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Gluten Ataxia (only)?

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I said I would tell you about the neurological testing experience at NIH.

I had the great NIH excursion yesterday. It was, as I expected, the medical version of the Inquisition. Initially you read and sign all the paperwork that acknowledges that you are now a research subject. I was questioned endlessly --first by individual interviewers, then by the investigating neurologist who hit me with little hammers, stuck me with pins, tested for sensory deprivation and made me demonstrate all my neuro quirks and problems. All this and then finally you get questioned by a panel of neurologists.

There were five people being interviewed that day. Each one goes through the same processs. The individual neurologist presents your 'case' to the panel and then the patient is ushered into the conference room (individually) where all these neuo wizards are sitting around a long oval table. Some of them ask questions but it is primarily the head honcho (of NIH neurology dept) who does the talking. He does some examination, tests etc. - and of course more and more questions.

After that session, you wait. A lot of time is spent waiting. Then the neurologist who did the initial interview (the one who presented my 'case') comes back and takes you to an office where she tells you the conclusions of the panel. While I was waiting they were back there in a huddle discussing my 'case',

In my case, they believe that the referring neurologist was correct in his diagnosis of spinocerebellar ataxia but they now want to do the genetic testing to confirm and establish which one of the many varities it is. They suspect SCA6. Time will tell. They did agree that if this is not the correct diagnosis then they will look more closely at Celiac Disease. In fact they thought I well may have both disorders! They agreed that gluten should be removed from my diet. I have been gluten-free since August 9 - this year.

It was late in the day so the lab was closed and I couldn't get the blood drawn for the test. As I can't get back there right away, I have to wait until Nov 1 when I am going into that area to the dentist.

Once the blood goes off to the lab then it is just a waiting game. I will not have results before early to mid January.

In the meantime, I may just have the genetic Celiac test (swab) done by Kimball Labs. That will at least tell me whether Celiac is a possibility. If there are no markers then that door is closed. Closing a door is always positive. One less thing to think about. Claire

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In the meantime, I may just have the genetic Celiac test (swab) done by Kimball Labs. That will at least tell me whether Celiac is a possibility. If there are no markers then that door is closed. Closing a door is always positive. One less thing to think about.    Claire

<{POST_SNAPBACK}>

Claire,

According to what I saw on the Kimball website their Celiac DNA test only looks for the DQ2 and DQ8 Celiac versions of the HLA-DBQ1 gene. Given your neuro symptoms, if this is indeed true, I would recommend having the DNA testing done by Enterolab where they check for not only celiac disease gene alleles but also non-celiac disease gluten sensitivity alleles as well. Their price is ~$150 for the the test. I tested with them and turned out not to have the DQ2 or 8 gene but to have a double copy of DQ1 which is more related to neuro problems due to gluten sensitivity. I have mild peripheral neuropathy and restless leg syndrone, both of which are improving after about 4 months gluten-free.

Also I highly recommend the BrainTalk forums I mentioned earlier in this thread - and not just the Gluten Sensitivity one but the ones for specific neuro problems like ataxy and peripheral neuropathy. Also "Dangerous Grains" by Braly & Hoggan is very good at describing the dangers of non-celiac disease gluten sensitivity.

Best Wishes.

George

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Claire,

According to what I saw on the Kimball website their Celiac DNA test only looks for the DQ2 and DQ8 Celiac versions of the HLA-DBQ1 gene.  Given your neuro symptoms, if this is indeed true, I would recommend having the DNA testing done by Enterolab where they check for not only celiac disease gene alleles but also non-celiac disease gluten sensitivity alleles as well.  Their price is ~$150 for the the test.  I tested with them and turned out not to have the DQ2 or 8 gene but to have a double copy of DQ1 which is more related to neuro problems due to gluten sensitivity.  I have mild peripheral neuropathy and restless leg syndrone, both of which are improving after about 4 months gluten-free.

