Gluten Sensitivity - Celiac - Ataxia Etc.

[Claire]

You might check these out. Claire

Gluten sensitivity is an important cause of apparently idiopathic ataxia and may be progressive. The ataxia is a result of immunological damage to the cerebellum, to the posterior columns of the spinal cord, and to peripheral nerves. We propose the term gluten ataxia to describe this disorder.

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BACKGROUND: Gluten ataxia is a common neurologic manifestation of gluten sensitivity.

CONCLUSIONS: Patients with gluten ataxia have antibodies against Purkinje cells. Antigliadin antibodies cross-react with epitopes on Purkinje cells.

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Gluten sensitivity can manifest with ataxia. The metabolic status of the cerebellum was investigated in 15 patients with gluten ataxia and 10 controls using proton MR spectroscopy.

The fact that the disease is strongly associated with the same HLA haplotypes found in coeliac disease not only demonstrates coeliac disease and ataxia with gluten sensitivity to be part of the same disease entity but supports the hypothesis of an immunological pathogenesis of cerebellar degeneration.

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[jerseyangel]

Thanks Claire--that was interesting

[tiredofdoctors]

Claire -- thank you so much for those references. I'm going to send them to my neuro. I'm sure that there are a lot more of us who appreciate all your input, as well. I really appreciate you. .. . Lynne

[TCA]

This info is so helpful. My father has been in chronic pain for 7 years and no one has been able to find out why. After learning about celiac with my kids being diagnosed, I suspect it to be his problem. This is very informative and I'm passing it on. Do you have ataxia and, if so, what are your symptoms.

Tanya

[Claire]

This info is so helpful. My father has been in chronic pain for 7 years and no one has been able to find out why. After learning about celiac with my kids being diagnosed, I suspect it to be his problem. This is very informative and I'm passing it on. Do you have ataxia and, if so, what are your symptoms.

Tanya

I am so pleased when a post is helpful to someone. Thanks for telling me.

Yes I do have ataxia. I have both gait and balance problems. The gait problems particularly have been worsening over the past three years. I cannot maintain a straight pursuit - rather veer off to the left and have to keep righting myself. I don't exactly go where I intend to go. It's none too safe! MRI shows classic demylinizing (loss of the sheath that covers nerves) in the cerebellum It is similar to what MS looks like on a scan except it is not as widespread - confined to a definite smaller area.

I did have severe fatigue for about a year but began taking CoQ10 which has done wonders for the energy level. It is also recommended for ataxia condition. I have essential tremor in both hands and arms (may or may not be related) and a similar condition in both legs - jelly legs. This complicates the gait problem. Essential tremors are of the MS variety - not a resting tremor list Parkinson's. I also show some nystagmus (eye issue).

I am on a Gluten-free Casein-free diet, doing physical exercises to stimulate the brain and hoping to maintain the status quo.

Good luck wiith your Dad. Hope you find an answer for him. Pain diminishes the quality of life. Claire

[SurreyGirl]

...ataxia....

Claire

Hi Claire

Just had another thought and I wonder whether you/anyone can point me in the right direction. In ataxia seen in XP, it's noticeable that the tendons either don't grow or shorten - this makes it difficult to walk.

I am totally convinced that there is something happening to blood vessels feeding the body with nutrients (it always starts at the edges, either of the body or of the organs).

So, apart from inflammation, what does gluten do to the capillaries? I read somewhere that it possibly clogs them up? Does anyone have a link?

This would make sense to me, because tendons generally have poor blood supply, so if the poor gets worse, then they would stop growing and/or loose their functionality.

Interestingly, on a slightly different note (malabsorption) I now suspect that my son has low vit K, as he seems to have frequent nose bleeds for no apparent reason. I just can't wait to give him some vit/min MOT, perhaps more so than the food sensitivity tests as there could be other things that he has been malabsorbing too. But this has to wait until March now.

[danikali]

This is very very good and interesting information. Thank you for sharing!

I noticed that you said that you were also casein free. Is there a link between Ataxia and casein? The more I hear about casein, the more I get scared that I could be damaging something without having any symptoms to connect to casein, but are being caused by ingesting it. Can anyone give me more information on casein and asymptomatic cases? It seems like no one should really be eating it!

[Claire]

Hi Claire

Just had another thought and I wonder whether you/anyone can point me in the right direction. In ataxia seen in XP, it's noticeable that the tendons either don't grow or shorten - this makes it difficult to walk.

I am totally convinced that there is something happening to blood vessels feeding the body with nutrients (it always starts at the edges, either of the body or of the organs).

So, apart from inflammation, what does gluten do to the capillaries? I read somewhere that it possibly clogs them up? Does anyone have a link?

This would make sense to me, because tendons generally have poor blood supply, so if the poor gets worse, then they would stop growing and/or loose their functionality.

Interestingly, on a slightly different note (malabsorption) I now suspect that my son has low vit K, as he seems to have frequent nose bleeds for no apparent reason. I just can't wait to give him some vit/min MOT, perhaps more so than the food sensitivity tests as there could be other things that he has been malabsorbing too. But this has to wait until March now.

