What To Do? My Story Thus Far

[swingerofbirches]

Hi, I'd really appreciate some advice.

I am 22. Since I was about 14 I have had anxiety/panic disorder. My Swedish grandmother who is a psychiatrist reccomended that I be tested for celiac since she thought it could be a cause of my anxiety issues.

About seven months ago, I went to be tested for celiac at my primary care physician's office. At first he said the insurance wouldn't cover a test since I didn't have any physical ailments, but they finally agreed to do it under the guise as a normal battery of blood tests for a physical.

So, I had this blood test, and I called to ask what they had found. They told me that if they hadn't called me yet it meant the results were normal. I called once again and they told me the same thing. Just to make sure I made an appointment to go over the results with the doctor. When I arrived, I realized it was the first time the doctor had looked at the results himself. And he said, oh it does look like the antigen level is above what it says it should be. But you said you have no physical symptoms, right? It must be a false positive. I explained that I had read on the Internet that people could have celiac sprue without symptoms. We went back to his personal office and he was googling all of this and saw the same thing. So he said, why not eat gluten free for a while and see what happens, it couldn't hurt. That was November 2, 2004 (I remember because it was the da of the election). So since then I have been eating gluten free..

The problem is that I get so tired of eating gluten free with such a specious diagnosis. I have heard now that the only sure fire way to diagnose celiac is with a biopsy. However, the biopsy results could come back wrong since I have been eating gluten free for a long time now.

The only other pertinent information is that my anxiety has improved, but there are many other factors, like finding a good therapist that have affected that. Also my mom has always had what she just calls a wheat allergy. I don't think she has ever been officially tested. She'll eat wheat products sometimes and just pay the price (physically, unlike me). Also, I had my sister get tested at the same time as me, and when she did her antigen levels were high too, so she started eating gluten free. We have tested to see what happens if we eat gluten. I one day ate three Krispy Kreme donuts to see what would happen and I felt no ill effects. My sister on the other hand did feel sick when she tried to re-introduce gluten.

The problem is compounded by the fact that when I tried going to a gastrointerologist, he basically did not care about my situation in that I had no maladies. He said do whatever you want.

I will keep eating gluten free if it means that it is helping my anxiety and that it will prevent things like small intestine cancer. But since I don't know it is doing that for sure I am very frustrated about limiting myself. I feel like I can't eat healthy anymore because I am not getting those great whole grains. I used to eat whole grain bread sandwiches and eat high fiber kashi cereals. And I feel like eating only corn and potato starches I am missing out on good fiber.

Thanks for any light you can shed! Sorry for being so longwinded!

[Carriefaith]

Also my mom has always had what she just calls a wheat allergy. I don't think she has ever been officially tested. She'll eat wheat products sometimes and just pay the price (physically, unlike me). Also, I had my sister get tested at the same time as me, and when she did her antigen levels were high too, so she started eating gluten free.

Do you know which test was positive for you and your sister?

I would guess that celiac disease could be in your family since your mother and sister also are showing signs of it.

Like you said, you do not need symptoms to have intestinal damage and you mentioned that your anxiety got better on the diet. Maybe anxiety is your only symptom? I know the gluten-free diet is tough but it is well worth it in the long run. And yes the diet will decrease the risk for intestinal cancer. I've read that undignosed celiacs (or those not following the diet) have a 40% increased risk of cancer.

If you are getting discouraged with the diet there are so many good suggestions for meals here on the board to help make eating fun again. And always feel welcome to ask questions!

[Jnkmnky]

Would you call the dr and get the specifice results to list here. I'm not well informed for immediate comments on the numbers, but some of the folks here are. They know exactly what they're talking about!

Is your diet limited? Or have you found all of the great gluten free products there are? Only one of my three children has celiac disease. However, we all went gluten free a few weeks ago after I read the book, Dangerous Grains. I would recommend it to you with extra enthusiasm No one in the family is missing the gluten. I've swapped out all of our reg. food with comprable gluten free food. The transition was seamless, honestly. Let me know if I can help.

[KaitiUSA]

A biopsy is only a sure thing if it comes back positive, if it comes back negative it doesn't rule out celiac even if you have been on gluten...it only says there is either damage there they did not detect or there is no damage yet.

Blood tests can diagnose you. Some are very accurate and in the future blood tests will be taking the place of biopsies. It doesn't matter if you had symptoms or not. That doctor sounds like he knows nothing about celiac. If you had elevated levels that means there is something going on.

I think you need a different doctor who knows more about celiac disease

[Merika]

Hi swingerofbirches,

It sounds like your doc knows very little of celiac, and it also seems to run in your family (or wheat allergies, which I think are related). If I go back to pre-diagnosis, and read the list of celiac symptoms, the only one I have in spades is anxiety, and that one's not even on all the symptom lists.

Truth be told, I have MANY physical symptoms, but no diahrea, gas, yadda yadda of typical "case-book" celiac stuff. The physical symptoms have gotten worse over the years, before diagnosis.

Consider yourself lucky to have been diagnosed when you were. I understand it is very hard to stick with a diet you're not sure you need. It is very unlikely to get a false positive on a blood test. False negatives are far more common.

This board is here to support you and answer questions, share experiences, and swap recipes and the like. And you can share it all with your family

I'm glad to hear your anxiety is better. I wish all psych's out there had the wisdom your grandmother does (do they teach something extra in Sweden?). I just talked with/interviewed an anxiety specialist shrink who had never heard of celiac. I was thinking, dude, you should have all your patients tested....oh well.

Nice to meet you,

Merika

[lbsteenwyk]

Have you considered being tested for the celiac genes through Enterolab? I believe you collect a swab from the inside of your cheek. It's all done via mail. If you don't have either of the celiac genes, you would know there is virtually no chance of having celiac disease. If you have the genes, then you would probably want to remain gluten-free.