Neurologist Wants Me Gluten Free As A "test"

[Ellette]

So my sister and I have always joked about how our health problems must be because of all the royalty we are related to and the inbreeding just ruined our health. I have had multiple doctors literally say "well that is just weird", or they don't even put it quite that nicely and simply say that I'm weird.

Now my neurologist is wanting me to try going off gluten because she thinks I might have Celiac and thought that if I spent a month or two off of it, felt better, then ate a piece of bread and felt miserable...I'd have an idea. She thinks that way I'd probably not need the testing. She is hoping it will help with my seizures. I also am she only person that 5 doctors now (3 specialists) have seen who developed tinnitus when they developed epilepsy and she's hoping it might help with that. I just don't know, I have been fighting with this for so long it seems crazy to get my hopes up. Would a month and a half or two months be long enough to go without gluten to get a good idea about how I am reacting? I know I've heard that it can take ages for some people to heal but does everyone feel better instantly?

I always had problems with bronchitis, I always got ear infections. Up until I got my tonsils out when I was 23 I had over 150 ear infections. When I got pregnant after I developed epilepsy I had bronchitis for 6 out of the 9 months and even tore ligaments in my back from coughing so much. Those are my more "normal" things though that I've had since I was a little kid.

So anyway ever since Nov 28th 1999, my health has been extra screwed up. I had my first seizure that day and everything else began to go downhill as well. My stomach has been getting worse and worse. My cycles are MISERABLE every month. I truly can't wait till menopause hits. I've tried taking different birth controls that are supposed to make that better, but they make it much worse. Every month I think that I am now one month closer...ok, so I have probably another 15 years to go, but still. That also always makes my stomach problems worse.

Other things that have made it so that my neurologist decided it might be a good idea to have me do this are things like: I bruise very easily and for no reason (actually had a doctor ask me if my husband beat me), I'm generally anemic, I'm always tired, I have Vitamin D deficiency, I developed osteopenia in my early 30's (I pretend to be 28 but am in my late 30's now...I'll be 28 till I'm 82 at least), I have insomnia even though I'm tired, just plain don't feel good, have bouts of depression, my seizures which are actually a weird dizziness, my tinnitus, I get vertigo occasionally, I have an irregular heartbeat (had to wear a heart monitor when pregnant), my hands will tingle occasionally, my circulation isn't great, I had shingles on my left optic nerve my senior year in high school and then had a re-flare my sophomore year in university which seems to have left my optic nerve deformed. That is just a small list of some of the things that have always seemed unrelated.

Even my epilepsy doesn't show up as normal. The head epilepsy doctor at the best hospital in Oregon said that he only ever sees patients once because other doctors send people to him for confirmation and he sends them a report. He said that I was "interesting" (a nice way of saying weird I think) and he would actually like to have me come back to see how my case continued. I'm so very very tired of being interesting and weird and would like to feel a bit normal for once. I would like my seizures to stop getting worse. I'm on the maximum dose my neuro is comfortable with for two medications so my next step is a third and that means more side effects.

I truly am trying not to get my hopes up, but I'm having a hard time. I've been gluten free a couple days (or I think so...think, may have eaten something with some odd ingredient I didn't realize...just printed out a list now to lug around) and haven't felt any difference, but I'm not caught up on sleep so hopefully that will help too.

[Dixiebell]

Welcome Ellette!

It sounds like your Dr might be on to something. If you do want testing done please do it before being gluten free any longer. If you are eating gluten-free it will most likely skew the tests and you could get a false negative. After all the tests are done, even before you get results, you can go gluten-free.

Tests to ask for:

TTG Igg AND Iga

Antigliadin Igg AND Iga

Endomysial Antibodies

Total Iga Serum

Deamidated Gliadin Peptide IgA and IgG (this is a newer test)

[Skylark]

I'm confused. If your doctor suspects celiac did she order the blood tests? Not all celiacs show the antibodies but it's the standard of care these days. As Dixiebell says, you MUST be eating gluten for the tests to work so call your doctor and ask for a celiac panel before you start the diet. You may also want to hold off until you get those results and know whether you need a biopsy. That way if the diet helps you don't have to make yourself sick again.

You definitely have a lot of symptoms of celiac and while seizures are unusual, they can definitely be caused by celiac. You are lucky that your neurologist is reading the literature and knows that. Once the testing is done, give the diet a good, strict try for at least three or four months, as some people with neuro symptoms don't have positive celiac tests but they're still very badly affected by gluten. I say a few months since the CNS can take a while to recover from damage. You should see some relief of the stomach trouble sooner if you're on the right track.

