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radman

How Strict Do We Need To Be?

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Armetta,

Who told you they were just gas? i don't think that is possible in the brain, but I could be wrong. Sorry I am no help.

Monica

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SMALL AMOUNT OF GLUTEN!

Oops. Here I am again to groan over any indication that a small amount of gluten may slow down progress but only do "a small amount of damage". The example a neurologist gave me will be offered here yet again. A grain of gluten put into a petri dish with a drop of blood from a celiac patient will initiate an almost immediate reaction that can be sustained in the sample for days - even weeks. You do not what body cells being affected when you ingest gluten - eyes, ears, muscle, brain - take you choice. The neurological damage done by gluten is proven and very scary. I went on a gluten restricted diet 15 years ago. I did not know that gluten was an issue. The issue was only identified as grains. So I stopped eating bread and flour saturated foods but that was the limit of restrictions. I eliminated enough to relieve the symptoms - not enough to eliminate the neuro damage that is now affecting my life. Gluten is neurotoxic. Accidents may happen but otherwise, in the interest of your future health, go gluten-free all the way. Claire

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The tec who did the MRI. I looked at the screen and said what are those bright spots and then he said that. I was getting the MRI for a Neurologist I was starting to see. The person who read them said everything was fine. This was in Dec. (I think). I don't even no if the neuro even looked at them. I stopped going to him after three visits and someone else has diagnosed my neuropathy.

They don't come any more gullible then me - anyone want to sell me the Brooklyn Bridge :blink:


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Some support for a "Low Gluten Diet" vs. Gluten Free for some celiacs

Gut. 1988 Nov;29(11):1564-8. Related Articles, Links

Comment in:

Gut. 1989 Jun;30(6):888.

Low gluten diet in the treatment of adult coeliac disease: effect on jejunal morphology and serum anti-gluten antibodies.

Montgomery AM, Goka AK, Kumar PJ, Farthing MJ, Clark ML.

Department of Gastroenterology, St Bartholomew's Hospital, London.

Treatment of patients with coeliac disease with a low gluten containing diet (LGD) remains controversial. We have studied jejunal morphology and antigluten (AG) antibody titres by ELISA in patients on a LGD of 2.5-5 g/day for three to 14 months (median six months) and compared results with patients on a strict gluten free diet (GFD) for six to 27 months (median 13 months). We found no significant difference in villous height or crypt depth (eight LGD v 10 GFD patients) or serum AG-IgA, -IgG, and IgM titres (13 LGD v 12 GFD patients). there was however, a significant increase (p less than 0.05) in intra-epithelial lymphocytes in those patients on a LGD. We conclude that adult coeliac patients can tolerate a LGD without gross morphological change and without initiating significant AG antibody responses.

PMID: 3209114 [PubMed - indexed for MEDLINE]

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Some support for a "Low Gluten Diet" vs. Gluten Free for some celiacs

Gut. 1988 Nov;29(11):1564-8. Related Articles, Links

Comment in:

Gut. 1989 Jun;30(6):888.

Low gluten diet in the treatment of adult coeliac disease: effect on jejunal morphology and serum anti-gluten antibodies.

Montgomery AM, Goka AK, Kumar PJ, Farthing MJ, Clark ML.

Department of Gastroenterology, St Bartholomew's Hospital, London.

Treatment of patients with coeliac disease with a low gluten containing diet (LGD) remains controversial. We have studied jejunal morphology and antigluten (AG) antibody titres by ELISA in patients on a LGD of 2.5-5 g/day for three to 14 months (median six months) and compared results with patients on a strict gluten free diet (GFD) for six to 27 months (median 13 months). We found no significant difference in villous height or crypt depth (eight LGD v 10 GFD patients) or serum AG-IgA, -IgG, and IgM titres (13 LGD v 12 GFD patients). there was however, a significant increase (p less than 0.05) in intra-epithelial lymphocytes in those patients on a LGD. We conclude that adult coeliac patients can tolerate a LGD without gross morphological change and without initiating significant AG antibody responses.

PMID: 3209114 [PubMed - indexed for MEDLINE]

Radman,

Are the bolded parts above dates? If so, those are pretty outdated studies......

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Armetta,

Who told you they were just gas? i don't think that is possible in the brain, but I could be wrong. Sorry I am no help.

Monica

Is that what's known as a "brain fart"?????

