Going gluten free without testing

Marty SLC · 08-13-2009, 10:54 AM

Quote:

Originally Posted by 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

Cara,

Have you tried some of the new B vitamins? They are the versions that are already converted into the form the body can use directly. Also magnesium could help but this to must be from a good source, not in the "oxcide" form.

Thanks for the help

Marty SLC · 08-13-2009, 11:52 AM

Quote:

Originally Posted by 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.

I'm not diabetic so would this help in my case? Also are these strips the urine type?

Marty SLC · 08-13-2009, 11:58 AM

Ok so these are the suggested tests.

tissue transglutaminase-IgA or tTG-IgA
Antigliadin IgG or AGA-IgG
Antigliadin IGA or AGA-IgA
Total IGA

Marty SLC · 08-13-2009, 12:27 PM

Well I went GF from about 2 weeks and found out how hard it is to do. I’m a male who cannot cook anything so all I was eating was rice and potatoes. The day I quit the GF diet was the day when I went on an extremely demanding hike that took 12 hours and covered 18 miles. I needed complex carbo’s and didn’t plan well enough nor knew enough to come up with alternatives to whole wheat spaghetti for the night before the hick, power bars etc during the hike. Everyone wanted to stop for pizza on the way as well. I realized that if I’m going to committee all the way to this way of life then I want the test. Complex carbo’s are a big part of my life and it’s really difficult for me as a male that can’t cook nor make food to come up with a food plan. So for now I’m back on gluten but I have a physical in November and will ask for the test. I also thought I needed to be eating gluten for the blood test to be accurate but I have now read up a bit and found out that a stool sample can be taken while on a GF diet, correct?

Thanks for all your help guys!

Merrilee · 08-14-2009, 09:43 AM

Quote:

Originally Posted by Marty SLC

I'm not diabetic so would this help in my case? Also are these strips the urine type?

*edit*

get a meter and test for yourself. Be sure to buy the correct strip for the brand of meter you chose. The Accura Aviva is considered to be a reliable, accurate and consistent meter.

Good luck with your testing.

jccgf · 08-18-2009, 06:53 PM

Quote:

Originally Posted by Marty SLC

Well I went GF from about 2 weeks and found out how hard it is to do. I’m a male who cannot cook anything so all I was eating was rice and potatoes. The day I quit the GF diet was the day when I went on an extremely demanding hike that took 12 hours and covered 18 miles. I needed complex carbo’s and didn’t plan well enough nor knew enough to come up with alternatives to whole wheat spaghetti for the night before the hick, power bars etc during the hike. Everyone wanted to stop for pizza on the way as well. I realized that if I’m going to committee all the way to this way of life then I want the test. Complex carbo’s are a big part of my life and it’s really difficult for me as a male that can’t cook nor make food to come up with a food plan. So for now I’m back on gluten but I have a physical in November and will ask for the test. I also thought I needed to be eating gluten for the blood test to be accurate but I have now read up a bit and found out that a stool sample can be taken while on a GF diet, correct?

Thanks for all your help guys!

I was on vacation, and lost track of some of these threads.

Yes, you must be eating gluten for the blood testing to be accurate. The blood antibodies can come down in just a couple weeks.

The stool test will show antibodies for much longer, up to two years.

Sorry to hear you had trouble with the diet. Next time you decide to try you'll have to ask for more ideas. There is a learning curve, but there is plenty of food you can eat... including those carbs needed for exercise... but in various gf versions.

Remember when you having the testing done in November to insist they include the anti-gliadin antibodies as part of the testing.

Yes, I use methylcobalamin B12, P5P B6, and Magnesium glycinate... you are right.. magnesium oxide is pretty worthless. My mom was on dr. prescribed really high doses of magnesium oxide and it did nothing. I switched her to magnesium glycinate and her level finally reached normal ranges. For my daughter with pyroluria, we get a combo P5P B6/ magnesium glycinate vitamin.

darlindeb25 · 09-17-2009, 07:15 AM

Quote:

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.

I have to edit this post. I have been doing a lot of research, and now I know, celiac disease is a very tiny part of gluten intolerance. Gluten intolerance is much bigger, and much less is known about it. So many of us were given negatives on celiac disease, and told gluten isn't our problem. It's simply not true. What needs to be done, is more study into gluten intolerance, and a method of testing for it.

Neuropathy can be every bit as devastating as celiac, especially if you do not know that gluten is the problem.

Merrilee · 09-29-2009, 03:55 PM

I just realized my post had been edited. Sorry for the error!

Here is the citation for the study I had in mind. The bloodsugar101 website mentions several more.

The spectrum of neuropathy in diabetes and impaired glucose tolerance.
C.J. Sumner, MD, S. Sheth, MBBS MPH, J.W. Griffin, MD, D.R. Cornblath, MD and M. Polydefkis, MD;
Neurology 2003;60:108-111

I repeat, high blood glucose can contribute to PN in non-diabetics.

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