Thoughts about going gluten-free

General
1

This is a long post, but hopefully talking about going gluten-free will help us all reach some conclusions.

If you have confirmed Celiac Disease you should definitely go gluten-free. There is absolutely no doubt about that.

My story is for those who are not sure of this issue...

In my case, I was initially diagnosed with Episodic or Sporadic Ataxia.

A gluten antibody test (IgG) showed I had a high count and I went gluten-free for a year and a half.

My cerebellum still showed a progression of atrophy and it meant that gluten might not be affecting it.

An expert neurologist said that most likely I have an an SCA with an unknown number.

I could not find any conclusive evidence for being gluten-intolerant and I started eating gluten again..

Earlier, I also had a stomach endoscopy and biopsy and the standard DQ2, DQ8 tests done and they were negative.

My Gastro-Intestinal doc. and general doc. said I didn't have gluten problems.

Reading more about this, I saw that there was some paranoia about gluten and people said that these tests are not the end-all.

Ok, so I also did a test with a private lab and they said I was gluten sensitive. This was 8 months after being GF and I am a bit skeptical of their method.

Most of these tests are based on anti-bodies for gluten being found in your body and I wonder if it could be normal to have some anti-bodies for it?

I was confused and I stopped gluten anyway, just to try for myself.

When I stopped eating gluten, I felt good at first. I think any human will, since gluten stresses our systems anyway and stopping it would benefit us.

So, go easy on that cake :)

I know there has been embracing of gluten-ataxia (especially in the UK?) but I have not yet seen any evidence of it.

The only theory I have heard is based off the autopsy of 1 individual and I'm not so sure.

There might be some new tests nowadays for gluten.

In my case, I did not see a corelation between gluten and my cerebellum.

I know many people here and with other issues go on a diet with no flour and sugar, but I have not seen any proof of why it works.

Having said that, it might work for you and that's great because you now have something to go by which alleviates your problems. This is a plus.

Anyway, my concluding thoughts...if you're wondering about GF.

Do the Celiac tests first.

Avoid an endoscopy.

Be weary of labs that offer specialized tests.

The best test is to go gluten-free for 3 months or 6 if you can, and see how you feel. No cheating by eating gluten once in a while because then the protein stays in your system for a while and could do the damage.

Keep it longer and see if your cerebellar atrophy (if any) progresses via an MRI (this is the ultimate evidence)

Your thoughts?

2

I've gone low carb when trying to lose weight which included dropping bread, pasta and other foods with gluten in as well as reducing other carbs such as potatoes and rice etc and it made no difference to my ataxia at all.

It was helpful in dropping weight but didn't change my symptoms and the ataxia still progressed.

3

Hi Sentient! :D

I'm a gluten ataxian. :) That sounds liek "gluten alien" doesn't it?! LOL! Anyways, check out the research on Medline and PubMed. There most certainly is very good research out there about gluten ataxia and it's ties to Celiac Disease, etc. Check out Dr. Hadjivassiliou's research! :D You'll be amazed.

I'm one of those whose ataxia is life-or-death serious. I haven't been glutened since January 2010 and have seen a major improvement in my ataxia, but it's been VERY SLOW AND STEADY...not overnight by any means!! So I think folks have to realize if they have gluten issues, because it's autoimmune, you just don't know how long it can take to improve. Some folks see improvement right away, others take years (like me) with slow improvement. If I had even a few mollecules of gluten, I'd be right back where I started (been there, done that) and very very ill, unable to get out of bed or even sit up straight in my wheelchair.

Here's my story. http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html

And some links to research. You can find a good bit here on this website as well if you type "gluten ataxia" into a search. There are a few discussions about the same. Hope that helps!

http://www.livingwithout.com/issues/1_11/untreated_gluten_sensitivity-1800-1.html

Sarah Bosse (Gutsy Girl)

4

I'd like to see a test to show that one is from the planet of gluten ataxia.

Sarah, how was it determined in your case?

I wonder why Dr. H is the only person that supports this theory.

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ok Sarah, I read your link and see you are Celiac and going GF is recommended for you anyway.

6

Dr. H is not the "only one" who supports this theory. Send me your sources that would lead you to believe so and I'll help you dig. Dr. Ford is another, and if you're sincere in learning more, there are plenty of resources online and doctor's names to pick through. Dr. H just happens to be the top researcher in the world in this particular area. That's why I recommended him. You can read at the bottom of his research papers (again, go to PubMed and/or Medline databases) the sources he uses and acquire more information about other doctors who both support and argue with Dr. H's position.

