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  #11  
Old 11-19-2009, 09:55 PM
Seeker Seeker is offline
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Thanks Cara,

The tongue atrophy is slight, though I fear it has been slowly progressing. True atrophy of the tongue results from denervation of the tongue muscles, leading to atrophy, weakness and, in ALS, total paralysis.

I did see that article on Celiac and possible ALS and have read of of a few other instances where ALS was thought to be related to Celiac, but nothing on gluten sensitivity. I guess I still don't understand the difference between Gluten Sensitivity and Celiac. I thought Fassano explained to me that they operate by entirely different mechanisms, but maybe I didn't understand him. Are there any good books specifically on gluten sensitivity?

Thanks

Seeker
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  #12  
Old 11-20-2009, 12:24 AM
Zonulin Zonulin is offline
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Quote:
Are there any good books specifically on gluten sensitivity?- Seeker
A good one is The Gluten Connection: How Gluten Sensitivity May Be Sabotaging Your Health - and What You Can Do to Take Control Now by Shari Lieberman. Even more recent is The Gluten Effect: How "Innocent" Wheat is Ruining Your Health by Drs. Vikki and Richard Petersen. And the classic, Dangerous Grains by James Braly, MD and Ron Hoggan, MA.


Karen
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  #13  
Old 11-20-2009, 10:22 PM
jcc jcc is offline
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. I thought Fassano explained to me that they operate by entirely different mechanisms, but maybe I didn't understand him.
Yes... I think he says its the difference between innate and adaptive immune system responses.... and doesn't consider "gluten sensitivity" an "autoimmune" type of process. If I remember correctly, "autoimmune" disease equates to an adaptive response. I am no master of biology, immunology, or chemistry.


Not that my opinion counts for too much... but I think he isn't 100% right on that. In my mind, gluten sensitivity that is seen in gluten ataxia, gluten neuropathy, and dermatitis herpetiformis, or in conjuction with other autoimmune disease that improves on a gfd, without celiac disease... has to be the same type of immune system response as celiac disease (adaptive), but targeted at other organs.

I think there is also gluten intolerance (and I term that gluten intolerance rather than gluten sensitivity) that involves only the innate immune system... but I think he's disregarding a portion of gluten sensitivity that does seem to have to do with autoimmunity, yet not celiac diseae.

I think more autoantibodies will be discovered in the future that will be proven to be linked to gluten.

My family seems to show gluten sensitivity and autoimmunity and nutritional deiciency, and I happen to believe it must all be related. We have a huge prevalance of autoimmune thyroid disease in my extended family. . I have presumed perncious anemia and my father presumed LADA diabetes (autoimmune, late onset). Gluten appears relative in many other autoimmune disease processes, too, in the absence of celiac disease. I just read you also have psoriasis... and that is one that seems particularly tied to gluten sensitivity, whether in tandem with celiac disease or not.

Quote:
Psoriasis

Coeliac disease-associated antibodies correlate with psoriasis activity. PMID: 15491433 Oct 2004

High prevalence of celiac disease in psoriasis. PMID: 14638373 Nov 2003


In the entire group of patients, as well as in those on a gluten-free diet as the only treatment, Ki67 + cells in involved dermis were highly significantly decreased after the diet.Gluten-free diet in psoriasis patients with antibodies to gliadin results in decreased expression of tissue transglutaminase and fewer Ki67+ cells in the dermis. PMID: 14690336 2003

The present case supports the association between CD and psoriasis and the concept that psoriasis in CD patients can be improved by GFD
Rapid Regression of Psoriasis in a Coeliac Patient after Gluten-Free Diet. A Case Report and Review of the Literature. PMID: 12949434 2003

Patients with PsoA have an increased prevalence of raised serum IgA AGA and of coeliac disease. Patients with raised IgA AGA seem to have more pronounced inflammation than those with a low IgA AGA concentration.
Psoriasis patients with antibodies to gliadin can be improved by a gluten-free diet. Full text PMID: 10651693 Jan 2002

