Do I Need To Be Tested?

[TC63]

I just joined this forum. About 6 weeks ago I stopped eating gluten after reading a magazine article. I am 41 and have been diagnosed with Lupus and Fibromyalgia. I was taking pain pills and muscle relaxants daily and was miserable. After reading the article I thought what the heck and tried the diet. Within days my symptoms began to dissappear. I have no more headaches, muscle pain, bone pain, vision problems, teeth sensitivity, bruises, fatigue, depression, irritability, diarrhea/constipation, gas, bloating, distended abdomen, nauseau. I have been diagnosed in the past with osteopenia, leukopenia, anemia, seizures.

I went to my family doctor to see if he had any resources to help me better understand the diet. He did an anti-gliadin test and said it was normal (I had been off of gluten for 6 weeks) and he wants to send me to a gastroenterologist for a biopsy and more tests. My position is "no way am I putting a bite of gluten in my mouth"! He says he can't give me the celiac label without the tests. My question is why do I need the label or the tests? I feel fantastic now! I am figuring out the diet fine through research on the web. I am extremely motivated to eat this way the rest of my life. I have wasted 41 years been very, very ill. I don't think I could take it emotionally if I were to eat gluten and have my symptoms return.

Does anyone have any advice for what I should do? Are there any truly compelling reasons to get tested?

Thank you.

[KaitiUSA]

I personally would not get back on gluten for a test. If I have had positive results on the diet like in your case I would go with that but this is everyone's own personal decision. It depends if you want an official dignosis or not.

Well if you were off of gluten that's why it was coming back negative. Biopsies and blood tests require you to be on gluten to come back positive. You may want to look into Enterolabs. They don't require you to get back on gluten unless it has been longer then 2 years. They can do a full celiac panel through stool tests. However,this is not widely accepted by the medical community yet. Good luck

[MySuicidalTurtle]

You don't have to get tested but some people need the diagnosis like for school or work and such. If you feel fine on the diet than stick with it. There are other tests that you can do without going back on gluten. I think Enterolab is one but I am not sure.

Good luck!

[Nadtorious]

If your doctor is willing to send you to a GI, I'd try that. I'd been off gluten for 3 weeks when I was blood tested, so of course they came back negative. I started eating gluten again and within a day was back at the doctor's. He sent me to a GI and told me to "stay the he** away from gluten". Well, without even running a test at the GI's, I got diagnosed with Celiac Disease. If your GI is any good at judging the relief of your symptoms, you should hopefully get your diagnosis without any further testing. Maybe try to see a celiac specialist-he or she will have a better understanding of all the crazy symptoms we can get.

I'm glad you're feeling better! Isn't it great to finally have some answers???

Peace-

Nadia

[darlindeb25]

i do not have a dorctor diagnosis and i probably never will--i dont care--i know i cant have gluten and there is no test worth my eating gluten to have---my sister is a dr. diagnosed celiac and my father is now too--i have been sick all week because i goofed up again with soy---nope--nothing can make me go back to gluten----good luck with whatever you decided to do----deb

[Rikki Tikki]

I had a positive blood and biopsy for celiac. I had gone to the doctor about 15 years ago and he told me the blood showed a "rare" disease and he didn't think I had it. I wasted all those years thinking I had IBS and was causing it myself.

Only when I got so sick I didn't think I was going to make it any longer did I go back to the doctor. By then, they were looking for it, so three years ago I was given the diagnosis.

Would I love to be able to eat anything, you bet! Would I ever risk eating gluten, not a chance in he**.

I say if you feel better, stay off the gluten. I don't think you need the actual diagnosis and I believe to get a correct reading you would have to ingest some form of gluten. I have seen people write that they have a problem getting and keeping insurance after having the "celiac" label.

I would say literally go with your gut, if you feel better stay off gluten.

Hope this helps. You can get a lot of useful information from all of us on this site, just educate yourself and you will know what works for you. Glad you are feeling better.

be well.

Sally

[plantime]

Whether or not you get a formal diagnosis is strictly up to you. I will tell all of you this, I went and filed for disability a couple of weeks ago. Whien talking to the lady at the SSA office, she did put down Celiac on my application. She said celiac by itself would not qualify me, but since I also have a couple of other problems, the docs will look at it as a complication. Whether or not I get disability remains to be seen, but it was interesting to learn that they look at the cumulative factor. A formal diagnosis is a catch-22 situation.

[TC63]

Thank you all for your great replies!! My instinct was to skip the doctor and just stay on the diet but I wasn't sure if there was some reason, that I was unaware of, that I should get the diagnosis.

With the symptom relief I have had I have no doubt that gluten is the issue!

I could just cry that I have spent my whole life very ill and it could have all been avoided. But, I know now and I feel great!

[ideagirl]

Within days my symptoms began to dissappear. I have no more headaches, muscle pain, bone pain, vision problems, teeth sensitivity, bruises, fatigue, depression, irritability, diarrhea/constipation, gas, bloating, distended abdomen, nauseau.

With results like yours, who needs a label? I just got the blood test (results not back yet), and although my doctor doubts I'm celiac because it's rare (he thinks I have IBS, which is more common), he said... GUESS WHAT....

* Even if you're NOT celiac, you can still be gluten-intolerant;

* And EVEN if you're not gluten intolerant, if you have any digestive issues at all he said, and I quote, "The gluten free diet is the easiest on the intestines."

In other words, you don't have to be a full-blown celiac to benefit from a gluten-free diet. Your digestive system may still work a whole lot better when you avoid gluten, and as a result your whole body feels better. To understand this better, maybe a useful comparison is to people who are "insulin resistant"--that is, they aren't diabetic, but their body is acting like it has mild diabetes: it's not processing sugars and insulin normally. People who are insulin-dependent are in a gray area between "normal" and "diabetic," and they benefit from eating a diet like diabetics are supposed to eat. And some people who aren't celiac are in the gray area between "normal" and "celiac," so they benefit from the gluten-free diet celiacs are supposed to eat.

[Rikki Tikki]

Hello everyone:

I agree, just stay off the gluten. We know our bodies best and what works and what does not.

And ideagirl, please know that about 15 years ago I was told I didn't have celiac (a disease I had never heard of) because it was rare. Even though the blood test showed I did. The doctor also told me I had IBS and a lot of people on the board say many of us have IBS along with celiac. I just know I spent many years in misery, too embaressed to go back to the doctor because the symptoms were so awful and I have always been pretty modest. So here I am 5'7" and weighing about 115 pounds. I look anorexic or like a drug user, it's not fun. My body has many ailments and I am not that old.

I spent many years suffering and thinking I was allowing stress to rule me. Please listen to your body. I have heard part of the problem is so many foods are processed and our bodies cannot tolerate getting so far away from more natural foods, and that is why the number of people that have celiac are rising. Anyone have thoughts on that?

Be well everyone

Sally