175comet

I too have very similar neurological symptoms and tested negative for celiac. But I've been 95% better on the gluten free diet. I'm on an elimination diet to determine other food intolerances. What I find is that my neuro symptoms come back if I eat something I'm intolerant of. I had no ideas the nightshades were part of that (tomato, red pepper). So could there be something else in your diet that keeps the symptoms lingering?? It is a very long process figuring out the other foods, but it does work. So far I get symptoms with: prunes, vinegar, almond butter, dairy. Soy, corn, nightshades. Vertigo and tingling seem to be the most common side effects (and bloating!)

Me too!! You know it seems impossible but it can be done! I started about 2 or 3 mtgs ago. I tested out nuts and eggs and am ok with them. Here's the positive:

1) I went from 148 pds to 138 pds

2) my energy level went sky-high. I feel like I'm 20 yrs old again.

3) I've been eating really healthy so I feel more motivated to to play w my daughter and even exercise.

4) food tastes better. I'm not kidding. Last night I boiled chicken and had a plain baked potato. And I thought this was yummy! (Hey I liked Big Macs)

5) my tummy isn't ready to burst (ie no massive alien-like bloating).

6) my neurological symptoms are gone

So yeah it's a real pain in the butt and very inconvenient, but it's a lifestyle change I'm ok with.

Stay with it! You can do it!!

Never mind. I went to the walk-in clinc and he said its pleurisy.

Thanks though!

I'm not coming down with anything. But I guess you are right. I'll just have to try it again. I had an old puffer in the medicine cabinet for my daughter. I tried it and I totally felt better. I never had any other allergies, but who knows.

I've tried peanut butter twice now on my elimination diet. Seemed to cause some bloating but I wasn't sure if was carry-over from something I ate the day before.

So I tried it again today. About 30 min afterwards I noticed shortness of breath and some wheezing. Could this be the PB? It could just be something else I'm coming down with. All my other food sensitivities cause bloating and maybe some tingling / joint stiffness / vertigo (I have neurological reactions to gluten). But I've never had wheezing.

Can this happen when I've never had a problem w nuts before? Has anyone experienced this type of reaction?

I'm currently on a food elimination diet to figure out my other sensitivities/ intolerances. So far:

OK: eggs, wine

Sensitivity to: dairy, soy, red peppers), ok w corn in small amounts only, strawberries, ok w caffeine in small dosages., may have issue w banana & garlic- need to test again.

Thanks!!

Well I have been pretty good. But damn I keep forgetting the little things. Really I think it's only been 5x in 5 months that I've accidentally eaten gluten (2x at a restaurant so no more eating out).

The problem is that after going off gluten I've become so sensitive to other foods (like soy and dairy). I was really surprised about tomatoes as I had no idea they were a culprit. But after having acid reflux and heartburn so often over the last 5 yrs I just figured it was my body and not the food.

Funny you say that as I'm so sick today. Not sure if its peanut butter or cross contamination. But im thinking cross contamination bc of how i feel (& i used the family PB jar). I know for sure all my neurological symptoms are related to gluten. I also have issues with dairy, soy, night shades, strawberries and almond butter so far. Eggs and white wine are ok. But mostly I just get bloated & have heartburn w these foods.

It's such a challenge. I also wondered if there is something in the chai tea I've been drinking. It's gluten free but maybe there is a spice in it that I'm sensitive to.

I worked w a dietician to set up this diet. But we didn't talk ab spices. I've also been ok with Bob's gluten free oats. But I've been eating them every morning so maybe that's not such a good idea either.

Sorry but what is cc? Soy is definitely a prob for me too. Even strawberries gave me some bloating.

Hi!

After 2.5 years of numerous MRIs, bllod tests etc (you've heard it all before), I finally figured out my neurological symptoms (tingling, stiffness, arthrtic pain, twitching, myoclonus, vertigo) were related to gluten. 15 mths ago, I had a negative biopsy so figured it wasn't the problem. So I started eating wheat again. Then all the symptoms came back. My very good neurologist recommended going off wheat again. It's been 5 moths and I'm ab 95% better. I don't know if its celiac or gluten intolerance bc I never had the "full blood panel". According to the gasteroentologist. Sorry long story, but here is my question....

