Son Going For Follow Up- Test Question

[Sharon C.]

Hi-

My son is going back for a follow up after being diagnosed last October with Celiac. They are testing him with this same test. They are not doing a Gliadin/IgG-IgA. Just a tTG, and also thyroid function and also CBC/platlet. Is this a normal way to check to see if levels have gone down?

Also, when my son was diagnosed, I asked my doctor to screen me. He had NEVER screened anyone for gluten intolerance before. He sent me for the Gliadin IgG-IgA test but NOT the tTG. He said it "seemed" like I was negative. Is this the proper way to screen someone?

[nikki-uk]

Hi Sharon,

In answer to your question about your son-doing just a tTg test is normal to see if his level of antibodies have gone down since going gluten-free.

To gain the full facts your doctor would have done better to include a tTg test in your coeliac screen.The tTg test is only for coeliac disease(meaning it is only gluten intolerance that can give you a positive).Whereas a high IgA or IgG could point towards coeliac,but other conditions also cause raised levels

[Lesliean]

tTga misses up to 70% of celiacs so the anti-gliadin tests are very important. I am a lot less concerned about the relatively low sensitivity (being positive when you don't have it) than I am with a low sensitivity (being told you don't have it when you do) of the individual tests. The problem, as I see it, is that untill you have an advanced case with moderate to severe intestinal damage you may not show up positive on any one test. By that time you will no doubt have all sorts of medical problems and some of them are likely to not be reversable.

Autoantibodies and histogenesis of celiac disease.

OBJECTIVE: Autoantibodies are used as markers for celiac disease (celiac disease) identifying patients with mucosal lesions. The purpose of this study was to evaluate the sensitivity and role of the autoantibodies such as IgA antiendomysium (EMA), IgA antigliadin (AGA) and the IgA antitissue transglutaminase (tTGA) in histogenesis of celiac disease. METHODS: Seventy-nine cases including 30 untreated celiacs, 5 celiacs on gluten-free diet (GFD), 41 first degree relatives and 3 non-relatives suspected for celiac disease were investigated. Three untreated celiacs with IgA deficiency were excluded from this study group. IgA antibodies to tTGA were determined by ELISA, as described before. Twelve of 41 relatives and 2 cases of non relatives suspected with positive serology underwent a small intestinal biopsy. Results were correlated with the degrees of abnormality of the intestinal mucosa in patients with celiac disease. Intestinal biopsies obtained from study population were evaluated for histological quantification. RESULTS: Celiacs and suspected cases with positive EMA/AGA and or tTGA showed shorter villi (p < 0.007) and/or a higher number of intraepithelial lymphocytes (IEL) (p < 0.035). The sensitivity of serology (EMA, AGA, tTGA) in patients with Marsh IIIc was 100%. However, in patients with Marsh IIIa the sensitivity for EMA, AGA, and tTGA was 40%, 50% and 20% respectively. CONCLUSIONS: The appearance of antibodies is related to the degree of mucosal infiltration by IELs. Although tTGA, like EMA provide a highly sensitive parameter for the detection of celiacs with severe mucosal damage, it appears to be less sensitive (even less than AGA) in celiac patients with milder histopathological abnormalities. However, it should be recognized that the substantial part of the celiac population present with these milder forms of mucosal abnormalities. Using tTGA as a single test in screening may result in missing up to 60-70% of celiacs with mild mucosal abnormalities. Combination with other screening tests (at least with AGA) is essential and strongly recommended.

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[nikki-uk]

Interesting article,I didn't realise the tTg missed so many people.

I think my husband is a medical mystery!All his bloods were negative except for the tTg which was borderline.

When he had biopsy it showed extensive villous atrophy-so it doesn't necessarily correlate that high levels of antibodies means more intestinal damage.

[KaitiUSA]

tTga misses up to 70% of celiacs so the anti-gliadin tests are very important. I am a lot less concerned about the relatively low sensitivity (being positive when you don't have it) than I am with a low sensitivity (being told you don't have it when you do) of the individual tests. The problem, as I see it, is that untill you have an advanced case with moderate to severe intestinal damage you may not show up positive on any one test. By that time you will no doubt have all sorts of medical problems and some of them are likely to not be reversable.

   

   

tTG is the most specific test for celiac. The tTG and EMA are the most important, along with the total serum IgA.

The other 2 tests(IgA and IgG) are not really relied on because they can be so inaccurate

The tTG test may take the place of a biopsy in diagnosis in children in the near future. It is a very sensitive test and the probability of it being false is slim to none.