When reading research it's important to ask a few questions:

How was the research funded? (Big Pharma? University? Non-Profit? Special Interest Group?)

What methods were used to ensure researchers/patients/doctors do not know the treatment being given vs placebo? (Double-blind?)

How do position papers and research papers utilize their sources? (Do they take their information from other sources out of context or skew it to fit their findings?)

In terms of tests, well, MRI with contrast can show small spots in a few areas, and these are recognized by some neurologists as evidence of gluten ataxia, others say it's something else or sometimes "artifacts". Mine showed up on my MRI. Also, my neurologist diagnosed the ataxia. I don't know a whole lot about that - I just listened to my neurologist and what he said, then found out more information.

Too tire to write more tonight. HOpe this helps a little. Let me know if you have more specific questions I can help you with. Again, check out what's already been written here and even celiac.com and https://sites.google.com/site/jccglutenfree/home . You can read about the neurological manifestations of gluten sensitivity.

Have a good night/day (night here, perhaps day there?). :)

Gutsy Girl

7

Thanks for your response.

Honestly, I have nothing against gluten-ataxia but I do not see any neurologist talk about it.

I have not seen any neuro in the US support this theory, though there are major research centers here.

I am not sure about Dr Ford credentials and background.

I respect jcc and take her input from a gluten-free board, but have not seen any conclusive evidence of gluten ataxia.

I have not seen more than 3 people who are not Celiacs (with good tests) but have gluten ataxia.

You should question your neurologists if they can tell Gluten Ataxia from MRIs because even Dr H will not be able to tell it.

In fact, even I thought I had gluten ataxia and would gladly go gluten free again if someone can prove it to me.

Take care

8

Sentient,

Been thinking of you. Sorry, I've been REALLY REALLY sick for a long time with some GI issues that are just out of this world, so I'm feeling exhausted and worthless these days. That's why I haven't written back yet.

Basically, I had to do my own research. Google is...really big! :) And now that you have names and a bunch of resources at your disposal, you get to go google. Take charge for yourself and determine whether these things are true or false. You're responsible for your own health decisions at the end of the day. Dr. Ford's credentials aren't too hard to find. Like I said before, check out the references and sources to Dr. H's research. Follow those and you'll find lots of juicy info. It's your job to prove or disprove for yourself and you now have the data to work on that. :)

By the way, folks who have gluten ataxia can have gluten intolerance rather than the more classic Celiac disease. And just because we don't see our own neurologists talking about something doesn't mean it isn't true -- just because it isn't the most popular topic doesn't make it false. Check out the medical journal "Brain". That's a neurological journal. It's got a lot about gluten ataxia. Do your homework, then bring your findings to the table.

For now, my own research is revolving around functional GI and motility disorders, since I also live in that other world. For now, because I've 100% maintained being gluten free, my ataxia has dramatically improved since the last time I was glutened (January 2010). I can read again, I fall much less, my balance has improved so much, my coordination too. So I'm working on attacking my most pressing medical issues and sifting the wheat from the chaff there. But I'm still here in the background if you want to talk. I don't have the energy to "prove it to you," however - people believe what they want to believe and will press only for facts and information as far as they personally really want to go.

Cheers! Good night.

9

oh yeah Sarah, if you feel good without gluten, you should follow your feelings.

It's just I don't feel the gluten co-relation and it would be great if there was some test for gluten ataxia.

Each person is different and have their own Ataxia causes and things that make them feel better.

I hope you feel better.

10

Thank you for sharing your thoughts. I think what you have said also applies to me. I don’t think I have any issues with gluten and am not convinced g-free is the way to go. I can see the benefits for anybody’s health but don’t feel I need to commit to the lifestyle. Unfortunately there are few benefits to going half-way.

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Michael,

In your case, gluten does affect your overall health, and it would be wise to stay off it.

In my case, there is no physical effect of gluten.

Maybe, it does affect me?

I am looking for something quantifiable as a kind of guideline to show that I am affected.

Speech is the one gray area for me to check.

I think that if this is a known issue, there should be some research on it worldwide
but I'm also aware that it might be rare.