thyroid disease. The important thing is that there are many possible causes for neuropathy, and you want to keep looking for additional factors that may be contributing.

Keep us posted .

Cara

P.S. I want to stress the importance of B12... because B12 deficiency can cause both PN and ataxia (and a whole lot more). It commonly goes undetected when it occurs in the absence of anemia (and it often does). You want a B12 level that is upper range or over the top if you have any neurological symptoms. The blood levels can normalize quickly, so don't start supplementing until after blood is drawn for testing. The repairs can take months to years depending upon the degree and duration of damage. There are a couple of pages devoted to B12 deficiency in TGF.

Hi Mary,

I was diagnosed with MS in 1998. A gluten free diet has helped in that my neurological symptoms have not gotten worse. However, I have had tingling and numbness in my feet and legs for many years. There really never seemed to be a reason. This summer I had delayed food allergy testing run by York labs http://www.optimumhealthresource.com/ because my son had been found to have a lot of food allergies. I learned I had high reactions to dairy, eggs, soy, legumes, citrus and a few other foods in addition to gluten. Since I have removed these addtional allergens from my diet I have had a substantial decrease in the neurological symptoms in my legs.

Cara included this in her comprehensive response but I just wanted to let you know what has helped me personally.


--Judy

Want to wish you well on your tests tomorrow.

I have PN that is related to gluten. Three years ago I discovered that I was gluten sensitivit through Enterolab. I have had wonderful results from a GF life. I also test positive to yeast, egg white, dairy and soy and have recently been serious about elminating all of these. I think I am seeing further improvement - will let you know in a few months.

I also wanted you to know that dietary changes made a positive difference in my life.

Let us know the results.
Anne

Hi!

I did my testing, and it ruled out large fiber PN and indicates small fiber PN. I have not had a follow up apointment yet, still waiting for the doctor to write up her report and send it to me.

Mary Rosser

Hi there,
I have been diagnosed with celiac disease last month and have started a gluten free diet. I am having serious migraines throughout the day and I have numbness and tingling in my hands. My feet and hands swell by time I lie down for bed and my skins hurts so bad sometimes. I have no idea what this means or if it is just a side effect of celiac disease. Please help me with any information you may have.

Hi Stacey,

A lot of the symptoms you mention made me think first of Vitamin B6 deficiency (migraines, numbness and tingling in hands). My daughter had numbness and tingling in her hands that we dubbed "morning hands" and also facial swelling when B6 deficient (edema). I've seen edema listed as a possible symptom of deficiencies of vitamins B1, B6, B12, and E... there may be others.

If you are not taking any vitamins, you might try a good B complex... and be sure to get at least 1000mcg of B12 daily. Try to find one with methylcobalamin form of B12 and P5P type of B6. Country Life and Jarrow and NOW are among many brands you can look for online at Iherb.com or Vitamin World or any number of online vitamin stores. Be sure your vitamins and all medications are gluten free.

If none of those symptoms started until after you removed gluten... I might wonder about withdrawal symptoms in the first week or two, or EXPOSURE symptoms beyond then. Are you sure you are elimination ALL gluten. Even small amounts (cross contamination) can cause reactions in some people, and reactions to gluten exposure can absolutely worsen once gluten has been removed from your diet. I have heard of people who "swell up" as a symptom of gluten exposure.

If you are new to celiac disease... have you seen any checklists for commonly missed gluten exposure/ cross contamination sources? Do you share the house with gluten eating persons?

I have heard of skin hurting as a type of neuropathy pain, same with numbness and tingling. While gluten exposure can cause neuropathy so can vitamin deficiency... reference quoted earlier in this thread.

I'm not sure if your symptoms are all related to swelling caused by edema, or neuropathy. The swelling makes me think your symptoms of numbness, tingling and skin pain are all related to the edema.

Are you taking any medications that could cause edema as a side effect? Have you checked with your doctor about your swelling? I think you should be sure to check in with your doctor on this.

Thanks for replying. I just saw my doctor yesterday and she put me in for a bunch of blood tests. My liver numbers came back high and I was placed on synthroid to help my thyroid. Also, my labs showed that I am anemic also. I hope that they do not find anything else.