Kamma

Yes, MisterV, that is entirely possible.  For those who react extra-intestinal to gluten with ataxia and neuropathy responses, physiological responses have a longer rate of resolution with some symptoms lasting for up to a year before final resolution and after adopting the gluten free diet.

There is less research on accidental or inadvertent gluten ingestion but in my case, I am looking at up to three weeks before seeing an improvement in the ataxia, slurring, tiredness.  It takes a while for the antibodies to leave your system and consequently for your body to quiet down. I also notice the severity in my reaction is increasing the longer I am gluten free and inadvertently get glutened.

A word of note:  Hadjivassilliou's research in gluten ataxia points to the fact that the damage to the cerebellum could become permanent due to the loss of the Pukinje cells which are the target of the ttg6 antibodies if gluten is continually ingested.  He highly recommends avoiding all gluten (even processed gluten free products) as gluten ataxia / neurological persons appear to be more sensitive to lower levels of gluten that some other celiacs/NGCI can safely consume.

"In order to work as a treatment for gluten ataxia, the gluten-free diet must be strict: You can'tcheat on the gluten-free diet at all, and you may need to eliminate "gluten-free" products that still contain tiny amounts of trace gluten, according to Dr. Hadjivassiliou.

This may be a stricter diet than is necessary to eliminate intestinal damage, he notes. "It is imperative ... that close monitoring should be undertaken with the use of antigliadin antibodies [i.e., celiac blood tests] and dietetic review to ensure strict adherence to the diet," Dr. Hadjivassiliou and his co-authors concluded."

Good on you for being able to talk yourself out of the anxiety.  Sometimes it's hard once we're in the midst of the anxiety to maintain some distance from it and consequently be able to manage it.  It always helps to remember that the anxiety is 'not you' and it's totally based on your body responding to the gluten.

I hope this was of some aid to you.

Kind regards.

Referenced: 1  http://celiacdisease...a-Treatment.htm

2. http://www.etseq.urv...ut to brain.pdf

3. http://celiacdisease.../v074p01221.pdf

" think i best not eat anything unless my own two hands have prepared it! "

 

Amen.

Amen!

Hello Gatita,

I hope your brother responds to going gluten free.  It would be great news if this is what is causing his ataxia and you can eliminate the cause (as opposed to it be idiopathic.)

Keep us posted on how he makes out.

Kind regards.

Would the sensitivity be to the avenin protein in the oat cover crop?

It's my understanding that the avenin shares similarities with the gliadin proteins of wheat.

Coeliac Australia advises that:

"Gluten is the name given to the protein in wheat, rye, barley and oats that affect people with coeliac disease. It is a composite name representing

• Gliadin in Wheat
• Hordein in Barley
• Secalin in Rye
• Avenin in Oats

The current tests for gluten can measure gliadin, hordein, and secalin but not avenin as it is a slightly different protein. Accordingly it is prohibited under the Food Standards Code to use oats in foods labelled or advertised as gluten free. When people discuss gluten free oats (and laboratories advise that oats are gluten free) what should be said is that they are free from wheat (and rye, barley) gliadin i.e. there is no measurable contamination.

Avenin is an essential part of oats (as gliadin is with wheat). Oats will never be gluten (i.e. avenin) free [even if they are described as gluten (i.e. gliadin) free]. As mentioned in The Australian Coeliac magazine on several occasions, Dr Robert Anderson has found that approximately 1:5 people with coeliac disease react to pure uncontaminated oats i.e. they react to oat avenin.

Since we cannot determine who is the 1:5 and we know that damage can occur in the absence of symptoms, Dr Anderson’s advice (and Coeliac Australia’s) is that oats should not be consumed without a biopsy prior to and during consumption."

Referenced here:  http://www.coeliac.o...isease/faq.html

I hope I didn't give the impression that I was saying that it isn't possible to drink water in a bar.  I only had that problem one time.  They had the ice stored right under where they served up the draft beers.  I just meant that if you are sensitive you might want to check that out.

Yeah, I could see that.  Pulling a draft beer there's always some spillage and it's totally conceivable that some could have spilled on the ice.  Thanks for the tip, dilettantesteph.