Thirty of the 33 patients with AGA completed the GFD period, after which they showed a highly significant decrease in mean PASI. This included a significant decrease in the 16 AGA-positive patients with normal routine histology in duodenal biopsy specimens
Psoriasis patients with antibodies to gliadin can be improved by a gluten-free diet. PMID: 10651693 Jan 2000

It was recently observed that in six patients with psoriasis and one with palmoplantar pustulosis, with newly discovered gluten intolerance, a gluten-free diet had a remarkable effect on the skin lesions.
Patients with psoriasis often have increased serum levels of IgA antibodies to gliadin. PMID: 8286249 Dec 1993
http://jccglutenfree.googlepages.com...oimmunedisease

I wonder how he categorizes gluten ataxia when unaccompanied by evidence of intestinal involvement. I mean...the guy obviously knows a thousand times more than I do, but what he says just doesn't wash with me... when I see all the autoimmunity involved in so many others who have gluten sensitivity, but not celiac disease. I think that suggest the same type of immune system response... just targeting in different directions.

I've seen someone put their Sjogren's syndrome in complete remission by dietary changes (Debinaz).
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  #14  
Old 11-21-2009, 12:15 AM
can can is offline
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Smile Hi Seeker

Yes, you and OZZ used to post on the Multifocal Motor Neuropathy forum. OZZ ( I am pretty sure ) has one CD gene and one gluten sensitive gene and she stated that IT TOOK HER 3 YEARS JUST TO START TO GET BETTER. So, my 11 months is really not much time. I know for sure I am gluten sensitive because of all my childhood symptoms etc.---everything fits like a glove as far as symptoms go. Enterolab confirmed me and both my children. AND I COULD NOT CARE LESS IF ANY DOCTOR WERE TO TELL ME OTHERWISE! And yes, I had and have tons of weakness. It's been 6 years since I was able to walk upstairs normally. I still can't. One and one half years ago I was about 95% sure that I would give up my drivers licence because I felt that I was too weak to drive, but just this past May, I drove 700 miles ( wife did maybe a total of 75 miles ) round trip in 2 days to pick up my Mom. And my symptoms wax and wane. NOT HAVING A CELIAC DISEASE GENE MEANS ABSOLUTELY NOTHING! Check out www.medscape.com/viewarticle/563701 ---A CASE OF CELIAC DISEASE MIMICKING ALS ----IN ENGLAND. You might have to register, but it's very easy to do if you want to read the article. GOOD LUCK SEEKER
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  #15  
Old 11-21-2009, 12:55 AM
can can is offline
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Seeker, please remember that, for me, gluten sensitivity can be quite more serious than CD becaues CD gets all the attention. Gluten sensitivity can sneek up on you like a black cat in a fog.
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  #16  
Old 11-21-2009, 02:41 AM
GFPaperdoll GFPaperdoll is offline
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Default Gluten Intolerance is really bad...

Cara's quote "Not that my opinion counts for too much... but I think he isn't 100% right on that. In my mind, gluten sensitivity that is seen in gluten ataxia, gluten neuropathy, and dermatitis herpetiformis, or in conjuction with other autoimmune disease that improves on a gfd, without celiac disease... has to be the same type of immune system response as celiac disease (adaptive), but targeted at other organs."

Cara I totally agree. Those of us (me) that have two DQ1 genes know that gluten sensitivity/intolerance is very insidious. We are not getting the villi atrophy early on, that is supposed to be the diagnosis of a gluten problem. We also do not have the DQ2 or DQ8 gene. But if we eat gluten we get sicker and die faster than the people that have "classic celiac".

There are so many "diagnoses" for our problems, like the 250 some odd symptoms & illnesses in the back of the book "Dangerous Grains", that the real problem - our inability to tolerate gluten - is totally missed.

