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Severe Neurologic Symptoms With Gluten

cwj-tlj

By cwj-tlj
in Doctors

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cwj-tlj Rookie
cwj-tlj
Posted

Because I went gluten-free before blood tests and biopsies and don't have the right Gene for celiac I can't seem to find anyone to help me because I'm not classic celiac. Does anyone know any experts on this that will take me seriously . I'll go anywhere!!! except Mayo tried this already.

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marciab Enthusiast
marciab
Posted

I'm sorry I don't have an answer for you, but have you tried calling around in your area and asking any of the nueros if they are familiar with nuerological celiac ?

I did this when I was looking for a GP. I had the receptionist specifically ask the doctor if he was familiar with celiac before I agreed to make an appt.

I have nuerological problems from gluten too, ataxia and myoclonus, that are gone so long as I avoid gluten. I'm curious as to why you want to see a nuero for this. And I'd love to hear if he / she has any ideas on what to do for nuerological problems caused by an accidental glutenning.

I used Benadryl the last time I accidently got glutenned and it stopped my myoclonus so I could sleep.

Marcia

ravenwoodglass Mentor
ravenwoodglass
Posted

You can continue to look for a neuro but the only thing that they can do is tell you to go into the diet. If they even recognize that you may be celiac. I went to lots of them for many long and debilitating years, had lots of unpleasent tests including electromylograms and spinal taps and still the best neuro in my area were clueless, because I don't show up on blood work. I had severe neuro symptoms that had been progressing since I was 4 years old, I had lost reflexes and had a lot of movement problems and even had a brain scan that in other countries would have diagnosed me celiac when they found lesions called UBOs. Those are diagnostic in other countries but here the response to them by more than one neuro was 'Lots of people have those they don't mean anything'. Of course mine were in the area of the brain that controls movement but to them they still were nothing, "here have a prozac since we can't find anything the reason you bounce off walls is 'due to depression'". I just realized this is turning into a bit of a rant, sorry.

It can take a bit of time for nerve issues to resolve, I started seeing progress after about 4 months. A good sublingual B12 will benefit you a great deal. You also need to be a real bear about CC issues and going with naturally gluten-free unprocessed foods will help a great deal.

My family and myself have been heavily impacted neurologically, if I can be of any help please do not hesitate to PM me.

ENF Enthusiast
ENF
Posted

In New York City, there is the Weill Medical College of Cornell University, Department of Neurology and Neuroscience, Peripheral Neuropathy Center, 635 Madison Avenue 4th Floor, New York, NY 10022, USA, (212) 888-8516

Several of the neurologists at this location specialize in Celiac, and have written medical papers about it. They have collaborated with Dr. Peter H.R. Green, of The Celiac Center at Columbia University.

The days of neurologists not being familiar with Celiac Disease will soon be over. There is a lot of research, regarding the links between Celiac and Neurological problems, being done by the doctors at the Center. Here is an older article from a few years ago summarizing a presenation to the Westchester Celiac Support Group, by the Director of the Peripheral Neuropathy Center, Dr. Norman Latov: Open Original Shared Link

marciab Enthusiast
marciab
Posted

Does anyone here who has nuerological symptoms associated with gluten do anything in particular to help overcome their symptoms when they are accidently glutenned ?

I don't want to go back to taking meds regularly, but I'm afraid to go visit my family for XMAS because they aren't gluten free ... if anything ... they are glutenous ... :lol: Their house will be filled with gluten ...

Kenster61 Enthusiast
Kenster61
Posted

:o I am so glad to even hear you speak of the relationship between Nuerology and celiac disease. I have been having unexplained seizures for the past year and a half. They tell me they are Psychogenic Seizure having to do with something I haven't dealt with in the past and because they have not made any blipps on the EEG tests. But I know I am not that screwed up to have them several times a day.

My question is, and maybe someone knows, that if a person had Celiac for a long time without being treated could develop Nuerological problems even after going on the gluten-free diet. I have an appointment on the 2nd of Jan. with MCV and the more information I go in with the better.

Amy1011 Newbie
Amy1011
Posted

I react to the smallest amount of gluten. What I found to really help me is Biocore DPP-IV from Vitacost. Over and over I have confirmed that it has helped me when I know I have gotten a little bit of gluten. I usually can't eat out anywhere without getting sick, but with this I am able to.

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ravenwoodglass Mentor
ravenwoodglass
Posted
:o I am so glad to even hear you speak of the relationship between Nuerology and celiac disease. I have been having unexplained seizures for the past year and a half. They tell me they are Psychogenic Seizure having to do with something I haven't dealt with in the past and because they have not made any blipps on the EEG tests. But I know I am not that screwed up to have them several times a day.

My question is, and maybe someone knows, that if a person had Celiac for a long time without being treated could develop Nuerological problems even after going on the gluten-free diet. I have an appointment on the 2nd of Jan. with MCV and the more information I go in with the better.

What may be occuring is that your sensitivity level has gone up and the problem is becoming more obvious. Once we start to feel better it can make issues that were once kind of lumped into a ball with all our other misery seem more prominent. How careful are you about CC? Do you eat out frequently, have you eliminated it from toiletries and nonfood items? Do you consume gluten grain distilled alcohol or vinagers? Those are safe for many but not for all. If you were positive on blood work have you antibody levels gone down? How about your levels for B12, folate and iron? Were those checked? Low B12 levels can contribute to neurological problems. If you are not supplementing B12 with a sublingual you need to.

I suffered sub illeal seizures for many, many years. I was on some really nasty meds for them. Extreme strictness in following the diet took care of them even before I knew that celaic was more than just a GI problem. In fact the resolution of my neuro issues is what got me researching and led to my finding this site.

One last note, if they do an MRI on you make sure they do not discount any 'bright spots' or UBO's. These are diagnostic for neuro celiac in other countries but unfortunately the research has not been listened to by very many neuros here in the US. This is changing, slowly, and hopefully doctors here will not keep their heads in the sand too much longer.

marciab Enthusiast
marciab
Posted
I react to the smallest amount of gluten. What I found to really help me is Biocore DPP-IV from Vitacost. Over and over I have confirmed that it has helped me when I know I have gotten a little bit of gluten. I usually can't eat out anywhere without getting sick, but with this I am able to.

Thanks Amy,

I was asking about CC on another gluten-free board yesterday and a friend said that she had some luck with DPP-IV from the Houston company and I noticed one mother of an autistic child recommending it for other autistic kids. So I figure it's worth a try.

However, I noticed when googling DPP-IV that there's info on the web about the benefits of inhibiting DPP-IV in Type 2 Diabetics. I'm not sure what the latest research on all of this shows. I'm severely hypoglycemic and have to consider I could be pre diabetic.

Can you tell me how much and how often are you taking this ? And just out of curiousity did you try Glutenease ?

Thanks again ... Marcia

Amy1011 Newbie
Amy1011
Posted

I take up to 4 when I am eating out. Less for smaller meals. Make sure you take the first one, right before you eat. Not 10 minutes earlier or later. I space them apart from beginning to end. I only take them when I am not 100% sure something is gluten free (cross contamination). Haven't tried glutenease. These have worked so well that I haven't looked for anything else.

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