Recovery?

[Plb]

Hi...my husband has had gait issues for almost ten years. We have been to numerous neurologists, all which tell us what he doesn't have but not what he does. We do know that he was b12 deficient about 1.5 years ago. We thought it was from taking prilosec. In December my daughter stumbled upon the connection between gluten and cebrellar ataxia. Since the end of Dec, we have been gluten free. 

His mechanical walking hasi mproved. he  used to swing his leg, now he is lifting it with difficulty. He does balance exercises and strength exercises. He's on a gluten free diet. Takes b12, folic and d vitamin. In addition he takes a multi vitamin. I give him soy beans almost daily for the acetyl-dl-liceine benefit. We have given up on doctors. I'm looking for anything else we could be doing. Also, any encouragement that he might improve. It has been a long lonely road. 

 

[kareng]

3 hours ago, Plb said:

Hi...my husband has had gait issues for almost ten years. We have been to numerous neurologists, all which tell us what he doesn't have but not what he does. We do know that he was b12 deficient about 1.5 years ago. We thought it was from taking prilosec. In December my daughter stumbled upon the connection between gluten and cebrellar ataxia. Since the end of Dec, we have been gluten free. 

His mechanical walking hasi mproved. he  used to swing his leg, now he is lifting it with difficulty. He does balance exercises and strength exercises. He's on a gluten free diet. Takes b12, folic and d vitamin. In addition he takes a multi vitamin. I give him soy beans almost daily for the acetyl-dl-liceine benefit. We have given up on doctors. I'm looking for anything else we could be doing. Also, any encouragement that he might improve. It has been a long lonely road. 

 

 

3 hours ago, Plb said:

Hi...my husband has had gait issues for almost ten years. We have been to numerous neurologists, all which tell us what he doesn't have but not what he does. We do know that he was b12 deficient about 1.5 years ago. We thought it was from taking prilosec. In December my daughter stumbled upon the connection between gluten and cebrellar ataxia. Since the end of Dec, we have been gluten free. 

His mechanical walking hasi mproved. he  used to swing his leg, now he is lifting it with difficulty. He does balance exercises and strength exercises. He's on a gluten free diet. Takes b12, folic and d vitamin. In addition he takes a multi vitamin. I give him soy beans almost daily for the acetyl-dl-liceine benefit. We have given up on doctors. I'm looking for anything else we could be doing. Also, any encouragement that he might improve. It has been a long lonely road. 

 

I am guessing he didn't get tested for celiac before going gluten free?  Honestly, you still don't know what his problem is.  I would push doctors to figure out what his real issue is.  

[GFinDC]

Hi PLB,

If he hasn't been gluten-free very long, he might still be able to get blood testing done for the gliaden (gluten) antibodies.  More than a couple weeks may be too long tho.

As far as recovery, it varies from person to person.  The condition associated with celiac that you are thinking of is probably gluten ataxia.  Gluten ataxia is an antibody attack on the brain cells that can cause problems walking and controlling muscles.  Generally it seems people consider nervous system healing / recovery to be a fairly slow process.  Although it sounds like your husband is experiencing some recovery already, which is great!

I've read about coconut having benefits for people with alzhiemers disease, but don't know if it would help him.  I doubt it would hurt though.  The B-vitamins including B-12 are supposed to be very important for nervous system health.  Vitamin d is also important but make sure you take a supplement that is tested and reliable.  Check out Open Original Shared Link  for their review/test results. 

Dr. Hadjivassiliou has done some research on gluten ataxia and you might find reading his information helpful.

Nuerological symptoms without gastro symptoms
Open Original Shared Link

Dietary treatment of gluten ataxia
Open Original Shared Link

Ubo's, Epilepsy And Celiac

Testing for celiac disease usually starts with a blood antibody test and then a endoscopy to check for gut damage.  If a person has been off gluten for a while though, the tests are not much use.  The antibodies in the bloodstream start to drop off and may not be detectable anymore.  They usually say to eat gluten for around 12 weeks in that case before trying testing again.  I can understand why he wouldn't want to do that though considering his symptoms.  I am not sure it would be a good idea.

Welcome to the forum and congrats on finding  away to improve his condition!

If you turn on the notify me of replies slide button near the bottom left of the reply screen you can get an email when you receive responses to your thread.

There is some helpful info in this thread about celiac disease. 

[Plb]

Thank you for sharing those web sites. I will look at them. We have been gluten free since December so it's been a while. Once, he had a gluten free beer, the kind that they take the gluten out, and his legs felt very heavy and had a more difficult time walking. I really don't want to experiment. 

Although I am very careful about what we eat, I am concerned that some of our medication could contain gluten. Is there any easier way to tell if medication has gluten. I did find a website which listed drugs and known gluten but every drug was on it or was determined to be gluten free

[GFinDC]

Hi PLB,

The safe way to find out about the gluten status of medications is to contact the manufacturer and ask them.  Medications don't fall under the same rules of labeling that foods do in the USA.  Your pharmacist should be able to answer that question.  It's possible a manufacturer could change ingredients in a medication, so static lists shouldn't be trusted.  Mostly meds aren't a problem though.  The only ones I've read about possibly being contaminated with gluten are some thyroid medications.   They mostly use corn starch as a filler material in pills in the USA.  But there is no set rule on it.  Ir's just cheaper.  You can try searching the forum for the drug name also, but generic drugs are something you'll need to check yourself.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet. Ooops!
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

I tried those Omission gluten removed beers a few ties.  They made me sick.  Redbridge is a gluten-free beer made from sorghum, and there are a few others.  I think you are on the right track by him going gluten-free.  If his symptoms are improving, even slowly, that's a good indicator that gluten is a problem.  Testing for celiac is probably not going to work at this point, it's been a while.  It's nice to know for sure, but the treatment is the same either way, the gluten-free diet.  Doctors will sometimes test people for vitamin deficiencies and celiac antibodies once a year if they are diagnosed.

The gluten-free diet can be a very healthy diet if you stick to whole foods and mostly avoid the processed gluten-free foods.  Breads and such.  Mission corn tortillas are a low cost sub for bread and widely available.

 

[Plb]

Thank you so much for all the info.  He just tried red bridge without any consequences. The commission was the one that gave him trouble.  I do feel that his symptoms/damage was from b12 deficiency. The b12 deficiency I think was caused by long term use of prilosec and gluten. His walking deteriorated so slowly for years and improvements are there but slow. I'm impatient and unsure since we can not find any doctor to confirm a diagnosis. Our insurance precludes any existing conditions so we do not have the luxury to try dr after dr. 

[frieze]

read up on coQ10, inre: balance.  good luck

[Fundog]

On 7/2/2016 at 6:53 AM, Plb said:

Thank you so much for all the info.  He just tried red bridge without any consequences. The commission was the one that gave him trouble.  I do feel that his symptoms/damage was from b12 deficiency. The b12 deficiency I think was caused by long term use of prilosec and gluten. His walking deteriorated so slowly for years and improvements are there but slow. I'm impatient and unsure since we can not find any doctor to confirm a diagnosis. Our insurance precludes any existing conditions so we do not have the luxury to try dr after dr. 

What???  No,no,no.  If you are in the US then insurance companies can no longer deny care based on pre-existing conditions, nor can they enforce a waiting period for care.  That's one of the things Obama signed into law when he started the Affordable Healthcare Act.  Do some investigating and contest it.

[Plb]

I used the term insurance company incorrectly. It's technical a sharing medical co op which meets insurance requirements but can preclude pre existing conditions.

Thank you I will check on coQ10