So Seeker, IMO you should stay as far away from gluten as you can. Go gluten free & dairy free. Modify your diet as you go while striving for the healthiest diet for YOU. I was wheat lite for 10 years before I knew anything about gluten. I have been GF for 5 1/2 years. I eat much better now than I did 4 years ago. I am also 63 & very healthy.

Seeker I think your skin condition is a huge red flag warning you to get off gluten. Have you read my thread here re Hidradenitis Suppurativa? Those people that are trying the diet are healing in from 5 to 6 weeks!! They are getting no help from the medical community. Yet without tests or directions from a doctor these people that suffer horribly are getting well!!! Even Dr. H... thought it might be a coincidence but guess what, it is not!!

Seeker, it is your health, your life, your body, don't wait around for the docs to publish something... Maya Angelou guote "when you know better you do better". & to borrow someone's sig line "I am not a doctor but I can read".

You might have to keep adjusting your diet until you find the right combination of foods that heal you & keep you healthy. It is a journey...
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  #17  
Old 11-25-2009, 09:48 PM
Seeker Seeker is offline
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Quote:
Originally Posted by jcc View Post
Yes... I think he says its the difference between innate and adaptive immune system responses.... and doesn't consider "gluten sensitivity" an "autoimmune" type of process. If I remember correctly, "autoimmune" disease equates to an adaptive response. I am no master of biology, immunology, or chemistry.


Not that my opinion counts for too much... but I think he isn't 100% right on that. In my mind, gluten sensitivity that is seen in gluten ataxia, gluten neuropathy, and dermatitis herpetiformis, or in conjuction with other autoimmune disease that improves on a gfd, without celiac disease... has to be the same type of immune system response as celiac disease (adaptive), but targeted at other organs.

I think there is also gluten intolerance (and I term that gluten intolerance rather than gluten sensitivity) that involves only the innate immune system... but I think he's disregarding a portion of gluten sensitivity that does seem to have to do with autoimmunity, yet not celiac diseae.

I think more autoantibodies will be discovered in the future that will be proven to be linked to gluten.

My family seems to show gluten sensitivity and autoimmunity and nutritional deiciency, and I happen to believe it must all be related. We have a huge prevalance of autoimmune thyroid disease in my extended family. . I have presumed perncious anemia and my father presumed LADA diabetes (autoimmune, late onset). Gluten appears relative in many other autoimmune disease processes, too, in the absence of celiac disease. I just read you also have psoriasis... and that is one that seems particularly tied to gluten sensitivity, whether in tandem with celiac disease or not.



http://jccglutenfree.googlepages.com...oimmunedisease

I wonder how he categorizes gluten ataxia when unaccompanied by evidence of intestinal involvement. I mean...the guy obviously knows a thousand times more than I do, but what he says just doesn't wash with me... when I see all the autoimmunity involved in so many others who have gluten sensitivity, but not celiac disease. I think that suggest the same type of immune system response... just targeting in different directions.

I've seen someone put their Sjogren's syndrome in complete remission by dietary changes (Debinaz).
Thanks Cara

Yes, as I recall, Fasano said that gluten sensitivity and Celiac operate by very different mechanisms, which is contrary to just about everything else I've read. I wrote him some of my questions and he responded that his nurse will respond.

Seeker
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  #18  
Old 11-25-2009, 09:54 PM
Seeker Seeker is offline
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Originally Posted by GFPaperdoll View Post
Cara's quote "Not that my opinion counts for too much... but I think he isn't 100% right on that. In my mind, gluten sensitivity that is seen in gluten ataxia, gluten neuropathy, and dermatitis herpetiformis, or in conjuction with other autoimmune disease that improves on a gfd, without celiac disease... has to be the same type of immune system response as celiac disease (adaptive), but targeted at other organs."

Cara I totally agree. Those of us (me) that have two DQ1 genes know that gluten sensitivity/intolerance is very insidious. We are not getting the villi atrophy early on, that is supposed to be the diagnosis of a gluten problem. We also do not have the DQ2 or DQ8 gene. But if we eat gluten we get sicker and die faster than the people that have "classic celiac".

