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Blood Tests...

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted

Hi,

I had a negative TtG last year and from what I've read that test is highly specific. I'm wondering if theres anyone who also had a negative test but actually ended up having celiac disease. Some sites say false negatives are common others say the test is 97% specific.

Thanks,

Rachel

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KaitiUSA Enthusiast
KaitiUSA
Posted

It is a very specific test but it is usually for detecting the damage in the intestines. So if it is in beginning stages it may not pick it up but the tTG is a great test. It is going to be taking the place of biopsies soon at least in kids.

If other tests came back positive then most likely there is some kind of issue with gluten going on that could possibly be the start of celiac.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Hmmm....I was tested before I really had any GI symptoms. It was a few months after the test that I really started losing weight. looking malnourished and experiencing GI problems/food intolerances. So its possible that at the time I was tested I didn't have damage just symptoms such as headaches, brain fog, etc. Could I have these symptoms before actual damage takes place?

-Rachel

Debbie-nibbles Newbie
Debbie-nibbles
Posted
Hmmm....I was tested before I really had any GI symptoms. It was a few months after the test that I really started losing weight. looking malnourished and experiencing GI problems/food intolerances.  So its possible that at the time I was tested I didn't have damage just symptoms such as headaches, brain fog, etc. Could I have these symptoms before actual damage takes place?

-Rachel

<{POST_SNAPBACK}>

Hi Rachel

My test, Ttg just came back negative, it was taken when I have been gluten free for 2 months now I'm wondering whats going on. My doctor wants to put me on on anti depressent medicine to try it for a month. Would a person have all these gluten symptoms? I have had some very terrible stress in the last couple months and have felt like this around October last year too. Maybe thats whats wrong with me. Maybe I'll go have a pizza and think about it. All I know is I don't care for this listless, don't want to do or care for anything moods.

melhopkins02 Rookie
melhopkins02
Posted
Hmmm....I was tested before I really had any GI symptoms. It was a few months after the test that I really started losing weight. looking malnourished and experiencing GI problems/food intolerances.  So its possible that at the time I was tested I didn't have damage just symptoms such as headaches, brain fog, etc. Could I have these symptoms before actual damage takes place?

-Rachel

<{POST_SNAPBACK}>

The first time I was tested, I had the same results. I was later tested and came back with positive results. My doctor said on the first visit that he really still felt like I was in the beginning stages and sure enough, I was! But I didn't find that out until later! I went on the gluten free diet and my life has changed!! I finally am feeling like a new person but I am still in the beginning stages of everything so its hard!! but def. worth it!

nikki-uk Enthusiast
nikki-uk
Posted

Hi again Rachel,

My husband had a negative (borderline) result for the tTg(He scored a 12)

However,as he was still obviously ill he had a biopsy.This showed extensive villous atrophy.

My husband is alway's referred to as an 'interesting case' by docs!(He never does anything by the book)

So,although rare-it does happen. :blink:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Thanks for you replies :)

My doctors are not supportive at all and don't seem to care that I've lost 25 lbs. so now I'm paying outta pocket for tests outside my HMO. I'm just tired of dealing with them. They also think "its all in my head" and seeing a psychiatrist will somehow cure me. Anyways I finally took thier advice and was willing to try antidepressants but the psychiatrist told me there was something clearly wrong physically and that the antidepressants werent going to solve anything. She was right.

Melhopkins, you were lucky to have a doctor who seemed to actually know what he was talking about! :)

-Rachel

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author

One more question,

I never went for my biopsy but the procedure is still available to me...I would just have to schedule it. The reason I havent is because I've been mostly gluten-free for 3 months now. I'm feeling alot better but definately not back to normal. I may have still been getting some gluten in me from supplements, etc (I was only being careful with food). Is it pretty much useless to take the test now? I'm doing Enterolab so should I just rely on those results and forget about the biopsy?

