Tuesday, January 5, 2010

I have not tested myself for Celiac's Disease and here's why

I have not taken any of the numerous blood tests that one can take to see if I actually have Celiac's Disease. I could have Celiac's, though I suspect I am one of the 144 million Americans who have a gluten sensitivity.

Here is the rationale behind my decision not to test.

It was my caring Ear Nose Throat (ENT) doc who suggested to me last April that I quit gluten. She knew that I was hypothyroid and that I was still suffering from fatigue and other thyroid issues. She herself stopped eating gluten and felt better than she had in years. She recommended that I read "Gluten-Free Girl," and I ordered that book the day I got home from my appointment. Then I ordered 10 more books to get up to speed on gluten and all of its evils.

One thing my ENT told me is that she wasn't getting herself tested for Celiac's because she did not have faith in the reliability of any of the current tests available. She stopped eating gluten and slowly regained her own health. I did the same.

In the Celiac community, a lot of folks consider a small intestine biopsy to be the "gold standard" test. Yet even that test can leave you wondering if you have Celiac's or not. A normal biopsy does not necessarily exclude Celiac's Disease for life.

You can see if you have genetic markers for Celiac's but many feel there are too many false positives and false negatives. You can also have "Latent Celiac's Disease" where you have a negative test that turns positive several months or years later.

So why test at all???

To me, the proof is in the gluten-free pudding (which also has no dairy, of course!). I stopped eating gluten and then dairy (and as of today no more corn) and I felt better. Day by day, I am getting stronger and wiser.

If you do stop all gluten, then you can't later take the tests.

I do have some exciting news on the testing issue. I learned just this morning from a highly reliable pharmacist that a company called Nature Source is unveiling 6 new highly sensitive tests for gluten sensitivity in June. I will wait for those and take them, even though I have quit gluten.

It is a personal decision to test or not to test. Some people want to get a definitive answer. I don't think there really is a "for sure" answer, other than that age-old answer of listening to your body. If you feel better without gluten, avoid it like the plague. Same with dairy. Same with genetically modified corn. . . .

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  1. The most important thing we can do is take control of our health. Last January my lack of wellness came to a head. I went to an applied kinesiologist because I was getting NOTHING from my MD besides "take this pill." I was frustrated, depressed, exhausted - and I had PAIN. My lower back had recently flared up for no apparent reason to the point where I was bed-ridden for 3 days. I was sensitive to the touch and thought I might have fibromyalgia because I had the symptoms. I had a series of blood tests to rule out any diseases and my "diagnosis" was allergies to wheat/gluten, corn, and dairy. I was SHOCKED, and yet it made perfect sense. The AK told me that I had been poisoning myself my entire life and I didn't even know it. My entire body was inflamed, which eventually would lead to serious disorders if I didn't change my lifestyle. He put me on a cleanse that removed the above mentioned culprits and introduced other grains, like quinoa (that I had never heard of) and fresh fruits and vegetables, lean protein, fish. I felt AMAZING. I was joyful, had lots of energy and had never felt better in my entire life. Thank you for having this blog and spreading awareness.

    Although I don't think I have celiacs disease per se, I know my body and how it responded to removing those irritants. I'm not trying to go all "Conspiracy Theory" or anything, but I do believe there is a very strong link between the medical community, pharmaceuticals, and the food industry - otherwise they would be trying a lot harder.

  2. Thanks so much for your comment! I get so mad when drs get lazy and stupid and tell their patients to "just take a pill." I am very happy to hear you found one dr who will listen and help you heal.

    I have read that the average time it takes to get a correct diagnosis for a gluten/other allergy problem is 10 years. That is sad and not acceptable!

    I haven't tried a body cleanse -- yet. I am curious about that and need to do that. So glad you are feeling better and had the guts (sorry for the gluten pun) to heal yourself! I also agree with you that there is a link between the industries. If the food keeps us all sick, the medical community and Big Pharma get to keep on making money hand over fist.

  3. I am impatient enough that I did not like the wait between taking the natural thyroid supplements and eating breakfast, but the medication, given time, worked wonders at restoring my energy and reducing many of my related symptoms. However, the medication caused a persistent, intense headache which only ceased when the medication was stopped.