There are so many "diagnoses" for our problems, like the 250 some odd symptoms & illnesses in the back of the book "Dangerous Grains", that the real problem - our inability to tolerate gluten - is totally missed.

So Seeker, IMO you should stay as far away from gluten as you can. Go gluten free & dairy free. Modify your diet as you go while striving for the healthiest diet for YOU. I was wheat lite for 10 years before I knew anything about gluten. I have been GF for 5 1/2 years. I eat much better now than I did 4 years ago. I am also 63 & very healthy.

Seeker I think your skin condition is a huge red flag warning you to get off gluten. Have you read my thread here re Hidradenitis Suppurativa? Those people that are trying the diet are healing in from 5 to 6 weeks!! They are getting no help from the medical community. Yet without tests or directions from a doctor these people that suffer horribly are getting well!!! Even Dr. H... thought it might be a coincidence but guess what, it is not!!

Seeker, it is your health, your life, your body, don't wait around for the docs to publish something... Maya Angelou guote "when you know better you do better". & to borrow someone's sig line "I am not a doctor but I can read".

You might have to keep adjusting your diet until you find the right combination of foods that heal you & keep you healthy. It is a journey...
Thank you,

Why do you suggest also going off dairy? Seems that going on gluten and dairy at same time will be pretty hard. The so-called psorias appeared once and hasn't come back in past 2 years. Now, I'm very worried that I have some form of ALS, marked by tongue atrophy that is slowly progressing, along with progressive swallowing problems. If going off gluten would help with this, would certainly be worth it.

Seeker
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  #19  
Old 11-26-2009, 05:25 AM
Razzle0 Razzle0 is offline
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Seeker,

Please, please get tested for Vitamin B12 deficiency. And if your test result comes back even in the normal range but on the lower side, try taking a B12 supplement. Vitamin B12 deficiency can do some really strange things, and messing with tongue, taste, swallowing, etc. are just some of the things that can happen without sufficient B12.

Also, in my case, it is believed that my Vitamin B12, Gluten Sensitivity, and Chronic Lyme Disease are all inter-related. Not sure which came first, but I know gluten is a big no-no for me (and I used to LIVE on a mostly-wheat diet), I know I need constant supplementation of Vitamin B12 in spite of now normal levels (B12 deficiency was first discovered 10 yrs. ago, my level then was well below normal due to vegetarian diet, malabsorption, and Lyme), I know I have a genetic predisposition to Celiac and/or Gluten Sensitivity therefore plan never to knowingly eat wheat/gluten again in any amount, and I know the Lyme has seriously deranged my immune system, gut, and nervous system.

As to the initial question, I do not believe problems with gluten are a matter of degree. Symptoms may seem less severe with smaller quantities, but it only takes 1 molecule of gluten to trigger the immune system's response and possible consequent tissue damage.

Take care,

-Razzle
Gluten Sensitivity dx via EnteroLab 7/2005
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  #20  
Old 11-27-2009, 02:10 PM
gfspokane gfspokane is offline
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Default Basic thoughts on diagnosis

Doctors declare celiac disease when there is "proof" of the disease through a biopsy of the small intestine and damage is seen. (This is logical. Seeing is believing.)

There have been cases where the blood tests are negative, a normal biopsy produces no results, but a camera endoscopy has shown the damage in the lower part of the small intestine.

My question is this. If the person has symptoms that look/act like celiac disease, why is the next step not a genetic test to see if the possibility of this disease could not be on the horizon. I realize that many have the gene but never develop the disease. I also realize that much reseach has been done and the future may have additional indicators other the the DQ2 and DQ8 markers.

The people I talk to who have the disease indicate that other symptoms were present before the flattened villi were shown on a biopsy. Up until those villi appeared damaged, were they classified as gluten intolerant or were the symptoms called something else other than celiac disease while the root cause was cd.

No one knows a body as well as the person living in it. Do what you need to do to maintain the optimal feeling of health.
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