Also I highly recommend the BrainTalk forums I mentioned earlier in this thread - and not just the Gluten Sensitivity one but the ones for specific neuro problems like ataxy and peripheral neuropathy.  Also "Dangerous Grains" by Braly & Hoggan is very good at describing the dangers of non-celiac disease gluten sensitivity.

Best Wishes.

George

<{POST_SNAPBACK}>

Hi George. Thanks for the message.

What you say about Kimball is true of course. I must admit to trying to do this 'on the cheap' I can get insurance coverage for Kimball and not for Enterolab. I know I have a gluten problem. The grain issue was found a long time ago. If this test does not show DQ2 - DQ8 markers then I know the issue is sensitivity. I will at sometime have the Enterolab test but with rising costs - including health insurance - I have to do this the least expensive way. Obviously this will tell me something. I am gluten-free regardless - several neurologists have agreed that gluten-free is the way to go when facing neurological problems such as mine.

I am both reader and poster at Brain Talk. I have read Dangerous Grains and a good many other materials on the subject - not to mention being an incurable researcher. I was a Rehabilitation Therapist (OT/PT/REC) before leaving the health care field. Ironic to now be the patient. Claire

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Hi George. Thanks for the message.

I am both reader and poster at Brain Talk. I have read Dangerous Grains and a good many other materials on the subject - not to mention being an incurable researcher.  I was a Rehabilitation Therapist (OT/PT/REC) before leaving the health care field. Ironic to now be the patient.  Claire

<{POST_SNAPBACK}>

I hear you on the testing costs - they add up pretty quickly. Your strategy makes excellent sense.

Sorry about the redundant recommendations, but I tend to loose track of who seems familiar with which info. I find myself probably too often trying to educate re "not celiac disease - just gluten sensitivity", but there seems to be a need - even on a celiac disease forum such as this. I hate to have people feel that if they don't have the celiac disease genes or villi damage then it's all right to be "only mostly gluten-free".

We probably cross paths on the BrainTalk forums as well.

Best wishes on resolving your health issues.

George

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Hey guys -- what optimum timing! I just received a call notifying me of a cancellation in the rheumatologist's office where my neuro doc referred me, so they're bringing me in early. I've seen him before, so he will order any and all lab work with little convincing. He's a great guy. If you would, could you please list the genetic tests for which I should ask? I've had Anti-Gliadin (IGg, IGa), Anti-Transglutaminase, Antiendomysial, and the whole rheumatology antibody work-up. The only genetic testing I've had so far is HLA B-27. Since you guys are very knowledgeable, I've also had Hashimoto's thyroiditis (had to have my thyroid removed it was an "ingrown" goiter vs. "outgrown"). Don't know if there are any ties with that and my gluten sensitivity. Don't get me wrong, I'm concerned about me, but my biggest concern at this point is that I have two kids, 23 and 19, and if this is a genetic disorder, I WANT THEM TESTED IMMEDIATELY. Any help you can give me, I really appreciate.

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Also, where is the Braintalk forum? I would love to take a look -- I've already learned so much from this, it would be nice to see a site which is strictly neuro. Also, Claire, what type of rehab professional are you? I feel the same way -- I was the practitioner, now I'm the patient. (I used to MEASURE people for wheelchairs -- now I'm in one)

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If you would, could you please list the genetic tests for which I should ask?  I've had Anti-Gliadin (IGg, IGa), Anti-Transglutaminase, Antiendomysial, and the whole rheumatology antibody work-up.  The only genetic testing I've had so far is HLA B-27.  Since you guys are very knowledgeable, I've also had Hashimoto's thyroiditis (had to have my thyroid removed it was an "ingrown" goiter vs. "outgrown").  Don't know if there are any ties with that and my gluten sensitivity.  Don't get me wrong, I'm concerned about me, but my biggest concern at this point is that I have two kids, 23 and 19, and if this is a genetic disorder, I WANT THEM TESTED IMMEDIATELY.  Any help you can give me, I really appreciate.

