[Marty SLC]

Hi all,

I have PN and want to try and see if gluten is dong the damage. I don't have the money for more test so is it advisable to go gluten free without testing?

What test does one need BTW? Is it expensive??

- Marty

[glenntaj]

--if you decide to go gluten-free. A dietary change does not require the permission of any medical professional, or anybody else, though there might be a significant learning curve--gluten is used as a binder/emulsifier in so many processed foods that it's probably best to avoid processed foods in general, and stick to simle meats, frutis, vegetables, nuts, etc. (anything you don't have any other reaction/sensitivities to).

The usual celiac/gluten sensitivity "mainstream" tests are the anti-gliadin IgA and IgA tests and the anti-transglutaminase IgA test (along with a total IgA assay to ensure there's enough IgA in your body to make the other tests somewhat accurate--a certain proportion of people have congenitally low IgA so these test are not very accurate for them). The transglutaminase test is most associated with the villous atrophy caused by farnk celiac, though many with gluten sensitivity, and neurologic symptoms of it, have presented with isolated anti-gliadin titres. Somwhat outside the mainstream are the kind of tests done by Enterolab in which stool samples are tests for fat malabsorption and anti-gliadin/anti-transglutaminase (the theory being that these would show up in stool well before they would in serum).

I believe these tests are not particularly expensive, though much depends on the lab. Looking through the Gluten File in the useful websites section of this board should help you find out.

There is decent evidence now that people who are gluten sensitive can get neuropathy from it; but you will have to see if your neuropathy slows/arrests if you go gluten-free. Some have reported a stabilization, but fewer have reported reversal.

[darlindeb25]

Some people who are gluten intolerant have DQ1 genes, which are not considered celiac, but are the genes that often cause neuropathy in a gluten intolerant person. Going gluten free can definitely be an individual decision, you do not need a doctor's permission to improve your health. If I had waited for that, I would still be very sick.

I have some who know I am celiac, some who do not, Quest Labs said I do not have the proper genes for celiac. One day, they will realize celiac is much bigger than they think now.

[annelb]

I have peripheral neuropathy. I went GF 6 years ago. I had improvement in my PN for the first 18months. My neuropathy was very painful. I had to sleep with my feet dangling off the side of the bed so nothing would touch them. I was having difficulty walking. The tingling had extended up both my legs into my trunk. My arms tingled all the way up to my shoulders. My balance was slightly off.

The tingling of my limbs is gone. My feet, although still quite numb, are not painful anymore. I don't limp and my balance is better. Recently I have noticed that I can feel temperature on the soles of my feet - this is a new change.

I don't know if my neuropathy would show improvement by the doctor tests, but I do know that my feet are not limiting what I do.

Yes, you can go GF without testing. The only caution is IF you want to find out if you have celiac disease, you would have to go back on gluten for the testing. I used Enterolab. These tests cannot tell you if you have celiac disease, but it can test for antibodies and an immune reaction to gluten. You do not have to go back on gluten if you want to use Enterolab. It is a stool test and if you have antibodies to gluten, this test will be positive up to 2 years...maybe even longer.

I was going to start a GF diet without testing, but when I found out how strict I had to be to do an honest GF trial, I wanted some proof that I really needed to do this. That is why I used Enterolab. The least expensive test would the the Antigliadin IgA for $99. I do know a number of people who have gong GF, felt better, and never looked back. It all depends on you. If you do a GF trial, make it an honest trial and get rid of all the traces and hidden sources of gluten.

Good luck and let us know what you decide to do.
Anne

[ddlennon]

Hello, everybody I have read where gluten senitivity or celieac disease can cause epilespy has anyone with celieac disease or gluten senitivity had there seizures stopped by a gluten free diet?

[jccgf]

Hi ddlennnon,

I've been posting information about gluten sensitivity/celiac disease and seizures for about eight years now. I suspected my daughters seizures might be related to gluten sensitivity. Her seizures improved a great deat with vitamin B6, and later we found she has a condition called pyroluria or "high mauve"... and people with this condition often have gluten/casein sensitivity. Our story can be found at the bottom of the main page of The Gluten File, linked under my signature.

I have since met quite a few people whose seizures improved or were controlled by dietary changes and/or vitamins, especially B vitamins.

Sometimes casein or other food sensitivity can be involved as well.

I think anyone with seizures, or any neurological condition of unknown cause for that matter, should be screened for gluten sensitivity using antigliadin IgA and IgG antibodies. If there is a family history of any autoimmune disease, all the more reason to suspect gluten sensitivity. Testing for celiac disease requires additional tests.

There are over 50 references on pubmed to date about gluten and seizures, so it is a little perplexing that routine screening isn't done on seizure patients, especially those who have other risk factors.

Here are some pages from The Gluten File on diagnostic testing:
Diagnostic Testing
The Gray Zone

On seizures:
Seizures/Epilepsy

On pyroluria:
Pyroluria

Hope this helps!

Cara

[ddlennon]

Hi, Cara Thank you for the information and I am going to try a gluten free diet after I come back from my doctor's office and after I get my result's from the celiac disease and also a test to see if I am gluten sensitive. I have the celiac disease pamphlet to take to my doctor's office. Have anyone got the celiac disease pamphlet and if so is that something that I should take with me so my doctor will get some good information about celieac disease? And what websites should I print to take with me also? DEE-DEE

[jccgf]

The University of Maryland Center of Celiac Research is a great source of information. It is a highly reputable source (Dr. Fasano is one the top celiac researchers, if not THE top) . In addition, they still recommend the full celiac panel, which include antigliadin antibodies.

http://www.celiaccenter.org/celiac/faq.asp#blood

What are the recommended blood tests to diagnose CD?