Sorry, don't mean to make light of anyone with abnormalities on a brain MRI, but I just couldn't help myself............. :ph34r:


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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Beats me! But I thought that was a odd answer. He was dead serious when he said it. I like that brain farts. Maybe that is what happens to all of us with the brain fog - we just switched gassy locations :lol:


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Brain Farts!!! That is hilarious. It would totally make sense too in an odd, convoluted way.... <_<

:lol:

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I was on a LGD for 15 years and while obvious intense reactions were eliminated - long term damage was not. I developed ataxia - gait and balance disturbance - caused by neurological damage to the brain..

I wouldn't chance it Claire

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Hi all,

Hi Ravenwood. UBO's are not diagnostic of anything anywhere, believe me I see them all the time in my own patients. These are bright areas seen on T2 weighted MRI sequences and EXTREMELY common. They can be seen in demyelinating diseases (like MS), infections, CNS lymphomas, CNS AIDS, etc. etc. etc. This abnormality is very sensitive in that it detects a problem, but is very nonspecific in that it doesn't tell you what the problem is. It has to be correlated with the patients symptoms, history, and potential diagnoses. In other words, UBOs in a known celiac with no other explanation makes CNS celiac the most likely explanation, but seeing UBOs without knowing the patient has celiac (or may have celiac), would not be diagnostic, it could be any number of things. The radiologist would have to know that celiac CAN produce lesions like this first of all, and then he/she would have to know that celiac existed in the patient or was being considered.

By the way, did your balance problems (ataxia) improve with gluten free diet?

Yes the ataxia is gone. It is however the first sign that I have been glutened, the same thing occurs with my celiac son, my gluten intolerant daughter does not have the ataxia. At the time that I had my MRI I was suffering from ataxia so bad I could barely walk at times, severe migraine headaches, my hands had lost so much feeling I could hardly hang on to anything, my joint swelling and pain were severe and I had nightly bouts of D for over 3 hours at a time. The response of the neuro guy after MRI and all their other tests, 'It's all in your head here have a prozac, or how about some valium. You need to learn to live with it.' Well no I don't, gluten free all ALL neuro symptoms went away, not instantly took about 6 months. Why could no doctor I saw even mention celiac? I was blood tested and always came back negative but no doctor ever said what they were looking for, if they had I would have tried the diet years sooner and my celiac from infancy son would have been 'cured' also and wouldn't be less than 5 ft tall at 22.

Also gluten is an intolerance and thus a delayed reaction, many would not notice anything the same day, watch from them 1 to 4 days later.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Good morning Raven,

I'm so glad you're ataxia went away with gluten free diet. That is helpful to know, since It wasn't clear in the reports I read whether this was reversible.

I suspect what is happening is cross reactivity of the antibodies formed in response to gliaden. These antibodies are like "keys" that only fit specific "locks", the lock in our case is the gliaden component of gluten. The antibodies circulate in the bloodstream and travel throughout the body. In some people, there are similar "locks" in other parts of the body, in your case in the cerebellum of the brain. This part of the brain controls balance. The antibodies attach to the cerebellar cells (apparently the Purkinje cells) and cause damage, thus the ataxia.

If one does not have this specific structure (epitope) on their cerbellar cells, or if the specific antibody that person makes does not cross react, then no brain injury can occur. So it is likely that your son and those of us without the neurologic manifestations don't have this strucure and won't ever develop the brain problems.

This is important, because we all need to understand that this is under genetic control. What we do, or how we eat may have no impact whatsoever on the development of these types of problems. You are either born with the "locks" that cross react (in the brain, thyroid, or elsewhere) or you aren't.

Now, if you have those cross reacting "locks", then you need to get rid of any circulating antibody at all costs, by following a strict gluten free diet. Then it appears the injury will heal, and if no further exposure to gluten, won't reoccur. If you don't have the cross reacting "locks", all the gluten and anti-gliadin antibodies in the world will not harm these other organs.

Why did no doctor think about this for you? I can't say for sure, but as I've said before it is probably simply ignorance of the fact that celiac can do this. I had no idea until my own self diagnosis and research. I was taught all about the GI sypmtoms, but not about the other problems that can occur, but more particularly not about how common celiac is. Realize, that we are competing with about a million other illnesses and diseases for curriculum time. It is not realistic to expect in depth study of every rare disease, because study of that disease crowds out something else (and there are no doubt message boards like this where folks with that "other" problem are upset that more isn't known about them!)