<{POST_SNAPBACK}>

I had my DNA tested at Enterolab for gluten sensitivity. They seem to look for the largest number of gene alleles (variations) compared to other labs I found. The DNA gene nomenclature is very confusing, but here's info mostly from Enterolab.

The older methods of DNA analysis provided what is called serologic results. Today they do molecular DNA testing which is more detailed and then they (at least Enterolab) translates these results back into the more familiar "serologic equivalent" nomencature. The serological results look like HLA-DQB1 DQ2 for example. The newer molecular results look like HLA-DQB1*0201 for example.

According to info from Enterolab:

"

The gluten sensitive, celiac genes are HLA-DQB1*0201 and HLA-DQB1*0302

(HLA-DQ2 and HLA-DQ8, respectively).

The other gluten sensitive genes are any molecular type involving another

HLA-DQB1*03 number (i.e., HLA-DQ3), or any HLA-DQB1*05 number, or any

HLA-DQB1*06 number (i.e., HLA-DQ1)

"

The testing you have done should be able to detect at least all of these alleles. Unfortunately I hear that many labs only test for the celiac genes and not for the gluten sensitive genes since the GS genes are still controversial to most mainstream dr's.

George

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I have been off the Celiac forum for several weeks.  I am pretty frustrated.  I have no antiendomysial antibodies, no transglutaminase antibodies, and my small bowel biopsy was negative.  Hence, no celiac disease.  The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.

I am now in a wheelchair.  I thought things had plateaued, but found out yesterday from the neurologist that I'm getting worse.  I've been to Hopkins and Mayo, and have found out that basically, the neurologists there pompous (      s) insert whatever expletive you choose. 

Every article I have read about gluten ataxia gives a really grim prognosis for my symptoms improving.  Each says that the goal is to stop the progression, but none that I've read mention return to prior function.

Does anyone know ANYTHING that can help me with this??  My neurologists have suggested (months ago) that I apply for Social Security disability, but I have refused, continuing to believe that I'm going to get better.  Am I fooling myself?

Any help you can give me would be greatly appreciated

<{POST_SNAPBACK}>

I also have ataxia. I've read of a study where large doses of B12 improved the conditions of some patients. I've also been told that the disease is progressive, and the best you can do is to slow down that progression. CoQ10 was found to do just that. (Just at the moment, I'm not exactly sure which vitamin went with which study, but I do know for sure that they are both beneficial.)

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Also, where is the Braintalk forum?  I would love to take a look

<{POST_SNAPBACK}>

The main BrainTalk forums index is at:

http://brain.hastypastry.net/forums/index.php?

Scroll about 1/4 way down this very long page to find the forums for "specific neurological conditons" listed alphabetically.

The "Gluten Sensitivity/Celiac Disease" forum is at:

http://brain.hastypastry.net/forums/forumdisplay.php?f=141

Of special interest is the 2nd item on this index, "The Gluten File" with lots of great links. Even this forum is skewed toward the neurological effects of gluten.

Happy reading.

George

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Wow!!! So many answers to questions I didn't even know I had! I'm going to write to my neurologist right away to inform her of the undeniable link between ataxia and gluten. I tested negative for celiac disease, but have been reading "Wheat-free, Worry-free" to search for answers to some questions. I've just re-started a gluten-free diet (after a breif trial last year). Now that I see just how important it is to maintain the diet, I will be much more motivated to stick with it. A change in diet is so much nicer than additional drugs!

