Md Reccomended Testing For Celiac

[haleym]

Hello!

I was having my check up yesterday and to my suprise my MD ordered a celiac blood screening! I 23 and have an enlarged thyroid, have lost about 10 lbs mysteriously in the last month or so and have had a lot of tiredness and lethargy and hives (and bad adult acne) steadily getting worse for the last couple of months to year. Ive wondered about gluten intolerance before but never really brough it up, so it was a suprise to hear that. I have now read that it is like pulling teeth to get some doctors to even consider it, so I am considering myself pretty lucky to have an MD who actually knows about this. I guess she has a couple of people who have 'sprue' as she called it.

So IF the blood test comes back positive, what next? Will I then go in for an endoscopy to check for anything else? Is the gluten free diet hard...? And does anyone know of a good internist in Western Washington State who knows about any of this stuff?

Sorry... its just the gravity of a possible diagnosis that is making me worried... I have 2 friends who had a hard time with Celiac so their experiences are making me hope and pray that I can have a knowledgeable team of professionals to help me sort this out, no matter what happens. Any pieces of advice or wisdom? Nuggets?

[rinne]

Hi.

Do your own research, investigate every medication and test offered, learn to read the test results and what they mean. You can always bring questions here, many are very knowledgeable and willing to help.

Study your body's reactions to different foods, make feeling good a priority, and most important trust yourself.

A celiac diagnosis can be elusive, the blood work is often wrong and the endoscopy is most effective once you have damaged your intestines to the third stage out of four possible stages of destruction of the villi, at the fourth stage sometimes they just never heal.

You are fortunate that you are young and by changing your diet now will save yourself future misery, believe me I know.

I have had problems with bread since I was in my mid teens and at your age worked in a bakery, that's when I began having vicious migraines, it never even occurred to me there was a connection but now I know there was. That was thirty years ago and I won't bore you with the long list of misery that came after that.

[pele]

I also had an enlarging thyroid, lethargy and fatigue when in my twenties. I also had serious skin conditions. No one ever suggested a celiac test. Here I am, 30 years later, trying to get well after self-diagnosing two years ago.

Everything Rinne says is true. If you have a gluten problem and keep eating it, you will be very sorry. It sounds like you already have a doctor who is a lot more on the ball than any doctor I ever went to.

Something to keep in mind: the celiac blood test measures antibodies in the blood, indicating that they have leaked out of the gut into the bloodstream. There is a very high rate of false negatives, that means the tests often miss the antibodies. Even the so-called latest and best test missed 25-35% of the time according to a study at the Mayo Clinic. Here is a link to that study:

Open Original Shared Link

Eating gluten-free is easy and wonderful, IMO. Beats feeling like c*** all the time. And going gluten-free now may save your thyroid. Celiac is actually a good thing to have because you can treat it with diet, no need for drugs or surgery. Instead of feeling you are diseased, think of it as your human body's natural reaction to an unnatural substance: hybridized, genetically modified, chemicalized, refined wheat.