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Diagnostic Methods And Second Opinions

GFG

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GFG Newbie
GFG
Posted

Hi,

I was recently diagnosed with Celiac via an Enterolab gene and stool test. It showed I have both a gene and the physical manifestations through the stool results. At this point my only symptom has been fatigue but the demands of my life (won't bore you here) could provide reason for that alone.

I'm working with a nutritionist and MD who encouraged the testing based on other bloodwork and their suspicions. After getting the results I have begun a gluten free diet and cow dairy free as a casein intolerance was also indicated (again, I've never had any symptoms of that).

Subsequently we've had our children tested through the same means and their results came back today that they both have a gene and the manifestation (though no symptoms that are obvious).

Since discovering I have it I've been a total research fiend reading books, GlutenFree living magazine, Living Without magazine, this website, etc. The Enterolab methods are never mentioned; usually a biopsy is used. I also tested negative on the blood test for Celiac (which I've heard can be a false negative).

I'm feeling overwhelmed about starting my 2 yr old and 6 yr old on this path without feeling more confident about the diagnosis. I'd greatly welcome feedback on the integrity of Enterlabs method of diagnosis, as well as what I might do as a validating or second opinion for myself and my children. If it's the right thing I'll go down the path willingly but would feel better with a second opinion and feedback about Enterolab. Is there another lab to have the same tests done?

Thanks for any help! Toni

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Carriefaith Enthusiast
Carriefaith
Posted

I personally have not had tests done with enterolab since I was diagnosed through positive bloodwork and biopsy. I think that enterlab is reliable. If you have the gene for celiac and positive gluten sensitivity result from enterolab than you should definiately be on the gluten-free diet; however, you could also get the celiac blood panel and see if these results are consistant with the enterolab results. Just make sure you are eating gluten until the tests because you could get fasle negative results.

Some people with celiac disease have no symptoms at all and still have intestinal damage. I actually know someone whose only symptoms of celiac were anemia, fatigue, and low energy. If you indeed have celiac, than you are at a higher risk for conditions such as cancer, osteoporosis, infertility, seizures, ect.

I know the diet seems overwhelming at first, and it is... but it gets better with time and we all can help give you suggestions to make meal time better for your kids. I am both gluten free and dairy free and don't mind it. Once you know what you can/can't have grocery shopping and cooking becomes a lot faster and less stressful.

BTW - always feel welcome to ask any questions about the diet or anything else and we will do our best to help :)

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KaitiUSA Enthusiast
KaitiUSA
Posted

The Enterolab is the up and coming thing in my opinion. Some doctors now accept it but others do not.

Blood tests are very accurate, depending on which one you get done.

The tTG test is getting ready to take the place of biopsies for diagnosis in kids.

Biopsies can have false negatives to...in my opinion the blood tests are better.

My doctor did not bother doing a biopsy because I not only had a main gene but my tests were so high that he had no doubt that it was celiac.

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GFG Newbie
GFG
  • Author
Posted
The Enterolab is the up and coming thing in my opinion. Some doctors now accept it but others do not.

Blood tests are very accurate, depending on which one you get done.

The tTG test is getting ready to take the place of biopsies for diagnosis in kids.

Biopsies can have false negatives to...in my opinion the blood tests are better.

My doctor did not bother doing a biopsy because I not only had a main gene but my tests were so high that he had no doubt that it was celiac.

Thanks Kati; could you tell me what the tTG test is exactly? Is that what they do at Enterolab or a different test? If a different test do you know how it's administered (I looked it up online but it didn't indicate if it's a blood test, stool test, etc). Thanks so much !

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KaitiUSA Enthusiast
KaitiUSA
Posted

This is the complete panel that is very efficient in testing.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG test they do also do in Enterolab but it is by stool sample. The panel above is bloodwork

If you are gluten free it can make test results inaccurate so keep that in mind.

I think the Enterolab is a really good test too.

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drewsant Rookie
drewsant
Posted

I have a question about these tests. It's been stated that if you have been gluten-free, then the blood tests will come back negative. I've been on the gluten-free diet for about 3 weeks, and had blood work done last Monday. I know I've screwed up along the way, but I would say about 95% gluten-free. I guess my question is, with the maybe 5% I've eaten with gluten in this time period, would that be enough to show a positive on the blood tests if I have it?

I am feeling much better as far as the stomach goes. Since I haven't gotten a definitive diagnosis, yesterday I decided to test myself to see what would happen. I ate a Chicken Whopper from Burger King last night. This afternoon, I've made like 5 trips to the bathroom in 2 hours. I have a feeling it is Celiac. Although about 3 nights ago, I drank something with alcohol, that at the time, I didn't know had wheat in it--was clear, and looked distilled. So I thought that might make me sick, but it didn't seem to.

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KaitiUSA Enthusiast
KaitiUSA
Posted
I have a question about these tests. It's been stated that if you have been gluten-free, then the blood tests will come back negative. I've been on the gluten-free diet for about 3 weeks, and had blood work done last Monday. I know I've screwed up along the way, but I would say about 95% gluten-free. I guess my question is, with the maybe 5% I've eaten with gluten in this time period, would that be enough to show a positive on the blood tests if I have it?

It could mess tests up. You should be on gluten for 3 months prior to testing with eating about equal to 3 pieces of bread every day.

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