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Gluten Ataxia

UnhappyCoeliac

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UnhappyCoeliac Enthusiast
UnhappyCoeliac
Posted

I don't have ataxia, but I fear I have had symptoms of it 2-3 times while not being gluten free. I am now gluten three heh two days (longest so far)

And im simply worrying if I had mild ataxia or gluten ataxia was ever going to come it back will it simply go away now?

Hope someone can help this really scared the hell out of me into going gluten free.

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GFinDC Veteran
GFinDC
Posted
I don't have ataxia, but I fear I have had symptoms of it 2-3 times while not being gluten free. I am now gluten three heh two days (longest so far)

And im simply worrying if I had mild ataxia or gluten ataxia was ever going to come it back will it simply go away now?

Hope someone can help this really scared the hell out of me into going gluten free.

Open Original Shared Link

Good for you going gluten-free! It is not as hard as it seems at first. Just takes a while to learn the ropes as they say.

If you can stay off the gluten the antibodies should diminish over time. So your symptoms may not go away but they wouldn't in theory get worse either. That is if they are caused by gluten in the first place.

UnhappyCoeliac Enthusiast
UnhappyCoeliac
Posted
  • Author

Ive read that article perhaps I am being paranoid I am not sure 3 days gluten free now

ang1e0251 Contributor
ang1e0251
Posted

So why is it you don't want to be gluten-free?

GFinDC Veteran
GFinDC
Posted
Ive read that article perhaps I am being paranoid I am not sure 3 days gluten free now

Well, that is not a bad thing! At the beginning of the diet there are lots of things to learn, and lots of unknowns. Is this food safe? Is that ingredient safe? Is this food cross contaminated? You can't usually tell just by looking at the food. Being "paranoid" about the food is not a bad thing if it helps you learn. IF you are having symptoms of gluten ataxia then it probably will help a lot to be strictly gluten-free. It is not an instant cure of course, it takes time for things to improve and to find an eating plan that works for your body. Simple foods made at home with minimal spices are a good idea to start out. And some B and D supplements might help after you confirm they are gluten-free. Extra fiber might be helpful also. Pysillium husks work well for me. And oats but some people have problems with oats.

UnhappyCoeliac Enthusiast
UnhappyCoeliac
Posted
  • Author

thanks gluten-free

Over the week I was away and had a heavy social schedule with friends I expected neuro symptoms simply because they pop up when sleep depraved but I got none was very happy

My total hours of sleep in three days was 6 hrs and had no balance issues. I was boating, drinking, and pushing boats on to trailers, swimming canoeing fairly active

Basically if my body decided to go retarded and make me lose my balance i would have been screwed but thank god nothing happen. I can only put the no symptoms too down to being gluten free

GFinDC Veteran
GFinDC
Posted

Sounds like a fun time on the water UnhappyC!

I had sinus infections on and off for years before going gluten-free, and often had loss of balance. Most of that cleared up for me after I had been gluten-free a while and learned how to avoid the stuff. I had another round of losing balance recently but it was due to high blood pressure meds HCTZ (hydroclorathiazide) I was taking. Stopped that stuff and now I am doing better again. HCTZ tends to throw your potassium levels off and that can cause lots of different symptoms.

I have problems sleeping if I eat dairy. It really charges me up and I can't get to sleep. They say the dairy protein casein is similar to the gluten proteins. So there may be a possibility of a cross reaction. Sometimes autism patients are put on diets restricting gluten and dairy. They also say the gluten and casein proteins can cross the brain membrane and cause opioid like reactions. So some people think that can cause the withdrawal type feelings that some people experience when going gluten-free.

You might want to read up on DPP-IV supplements. They may help you some with gluten and casein digestion.

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    • knitty kitty
      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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