Why Do I Need A Celiac Diagnosis?

Celiac Disease is a tricky condition. It is grossly under-diagnosed in the United States. The National Foundation for Celiac Awareness has a list of symptoms and facts about the disease that will hopefully drive more people to request the tests from their doctors. But why is it important to have a medical diagnosis?

Many people suffer for years and are mis-diagnosed with various other conditions including Chronic Fatigue Syndrome, Lactose Intolerance, Fibromyalgia, IBS, or even Cancer. When no relief comes from the various symptoms, many people look to the Internet and “self-diagnose” by cutting gluten out of their diets. Suddenly they feel fantastic and regain the health that seemed so elusive.

If they feel healthy, then what’s the problem? Perhaps nothing, but there are a few issues at work. First of all if you don’t have a medical diagnosis and there ever is a “cure” for Celiac Disease (other than eliminating gluten from the diet) your insurance won’t pay for it. Schools might not accommodate your child’s dietary needs without a medical diagnosis. Your flexible spending account won’t cover the difference in cost between gluten free and non-gluten free food items without a diagnosis. It also may become difficult at some point down the road to be truly vigilant with your diet if you aren’t 100% sure that you have the condition.

Not only is it important to have a blood test confirming if you have the antibodies, but it needs to be followed up with an endoscopy and biopsy to confirm that the intestinal villi are damaged. The key here is to keep eating gluten until the day you have the endoscopy. If you cut gluten out of your diet too soon and your intestines heal before you have the endoscopy, then you can’t be sure of your diagnosis. As someone desperate to feel better and start healing as soon as possible I too started cutting gluten out of my diet. Luckily my gastroenterologist was well-educated on Celiac disease (surprisingly many are not) and told me to keep eating gluten until the last day. My last gluten filled pizza was from an airport Sbarro (my Italian friends would be ashamed J ) then later I indulged in a big waffle cone filled with ice cream and a piece of cheesecake the night before. I figured why not go out with a bang!

The endoscopy in the morning was not nearly as uncomfortable as I had feared. It was performed in the doctor’s office under light-anesthesia. The doctor uses a scope with a small camera to look at your stomach and intestines and take the biopsy. I had my results right away; I was about to embark on a gluten free roller coaster ride. [on the plus side, the diagnosis meant I didn’t have to follow up with a colonoscopy which I understand is much more uncomfortable] I was lucky my diagnosis happened quickly by Celiac standards, only 3.5 weeks of painful unbearable symptoms. I have heard that most people suffer for an average of 4 years. Hopefully as awareness grows, that number will decrease and we can all start feeling and living well.

(Because I am not a doctor, the content on this blog is intended for informational and entertainment purposes only and should not be considered medical advice – although my father is a lawyer :) )

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Rob said,

April 6, 2007 @ 7:51 pm

Great post, there are many people I talk with who self-diagnose themselves. I was diagnosed at age 2, and did not have a biopsy until middle school. It was fun to go off diet for that month or so, but sure enough I had it.

Isn’t the genetic test ok to use with the blood test as definitive?

Catherine said,

April 6, 2007 @ 8:01 pm

Hi Rob,

I can only imagine what that month of gluten gluttony was like!

I’m not sure on the current status of the genetic test vs endoscopy. I do know that for the clinical trial that ALBA pharmaceuticals was conducting you had to have your diagnosis confirmed by endoscopy.

RickAHyatt said,

April 8, 2007 @ 3:30 am

I found out the hard way I had C’s. I’ve had the distinctive rash on my shins, especially for decades, and now realize that it first breaks out in a similar burning rash on my forehead, then a flaking on my cheeks and scalp, to be followed by the shins the next day, which linger forever.
Out the gluten, slowly my skin whitens. I note that some small inflagrance means a small outbreak, which then will fade off, but continued inflagrances gets into the big stuff, big time, like constipation, diahrea, loss of short term memory and stuff like that.
I think zinc creme helps the rash dissapate faster, what do you think?
What is a good food that would help the intestine heal faster? Cabbage? Aloe? What do you use?
Is Scotch really safe to drink?
Ever try brewing your own sorghum beer? Gin gives me a reaction, what about you?
The reason that this whole issue will never get the press that it needs is in that Celiac’s magnifies the subconcious mind’s effect over the conscious, making one especially susceptibe to hypnotic suggestion, an Intelligence Methods and Means. It’s great for the covert agents’ utilization, and Celiacs are sought out, unknowingly to themselves, for this reason.
I know: It’s been my “Undercover” career in exactly that , but NOW I’M CLEAR OF IT!!!
Thanks
Is that what is is with you folks?
I don’t visit this site often, pls email me at rickhyatt@hotmail.com

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March 11, 2008 @ 3:21 pm

[...] the ones with the most information. While my doctor was great and went through the right steps for diagnosis, I know many aren’t so lucky. Even with a great doctor, the pamphlet of diet information I [...]

» Gluten-Free at Tasti-D | A Gluten Free Guide said,

March 11, 2008 @ 9:34 pm

[...] went in for my endoscopy after eating a slice of pizza and a large Tasti-D Lite waffle cone. (For a proper diagnosis you should keep eating gluten until you have the endoscopy.) The ingredients at the time included [...]

AMac said,

November 23, 2009 @ 3:17 pm

The most important reason to get the diagnosis is because of the increased risk of cancer and lymphoma. Which is directly impacted by a vigilant diet.

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February 8, 2010 @ 12:05 am

[...] A doctor’s letter to substantiate your condition as DIAGNOSED Celiac Disease. [...]

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