[ravenwoodglass]

Has your neuro done an MRI? Brain lesions called UBOs or unidentified bright objects are often found with those that have neurological impact and are diagnostic of antibodies attacking the brain. Unfortunately my neuro didn't know that so thought I had MS.

As the others have said ask for a celiac panel before you go gluten free and if you choose to do an endo keep eating gluten until that is done. Some doctors are now skipping the endo though if blood work is positive.

Both endo and blood do have fairly high rates of false negatives though so do try the diet even if they are negative.

Neuro issues usually take longer to heal than gut symptoms but they can heal. I could barely walk, was having atypical seizures, difficulty with speech and memory along with loss of reflexes and numbness and tingling by the time I was diagnosed. I did heal pretty much fully although I do have some permanent damage to my right side. Nothing to bad though considering how badly I was impacted by diagnosis.

[Ellette]

Thank you for the replies. So I should make an appointment with my GP then eh? Load up on gluten for a few days to undo any good I might have done (yay one last time for, Panang curry at my favourite Thai restaurant, and I could meet up with my friend for our traditional after Christmas stress has worn off soup salad and bread sticks at Olive Garden ). My neuro said that she's had a few patients who went off gluten and felt better, but because their bloodwork came back negative they went back on gluten so she just doesn't bother recommending the testing anymore because she doesn't trust it and feels something must be inherently wrong with it.

I think I am just so scared. I have had too many days where I had to crawl to get places because my seizures were coming in such strong waves so often that it made walking impossible. I have never lost consciousness thankfully, and I can always tell when I'm going to be having a bad day (auras and all), so I can function normally most of the time. I remember once though where I had to slide down the stairs on my hind end holding my son (who was about 2 months old then but is now 9 1/2) because I had to get to the phone since I couldn't walk and I was home alone. My tinnitus has been getting worse and now I have to be on sleeping medication because I was averaging 1-1 1/2 hours of sleep a night for almost 2 weeks and my husband had to ban me from driving and even had to stay home from a business trip that was planned weeks in advance. Celiac sounds like such a lifesaver to me that if I don't have it, I just don't like to think about that option because it means more and more years of the unknown. I am scared to get the testing done and have it tell me I don't have it. I'm tired of being told I'm weird and just helping specialists buy bigger boats. I would like to have something that I can do to stop what is going on with me. Even my epilepsy is weird.

Heck, back in university I was called a "hypochondriac in denial" because I was always sick but refused to go to the doctor and kept saying that I was fine. I was used to it and felt it was normal for me. Things like having to pause and cough to get my heart rhythm back the way it should be because it was out of sync and hurt scared people around me but not me. There was the one time I went to the ER because my cornea blistered for no reason, but other than that...I avoided the doctors like the plague.

Like I said though, I'm scared to take the testing especially after my neuro said she's had patients get negative results even if they responded. Because of all the weird things that have gone wrong with me, I have always worried that people will think I'm a hypochondriac (thankfully everything is real...EEG's aren't something you can fake, things like that...plus, I still avoid the doctor as much as possible). I don't like the thought of asking for tests that I am actually hoping will come out positive because I feel like it is bad to be hoping I have something, but the thought that having something which would explain pretty much every health problem I've had my whole stinkin' life is more than I can think about without getting a bit excited. I'm just tired of being weird. *sigh*

[Ellette]

I've had numerous MRI's ever since I started with this back in 1999. A few years ago they noticed some brain deterioration and what they think is calcification. *cry* It isn't severe, but I do have noticeable short term memory loss and if my husband doesn't hand me my seizure medication it is quite likely I will forget to take it, which means I end up having seizures, which probably means my brain suffers and gets worse. For about 4 months this year he was having to spend every other week in Texas while working on a big project (he's a computer nerd) so we think that is why I recently had such a bad spell and had to have one of my meds doubled to make up for how bad my seizures got.

I actually used to be quite smart. My IQ was at about genius level. I took 2nd place in a multi state competition for pre-calc with a boy in my class taking 1st. I was in Japanese and getting better grades than students who had lived in Japan while in the military or who had taken 4 years in high school though I had never taken it before. I learned Pi out to 50 digits for the heck of it. I almost never had to use a dictionary because I could spell like anything. I'm not bragging, just stating fact. Now, I have a hard time not double checking when correcting my son's spelling words for his 4th grade tests because I'm not certain of some of them. I'm a photographer but every time I take a picture I have to guess at what my settings are because I can no longer remember where to go from the "sunny 16 rule". I can get there eventually, but it takes fiddling. My brain is no longer mine. At the beginning of all of this they thought I had a tumor, MS, Lupus, poor circulation to the brain, a weird variant of Menieres, a couple other things I can no longer remember. I've had so many tests I can't remember. I've had tons of EEG's, only one came back showing seizure activity, but that one apparently showed "weird seizures" and that neuro (not the one I have now) stayed after hours and had his colleague look at it as they spread the hard copy on the floor the whole length of the hall and walked up and down looking at it.