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Also, where is the Braintalk forum?  I would love to take a look -- I've already learned so much from this, it would be nice to see a site which is strictly neuro.  Also, Claire, what type of rehab professional are you?  I feel the same way -- I was the practitioner, now I'm the patient.  (I used to MEASURE people for wheelchairs -- now I'm in one)

<{POST_SNAPBACK}>

http://brain.hastypastry.net/forums

I was trained in a pilot program for OT/PT. I came to that as an undocumented Recreation Therapist - long story there. The Occupation and PhysicalTherapy training has a lot of overlap so this was a wonderful concept- one well received in the Rehab community. However there was a lot of politics in the national organizations that ultimatelysabotaged the whole idea. Most of us just had to chose a way to go. I stayed with OT and eventually wandered back into Recreation Therapy - mostly for senior citizens and severely handicapped younger people. I got my Masters after that and then worked in a private organization that did training workshops - Relaxation Techniques, Grief Counseling etc. We worked mostly in hospital with Blood Pressure Clinics and also did a lot of inservice training for nurses and other professionals - police etc. Funding dried up and I left health care and went into a high tech company as Administrator of a Training Dept. Claire

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Hey Claire -- I did my rehab in a facility which had a recreational therapist; I thought she was indispensable. We have the same PT/OT thing here -- it's a bunch of S**T. I have a good friend who is an OT. There is a lot of overlap, but each brings to the table their unique perspective. She and I see eye to eye on so much -- she works with kids, as did I. What KILLS me is that she managed to parlay a position for me to work with her co-treating -- what a team we would make - I just need to get well and I'm there -- there I go again with the denial. I stongly believe in the aspect of rehab which you chose. I took an enormous amount of psych classes which weren't required, including the psychology & dynamics of death and dying. Without "tooting my own horn", that is what I liked the most about my office; it was calming -- it was decorated, not sterile -- one room had a soft ocean theme, the women's health room had Cassat pictures of mothers & children -- all the fluorescent lights were covered with fabric to soften the room -- I found that in that environment, my patients were not only able to relax, but so many of them were able to grieve, as well -- often very openly -- and often I would grieve with them. It was very conducive to physical recovery. Man, I could have used your talents in my office! That would have been awesome. I think that is what is the most difficult about this disease -- I feel like I've been robbed or assaulted. I know that I made a difference -- and I don't know how to make a difference now. O.K., enough whining!

George: Thank you so much for the info with regard to the genetic testing and for the braintalk forum info. Inasmuchas I am concerned with finding out the absolute cause of this, I am so concerned for my two adult children. (23 & 19). If I test postitive for a genetic predisposition, I want them tested immediately. I don't want them going through this. Regardless, though, I know that I have antigliadin antibodies, and must remain gluten-free for life. At least I've "smartened up" to that extent!

Talk to you guys soon . . . . . :P Lynne

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Guest BellyTimber
I also have ataxia.  I've read of a study where large doses of B12 improved the conditions of some patients.  I've also been told that the disease is progressive, and the best you can do is to slow down that progression.  CoQ10 was found to do just that.  (Just at the moment, I'm not exactly sure which vitamin went with which study, but I do know for sure that they are both beneficial.)

<{POST_SNAPBACK}>

I heard gluten ataxia mainly halts where it is if a proper gluten-free diet is followed and sometimes improves slightly to moderately, unlike some other kinds of ataxia which often carry on getting gradually worse.

Everyone's experience will be different of course, best of possible health to you,

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http://brain.hastypastry.net/forums

I was trained in a pilot program for OT/PT. I came to that as an undocumented Recreation Therapist - long story there. The Occupation and PhysicalTherapy training has a lot of overlap so this was a wonderful concept- one well received in the Rehab community. However there was a lot of politics in the national organizations that ultimatelysabotaged the whole idea. Most of us just had to chose a way to go. I stayed with OT and eventually wandered back into Recreation Therapy - mostly for senior citizens and severely handicapped younger people.  I got my Masters after that and then worked in a private organization that did training workshops - Relaxation Techniques, Grief Counseling etc. We worked mostly in hospital with Blood Pressure Clinics and also did a lot of inservice training for nurses and other professionals - police etc.  Funding dried up and I left health care and went into a high tech company as Administrator of a Training Dept.  Claire

<{POST_SNAPBACK}>

Hey Claire -- I hope you received my response to your questions -- I feel really awful about my answer, because I didn't understand that you guys COMBINED PT/OT. I thought you meant that it was the same argument that we have here. I I have offended you, I am really sorry. I re-read my response, and it was my misreading the article. (One of the dangers of reading at night when I'm off Ritalin -- my brain jumps from A to E to M . . . ) I apologize if I have in any way insulted you -- I think you are so intelligent and have been such a help to me in so many ways.