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.
tTG-IgA or tissue transglutaminase-IgA
AGA-IgG or Antigliadin IgG
AGA-IgA or Antigliadin IGA
Total IGA
The presence of tTG antibodies is highly suggestive of CD, while AGA can be elevated also in cases of wheat allergy.

Here are two great articles put out by the AAFP (good to print out):

Detecing Celiac Disease in Your Patients by HAROLD T. PRUESSNER, M.D.,
http://www.aafp.org/afp/980301ap/pruessn.html

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think
DAVID A. NELSEN, JR., M.D., M.S
http://www.aafp.org/afp/20021215/2259.html

And this one:
http://digestive.niddk.nih.gov/ddise...liac/index.htm


This may be the best overall reference specifically in regard to seizures:

From:
Is the prevalence of celiac disease increased among epileptic patients?June 2003
PRATESI, Riccardo, GANDOLFI, Lenora, MARTINS, Rita C. et al. Is the prevalence of celiac disease increased among epileptic patients?. Arq. Neuro-Psiquiatr. [online]. 2003, vol. 61, no. 2B [cited 2006-08-23], pp. 330-334. Available from: <http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2003000300002&lng=en&nrm=iso>. ISSN 0004-282X. doi: 10.1590/S0004-282X2003000300002.

"Taking our findings into account and reviewing previously published studies, some general observations concerning the association between epilepsy and CD can be brought forward:

(a) in many epileptic patients CD is asymptomatic or disclose only mild or atypical features14,15;

(b) epilepsy without cerebral calcifications, may be an early manifestation of CD, with calcifications developing later30;

(c) early identification and treatment of CD may reverse the tendency to epilepsy and probably to the development of calcifications16;

(d) seizures seen in association with CD are frequently difficult to control and, at least in some cases, this is due to poor AEDs absorption resulting from the concurrent enteropathy17;

(e) if CD is not precociously diagnosed, epilepsy will have propensity to progress in severity, evolving to a degree in which, even the introduction of GFD will fail to ameliorate the clinical picture17;

(f) although generalized forms of epilepsy are seen that, at times, rapidly evolve to a severe and progressive encephalopathy suggestive of Lennox-Gastaut syndrome31, partial complex seizures with involvement of the occipital lobes are more frequent16.

In conclusion, a greater attention is needed to the possible coexistence of CD in epileptic patients. Although a systematic screening for CD in all epileptic patients seems to be, at the present time, neither practical nor cost-effective, it seems reasonable to screen at least all patients with complex partial seizures, especially when associated with occipital paroxysms and resistance to drug therapy."

I have the full text of this article. If you would like it send me a pm with your email addy and I will email it to you.

I noticed the links I left above were broken:
http://jccglutenfree.googlepages.com/diagnostictesting
http://jccglutenfree.googlepages.com...ndstooltesting
http://jccglutenfree.googlepages.com/seizuresepilepsy
http://jccglutenfree.googlepages.com/pyroluria

[Merrilee]

This is a bit of the point of your original question, but I am wondering if you have a blood glucose meter?

Anything that you eat that sends your blood glucose above 140 can contribute to PN. The bloodsugar101 website has details on this and how to use test strips economically.

The reason I mention this is that eliminating gluten may not be enough, but the meter can help you determine if you're having trouble with any other foods in an inexpensive way.

[Marty SLC]

Originally Posted by annelb

I have peripheral neuropathy. I went GF 6 years ago. I had improvement in my PN for the first 18months. My neuropathy was very painful. I had to sleep with my feet dangling off the side of the bed so nothing would touch them. I was having difficulty walking. The tingling had extended up both my legs into my trunk. My arms tingled all the way up to my shoulders. My balance was slightly off.

The tingling of my limbs is gone. My feet, although still quite numb, are not painful anymore. I don't limp and my balance is better. Recently I have noticed that I can feel temperature on the soles of my feet - this is a new change.

I don't know if my neuropathy would show improvement by the doctor tests, but I do know that my feet are not limiting what I do.

Yes, you can go GF without testing. The only caution is IF you want to find out if you have celiac disease, you would have to go back on gluten for the testing. I used Enterolab. These tests cannot tell you if you have celiac disease, but it can test for antibodies and an immune reaction to gluten. You do not have to go back on gluten if you want to use Enterolab. It is a stool test and if you have antibodies to gluten, this test will be positive up to 2 years...maybe even longer.

I was going to start a GF diet without testing, but when I found out how strict I had to be to do an honest GF trial, I wanted some proof that I really needed to do this. That is why I used Enterolab. The least expensive test would the the Antigliadin IgA for $99. I do know a number of people who have gong GF, felt better, and never looked back. It all depends on you. If you do a GF trial, make it an honest trial and get rid of all the traces and hidden sources of gluten.

Good luck and let us know what you decide to do.
Anne

Anne,

Thanks for sharing your battle with pn and that's great you have made progress. I've just recently noticed a big improvement by taking some supplements that are known to help with pn.

Question to all,

What is this Enterlab? Does one ask thier doctor to send the sample there? One sends it there or what?

Is the Antigliadin IgA the blood test done? Was this done at Enterlab for 99$?

Sorry for my confussion. LOL
Marty