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Cant Function Safely After Glutening

Kquad

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Kquad Apprentice
Kquad
Posted
  • Author

WOW, I mentioned to my nurse practitioner that I was taking steroids. Next thing I know I am in front of a neurologist. He starts to tell me that the only way I can have brain involvement, is by malabsorption. All of my tests are normal. I mentioned antibodies in the Purkinje cells. He said, "well lets look it up". Opened his browser to medical journals and looked at me and said." You are right, thanks for educating me. Let's get an MRI."

I about hit the floor

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AVR1962 Collaborator
AVR1962
Posted

WOW, I mentioned to my nurse practitioner that I was taking steroids. Next thing I know I am in front of a neurologist. He starts to tell me that the only way I can have brain involvement, is by malabsorption. All of my tests are normal. I mentioned antibodies in the Purkinje cells. He said, "well lets look it up". Opened his browser to medical journals and looked at me and said." You are right, thanks for educating me. Let's get an MRI."

I about hit the floor

Good for you, let us know how your MRI turns out....I am supposed to have one done also.

I was reading online, and I hope I am not repeating myself here with this story, my brain sometimes feels like it is on "fry" all the time! I was reading about a study done on gluten intolerant/celiac patients who were having balance and memory issues. MRI was done and found spots on the brain in different location than say a person with stroke. Patients went on a strict gluten-free diet for 1 year, monitored and then retested. Test showed no change in the brain in one year, however, the health of the patient improved.

I found this amazing and scary all at the same time!

  • 2 weeks later...
Kquad Apprentice
Kquad
Posted
  • Author

after 5 weeks, I am finally getting better. Any stress still sets off my ataxia and last week I had neuropathy in my hands. If I exercise, watch out, I am in bad shape for a few hours. However, the rest of the time, I am feeling comparably good. :D : : I was reading repeated exposure can cause permanent brain damage. I am going to be so careful.

pricklypear1971 Community Regular
pricklypear1971
Posted

Yes, I have memory issues, dizziness, inability to comcentrate, sore joints AND SHAKY HANDS from gluten. I have virtually zero stomach issues. Apparently I also have DH....

My liver and adrenal system are a bit confused, especially after 2 shots of corticosteroids, prednisone, etc. For the "hives" (DH).

I'd never try steroids, they'd probably send me to the ER at this point...but I'd try the charcoal.

Btw, I was just glutened and the "corticosteroid" feeling of being high and overstimulated came back. Ever see "Get Him To The Greek" and the "stroke the furry wall" scene? That's me on gluten.

AVR1962 Collaborator
AVR1962
Posted

after 5 weeks, I am finally getting better. Any stress still sets off my ataxia and last week I had neuropathy in my hands. If I exercise, watch out, I am in bad shape for a few hours. However, the rest of the time, I am feeling comparably good. :D : : I was reading repeated exposure can cause permanent brain damage. I am going to be so careful.

I have been experimenting to find what works since the original posting and perhaps this will help. I have increased my vit D and now am taking 2400 IU daily to try and relieve the balance issues, for the buzzing in my ears I have increased my B12 to 1000 mcg but don't take it at night as it causes me not to sleep restfully and am taking an iron supplement daily, increased my zinc to to 60 mg for neuro function (I was having troubles with taste and this resolved that as well).

I have having trouble keeping my potassium levels (deficiency caused restless legs, muscle spams and twitches) up and was eating alot of avocado and bananas trying to avoid acidic potassium possibilites and I started having swelling in my feet, they were not wanting to bend/move (mentioned previously0. I found out bananas and avocado can cause inflammation so have switched.....pineapple, along with many other foods are anti-inflammatory. Swelling stopped.

Pins and needles feeling between the toes and fingers are issues with peripheral neuropathy and can be helped by taking L-caritine. Hair loss and bone fractures can be the result of a loss of silicon.....both I have not yet got to try but do have them ordered.

AVR1962 Collaborator
AVR1962
Posted

If I exercise, watch out, I am in bad shape for a few hours.

Try drinking Gatoraid to replace your electrolytes, it's helped me.

pricklypear1971 Community Regular
pricklypear1971
Posted

WOW, I mentioned to my nurse practitioner that I was taking steroids. Next thing I know I am in front of a neurologist. He starts to tell me that the only way I can have brain involvement, is by malabsorption. All of my tests are normal. I mentioned antibodies in the Purkinje cells. He said, "well lets look it up". Opened his browser to medical journals and looked at me and said." You are right, thanks for educating me. Let's get an MRI."

I about hit the floor

I found that too, now I can't find it. Do you have the link? I'd like to give it to family members. I'm referring to the article about mri's and brain damage from gluten. For some reason the quote function isn't working well.

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  • 3 weeks later...
Kquad Apprentice
Kquad
Posted
  • Author

I just got my final MRI reading. showed cerebellar atrophy, consistent with gluten caused ataxia in some papers. I am 42 y/o old with no other risk factors for atrophy that I can find.

pricklypear1971 Community Regular
pricklypear1971
Posted

I just got my final MRI reading. showed cerebellar atrophy, consistent with gluten caused ataxia in some papers. I am 42 y/o old with no other risk factors for atrophy that I can find.

Ouch. How do you feel about that?

Kquad Apprentice
Kquad
Posted
  • Author

Ouch. How do you feel about that?

A little upset I was misdiagnosed for so long. Hopeful to get more function back. Also slightly relieved that the next time a Doctor looks at me like I am crazy, I have proof.

Twinklestars Contributor
Twinklestars
Posted

Wow. I'm glad you finally have some answers, although the answers are a little scary. It will be a great day when doctors listen in the first place.

Kquad Apprentice
Kquad
Posted
  • Author

Well, the response from my doctors leads me to believe we are in this alone, if you have neuro symtpoms! I was presented at the neurology board. They decided that I should be on a strict gluten free diet ( Thank you for the obvious). However, they will not treat me unless I come back with positive anti-gliaden bodies. There is no way I am going back on gluten, just to make them happy. As far as the MRI, they ( the neurologist, who told me last week, he really does not read MRIs) told me he decided that my MRI is now fairly normal. This in spite of the radiologist, who does read them, stating there is damage. This damage corresponds directly to my symptoms! I have his report which my neurologist also noted damage handwritten on the bottom. He then told me, he has no experience here and that I should bring it up with my GP. The same GP, who sent me there, because she had no idea what to do.

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    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      I just got my test results after a less than 2-week gluten challenge consuming about 5 g of gluten per day on average.  Anti tTG-IgA: <0.2 AU/ml (<8 is negative) IgA: 180 mg/dl (Reference range is 70-400) I previously had been on a gluten-free diet for around 3 years or so, with occasional cheating and not being strict about cross-contamination. I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches). Is this likely to be NCGS rather than celiac disease given the test results and my history? Note: I have one copy of HLA-DQ8.
    • trents
      Inflammation and Menier’s disease link?

      By trents · Posted

      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Inflammation and Menier’s disease link?

      By nataliallano · Posted

      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      Hypothetical question about antibodies

      By Scott Adams · Posted

      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
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