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#1 Maryw88

 
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Posted 13 April 2012 - 04:11 PM

Hello all,

I have been going it alone for about a year and a half and am hopeful this board will open me up to some support.

I have been suffering with migranes, numbness and tingling for years. A few years ago I started having stomach troubles; mainly severe gas and cramping after eating. I went to the doctor to be told it was IBS. His advice was to stop eating fruits and veggies :)

I wasn't convinced so I went to an allergist. I tested positive from a skin prick test for wheat. When I started avoiding wheat I began to feel better and became more aware of my symptoms and the reactions I was having to food. I also started to notice severe gastro reactions to barley and oats. Additionally I have found that I am lactose intolerant and soy intolerant. Soy actually causes worse gastro symptoms than gluten. I also get pretty severe acid reflux.

I then decided I would cut out gluten all together and noticed a dramatic improvement of almost all my symptoms. Gastro symptoms and nuerological symptoms are almost gone. My Vitamin b12 and Vitamin D levels are almost non existant. Sublingual tablets have helped here but I am still very run down. My doctor does not see how this could be related but I think it could be lack of absorbtion.

My biggest frustration at this point is a lack of respect or compassion from my doctors concerning my intolerances. I was actually tested recently by my physician after finally complaining enough. The results were negative which I now realize was because I have been gluten-free for over a year. I am in the process of waiting to go to the University of Chicago Celiac center to see if they can tell me I am not crazy for suspecting celiac.

Bascially I am just hoping to find out if anyone else has a similar story. Have any of you had similar symptoms? Am I crazy for feeling that Celiac is the right diagnosis here? My physicians seem to think I'm nuts but it just feels so much better to be gluten-free/soy free/ dairy free. Any advice from the board would be appreciated. Reading all your posts has really helped.
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#2 ukdan

 
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Posted 14 April 2012 - 10:27 PM

No, you're not crazy- either that or we both are! Apart from anxiety and dizziness I haven't had many neuro symptoms like yours (although those are related to celiac) but I've had all the stomach problems.

I have been similarly lumped into the 'ibs' category (pending upcoming biopsy results) but found I have been much better off gluten, dairy and soya. You may also want to look into sugars as well as fructose malabsorption may be an issue seeing as you appear to be quite sensitive at the moment.

If you feel better without it don't worry what the doctors do or don't label you with, you're not alone!
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#3 Bubba's Mom

 
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Posted 15 April 2012 - 05:31 AM

Hello all,

I have been going it alone for about a year and a half and am hopeful this board will open me up to some support.

I have been suffering with migranes, numbness and tingling for years. A few years ago I started having stomach troubles; mainly severe gas and cramping after eating. I went to the doctor to be told it was IBS. His advice was to stop eating fruits and veggies :)

I wasn't convinced so I went to an allergist. I tested positive from a skin prick test for wheat. When I started avoiding wheat I began to feel better and became more aware of my symptoms and the reactions I was having to food. I also started to notice severe gastro reactions to barley and oats. Additionally I have found that I am lactose intolerant and soy intolerant. Soy actually causes worse gastro symptoms than gluten. I also get pretty severe acid reflux.

I then decided I would cut out gluten all together and noticed a dramatic improvement of almost all my symptoms. Gastro symptoms and nuerological symptoms are almost gone. My Vitamin b12 and Vitamin D levels are almost non existant. Sublingual tablets have helped here but I am still very run down. My doctor does not see how this could be related but I think it could be lack of absorbtion.

My biggest frustration at this point is a lack of respect or compassion from my doctors concerning my intolerances. I was actually tested recently by my physician after finally complaining enough. The results were negative which I now realize was because I have been gluten-free for over a year. I am in the process of waiting to go to the University of Chicago Celiac center to see if they can tell me I am not crazy for suspecting celiac.

Bascially I am just hoping to find out if anyone else has a similar story. Have any of you had similar symptoms? Am I crazy for feeling that Celiac is the right diagnosis here? My physicians seem to think I'm nuts but it just feels so much better to be gluten-free/soy free/ dairy free. Any advice from the board would be appreciated. Reading all your posts has really helped.

Hello..and welcome!
It's very common to go unDXed or mis-DXed. They say the average prson takes around 11 years to get a correct Dx.
Like you, many Celiacs find out on their own that they're reacting to gluten. Many of us have additional intolerances.

Once you go gluten-free the tests will not detect it. The only test they can do is the genetic one, which doesn't always paint a clear picture either.

Most Dr.s think of Celiac disease as a rare thing. That's what they're taught in medical school. Add to the mix that 20-30% of us test negative in our blood work.

It's insulting to have Dr.s dismiss your symptoms or Dx. I've run across this myself. Even after getting a positive Dx for the long list of symptoms I had, my Primary care Dr. said he didn't agree with my Dx and wasn't willing to do the follow up blood tests to determine any vitamin/mineral deficiencies. I had the GI run the tests and got a new PCP. You are correct that vitamin levels get low due to malabsorption.

Stay 100% gluten-free, and stay away from your other intolerances too. You know your body better than any Dr.!
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