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Is The Frequency Of My Reaction Normal?

Flav

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Flav Newbie
Flav
Posted

Ok. Let me start by saying that i have not been diadnosed w celiacs or gluten intolerance, however i believe different. I have had all the symptoms from stomach pain, bloat, throbbing legs, nauseua, dizziness, fogginess, tingly arms etc. i started a gluten free diet almost two weeks ago now. Where i become concerned is that i had 4 good days of very little symptoms and then today i woke the the full dizziness and nauseua. I dont believe i have had any gluten and want to know if anyone ever experiences their symptoms go away and come back during their "detox" period from gluten. Im worried there can be more than a gluten intolerance and my drs disagreement and lack of interest in me having a potential gluten intolerance is starting to wear me down.

I had a colonoscopy and endoscopy back in nov when i first had bad symptoms but i came back negative for celiacs. I went a couple months without severe symptoms and didnt consider a gluten intolerance. However i had a stretch of eating wheat pasta over ten straight days foe lunch and dinner and shortly after was out of work for four days. I have self diagnosed with gluten intolerance because every symptom i had was applicable but my wave of recurring symptoms have me doubting myself and im wondering if anyone else has experienced this.

Thanks ahead of time for any responses. Im just looking for support!

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Skylark Collaborator
Skylark
Posted

My GI symptoms from gluten came and went for a couple weeks when I first went gluten-free. It took a year to actually get all my gluten-caused nutritional and psych problems settled down.

You might keep an eye on dairy and soy. I was intolerant to gluten, dairy, and soy when I first started the diet. The soy intolerance resolved, the dairy comes and goes.

Kamma Explorer
Kamma
Posted

If you're not eating whole foods (just meat, veggies, fruits) but are also including 'gluten free' processed food, please be aware that you might be reacting to the trace amounts of gluten in these products. They are formulated to have less than 20 ppm of gluten (supposed to but they sometimes have exceeded this as shown by product testing) which is a level that they have come up with as having a low to non existent effect on people with celiac.

However, if you present your gluten sensitivity primarily neurologically, you might be more sensitive and need to stay away from all processed food. Mario Hadjivassiliou recently stated in an interview that people presenting with gluten ataxia should stay away from all gluten containing products (including 'gluten free processed products) and eat whole foods.

I too present primarily with ataxia, vertigo, fatigue. I had a great couple of weeks being gluten free and then my vertigo and ataxia would flare up. It was usually after I trustingly ate a 'gluten free' processed product. So now, I'm strictly veggies, fruit and meat. I don't trust anything.

Flav Newbie
Flav
Posted
  • Author

If you're not eating whole foods (just meat, veggies, fruits) but are also including 'gluten free' processed food, please be aware that you might be reacting to the trace amounts of gluten in these products. They are formulated to have less than 20 ppm of gluten (supposed to but they sometimes have exceeded this as shown by product testing) which is a level that they have come up with as having a low to non existent effect on people with celiac.

However, if you present your gluten sensitivity primarily neurologically, you might be more sensitive and need to stay away from all processed food. Mario Hadjivassiliou recently stated in an interview that people presenting with gluten ataxia should stay away from all gluten containing products (including 'gluten free processed products) and eat whole foods.

I too present primarily with ataxia, vertigo, fatigue. I had a great couple of weeks being gluten free and then my vertigo and ataxia would flare up. It was usually after I trustingly ate a 'gluten free' processed product. So now, I'm strictly veggies, fruit and meat. I don't trust anything.

Thanks Kamma,

The only processed foods i eat right now are "gluten free" pasta from europe, gluten-free salad dressing and chex gluten free cereal with almond milk. im sketchy on the almond milk but ingredients look ok. Im actually having a neuro reaction this moment at work, but have not ate anything different than i have for last 3 days when being "normal" feeling. Im just losing my mind becuase every time i think im starting to feel better and start to believe i actually am gluten intollerant i have a set back and just want to scream. the current symptoms gave me tingly arms, hands got really cold and i thought i was gonna pass out, then quickly ate lunch consisting of rice, plain chicken and green beans and took a vitamin and the symptoms lessed but still linger.

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