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Newbie With Some Questions

PurelyCanadian

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PurelyCanadian Newbie
PurelyCanadian
Posted

Hello all you kind folk. I found you today and hope that you might be able to point me in the right direction.

I have not been feeling 'well' for years and I have been going from doctor to doctor to doctor for years trying to find out what is wrong with me. After many tests and blood work, I have been given various diagnoses over the years such as 'stress', 'panic attacks', and my all time favorite 'it's all in your head'. My doctor won't take me seriously and insists that I am having panic attacks. He is trying to get me to take paxil, which I refuse to do. I disagree with his diagnosis as I do not have a sensation of impending doom or panic.

When I say I haven't felt well, here is what I mean. After eating, usually 30 minutes to an hour afterwards, I get a weird (not well) feeling in my stomache and feel as though I am shaking on the inside of my body. I can't see the shaking taking place on the outside of my body but I can definitely feel it on the inside. Along with the shaking, I experience more headaches than usual, brain fog, some lightheadedness, and a general feeling of weakness. I have lost 25lbs since Christmas because I am becoming afraid to eat. I don't like the nasty, sickly, shaking feeling.

Would these symptoms be typical of a celiac patient?

I notice that this shaking/not well feeling is much, much worse after consuming bread or pasta. While on vacation three months ago I ate dinner at the most amazing italian restaurant (loads of bread and pasta) and an hour after I left I felt like I was going to die. I had major shaking on the inside and I felt like I was going to pass out (everything was going black around me). I don't generally eat pasta in my diet so could consuming a HEAPING plate full cause this kind of reaction?

I sincerely apologize for my lengthy post. I just want to know if I could be on the right track. I would sincerely appreciate any advice or information you may have.

Cheers!

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MELINE Enthusiast
MELINE
Posted

Welcome!!

Well I don't know if shaking is typical. I never had it/heard it. Maybe someone else can help you in this. But the general feeling of not feeling well is typical. Still this doesn't mean you are celiac. Have you checked your blood sugar? Have you done any blood tests? Is it very difficult for you to have a blood test for celiac and a biopsy? If there is no way you can do these tests (they are expensive, I know..) maybe you could try to exclude gluten from your diet and see how it works (don't do that gluten free diet if there is a possibility to have the tests for celiac cuz the results will be false)

Hope I helped. Ask anything you want.

Meline

PurelyCanadian Newbie
PurelyCanadian
Posted
  • Author
Welcome!!

Well I don't know if shaking is typical. I never had it/heard it. Maybe someone else can help you in this. But the general feeling of not feeling well is typical. Still this doesn't mean you are celiac. Have you checked your blood sugar? Have you done any blood tests? Is it very difficult for you to have a blood test for celiac and a biopsy? If there is no way you can do these tests (they are expensive, I know..) maybe you could try to exclude gluten from your diet and see how it works (don't do that gluten free diet if there is a possibility to have the tests for celiac cuz the results will be false)

Hope I helped. Ask anything you want.

Meline

Hi there, Meline

I have had my blood sugar tested on multiple ocassions and it was normal each and every time. I haven't yet talked to my doctor about my suspicions about being gluten intolerant so, no, I haven't yet had any blood work specifically for celiac. I think I will try to do a gluten free diet for a few weeks and see how I feel. I had a completely gluten free dinner tonight (whole foods only) and wow, no shakes! Of course I still don't feel well but having no shakes for a change was awesome!

If anyone else has anything to share, I'd love to hear from you :)

Lisa Mentor
Lisa
Posted

If you have any intent to be tested for Celiac, DO NOT Begin a gltuen free diet, it may not be as accurate. You may have some food allergies or sensitivities and not specifically Celiac.

MELINE Enthusiast
MELINE
Posted
If you have any intent to be tested for Celiac, DO NOT Begin a gltuen free diet, it may not be as accurate. You may have some food allergies or sensitivities and not specifically Celiac.

Yes. Dont' start it. Have the test first.

veggienft Rookie
veggienft
Posted

You have it correct.

The question before you is, will refraining from ingesting gluten stop your symptoms. Your answer will be:

* I don't get sick when I don't eat gluten

* Eating gluten makes no difference

You can get tested for celiac disease. If the test comes back positive, then you'll have a name associated with "I don't get sick when I don't eat gluten". If the test comes back negative, you could still have a celiac-related disease. False negatives are roughly as common as correct diagnoses.

A negative test result will likely convince you not to try a gluten-free diet. If you have a celiac-related disease, then that's a disaster.

Currently, by orders of magnitude, the best diagnosis comes from trying a gluten-free diet. Many doctors recognize this fact and test exclusively with the diet.

If you need a paper diagnosis so that you can show it to someone, then delay the diet until after the test. If you want to know if you have celiac, or a celiac-related disease, try the diet.

..

glutenfreedom Newbie
glutenfreedom
Posted
Hello all you kind folk. I found you today and hope that you might be able to point me in the right direction.

I have not been feeling 'well' for years and I have been going from doctor to doctor to doctor for years trying to find out what is wrong with me. After many tests and blood work, I have been given various diagnoses over the years such as 'stress', 'panic attacks', and my all time favorite 'it's all in your head'. My doctor won't take me seriously and insists that I am having panic attacks. He is trying to get me to take paxil, which I refuse to do. I disagree with his diagnosis as I do not have a sensation of impending doom or panic.

When I say I haven't felt well, here is what I mean. After eating, usually 30 minutes to an hour afterwards, I get a weird (not well) feeling in my stomache and feel as though I am shaking on the inside of my body. I can't see the shaking taking place on the outside of my body but I can definitely feel it on the inside. Along with the shaking, I experience more headaches than usual, brain fog, some lightheadedness, and a general feeling of weakness. I have lost 25lbs since Christmas because I am becoming afraid to eat. I don't like the nasty, sickly, shaking feeling.

Would these symptoms be typical of a celiac patient?

I notice that this shaking/not well feeling is much, much worse after consuming bread or pasta. While on vacation three months ago I ate dinner at the most amazing italian restaurant (loads of bread and pasta) and an hour after I left I felt like I was going to die. I had major shaking on the inside and I felt like I was going to pass out (everything was going black around me). I don't generally eat pasta in my diet so could consuming a HEAPING plate full cause this kind of reaction?

I sincerely apologize for my lengthy post. I just want to know if I could be on the right track. I would sincerely appreciate any advice or information you may have.

Cheers!

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glutenfreedom Newbie
glutenfreedom
Posted

Hello, Newbie,

Quite a problem you have there. My symptoms were not that different from yours. I am a biopsy-diagnosed celiac. It's been 6 yrs. But that does not mean you are celiac. The Canadian Celiac Assoc. might be helpful for you and ask for the name of a Dr. who is really familiar with celiac disease. Many doctors are still not astute at diagnosing this disease. You need to get on this asap because you are suffering from an illness of some kind, I believe. There can be secondary problems if it goes on too long. Am I correct in thinking you implied that your iron, folate and B12 levels are all at a healthy level ? None of mine were for 6 years before the diagnosis, yet, you can have healthy blood and still be celiac. What can I say the disease is fifferent in everyone ! However, that is the need for scientific investigation. Very best of good luck to you in your search.

May you solve your problem, shortly.

glutenfreedom

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