Questions From A Newbie

[Debra L]

I am very new to this board. I have never had a formal diagnosis, but my Korean thyroid doc told me I had a wheat intolerance. He did stool and salvia tests, and I cut gluten out of my diet. I started feeling so much better. I found out 2 weeks later that the tests had gotten stuck at customs and I have to repeat them. I had read that inorder to get accurate results I would need to be actively eatting gluten. I went back to my regular diet, and I feel sicker than I ever remember being before. I have Hashimoto's and Wilson's Temperature syndrome, he said that I had some kind of adrenal syndrome also. It feels like now I am sicker than before! Is this common? and can Hashimoto's be related to Celiac's? I saw that for the first time here, but I don't know much about it.....

any help is appreciated

thanks,

Deb

Daegu, SK

[Eriella]

Welcome to the board--

The best way to explain why gluten is affecting you so much more now is to think about alcohol. If you go out drinking every night for a year, you will get used to it, even though it is bad for your body and your body will be showing symptoms of being sick. When you stop drinking, your liver heals and your body goes through detox. Then, if you start drinking again, you will have lost your tolerance, so you will feel it more, and your liver will scream at you because you are making it sick again.

The same thing is happening with your small intestine. You were used to eating wheat, even though it made you sick. You stopped and started healing. Now you are interjecting this poison back into your body, and it doesn't like it and is letting you know. So yes, it is normal. So go off gluten as soon as you can, and you will start feeling better.

As far as the correlation with the other diseases-- if you have one autoimmune, you are likely to pick other ones up.

[mftnchn]

Sounds like your doctor has not done a typical celiac panel which would be blood tests. Interesting that your stool and saliva tests were being sent overseas.

I'm your neighbor, in Liaoning province of China. I figured I couldn't get accurate testing here so have just gone with a dietary approach to diagnosis.

You didn't say what your symptoms of gluten intolerance are. Can you get an intestinal biopsy done there?

[Debra L]

Sounds like your doctor has not done a typical celiac panel which would be blood tests. Interesting that your stool and saliva tests were being sent overseas.

I'm your neighbor, in Liaoning province of China. I figured I couldn't get accurate testing here so have just gone with a dietary approach to diagnosis.

You didn't say what your symptoms of gluten intolerance are. Can you get an intestinal biopsy done there?

I started by finding a doctor for Wilson's Temperature syndrome. I have all the hypothyroid symptoms with usually normal tsh (I am a mil spouse, so the docs usually just do TSH). This doctor is a Korean doctor that I am paying for out of my pocket (not covered by insurance). I thought that if I could get my temp up, I could start to not feel sick any more. I suffer from weight gain, bloating, off and on D and const. I usually have ZERO energy. I can sleep 11-12 hours at night, then take a 1-2 hour nap in the afternoon. I often suffer from a complete inability to remember things. Sometimes I forget my own name, but I thought that was because I don't speak Korean, but I try to do my best. Most of the time I felt all over sick, like I was being poisoned. I started feeling happier, better, more alive when I was off the gluten. {My Traditional Oriental Medicine doctor had told me that I should avoid wheat, but it just sounded like it was because I am over weight. She is treating me with acupuncture for my asthma. It is the best thing! No more inhaled drugs! It has stopped the every other month antibiotic cycle.} The specialist said that I was intolerant, so I figured that was more conclusive and it struck a cord. So I went to the internet and started checking it out. I don't think that I would want to get a biopsy here. I spent a week in the local hospital last year for my asthma and pneumonia, it was a very uncomfortable experience. I am leaving here in about 4 months, so I figured if I need a more conclusive diagnosis, I could get it when I go back to the US. I thought that one of the stool tests was for wheat intolerance, or possibly celiacs. My doctor speaks English, but prefers to speak to me through another person who translates. Korean culture and language is full of "understood" or implied understandings. And doctors here are still Kings. So it is difficult to get all of my questions answered.

sorry for being so long.

thanks for the reply, it actually makes perfect sense now, but I was thinking it might mean that I wasn't really having a gluten problem. I guess I am happy to know that it is 'normal'

Deb