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I Had To Suggest This To My Doctor?

Soonerman

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Soonerman Rookie
Soonerman
Posted

Hi, I am new to this forum and I am pretty certain that I have Celiac Disease I hope that you all can help me more than doctors have. Years of visiting doctors and various attempts at diagnosing what was wrong with me, has led me to do my own research. The only thing doctors have found is low B12, low blood pressure, glucose/diabetes test (nothing found), spastic colon... no reasons, just symptoms. And they treated the low B12 with shots, but I have always asked what is the cause of the low b12, I mean I eat well, I am a young man and I am in good shape. My most recent doctor has run out of ideas and is sending me to Chronic Fatigue Specialist.

Well I just recently researched this disease and it fits my symptoms, so I had to bring this idea to my doctors attention. She is actually pretty familiar with the disease and says that it does fit, so I wonder why it didn't cross her mind and why I would have to bring it to her attention. Is it because I am a man, I noticed that women are more likely to have this, but how unlikely is it for a man to have it?

My main question is whether the blood tests are worth it and how conclusive they are? My doctor said it might be best for me to do the gluten-free diet and forget about the tests because they may not be conclusive and the only treatment is gluten-free. So i have started the gluten-free diet, and honestly so far I do feel alot better (although I do normally have worse days than others and it has only been about 2 weeks on the gluten-free so probably too early to tell). But I would like to know if the blood test(s) are positive, is that certain and what are the best blood test(s) to do? Also if I am currently doing the gluten-free thing and they do the test, will it affect my results or will it be positive regardless?

Thanks in advance

Ryan

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Guest j_mommy
Guest j_mommy
Posted

Here is what I think :D

If you think that you will ever what a diagnosis through blood tests or a biopsy then I would do it now. Because if you start the gluten-free diet and then decide a month/year down the road you do want to go through the testing you would have to do a gluten challenge. And for me when I get glutened now after being gluten-free, the symptoms are even worse!

I personally wanted to know for sure so I had the testing done! If you are going to do that make sure they run teh full panel and take 8-10 samples atleast in teh biopsy!

Good Luck with whichever you choose!

gfpaperdoll Rookie
gfpaperdoll
Posted

or you can test thru Enterolab.com

one reason some doctors will not diagnose it is that you will then get well and not need to keep going to the doctor. You know if that doc diagnosed the 50% of her patients that probably have celiac then her practice would shrink to nothing... Also, docs are not wanting to "distress" their patients by telling them the truth, which is all the junk that they are eating everyday is slowly killing them... or not so slowly as the case may be.

Personally, if I died tomorrow I would not eat gluten today because I want to feel good every minute that I have on this planet...

mftnchn Explorer
mftnchn
Posted

The issue is that the blood tests and biopsy pick up the advanced level of damage in the intestines only. So once you go gluten free healing occurs and false negatives are the norm.

So yes, if you want a diagnosis, go back on gluten (significant amount) and do the tests now. Otherwise, sounds like you are on the right track and just stay on the diet.

BETTYBOO Newbie
BETTYBOO
Posted

You can not take the test if you are gluten free. It looks for antibodies in your blood and will not show them if you are gluten free. In England you take the blood test and then have a biopsy. I was told after I had the blood test that he was 99% certain that I had coeliac disease and then I had the biopsy and this confirmed it. In laymans terms for the biopsy there are villi in your gut that absorb vitamins. In a coeliac these get flattened and mean that you can not absorb certain vitamins. Therefore if you are on a gluten free diet the villi could possilbly have healed and then you might be tested negative. So my advice would be to carry on eating gluten but get the tests done asap. I have been gluten free for 4 years and I feel 100% better although it does take time. Good luck with your tests!

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