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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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    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

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    • trents
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      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
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