Reliability Of Testing

[susiek]

I read on another forum here that someone was saying that there are about 6 places in the US that can properly diagnose celiac disease through the blood test. I just had copious amounts of blood drawn and now am doubting I'll even get an accurate reading!

My lab didn't even know what vials to use...much less what the tests were for! lol

I'm getting bummed...

Of course it could be the 3 days without gluten. I'm in mourning!

[par18]

I read on another forum here that someone was saying that there are about 6 places in the US that can properly diagnose celiac disease through the blood test. I just had copious amounts of blood drawn and now am doubting I'll even get an accurate reading!

My lab didn't even know what vials to use...much less what the tests were for! lol

I'm getting bummed...

Of course it could be the 3 days without gluten. I'm in mourning!

Susie,

Did you try to get this test done on your own or were you referred to the lab by your doctor? I was Dx'd last May via biopsy and until a few days ago never had my blood tested for Celiac. My family doctor drew 2 samples and sent them to Labcor to analysis. He called me today and said the antibodies were ok but I did have one of the genetic markers. This did not surprise me as I know I have celiac disease. I was doing a follow-up after about a year on the gluten-free diet. I was pretty sure the anti-bodies were probably ok because I feel fine. My family doctor actually looked up the tests he wanted in a book to make sure the lab would test for the correct things. Have you been on the gluten-free diet? If so for how long?

Tom

[susiek]

I had the labs done through my doctor. It was a hospital lab. My dictor seems pretty well-informed about celiac, but I was concerned about the lab once I read the other comment!

I went gluten-free on Friday after my doctor's visit and the blood draw. I was eating gluten prior to the test, pretty intensely for the past few weeks.

I took the list of 5 or 6 tests I have seen here referred to as the "celiac oanel." She was requesting 2 of these and when I showed her the list, she added the others.

She said that if the tests were inconclusive she would requset the biopsy, otherwise I would be getting a referral to a dietician. I'm unsure about the biopsy because I am now off gluten--I'm concerned that that wouldn't be accurate.

[par18]

I had the labs done through my doctor. It was a hospital lab. My dictor seems pretty well-informed about celiac, but I was concerned about the lab once I read the other comment!

I went gluten-free on Friday after my doctor's visit and the blood draw. I was eating gluten prior to the test, pretty intensely for the past few weeks.

I took the list of 5 or 6 tests I have seen here referred to as the "celiac oanel." She was requesting 2 of these and when I showed her the list, she added the others.

She said that if the tests were inconclusive she would requset the biopsy, otherwise I would be getting a referral to a dietician. I'm unsure about the biopsy because I am now off gluten--I'm concerned that that wouldn't be accurate.

How did you respond to the gluten-free diet and what types of symptoms did you have?

Tom

[susiek]

Remember, I've only been gluten free since Mid Friday. I think Friday night was a wash because of all the blood they drew (they took 5 vials!) and a change in meds.

The biggest change is the absence of diarrhea. I was having D after most meals. I've had it twice since. Once because I think I got majorly glutened or at least cannot eat a pound of Italian sausage without repercussions--I ordered a gluten-free pizza and when it came realized it had a sausage "crust." It was nasty! But I ate it! I also had D today after eating taco meat on chips with some cheese--again, I think I just ate too much.

My symptoms were pretty typical of what I've read on the board. I got sick about 3 months ago. Was tested for e coli, salmonella, and parasites. Everything came back normal. Took some antibiotics and the cramping and major pain were gone, but the diarrhea stayed. Remembered about 2 weeks aho that my brother is gluten intolerant and started researching. Looking back I've had body aches and pains, foggy brain, dizziness, infertility (unexplored, just an inability to get pg in 8 years of trying), anemia.

When I saw my doc on Friday we started reviewing symptoms and realized that these have all been separate concerns through the years. I've seen the same doc for over 10 years. I've been xrayed for arthritis, tested for lupus/rheumatoid (which my sisters and mother have), questioned whether I was diabetic from the dizziness after eating (my blood sugars were actually low).

My doc said had she known about the gluten-intolerance sooner she would have requested the tests herself. I went in prepared to demand them, but she was cool and knowledgable!

[par18]

Remember, I've only been gluten free since Mid Friday. I think Friday night was a wash because of all the blood they drew (they took 5 vials!) and a change in meds.

The biggest change is the absence of diarrhea. I was having D after most meals. I've had it twice since. Once because I think I got majorly glutened or at least cannot eat a pound of Italian sausage without repercussions--I ordered a gluten-free pizza and when it came realized it had a sausage "crust." It was nasty! But I ate it! I also had D today after eating taco meat on chips with some cheese--again, I think I just ate too much.

My symptoms were pretty typical of what I've read on the board. I got sick about 3 months ago. Was tested for e coli, salmonella, and parasites. Everything came back normal. Took some antibiotics and the cramping and major pain were gone, but the diarrhea stayed. Remembered about 2 weeks aho that my brother is gluten intolerant and started researching. Looking back I've had body aches and pains, foggy brain, dizziness, infertility (unexplored, just an inability to get pg in 8 years of trying), anemia.

When I saw my doc on Friday we started reviewing symptoms and realized that these have all been separate concerns through the years. I've seen the same doc for over 10 years. I've been xrayed for arthritis, tested for lupus/rheumatoid (which my sisters and mother have), questioned whether I was diabetic from the dizziness after eating (my blood sugars were actually low).

My doc said had she known about the gluten-intolerance sooner she would have requested the tests herself. I went in prepared to demand them, but she was cool and knowledgable!

Susie,

I don't think I had anything like Italian sausage or taco meat for at least a couple on months into the gluten-free diet. I ate a lot of food early in the diet because I was so underweight. Most of it was naturally gluten free and only seasoned with salt and pepper. It would not really excite the taste buds but it was filling and I had no diarrhea after the second day on the diet. I think I ate my first meal in a resturant after almost 6 months. I eat out about once a week now. I have had no problems. I did not have any milk the first couple of weeks because I was not sure I could tolerate it but did eat sharp cheddar cheese right away. When I did introduce milk later it was ok. As far as I know I tolerate everthing except gluten. This includes nuts, shellfish, and soy among others. I don't know what you were used to eating before and how certain things may affect you now but I think I would try to keep it simple in the beginning and try to get as many symptom free days as you can and also try to keep a food log.

Tom