The problem is celiac is NOT rare, but extremely common as we all know. Surprises the heck out of me that this could go unrecognized for so long. But all we can do is work to spread the word as to how common this is, and once it is fully appreciated we can expect much better medical care for ourselves and our loved ones, and hopefully prevent others from having to experience the pain that so many here have had to endure. The availability of simple blood tests to screen for celiac will undoubtedly make the commonality much better appreciated, so I for one am very optimistic.

Claire,

You are right. Since we don't know ahead of time if we have these cross reacting problems in the brain or elsewhere, a prudent peson would not chance it as you say.

I am not advocating anyone do this, just researching, speculating, and thinking. Again whatever we do we must balance the risk and benefit, and this balance may differ for each person. However, if we don't formulate the questions, we can never get answers.

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"Good morning Raven,

I'm so glad you're ataxia went away with gluten free diet. That is helpful to know, since It wasn't clear in the reports I read whether this was reversible."

Good morning Radman and Happy National Doctor Day! I am really glad it went away also, I consider myself very lucky. I know what you mean about the receptors, I used to teach about drugs and alcohol and one of the things I stressed was the receptors that would lock with cocaine for many people.

"Why did no doctor think about this for you? "

They did but I don't show up on the blood tests they did, they called it non-tropical sprue and the rheumy one remark after the test was 'You should be thankful, if it was positive you wouldn't be able to eat anything' I would have eaten liver and onions only for the rest of my life if that was what it took <_< , he however never mentioned gluten, it took at least 4 more years for it to be found.

"I can't say for sure, but as I've said before it is probably simply ignorance of the fact that celiac can do this. I had no idea until my own self diagnosis and research. I was taught all about the GI sypmtoms, but not about the other problems that can occur, but more particularly not about how common celiac is. Realize, that we are competing with about a million other illnesses and diseases for curriculum time. It is not realistic to expect in depth study of every rare disease, because study of that disease crowds out something else (and there are no doubt message boards like this where folks with that "other" problem are upset that more isn't known about them!)

The problem is celiac is NOT rare, but extremely common as we all know. Surprises the heck out of me that this could go unrecognized for so long. But all we can do is work to spread the word as to how common this is, and once it is fully appreciated we can expect much better medical care for ourselves and our loved ones, and hopefully prevent others from having to experience the pain that so many here have had to endure. The availability of simple blood tests to screen for celiac will undoubtedly make the commonality much better appreciated, so I for one am very optimistic."

Although I know I don't often sound it I also am optimistic about this. Even though serological testing misses many if we could just get that alone to be a regular part of the routine checkups it would help. If people looked for it first when hit with things like depression and IBS that would help also. We have to have hope and be vocal. Word is getting out though and each one of us does our part. Have a great day.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Radman,

For the benifit of those of use that have not had the time to followthis 11 page thread in detail, can you summarize? :D I dont have time to read every on this message board (I doubt most do) and not had time to get back to this... so Im a bit lost where the information stands at this point. :)


- Vincent -

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Radman,thanks for the explanation of Gluten Ataxia in laymans terms.

It's good to have a doc amongst us! :blink:


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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Guest BERNESES

I just wanted to thank all of you for this thread. I have learned so much. radman- glad you decided to stick around. I think asking questions, speculating and thinking is what drives us all. I like to think of this board as a Celiac think tank (except when we all have brain fog- or brain farts :P )

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At the risk of getting too far off this topic (which was originally, let me think...going gluten-free or gluten-lite), I want to ask a question that is generally related to many of the posts. I can understand how the malabsorbtion conditions can be caused by celiac disease: lower intestine damage, consequent inability to absorb important vitamins and minerals. I wonder, however, if anyone knows why celiac can cause arthritis and infertility and is linked to various neurological illnesses such as Parkinson's, depression and autism. What is the actual physical thing that is going on here? How is gluten damage affecting brain chemicals, or reproductive ones? My dad's got Parkinson's, and I am convinced he has celiac. He was tested (blood work) and it was negative. Now, we know that a negative can mean nothing. So I keep hearing that brain conditions can be caused by celiac---anyone know how? Radman, any insights?