My speech has been mucked up a bit with this too, especially when I'm having a seizure, and my vision tends to go wonky too. After a seizure I will sometimes get postictal headaches that are called "suicide headaches" because apparently they are bad enough that they have caused them for some people. I just lock myself in my room and pretend I live alone in spite of my husband and 2 kids. It can take 2 days for them to go away completely, but eventually they do and I can function again.

The one positive thing you can say about me, I keep doctors thinking. My husband has told me that I won't be able to donate my organs because of the lemon law but that scientists will fight for me. I've dissected 2 cadavers and I'm not sure I want to go that way.

Has your neuro done an MRI? Brain lesions called UBOs or unidentified bright objects are often found with those that have neurological impact and are diagnostic of antibodies attacking the brain. Unfortunately my neuro didn't know that so thought I had MS.

As the others have said ask for a celiac panel before you go gluten free and if you choose to do an endo keep eating gluten until that is done. Some doctors are now skipping the endo though if blood work is positive.

Both endo and blood do have fairly high rates of false negatives though so do try the diet even if they are negative.

Neuro issues usually take longer to heal than gut symptoms but they can heal. I could barely walk, was having atypical seizures, difficulty with speech and memory along with loss of reflexes and numbness and tingling by the time I was diagnosed. I did heal pretty much fully although I do have some permanent damage to my right side. Nothing to bad though considering how badly I was impacted by diagnosis.

[ravenwoodglass]

Don't be afraid of the testing because of the chance of a negative. Even with negative testing once it is done you can start the diet and see if it helps. If you don't want the testing that choice is yours. It sounds like your neuro is a good one and if you need for some reason to have a formal diagnosis in your record, like to get your children screened, the doctor will give it to you. I can't be positive about this but it seems that those of us with neuro issues have a higher rate of false negatives. I know that was certainly my case. It sounds like what you may be dealing with is gluten ataxia. I am all too familiar with it. It did take a few months but within six months I went from needing canes to walk without falling over to be able to run up stairs. I hope you get relief quickly but be patient if it takes a while. Sublingual B12 can be helpful in healing our nervous system. It is a water soluable vitamin so you don't have to worry about the high dose as any your body doesn't need will be excreted.

Hang in there. Ask any questions you need to and when you do the diet be very strict.

[Skylark]

Your neurologist is absolutely right that the tests are unreliable. They look in your blood for a problem located in your brain and gut BUT they work in some people. If you get a positive you have firm answers, which is really nice. One thing to be sure to ask for is anti-gliadin. It's considered "outdated" for celiac but in the gluten-caused neurological syndromes it might be the only test that comes up positive. If you get a negative, you've lost nothing but a little time, and you can go gluten-free right away.

I really, really hope the diet helps you. Your seizures sound unbearable.

[rosetapper23]

Thank goodness you have a great neurologist! At a conference I attended last June, I learned that celiac is now considered a neurological disease and that gluten acts like a neurotoxin on the brains of people with celiac. It can cause memory disorders, learning disorders, seizures, neuropathy, ADHD, depression, and even schizophrenia. Gluten reduces the blood flow to the frontal lobes of the brain and can cause plaques to form throughout the brain.

The symptoms you've described sound like symptoms of nutritional deficiencies. Please take a look at the following list of symptoms to see if any seem familiar to you (please note that both dizziness and tinnitus can occur with Manganese deficiency, and you also show symptoms of Magnesium deficiency):

Open Original Shared Link

If you suspect that you might be nutrient deficient, ask your doctor to test you. However, most people ARE deficient in magnesium and it isn't harmful to begin taking it. If you decide to take Manganese, the best type is the chelated form.

Good luck!

[Takala]

Wish my ex- neurologist had been this smart.

Instead kept insisting throughout a year of drawn out tests that my diet had absolutely nothing to do with any of my symptoms, in spite of the fact that I had already trialed a grain free diet and had gotten a great lessening of some of the worst of it. The finale was when she lied to me, to my face, about some test results that she did not know I had gotten from her office already when she had canceled an appointment earlier.

