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If You Follow The Gluten-free Diet Why Is It Important To Get Tested?

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Please forgive me if I sound naive but I have been following the diet and I do feel better. I will eat something I am not supposed to and become very sick. Then I get back on the diet and I am better.

I never intentionally take myself off the diet.

What can a doctor do for a celiac? What do the tests consist of? Can a doctor possibly make us feel better or are they just there to diagnose & hold our hand and send us home? I have serious food allergies and I also strongly believe I am a celiac w/ several food diaries to back-up this belief. I believe my son is a celic from all the symptoms he's showing.

I have been misdiagnosed by many doctors. Looking back I remember one doctor told me to take the medicine and eat a stack of pancakes every morning. I did and I was sick...very sick. I told her that I stopped taking the medicine because I was throwing up. She told me I did not eat enough pancakes and the doctor degraded, insulted me, told me I was stupid and would have to begin the medicine all over again.

Am I doing myself and my son a great injustice by not going to the doctor? Or am I saving him from the abuse of a "Practicing" doctor.

As far as I know I have two options.

1. Find an allergy specialist that deals w/ celiac patients

2. Find a gastointestinal specialist

What else is there?

I just don't want a doctor to give my son or I medicine that's going to destroy our organs and make us sick for a very long time. My father was undiagnosed and he died from pancreatic cancer. Looking back on his diet and his symptoms he had to of been a celiac. Believe me I have done a lot of research as well as disciphering my families medical history. At this point I am totally lost because I do not know what the next step should be.

Blue Eyed Vegan

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Just my own personal opinion: you can do whatever you want for yourself. You are an adult, and after all, if you can tell by how you feel, go for it. But for your child, I think it would be wise to have him see a doctor, for several reasons.

1. If he has celiac, he may have other food issues or digestion problems, as it seems a lot of celiac's do. Better to catch it now than have him be miserable even longer.

2. It will help him understand as he gets older, that there is something different about him, not just his mother's belief. They seem to disbelieve everything you say after a while!

3. It may get him some accommodation at school and at social events, if he has a diagnosis.

Again, I'm with you, when it comes to making my decisions about my health. I'm undiagnosed, but feeling 100% better on the gluten free/dairy free diet. But if it were my child involved, and I suspected the same issues, I'd take him to the doctor, as I would not be willing to take any chances.

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It's only worth taking your son to a doctor if that doctor is truly knowledgeable about celiac AND gluten intolerance.

Some people who are in the beginning stages of celiac do not have enough intestinal damage to be officially diagnosed with celiac disease, and are often told that they are "only" gluten intolerant, and can eat as much gluten as they want. Often, they end up developing multiple autoimmune diseases, some of which can be absolutely devastating, like lupus, fibromyalgia, RA, etc.

Others do not ever develop intestinal damage, but have reactions that are just as severe and potentially life-threatening as anyone with an official celiac diagnosis

Diagnosing children can be tricky, because they don't always make enough antibodies to show up as positive on the bloodwork, and sometimes don't show up on biopsy, either.

The gene tests are simply not conclusive--there ARE biopsy-diagnosed celiacs who lack the so-called "celiac genes."

If your son is still eating gluten, then I believe it would be worthwhile to find a knowledgeable doctor and get blood work (a FULL celiac panel) done ASAP. As soon as the blood work is done, I would completely remove gluten from the child's diet.

Our pediatrician approved of our taking our kids off gluten without even bloodwork, based on my own diagnosis, and based on the symptomatic history of the kids.

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I've been going the route of not needing to be officially diagnosed, too.

Yesterday I met my new doctor (my old one moved away), and she was awesome. I told her about how Celiac runs in my family and my own experiences with being gluten-free since June and what happens when I accidentally ingest gluten. She said, "Well, you probably have Celiac, but if you're already gluten-free, then there's no point in testing you. Just stick with the diet." Then she wrote "gluten-intolerant" on my chart and made a note that all my medications need to be gluten-free. I was SO afraid she was going to want me to go on a gluten challenge for an official diagnosis and I was all ready to say that I was not willing to put myself through that, but I didn't have to defend my position at all.

She also didn't seem surprised by the non-digestive symptoms that went away when I stopped eating gluten (e.g., insomnia).

How cool is that?

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