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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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  • Recent Activity

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
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