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Help...neuro Symptoms & Other Food Intolerances

175comet

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175comet Rookie
175comet
Posted

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??

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Brandiwine Contributor
Brandiwine
Posted

It takes awhile for the antibodies to die off from consuming gluten. Every time I'm glutened or get CC it's like mini replay of before starting on my GFD.

I am a vegan and I have some issues with soy and onions that I now know for sure and I'm allergic to Cinnamon. So there is alot that I can't eat, everything is made from scratch I spend hours in the kitchen and although I love to cook and create new dishes I get exhausted and sometimes just don't have the time to put in! When that happens or if it seems like I'm getting CC from some where or I suspect another food sensitivity I eat simply for every meal ithe day for a week like fruit for breakfast, salad or hummus for lunch, baked potato or stir fry for dinner when I'm not having those symptoms anymore I start adding things back in.

I have learned to steer clear of processed foods all together you never know what your reacting to there is just too many ingredients. If I pick up a package and there are ingredients I can't pronounce I don't buy it. gluten-free labeling doesn't mean it's safe for Celiacs, trace gluten makes me ill.

When I get vertigo its usually from CC, it's the first sign I get from gluten. My other food allergies doesn't effect my the same way gluten does so I just have to pay real close attention to how I feel.

175comet Rookie
175comet
Posted
  • Author

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

Brandiwine Contributor
Brandiwine
Posted

CC stands for cross contamination.

Pegleg84 Collaborator
Pegleg84
Posted

Cross contamination is a constant battle. In order to be 100% gluten-free, you should have our own toaster, cutting board, collander, anything that could be contaminated with gluten. Even a crumb can cause a reaction, and for some of us even tiny traces can be an issue. 

Of course, if your elimination diet is helping, then it's quite possible that you have sensitivities/intolerances to other foods. I'm intolerant to soy, and even trace amounts can bother me.

 

What foods are you "eliminating"? Have you figured out anything that's definitely bothering you? Dairy, soy, grains, and nightshades are common culprits.

 

Glad you're starting to feel better. Good luck!

175comet Rookie
175comet
Posted
  • Author

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.

kareng Grand Master
kareng
Posted

If you are eating foods with gluten in them - like the family PB jar full of gluten bread crumbs, you won't feel good. Maybe you shouldn't be looking for more foods to cut out until you have managed to cut out alll the gluten for a few months?

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175comet Rookie
175comet
Posted
  • Author

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.

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      Contact them.
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