Hi again - Note this paragraph:

"Peptide fragments and amino acids cross the epithelial cell membranes by active transport. Inside the cell they are broken into amino acids that then enter the capillary. Gluten enteropathy is the inability to absorb gluten, a protein found in wheat."

I have not heard the gluten enteropathy stated this way! The body cannot absorb nutrients it does not receive. This would take you back to the malabsorption issue. Has he had the lactulose/mannitol permeability test? This test is very conclusive

Source:

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This article is very informative for anyone with - what? - just about anything. Good diagrams.

I will get back to you on this thread. Claire

[tiredofdoctors]

Hi Claire -- I tried to respond to your PM, but this darned thing wouldn't let me. Just to let you know, I think you're fantastic. Seriously, I appreciate all your information very much, and you have really helped make this transition much easier for me. I'm curious about your casein-free status, as well. The staple of my diet is a "smoothie" made with yogurt, protein powder comprised of Egg & Milk protein, flax seed and fruit. The casein portion is obviously LARGE -- so I'm a little concerned. Is casein intolerance prevalent with ataxia, also? Or, is it something else that I should have checked out? Any info is greatly appreciated. Lynne

[Claire]

This is very very good and interesting information. Thank you for sharing!

I noticed that you said that you were also casein free. Is there a link between Ataxia and casein? The more I hear about casein, the more I get scared that I could be damaging something without having any symptoms to connect to casein, but are being caused by ingesting it. Can anyone give me more information on casein and asymptomatic cases? It seems like no one should really be eating it!

I am casein free because of the similarity between the wheat protein gluten and the milk protein casein.

I have an ataxia - gluten effects ataxia regardless of the cause of the ataxia. The immune system attacks body cells that resemble (at the molecular level) the ingested reactive food. Thus the immune system attacks the brain cells - which are similiar in structure to the gluten protein. Casein and gluten 'look alike' - the immune system can interpret them as one and the same thing. Thus avoiding the casein is a precautionary measure in my case.

I am also reactive to dairy products. Do not know if that is lactose intolerance or a casein issue.

Casein is not a bad thing - just bad for those who cannot handle it.

Go off all dairy for a while...see how you feel. Then introduce some hard, matured cheese ...see how you feel. If you don't feel any different, you're probably all right with casein. Then introduce some plain milk...see how you feel. If it gives you trouble, it's likely the lactose.

You can also test at home for casein by this unscientific but quite reliable method: don't eating ANY dairy for awhile (couple of weeks) , then try some hard, matured cheese [the older the better]. Since the aged cheese is virtually lactose free, you should not have a reaction. If you do then it is likely that casein is the problem.

Casein reaction, like gluten - is a permanent one. Claire

Some different quotes:

"In general we recommend a diet free of gluten and casein for . . . .patients. The reason for this is that opioid [sedative quality] peptides from gliadin are almost of the same structure as casomorphins from casein. We also recommend addition of multivitamin with trace minerals and magnesium, cod liver oil and calcium."

Note that casein is usually an actual allergy, where lactose intolerance is an enzyme (lactase) deficiency. With lactose intolerance, you can take lactase supplements, or eat dairy products that either don't contain much lactose (butter, cream, ghee, some cheeses) or have been fermented (yoghurt, kefir). Avoiding casein is more difficult. Some people can tolerate A2 casein, eg from sheep or goats milk, whereas others can tolerate no diary products at all, with the possible exception of properly prepared ghee.

GLUTEN & OTHER FOOD INTOLERANCES

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Hard matured cheese doesn't have any lactose to speak of, that's why it's good to try that first. Now if the cheese already causes symptoms, that would mean likely it's the casein, and that means no dairy, not even low-lactose dairy. If only the milk gives symptoms, but not the cheese, low-lactose products, or lactase pills, could help.

Glutens are proteins found in the Plant Kingdom Subclass of Monocotyledonae (monocots.) These plants are members of the grass family of wheat, oats, barley, rye and triticale, and their derivatives. Derivatives include: malt, grain starches, hydrolyzed vegetable/plant proteins, textured vegetable proteins, grain vinegars, soy sauce, grain alcohol, flavorings and the binders and fillers found in vitamins and medications. Casein is a phosphoprotein of milk, which has a molecular structure that is extremely similar to that of gluten.

"The enzyme that splits lactose into glucose and galactose is called lactase, and it is located on the surface of the small intestinal villi," so when the villi are damaged, the lactose intolerance results -"

In order to be lactose intolerant there has to be a problem with the intestinal villi - small hairs on the lining of the intestinal wall. This can be caused by many different things. If the damage can be healed then the lactose intolerance will go away. Not so of casein intolerance.

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[danikali]

Wow! That was great information! Thank you so much! I will eventually try the test.

[SurreyGirl]

Hi again - Note this paragraph:

..lactulose/mannitol permeability test?

Thank you Claire.

No he hasn't had this test, although when he was little he was often presribed lactulose, so I am vaguely familiar with it. In those days we were completely in the dark (well, literally!).

Look what I found! More about CIC (circulating immune complexes). Now I understand more why in Dangerous Grains, the authors said that anyone with breathing problems might be gluten-sensitive: the filter is in the lungs!

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