Brain scan showed "bright spots". These are typical of gluten intolerance. I asked what caused them and what the specific side effects were. I also had stenosis of my c- spine which was impinging nerves, which I'd had for decades, which I had told them repeatedly about, which they didn't believe. (hello, bone loss from malnutrition and arthritis, which I had been diagnosed with back in the eighties). I know she had that test report right in the folder, because I had gotten it earlier, too, by wrangling with the office after checking with the scanning lab. She insulted me and walked out of the room. How about that. So much for the It's All In Your Head theory. Well, it was, but not in the way she meant it.

I have regained, after 7+ years on a gluten free diet, much to my surprise, some of the color vision I was starting to lose. I also am not night blind anymore, and can see to drive at night. I have pretty much gotten over the ataxia other than there is some lingering damage from my messed up neck that will always be with me, but I can balance well enough that I can pass for normal, but I have to really concentrate and work on exercises a lot. I still have some tinnitus and some hearing loss, but I'm aging. At least my eyes are not doing that "flicking motion" thing anymore that made the room move. I don't get infections constantly anymore, I'm not anemic, I don't bruise as easily. The constant numbness/tingling went away in my hands, after about 3 years on the diet, and this past year I got most of the feeling back in my feet.

I felt pretty much "better" very fast because I had gone whole hog onto a version of the SCD diet, minus the yogurt and dairy at first, and that had tamped down the arthritis flares pretty quickly. I mean, I still didn't feel normal, but between that and not getting sick all the time, that was a start.

Keep in mind that not everyone who has the neurological form of gluten intolerance will have it show up on the blood panels. Some doctors will not then take the symptoms seriously.

read here: Open Original Shared Link Use This To Link To Spam.com/?Brain-And-Neurological-Problems-Affect-Almost-Half-Of-Celiacs-Even-With-A-Gluten-Free-Diet&id=904155

Open Original Shared Link Sensitivity to Gluten may result in Neurological dysfunction

Open Original Shared Link Study Supports Gluten Free Diet in Potential Celiac Disease Patients

Open Original Shared Link Gluten intolerance in Finland has doubled - criteria for diagnosis needs to be rewritten

3/5/10 According to M

[ravenwoodglass]

I actually used to be quite smart. My IQ was at about genius level. I took 2nd place in a multi state competition for pre-calc with a boy in my class taking 1st. I was in Japanese and getting better grades than students who had lived in Japan while in the military or who had taken 4 years in high school though I had never taken it before. I learned Pi out to 50 digits for the heck of it. I almost never had to use a dictionary because I could spell like anything. I'm not bragging, just stating fact. Now, I have a hard time not double checking when correcting my son's spelling words for his 4th grade tests because I'm not certain of some of them. I'm a photographer but every time I take a picture I have to guess at what my settings are because I can no longer remember where to go from the "sunny 16 rule". I can get there eventually, but it takes fiddling. My brain is no longer mine.

I also went through this. I had a genius level IQ on a test done as a teen. I was an avid reader as a child and they let me into the library's adult room at 9 where I would take out books on everything from art to vet medicine. By the time I was diagnosed I couldn't even read or add a row of numbers with over 2 numbers.

I had to stop college 1 semester short of my dual degree because I was so sick. I had been on dean's list and was awarded a full scholarship to a good local college. This year I finally got the courage to go back and finish that degree. I just graduated last month with a 4.0 in all classes. I know how you feel about 'my brain isn't mine anymore' and my selfesteem really had taken a hit. If gluten is the issue it can come back. It does take time though.

[Skylark]

I actually used to be quite smart. My IQ was at about genius level. I took 2nd place in a multi state competition for pre-calc with a boy in my class taking 1st. I was in Japanese and getting better grades than students who had lived in Japan while in the military or who had taken 4 years in high school though I had never taken it before. I learned Pi out to 50 digits for the heck of it. I almost never had to use a dictionary because I could spell like anything. I'm not bragging, just stating fact. Now, I have a hard time not double checking when correcting my son's spelling words for his 4th grade tests because I'm not certain of some of them. I'm a photographer but every time I take a picture I have to guess at what my settings are because I can no longer remember where to go from the "sunny 16 rule". I can get there eventually, but it takes fiddling. My brain is no longer mine.

I went through this too. I almost failed out of my doctoral program because I crashed and burned in differential equations. I just couldn't think clearly enough to get through the algebra without making mistakes. Fortunately, I figured out the gluten problem partway through school. I took a year-long leave of absence and went back with a much more functional mind!