-Rachel

nikki-uk Enthusiast
nikki-uk
Posted

Rachel,you are unlikely to get a positive biopsy after three months gluten-free.You would have to do a gluten challenge.The amount of time you have to eat gluten before the biopsy would vary for different docs-but at least 6 weeks.

Of course this would mean 'poisoning' yourself for weeks.Many people on this board feel so bad when they eat gluten-they are not prepared to do a gluten challenge just to get a dx.

When you mentioned Enterolab,did you mean a 'stool test'?

KaitiUSA Enthusiast
KaitiUSA
Posted

Nikki- the Enterolab is a stool test that tests for gluten sensitivity, malabsorption, tTG,gene test(you can order through them but it is not a stool test) etc. I think it is a good test..some doctors accept the test and some do not yet.

Rachel-Being gluten free for 3 months a biopsy would not be accurate at all.

Most experts and doctors say you should be eating gluten for 3 months before blood tests or biopsies.

gf4life Enthusiast
gf4life
Posted

I was negative on the tTg test and all the other bloodtests as well.

I went gluten free since the doctor said she wouldn't do the biopsy, then she changed her mind. I scheduled the biopsy for two months later and went back on gluten. I ate *TONS* of gluten for two months, and although I got terribly ill, it was not long enough to cause damage consistent with celiac disease.

At that point I already had the Enterolab results and knew that I had the genes and the positive stool tests. So after the biopsy I went gluten-free and plan to stay that way. My GI doctor is still not supportive, but I am not doing the gluten-free diet to please any doctor, only to heal myself. It is a personal choice whether you do the biopsy or not, but I agree that after 3 months gluten-free you would have to be on gluten for a long time to hae a chance to test positive. It takes much longer to create damage that it does to heal the intestines.

And regardless of whether you have damage in your intestines or not you can still have the other symptoms. Some are caused by malnutrition from not absorbing properly, but other symptoms are acctually caused by the body attacking itself trying to fight the gluten particles. They can cause symptoms all over your body, not just GI symptoms. I had symptoms for over 25 years ( brain fog, migraines, joint pain, gas, bloating, alternating diarrhea & constipation, itchy rash that takes forever to heal, dental enamel problems, and the list goes on...) and I still didn't test positive for the blood tests. I think I messed them up by being gluten-free before I was able to convince a doctor to run them. It allowed the damage to heal and then when I went back on gluten my reaction was so much worse that I would avoid large amounts of gluten...

I do hope you get the answers you want from your Enterolab tests, but remeber it is for your benefit NOT the doctors.

God bless,

Mariann

gf4life Enthusiast
gf4life
Posted
the Enterolab is a stool test that tests for gluten sensitivity, genes, malabsorption, tTG, etc.

Actually the stool test checks for all those things, EXCEPT the genes. The gene test is done using a skin cell sample taken from the lining of the cheeks (collected using a set of swab sticks). It is a separate test and also done by a separate genetics lab. You can order it through Enterolab and the results come through them as well, but it is NOT done by stool test.

God bless,

Mariann

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Mariann,

You did a good job explaining things to me :)

I was wondering if there could be detectable damage that would show up in a biopsy even though I've been gluten-free for 3 months. I'm sure I'm not *totally* gluten-free and since I still have symptoms I thought that must mean damage. Now I understand that the symptoms can still be there due to malabsorption & the immune response to gluten.

To answer your question...Yes, I'm doing the stool test + the gene test + milk test.

Thanks,

Rachel

KaitiUSA Enthusiast
KaitiUSA
Posted

Rachel~

Let us know how the results come out. I think with the Enterolab's gene tests they also test for gluten intolerance genes(not just celiac ones). Somebody can correct me if I am wrong but that is my understanding.

gf4life Enthusiast
gf4life
Posted

Kaiti, You are correct. They also test for the genes that are not yet considered Celiac genes, but also cause gluten intolerance.

In my family we have two with Celiac genes and two with gluten intolerance genes, and although my husband is yet to be tested, he should also have the same gene combo as my middle child. Otherwise I don't see how my children could have gotten their gene combos...

God bless,

Mariann

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