Radman,

Okay, I somehow missed your explanation a few posts back about antibodies and "locks" and "keys". This has explained a great deal.


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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At the risk of getting too far off this topic (which was originally, let me think...going gluten-free or gluten-lite), I want to ask a question that is generally related to many of the posts. I can understand how the malabsorbtion conditions can be caused by celiac disease: lower intestine damage, consequent inability to absorb important vitamins and minerals. I wonder, however, if anyone knows why celiac can cause arthritis and infertility and is linked to various neurological illnesses such as Parkinson's, depression and autism. What is the actual physical thing that is going on here? How is gluten damage affecting brain chemicals, or reproductive ones? My dad's got Parkinson's, and I am convinced he has celiac. He was tested (blood work) and it was negative. Now, we know that a negative can mean nothing. So I keep hearing that brain conditions can be caused by celiac---anyone know how? Radman, any insights?

Radman,

Okay, I somehow missed your explanation a few posts back about antibodies and "locks" and "keys". This has explained a great deal.

I think I can answer your question a bit, however I might butcher the answer with things I don't 100% understand.

One thing about gluten sensitivity is that it is linked to intestinal permeability through a hormone called Zonulin. Dr. Fasano is doing a lot of research on this area and some drug trials.

In my particular case, I have a type of arthritis that is thought to be a one caused by my body mistaking a bacteria with a protein one of my genes makes (HLA B27). These antibodies would normally be limited to the intestines I believe, but the increased permeability somehow lets them into the blood stream where the body messes up and attacks them. In my case, this leads to Ankylosing Spondylitus. It is thought that RA and other autoimmune diseases might also be caused in the same way. Stuff is getting outside the intestines that shouldn't be there.

Parkinson's might be a similar type of thing.

It is interesting but if you search on rheumatoid arthritis and proteus or Ankylosing Spondylitus and klebsiella there are some very interesting areas of reseach.

My guess is those of us with gluten sensitivity are leaking antibodies to things that look similar to proteins our body makes. How they get to their destination and wreak havoc is something I'm not sure anyone knows yet.

One of the main treatments my rhuemy is doing for me is trying to get my intestines in good working order again by using a drug that should help. Hopefully that'll have a calming effect on the autoimmune disorder.

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I am guessing that the connection to autism is at least partially linked to vaccines. I don't know if gut permeability is caused by the vaccine, or if the vaccine acts as a catalyst, or if the vaccine might even cause gut permeability. But any way you look at it, if you have gut permeability, and 26 vaccines by the age of 2, many of which (until very recently) contained thimerosal--a preservative that is 49.6% mercury, which is a known neurotoxin that can cross the blood/brain barrier--that sounds like a pretty sure-fire recipe for both neuro disorders and immune system problems. As far as I can find out, there are no long-term studies on the effects of so many vaccines on the human immune system.

Radman, in case you missed my vaccine rants a couple of weeks ago, I am not anti-vaccine--I just don't want to use all of the recommended ones, and I want to spread out the recommended schedule. 2 of my kids were given 2 vaccines when they were 4 hours old--hospital policy, and I was led to believe that I had no choice.

Oh, and BTW, I am SO glad you're sticking around!!!! :)

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Here's a better explanation of the gluten/zonulin connection: http://www.umm.edu/news/releases/zonulin.html

“Zonulin works like the traffic conductor or the gatekeeper of our body’s tissues,” says lead author Alessio Fasano, M.D., professor of pediatrics and physiology at the University of Maryland School of Medicine, and director of Pediatric Gastroenterology and Nutrition at the University of Maryland Hospital for Children. “Our largest gateway is the intestine with its billions of cells. Zonulin opens the spaces between cells allowing some substances to pass through while keeping harmful bacteria and toxins out,” explains Dr. Fasano.

Earlier research conducted by Dr. Fasano discovered that zonulin is also involved in the regulation of the impenetrable barrier between the blood stream and the brain, known as the blood-brain barrier.

Celiac disease offered Dr. Fasano and his team a unique model for understanding the dynamic interaction between zonulin and the immune system. Celiac disease is a genetic disorder that affects one out of every 300 people in Europe, but its prevalence in the United States is not fully known. People who suffer from the disorder are unable to eat foods that contain the protein gluten, which is found in wheat and other grains. The gluten sets off a reaction that can cause diarrhea, abdominal pain, malabsorption of nutrients, and other gastrointestinal problems. Celiac disease can be easily treated by avoiding foods with gluten.