About 7 weeks ago I went on an elimination diet bc I know other food really bother me (bloating). So far I have determined: tomatoes, peppers, almond butter, red meat & dairy. I've accidentally eaten gluten 3x and I was soooooo sick. The tingling, myoclonus & vertigo came back and it felt like an alien was going to burst from my stomach. However sometimes I still get that tingly feeling on my face or vertigo even if i havnet eaten wheat (i toasted gluten free bread in our toaster and quckly learned that even crumbs really affect me). I'm wondering if this is just remnants or if other food could be causing it. It's soo hard if gutting out all the other food intolerances... And it sucks being so limited. However my energy level went from about a 3/10 to a 6/10 after going gluten free. Then I went from a 7 to a 9/10 on first 3 wks of the elimination diet!!!

Ahhhh! Thoughts??

So biopsy isn't 100%? I thought I read it was the "gold standard". Frankly that's the problem with ALL the neurological testing I've done - most are not 100% certain (eg. blood tests for Lupus, Lyme). The tests just increase or decrease the liklihood. Maybe the best bet is to go on real and true elimination diet or a raw food diet to remove ALL possible sensitivities. Then I can add back in to see what I have problems with. So I guess I moved from: newbie- stage 1 gluten-free-diet... to stage 2-super-serious-diet. Ahhh no more convenience food of any kind and no eating out!!!

In the end, even if I have another disease, a diet free of gluten and unnatural additives just might cure me anyway.

Just when you think you are going crazy, someone makes sense of your misery. Thanks for the replies. The resturant gave me ground beef with gluten free taco chips for a taco salad. But the toppings were on a buffett (grilled onions and lettuce). So either #1 something could have been contaminated or #2 there could be soy or MSG in the meat spices. I also get an immediate neurological feeling. It get a feeling of vertigo, then a muscular twitch (myoclonic twitch) then I was nausious. The bloating happens within about 20 minutes and lasts for about 3 days.

I've been so guitly of eating out over the past 3 years so I guess I just need to cut this out, at least until I know what to avoid. Thanks for the help!

Next question.... so the diet seems to be leaning towards gluten intolerance/celiac ... should I keep up the diet or go back to gluten and get a biopsy. In other words, if I have to go back on wheat to get the biopsy, is it more painful to go back on it now or in 6 mths after I'm totally free of gluten? I have neurological symptoms so I feel like I need a formal diagnosis to eliminate any other serious conditions (next neuro appt isn't until March 2012).

I'm 5 weeks into the gluten free diet but now I'm not 100% sure it's gluten that is the problem or at least the only problem. My symptoms were just neurological in nature. All neuro tests were negative so I tried gluten free simply to get healthy ... only to find out gluten might be the actual culprit. Prior to the diet, my stomach was generally ok although dairy did bloat me. NOW that I'm on the gluten free diet I get bloated at least a couple times per week. Just a tiny mistake with wheat and my stomach is super bloated, I have stomach pains as well as numbness/tingling. So I think the gluten is at least part of the problem.

Question... on a couple occasions I have been fairly positive I have NOT had gluten. In fact I had a restaurant serve me a gluten free meal ordered directly from the chef. So perhaps I have other sensitivities. But if I ate something else (suspects are, onions, garlic, msg or soy), would these items cause more neurological symptoms? Or will it only be gluten that causes the neurological symptoms? And why is it that I'm only super sensitive now to these other foods that never caused me any stomach problems before?

And how do I narrow down what my other sensitivities might be? It's so frustrating because the bloating lasts a few days. After 1 bad meal, then every meal leads to real bloating for about 3 days. So it's challenging to figure out what other foods are the problem.

Thanks! I really appreciate getting knowledge directly from the people who have experienced this.

Thanks!

Do you mind telling me what type of vitamins are you taking? I have been taking acidopholus - Ultra Flora Plus - 7.5 billion, Omega 3 oil and B6 Complex all recommended by the naturopath. However I find the plastic capsules irritate my stomach (although it could be the Vit . The very first blood test looked at my mineral/vitamin levels and I was moderatly low in B. Everything else was normal.