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For those who have talked me on the subject of ataxia, I have posted a new topic dealing with the results of my genetic test - Kimball Labs.  Look for title Ironic.  Claire

<{POST_SNAPBACK}>

Hi Claire -- can't find the post "Ironic" -- does it take awhile for them to appear? I am really interested in your findings. I hope you got some answers. Correct that -- I hope you got some definitive answers and not any vague information that can happen. My opthmalogist says that pathologists' national flower is "hedge". :) Will keep looking . . . talk to you soon . . . .Lynne

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Hi Claire -- can't find the post "Ironic" -- does it take awhile for them to appear?  I am really interested in your findings.  I hope you got some answers.  Correct that -- I hope you got some definitive answers and not any vague information that can happen.  My opthmalogist says that pathologists' national flower is "hedge".  :)  Will keep looking . . . talk to you soon . . . .Lynne

<{POST_SNAPBACK}>

It is posted in the New Posts for today..

Thanks for your interest. "hedge' - that's funny. Claire

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For those reading this thread, I am reposting below what is already posted under a separate topic - Ironic.

I am sure all you suffering as well as recovering celiacs will think I am bit 'off' to be disappointed but I definitely am. Depressed in fact.

My genetic test came back from Kimball Labs. Negative. I do not have Celiac Disease.

I should be happy - right? I am not. It would have been by far the lesser of two evils.

I had hoped that at long last I would have something definite. This nonsense has been going on most of my adult life.

This leaves me with only a few options left. The recent NIH test was to determine whether the ataxic condition that I have is a genetic disorder. If it is it will be much more threatening than celiac because it will be progressively degenerative with neither treatment or cure.

If that test is also negative then I have one option left - a non-celiac gluten sensitivity. Kimball Labs did not test for that. I went there because insurance would cover the test and I figured I would know at least something for certain - and of course now I do.

If NIH genetic test is also negative then Enterolab will be my last stop, If that too is negative then I am back to square one - with a progressing ataxia of unknown cause.

I am Gluten-free Casein-free and will continue to be until I find some good reason not to be.

Thanks to all who have shown interest in my ongoing saga. Claire

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For those reading this thread, I am reposting below what is already posted under a separate topic - Ironic.

I am sure all you suffering as well as recovering celiacs will think I am bit 'off' to be disappointed but I definitely am. Depressed in fact.

My genetic test came back from Kimball Labs. Negative. I do not have Celiac Disease.

I should be happy - right? I am not. It would have been by far the lesser of two evils.

I had hoped that at long last I would have something definite. This nonsense has been going on most of my adult life.

This leaves me with only a few options left. The recent NIH test was to determine whether the ataxic condition that I have is a genetic disorder. If it is it will be much more threatening than celiac because it will be progressively degenerative with neither treatment or cure.

If that test is also negative then I have one option left - a non-celiac gluten sensitivity. Kimball Labs did not test for that. I went there because insurance would cover the test and I figured I would know at least something for certain - and of course now I do.

If NIH genetic test is also negative then Enterolab will be my last stop, If that too is negative then I am back to square one - with a progressing ataxia of unknown cause.

I am Gluten-free Casein-free and will continue to be until I find some good reason not to be.