With celiac disease, the body reacts to gluten by creating antibodies that attack the intestine and cause severe damage over time. Unlike other autoimmune disorders, scientists also know that celiac disease is triggered by a specific antigen, which is the protein gluten. Celiac disease is also known to cause increased permeability of the intestine. In addition, many people who suffer from celiac disease also suffer from other autoimmune disorders.

The research team examined the intestinal tissue of seven people with celiac disease, and six patients without the disease. Patients with active celiac disease showed higher levels of zonulin and anti-zonulin antibodies compared to non-celiac patients and patients in remission, who were eating a gluten-free diet.

“With celiac disease, we could never understand how a big protein like gluten was getting through to the immune system. Now we have the answer,” explains Dr. Fasano. “People with celiac have an increased level of zonulin, which opens the junctions between the cells. In essence, the gateways are stuck open, allowing gluten and other allergens to pass. Once these allergens get into the immune system, they are attacked by the antibodies,” adds Dr. Fasano.

“I believe that zonulin plays a critical role in the modulation of our immune system. For some reason, the zonulin levels go out of whack, and that leads to autoimmune disease,” explains Fasano.

Dr. Fasano adds that more research is needed. He is currently conducting experiments with diabetic rats. Preliminary results from his experiments show that insulin dependent diabetes occurs in lab rats about three to four weeks after increased intestinal permeability. The researchers believe the increased intestinal permeability is associated with increased levels of zonulin.

“We are at the threshold of exciting discoveries in this field,” says Dr. Fasano. “We now have a new way of looking at our cells. Our cells are not stacked together like bricks. They are a dynamic field, which is constantly in flux.”

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Nancy,

FASCINATING. I am going to google zonulin right now. I am also a type one diabetic, so this very pertinent information for me. Thanks!


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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Yes, the point is zonulin regulates gut permeability, and too much zonulin allows large proteins like gluten to get through the lining cells of the small intestine, allowing our immune system to "see them", and then react and create antibodies.

It is not the antibodies that leak in, they are already "in". It is the proteins in the gut like gluten that leak in due to the action of zonulin. As I've mentioned in previous posts, antibodies circulate in the blood and go everywhere. The issues with non-gut problems are due to the cross reactivity of the antibodies (cross react to joint lining (synovium)=rheumatiod arthritis; cross react to cerebellar cells=ataxia; etc.).

Now these are all autoimmune processes. Some associated conditions may be due to other aspects of celiac, such as nutritional deficiencies, eg. anemia due to malapsorption of iron, Vit D, and Vit B12.

Infertility, autism or other conditions could be due to nutritional or other issues, not necessarily the antibody autoimmune mechanism. It is hard to imagine autism is related mechanistically to celiac. This association could be due to the genetic linking issues described in earlier posts, in other words the "celiac gene" could travel in tandem with the "autism gene".

By the way, back to the original topic, here is some additional discussion on tolerable levels of gluten in the diet:

Aliment Pharmacol Ther. 2006 Mar 1;23(5):559-75. Related Articles, Links

Review article: safe amounts of gluten for patients with wheat allergy or coeliac disease.

Hischenhuber C, Crevel R, Jarry B, Maki M, Moneret-Vautrin DA, Romano A, Troncone R, Ward R.

Nestle, Nestec Quality Management, Vevey, Switzerland.

For both wheat allergy and coeliac disease the dietary avoidance of wheat and other gluten-containing cereals is the only effective treatment. Estimation of the maximum tolerated amount of gluten for susceptible individuals would support effective management of their disease. Literature was reviewed to evaluate whether an upper limit for gluten content in food, which would be safe for sufferers from both diseases, could be identified. When setting gluten limits for coeliac disease sufferers, the overall potential daily intake should be considered, while for wheat allergy limits should be based on single servings. For coeliac disease sufferers this limit should lie between 10 and 100 mg daily intake. For wheat allergy, lowest eliciting doses for children lie in the lower milligram range, while for adults they are most significantly higher. Gliadins (part of the gluten proteins) not only trigger coeliac disease, but are also major allergens in wheat allergy. Therefore, measurement of gliadins with validated enzyme-linked immunosorbent assay methods provides an appropriate marker for assessing gluten and/or wheat protein contents in food. Available data suggest that a maximum gluten content for 'gluten-free' foods could be set, which protects both wheat allergy sufferers and coeliac patients.