I

?!??! Okay, now I just read that there is a smaller $60 blood work, and a "full panel" Celaic blood work for $125. I only had the $60 one!?!?!

I only had the $60 test too. What is the $125 one and do you know if you can get it without GP's referral? Or, can a naturopath order it? I'm in Canada too. I have spent $500 on blood work for various tests (eg. lupus, lyme etc...) Makes me wonder why these types of blood tests are not covered (by OHIP in Ontario)... maybe because none are 100% accurate in terms of diagnoses? Well at least my insurance covered it.

In April this year, I started experiencing neurological symptoms including numbness/tingling, myoclonic twitching, muscle spasms, occasional trouble walking, extreme fatigue, vertigo, trouble swallowing and more. My family doctor stated all signs pointed to Multiple Sclerosis. Luckily all my tests came back negative for MS as well as Lupus, Lyme, heavy metals, etc... (tested me for about 20 different things). My neurologist was stumped. Her last round of tests included a celiac panel. Given that she hasn't called me back, I'm assuming it was negative as well.

I've been researching on the internet and read an article from a naturopath which stated celiac disease can mimic MS so closely that it should always been ruled out before a diagnosis of MS. So I decided to see a naturopath who put me on a "cleanse". This cleanse was not 100% gluten free but reduced gluten as well as dairy and sugar. In the first week ate rye toast one day and my face was numb and I was sooo bloated (looking 6 mths pregnant). The same occured with Quaker Oats and a packaged rice mix. So for the last 2 weeks I've tried to be gluten free. On Friday I ate a granola bar just to test it out. I was sooo naustious yesterday. 36 hours later and my stomach is still aching and my tingling seems worse.

My neurological symptoms are about 90% better (just some tingling), but it was getting better before I started the diet anyway. For about 6 weeks in the summer it remitted then came back in July. The symptoms remitted again in September. So I don't know for 100% sure if the diet is helping these symptoms or if it was naturally going away on its own. I've only been on the diet for 3 weeks. By the way I lost 6 pounds the first week and I only started at 148 pds. My energy is 100% better.

Interestingly, 15 years ago I went to my family doctor for extreme bloating and she brushed it off as IB. Years later I figured I had a sensitivity to lactose. So I never bothered to mention my on and off again bloating to the neurologist. I'm also of Irish decent (which I understand to be a risk factor)

I guess my questions are:

1) Can you experience an improvement in neurological symptoms this quickly into the diet?

2) Can you such an extreme reaction to accidental gluten occur only 3 weeks into it?

3) Just before I started to get neurological symptoms in April, I had gone on the Atkins diet (having put on 15pds of extra weight this year!!!). Could that reduction in carbs (particularly gluten) THEN returning to a normal diet have caused these neurological symptoms?

My first reaction to the possibility of it being celiac was AWESOME as it beats MS or Lupus etc.... But now I'm realizing this will be a HUGE challenge!!! And we are going to Disney next week! I will have to be creative!

Thanks

I too am Irish decent and have been dealing with neurological symptoms (numbness, muscle pain, twitches) without a diagnosis. My GP thought I had Multiple Sclerosis but all the tests came back negative. Negative also for Lupus, Lyme, Neurosyphllis, etc..., It only took a 6 month wait to see the neurologist to confirm this!! She sent me for the celiac panel which also came back negative. Now, I have to wait another 9 months to see a sensory neurologist.

In the meantime I decided to see a naturopath to get my diet on track. The diet is free of sugar, gluten and dairy. I've only be on the diet for 3 weeks but am feeling better. However, I did just learn though, that you have to be EXTREMELY careful about being gluten free. I don't know for sure if gluten is the culprit, but I ate some Quaker Oatmeal on Saturday and my whole body went numb (legs, arms and right down my throat). And my stomach was completely distended. Later I read online that Quaker Oats should not be considered gluten free due to contamination issues. I had the same reaction when I ate packaged flavoured rice which also had an ingredient which is not gluten free. So you have to be REALLY careful that you are eliminating gluten to test this out.

Perhaps if we have neurological symptoms we are super sensitve to even small amounts of gluten. I say do the elimination diet to find out for sure. But do it right!!! You have nothing to lose. At best, you get healthier which is going to help out whatever symptoms you have anyway.