Thanks to all who have shown interest in my ongoing saga. Claire

<{POST_SNAPBACK}>

dear claire

i just want to say to you dont give up. my lab results i had last week for celiac also came back negative but i have a ct scan saying theys something in my intestine. what i dont know if its not celiac. also i feel better by not having gluten in my life although i had an accident in a resturant last friday which took me to my bed for three day and i now have gastitus to go with it, all my tingling came back and tremor from from one error and i am hoping to get back to feeling better. i too have a nurelogical problem and no one knows what to make of it, and it gets very progressive. no doctor as a clue like you i was hoping my blood work would show up the diease but it didnt, so am fustrated too like you i was hoping to have found my answer so i can put it to bed and try to get better instead of worrying what it could be. my note to you is dont give up your not on your own, if you need to talk i will be here for you liz

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dear claire

like you i was hoping to have found my answer so i can put it to bed and try to get better instead of worrying what it could be. my note to you is dont give up your not on your own, if you need to talk i will be here for you liz

<{POST_SNAPBACK}>

Thanks so much for the encouragement. No, I certainly will not give up. I am frustrated and impatient - still pursuing every possible angle.

Tomorrow I have my yearly appointment with my retinal specialist. I will be asking him to look for any retinal damage. This might be present if I have the disease the neurologists are looking for. No harm in asking.

Then I will wait the 6-8 weeks for the NIH test results. If those are positive then there is at least something definite - unpleasant as it is.

If results are negative, I will see what NIH suggests to do next but I will certainly then have the genetic test for non-celiac gluten sensitivity. I would like to do that now but I am being frugal.

I may get too impatient and do that test before mid January.

So I have a plan and just have to wait it out. Thanks again. Claire

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Hi Lynne,

I've also had many years of wobbling stumbling and stupid Dr's, telling me it was in my head!

and I even started to believe them,ENT's Gastro E,Neurol, sphycs, and the list and bills pilled up,

so i decided to fix at least one thing in my life, it was my IBS,

I did this by an elimination diet,

8 weeks off dairy (nothing)

8 weeks off wheat i couldnt believe the change!

which I wont bore you with,

now 12 months off gluten, on my own, woke up one morning with normal gait.

after 13 years of falling wobbling crying and wanting to die,

still cant get a diagnoses for celiacs, as Australian DRs or specialists know little to nothing of this gluten Ataxia, or very little about celiacs.

I do not have any other symptoms than, IBS,ADDall my life,Insomnia, restless legs,ichy skin all over ,pin like pricks in my eyes face, feet and legs,cronic consterpation,

I'm know this isnt any help to you , but I just wanted to post to you so that you may feel some hope, that I have become almost normal by staying gluten free. now I just have to convince a Dr to give me vitamin injections without having to get a lecture first.

kind regards, jenny.

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I had a similar experience to Jenny. I was diagnosed with Chronic Fatigue Syndrome 16 years ago and told merely that nuerological problems were normal. I had myoclonus, trouble with walking, visual disturbances, headaches and severe pain literally from head to toe.

I must have seen 5 different nuerologists in the first year who all told me they didn't know what was wrong. Of course, I had emgs, mri's, etc. I even went to the Mayo Clinic.

I too went on the elimination diet as well as the Gluten free diet. I actually was on the elimination diet prior to the gluten free diet because I simple could not digest food anymore.

Now, I am walking normally all of the time. Have been since September 4th, 2006. I used to need a motorized cart if I walked any distance. Grocery shopping was a nightmare without a motorized cart.

I still have Raynauds, some stiffness in my hands and some trouble with comprehension.

I also believe that since we were nutrient starved for so many years that we need to be on a highly nutritious diet in order to heal. I feel much better when I eat this way.

I see this was posted back in 2005. I hope you are feeling better. :) Marcia

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There IS a form of gluten induced brain damage. A doctor named Hadjivassiliou has done a lot of research in this area. There will often be no villious atrophy and no postive blood test results. You'll find a lot of the papers he has written in The Gluten File (link in my signature) under neurological manifestations. Maybe someone has already clued you into this, I haven't read the entire thread.

Someone else just got a diagnosis for their child of gluten sensitivity related neurological disorder with no GI damage.

There's a forum or two I could steer you to with a lot of interest (and knowledge) in gluten brain issues. Send me a PM if you'd like the URLs. Great friendly people. :)

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