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Sorry guys, but I just don't have time to read all of this thread, but from what I gather the question is how much gluten causes a reaction? Most of you know that I have a daughter with some major health issues. Well, being the overly analytical, anal retentive, engineer that I am, I actually made a chart of my 11 mo. old, breastfeeding, daughters's weight against the date. I then did a table showing the date, the events going on at the time, and her weight. The chart starts off staying at or below her birth weight. The table explains MULTIPLE GI issues during this time. On the date that I went on a gluten free diet and eliminated gluten foods from our house, her weight finally starts to climb. Her fundo came undone and there was a blip, but the rise continued, even though at a slower rate. Then, all of a sudden, in Dec. her weight gain stopped and she even started to lose for about a month. I went back through everything and finally realized that the date the weight started dropping was the same date I had bought some glutenous(unknowingly) Curel lotion to keep by the kitchen sink. I used it all the time, then touched her bottles and my food. Her projectile vomiting wasn't a problem with this small amount of gluten, but her weight gain stopped. It was the only symptom. At this point I eliminated all gluten toiletries from the house and the gain started again. It's all in a Word document if you would like to see it yourself. It's really amazing. I wish there was a marker board on here for me to show you! I did it to convince the docs who said there's no way she's that sensitive. They are now convinced.

If you're interested in her history, here is a post I did a while back on her issues http://www.glutenfreeforum.com/index.php?showtopic=13497&hl


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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TCA, that's amazing. Few people would have the patience to approach it so systematically, my hat's off to you!

This discussion has been really interesting, although in my own case the whole point is just academic because I react to incredibly small amounts of gluten, lol. And my symptoms are unpleasant enough that I never ever willingly will eat anything that even has a remote chance of cross contamination...

Pauliina

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TO RADMAN -

Will address this to you but anyone is invited to reply. There is a post here regarding ataxia that 'went away' after 6 months gluten-free. This doesn't make sense to me. I was at once time a Rehabilitation Therapist and I alslo have a serious ataxia. Everything I know - medically - tells me that cerebellum damage that is visible on MRI does not go away. Three neurologists have told me that I may well not get worse but certainly will not get better.

It would seem that gait, balance and other gluten induced neuro symptoms that had not caused permanent brain damage could well improve but that actual brain damage would not. Some of my earlier symptoms - e.g. the strange, wavy, uneasy feeling that I have had in my head for the past twenty years is now all but gone. There is however no improvement whatever in the ataxia and, as I said, I have been told that I should not expect any. My own experience dealing with various types of neurological damage would tell me that this advice is sound.

Is it possible that this 'recovery' from ataxia was actually recovery from a symptom rather than recovery from actual damage to the brain? Your comments please. Claire

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It is not the antibodies that leak in, they are already "in". It is the proteins in the gut like gluten that leak in due to the action of zonulin. As I've mentioned in previous posts, antibodies circulate in the blood and go everywhere. The issues with non-gut problems are due to the cross reactivity of the antibodies (cross react to joint lining (synovium)=rheumatiod arthritis; cross react to cerebellar cells=ataxia; etc.).

Now these are all autoimmune processes. Some associated conditions may be due to other aspects of celiac, such as nutritional deficiencies, eg. anemia due to malapsorption of iron, Vit D, and Vit B12.

Ok, thanks for that explanation. One question I've had is, if you eliminate the thing that started the cross-reactivity, like gluten, would that help the disease? For instance, the autoimmune disease I have might be a cross reactivity to a bacteria that resembles a protein associated with HLA B27. If I were to somehow get rid of that bacteria, would my body stop reacting to my own native proteins? Somehow I doubt that particular genii will go back into his jar.

If gluten makes us produce too much zonulin then it seems like you either need to find some magical way of figuring out exactly how much gluten it takes to trigger that, and try to stay under that particular limit. The consequences of jamming open the pod-bay doors seems like it'll mess up the immune system.

And... big excitement... perhaps measuring the amount of zonulin might become the new test if people respond similarily to gluten. Or, if there are multiple things that mess up the zonulin system, at least knowing you have a problem you might be able to solve it before you end up with an autoimmune disease.

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