I wouldn't trust all articles that you find on the Internet. Some are accurate but I have heard up to 50% of the info on the Internet is incorrect in some way.

[celiac3270]

tTG is the most specific test for celiac. The tTG and EMA are the most important, along with the total serum IgA.

The other 2 tests(IgA and IgG) are not really relied on because they can be so inaccurate

The tTG test may take the place of a biopsy in diagnosis in children in the near future. It is a very sensitive test and the probability of it being false is slim to none.

Yes...that's what I had heard from multiple knowledgeable doctors.

The biopsy is still the gold standard, but the tTG is the best serologic test we have right now--much, much better than the Anti-Gliadin IgA and IgG, and even better and less expensive than the EMA.

[Lesliean]

I hear what you are saying. But these aren't articles on the web. They are abstracts from medical peer reviewed studies. My vote is for several tests to be done at one time and to not rely on one or two tests.

[KaitiUSA]

which medical studies? some medical people dont exactly know what they are talking about..and obviously the research has been going well with the tTG testing that they are getting ready to use it to replace biopsy for diagnosis. I mean the research all points to that test being the best blood test and highly accurate. The rate of it being false is really low...but I guess possible. I think a full panel is beneficial but I think that the tTG is really the best test of the bunch

I would like to know who wrote that abstract you are referring to:)

[key]

Not all research articles are accurate, but I disagree with one blood test being 100% accurate for diagnoses. Especially in children under 2 years old. My son has it and his ttg was normal. He only had one blood level elevated and it was least sensitive for celiac. I think there is alot they don't know yet, so I thought the article was interesting.

Monica

[KaitiUSA]

In kids under the age of 2 all of the celiac tests can be inaccurate. In other cases, I think a full panel is beneficial to get done..I never recommend just one test be done...but from info I have gathered from many knowlegable doctors and many reliable articles it shows that the tTG is the best test for detecting the disease...

[Lesliean]

Kaiti,

When people ask for what tests to be done I always wait for your answer. You put a great panel of tests up with clear guidance. The study link for my first post was on the post and here is the header to it that I did leave off: Rom J Gastroenterol. 2003 Jun;12(2):101-6. I brought this abstract in to show my specialist and he was very impressed by it.

Autoantibodies and histogenesis of celiac disease.

Rostami K, Mulder CJ, Stapel S, von Blomberg BM, Kerckhaert J, Meijer JW, Pena SA, Heymans HS.

Department of Gastroenterology Withybush General Hospital, Pembrokeshire, Haverfordwest, UK. krostami@hotmail.com. (see weblink in above posting)

In America we miss diagnosing most celiacs (studies show 1/133). I agree that the tTga is the best test currently to specifically diagnose celiac disease, but this study (as well as a few more recent ones I have read recently) are finding a coorelation between tTga's being positive and the amount of villi damage. They conclude the moderate and mild early cases will be missed (till later) and they recommend keeping AGA and AGG to help pick up those cases.

I like to see blood work used without biopsy. I just recommend a complete panel including tTga and AGA and AGG. This seems in line with your recommendations to people who write in.

[KaitiUSA]

Leslie-yep,I agree the full panel is definitely the way to go. I never recommend one test..its just to risky that way in my opinion

Thanks for posting the source of that info as well...I like to learn all views

[anniej55]

Kaiti,

I am so confused ... and if you don't me asking, how old are you? I can't figure it from the picture. You are so knowledgeable!

I never had the ttg test, but was diagnosed with the Iga and IGg. So now I'm wondering if I do have celiacs .... and to make it even tougher, I'm having a very difficult time staying away from the forbidden foods. Up until this week my life was wrapped up with school (I'm a middle school librarian) and medical tests (biopsy, colonoscopy, etc). Now that I have "down" time I find myself VERY angry that I cannot eat what I want to eat and very sad. Even though all the tests came back great ....

It's all I can do to stop myself from going to the local sub shop and getting a tuna sub on their great bread ... or spaghetti and meatballs ... or fried scallops. Yep, got it bad. And I do have the gluten-free food in the house - it is NOT what I want.

Thanks for listening

ann

[KaitiUSA]

I'm 17 at the moment...I will be 18 in about 2 weeks!!!

If the doctor gave you a diagnosis with high IgA I would say you have it. IgA can be wrong when low due to IgA deficiency. Most of the time when it's high it will be accurate. You have antibodies so therefore there is a gluten problem

However, now a full panel which includes the tTG is recommended because that will be very thorough then.

You really need to make sure you are gluten free though...if not it can cause alot more problems.

Good luck with everything and feel free to email me if you need any more help with foods, etc.