So my doctor sent me for blood tests and as far as gluten and celiac are concerned, she asked only for the tTG test (in French it is a test for antibodies called "anti-transglutaminase"). She said it was the only one she needed to ask for.
is it enough? is it a good test?
and would it only be positive if I have celiac (actual tissue damage to my intestines), or would it be positive for gluten intolerance too? And then we would confirm celiac with biopsy?)?
I am confused as to what this test screens for and whether it can be negative even if one has a gluten intolerance.
It will take 3 to 4 weeks to get the results back. thanke for helping me understand better.
no, it's not enough.... false negatives run so high, it's best to get a COMPLETE panel:
TTG Igg AND Iga Antigliadin Igg AND Iga Endomysial Antibodies Total Iga Serum
My doctor would not do them (order them from the lab). she said that if more tests needed to be done, the gastroenterologist would do them. HOW does that make any sense, since she will not refer me to one UNLESS I test positive for celiac with this test?
and it is SO hard to find a doctor here.
well too bad if the test is negative I will go gluten free anyway that's all.
is there any risk to not look further into possible intestinal damage?
You at least should have also had the total IgA serum. Without that one the TTG can be false. I would ask if she can run that one as well.
1
Mommy to 2 Divas in Training
~6 yr old daughter positive Celiac blood test December 2010 (at age 4)~
~Positive Biopsy January 10, 2011~
~Gluten Free since January 11, 2011~
You at least should have also had the total IgA serum. Without that one the TTG can be false. I would ask if she can run that one as well.
It's too late now It usually takes months to see a doctor and I TRIED to tell her there wee several tests and should I get another one that tTG and she would not hear it, she said "That's the only one I give".
She's so incompetent. she had to look in her binder to remind herself what test to ask for. I'm so angry. It took me 1 hour on the bus to go to the doctor, then had to be without food for 12 hours to give the blood.
can I just go on the gluten free diet without so much worrying about test results or biopsies? is it real important to be seen frequently (to see how well the intestin heals) if you have celiac?
It's only this morning I read that Total IgA blood serum was important in case I don't have the IgA antibodies (or something like that)... Isn't the DOCTOR who shold know this stuff??
There are many people on this board who are self-diagnosed. Some of them had negative test results, some had no testing at all because no one thought to test them and they realized themselves gluten could be a problem; some of them tested negative after they had been gluten free already, sometimes because the doctors didn't know you should be eating gluten up until the time you are tested. You do not need a doctor's permission to go on the gluten free diet, and the only thing that requires monitoring on the diet are your levels of nutrients - we are commonly low in Vits. D, B12, folate, A, E and K, in iron (ferritin), calcium, zinc, potassium, magnesium. Some of these may require supplementation at prescription levels (D3, e.g.) to bring the levels back up if low.
Generally, the advantages of having a diagnosis are 1. to convince family members and friends of your need to eat gluten free, 2. if you are school or college age to force the schools to make allowances for your need to be gluten free, and possibly 3. to drive home to yourself the need to stay gluten free so you don't start doubting yourself.
I am sorry you are having so many problems getting the proper testing; rest assured your are in good company here. Most of us have been through the process of knowing more about celiac disease than the doctor.
2
Neroli
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
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Caffeine free 1973 Lactose free 1990 (Mis)diagnosed IBS, fibromyalgia '80's and '90's Diagnosed psoriatic arthritis 2004 Self-diagnosed gluten intolerant, gluten-free Nov. 2007 Soy free March 2008 Nightshade free Feb 2009 Citric acid free June 2009 Potato starch free July 2009 (Totally) corn free Nov. 2009 Legume free March 2010 Now tolerant of lactose
I can tell you my child tested negative on both the tTG and the EMA tests. She was positive on both the Deamidated Gliadin Peptide IgA and IgG. With that positive they did a biopsy and the biospy showed a positive for Celiac Disease.
I can tell you my child tested negative on both the tTG and the EMA tests. She was positive on both the Deamidated Gliadin Peptide IgA and IgG. With that positive they did a biopsy and the biospy showed a positive for Celiac Disease.
wow... thanks for sharing that! and i'm so glad you got a correct diagnosis after all. what is so scary is that some people get negative results and continue to eat gluten and be ill..
gluten sensitivity and celiac are so sneaky... and it seems so difficult to properly asses the person.
this morning my mom sent me an email where she said she thinks we are too sensitive or complain too much. I am trying to come to terms that we are NOT these things. There IS somthing wrong with our health and there IS an answer.
can I just go on the gluten free diet without so much worrying about test results or biopsies? is it real important to be seen frequently (to see how well the intestin heals) if you have celiac?
Yes you can go gluten free without positive blood or biopsies. Once you are gluten free though if you later decide you for some reason want to be tested you would then have to do a lengthy gluten challenge and you could still have negative test results. I have been diagnosed for 8 years and had a scope done 5 years after diagnosis since I had my 'over 50' colonoscopy. That endo showed I had fully healed. I've only needed to see a doctor a couple of times since diagnosis but a yearly general checkup is a good idea for anyone. I don't mainly because of a strong adversion to doctors after all they put me through in the many, many years it took me to be diagnosed and the fact that I haven't even had a cold in 8 years. It is a good idea to get screened for deficiencies and osteoporosis if your doctor will do it. You don't however need a doctors permission to live gluten free.
0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45 Blood tested and repeatedly negative Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002 Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56 Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007 HLA-DQB1 Molecular analysis, Allele 1 0303
It usually takes months to see a doctor and I TRIED to tell her there wee several tests and should I get another one that tTG and she would not hear it, she said "That's the only one I give".
