Why Would Ttg Disappear?! Help!

[kerid]

my daughter had a blood TTG of 9. (reference range was normal- 0-3, mild positive 4-9, positive 10.) this was after being on gluten for only 2 weeks (she's been about 80%gluten-free for the last 4 years). the pedi gi specialist said that he wanted to redo the test after a full 8 weeks on gluten to see if the numbers go up. if they do, she most likely has celiac disease. if the numbers stay the same or go down, she still MIGHT have celiac, but we don't definitly know. so, i just got the results back, and they are <2. wth?!!!!!!!!!!!!! why would they go DOWN?! why would she have been a 9 to begin with? ugh! any help would be really appreciated!!! btw, we got stool testing done from enterolab. results will be back within 3 weeks. i hear it's much more sensitive. i'm just so confused.

[guest134]

Did she have a recent infection or illness when the test came back positive? Celiac is not the only thing that can raise the TTG, here is a study of transient elevation during illness in children: Open Original Shared Link

The tests can have both false positives and false negatives, so to tell which one is more likely the clinical evaluation/medical history of your daughter is crucial. Also, I don't know why your doctor is so hooked on simply the TTG, you need an entire panel done to get an accurate answer. Go in and demand for these tests:

Total serum IgA- This number has nothing to do with Celiac but if low will be the reason for false negatives on all the IgA based tests.

Deamidated gliadin IgA- Specific reaction to gluten, if this is positive your daughters body is negatively reacting to gluten

Deamidated gliadin IgG- Similar to it's IgA counterpart but slightly less specific in an IgA sufficient individual

Tissue Transglutaminase IgA/IgG- This is the test you have already had which indicates gut damage, get both the IgA and IgG version regardless of IgA sufficiency

Endomysial Ab- With titres over 1:5 this antibody has been proven to be EXTREMELY specific to Celiac in clinical studies, unlike the TTG which provides many false positives in certain population samples.

Can you give us some more detail on your daughter including symptoms, family history, and anything else that may be of importance?

[kerid]

they originally did the whole panel, and everything came out negative, with a total igA being normal. but, when i called the office yesterday, it seems they ordered the wrong test!!!!! they ordered the ttg igA, which was always negative. they were suppose to order the igG, to compare the results to last time! so i called the lab, told them about the mistake, and thank God, they had the blood still. they ran it today, should get the results back tomorrow or monday. also, i can't believe the doctor didn't catch his mistake! they actuallly told me to let her eat gluten for another month and check the test again!!!! imagine if she does have celiac, and the doctor told me to have her eat gluten for another month!!!!

btw, she had the flu on thanksgiving, and the test 2 weeks later. she gets facial tics and hand temors on gluten, and very bad muscle fatigue/pain/overall weirdness in her leg muscles when on gluten. so she's back to being glutenfree. thank God!

[kerid]

wow!!!! GREAT article! thanks!!!!

[kerid]

we all have the genetics for celiac disease. me, her, and the youngest daughter are DQ2 heterozygous. hubby is DQ8 heterozygous. son is DQ2-,DQ8-, but carries an uncommon allele.

[Madagascar]

the woman that i'm seeing for advice on celiac disease speaks internationally on it, and i think really knows her stuff. she says that if you have the gene, you have it. if you don't have antibodies yet, that's super, but you should get antibody levels checked once a year so if you develop the antibodies you can stop eating gluten. either that, or stop anyway.

she also told me that this is a dominant gene - you only need one gene to have celiac disease. it seems some people don't manifest antibodies or symptoms until they have a triggering event, like an illness (lyme disease is a biggie) or something else that switches things on and makes the celiac evident.

i should clarify - you have the potential to have celiac if you have the genes. you don't necessarily HAVE it until it gets triggered. i have one gene and all 3 of my young adult kids went gluten-free because of it. they all have had some symptoms, but none are going to get tested.

[guest134]

Madagascar, if the woman you speak of says "If you have the gene you have Celiac" than she is horribly incorrect. Does she have her M.D? PH.D? What qualifications does she have to say something like that? It honestly gets me so angry to hear that people are going around spewing false information and making people believe they have a disease that they do not in fact have. She sounds to me like one of the many alarmists that makes lots of money off scaring the miss-informed members of our society, just like many conspiracies they create a false scare and make MILLIONS. Did you know that the Mayan 2012 "prediction" industry accumulated BILLIONS in profit? These people know what they are doing, stealing your money while trying to come from the angle of having "advanced knowledge" or some other qualification they made on their own to distinguish themselves from the professionals. They are also always trying to come across as so "understanding" and "friendly."

According to this woman, 40 percent of the worlds population has Celiac because that is the population percentage that has at least one of the 3 known Celiac genes. I really hope no one is taking this loony too seriously. The fact that this women is going around and internationally addressing people with this false info makes her either A) A socio-path who has no care for other human beings and pathetically makes money off scaring and misleading others, no lower than the thugs that rob people in the streets. Or Is just horribly misinformed which would not be an excuse for someone who publicly speaks on an issue making it their career.

Sorry for the rant, not meaning to derail the topic but I hate when false info gets passed around, nothing against you madagascar. People will repeat things they hear from what they believe is a trust-able source and it ends up bringing a landslide of false information being passed around. People come on this forum for answers to what Celiac and NCGI really is and the ins-and-outs of testing. It is our responsibility to ensure the information we provide these people is in fact accurate and can be cited, many have already had a a crazy run around and don't need it any more from us.

[guest134]

Kerid, it sounds like you are in a situation many Celiac's fall into in which diagnosis is not always so clear sighted and easy.

With her entire IgA panel being negative (including endomysial?) and a low positive IgG with a recent infection I would say that the test was likely a false positive.

I really need more info to be of more help, what made you believe Celiac as a possibility? Any of it in the family besides the positive genes?

At the end of the day if your daughter is receiving horrible symptoms on gluten then you know it is a problem. Now here is where I will butt heads with many people on whether or not to pursue further diagnosis. I think biopsy established diagnosis is very crucial, or in rare obvious clinical cases diagnosis with high positive antibodies, the reason being the extent of Celiac vs. NCGI. While both come with their horrid symptoms that make the individual not want to consume gluten only one is a serious disease that can have complications. Celiac can increase risk of GI malignancy, other autoimmune diseases, and many malabsorption related issues such as early osteoporosis making it absolutely crucial to avoid ALL GLUTEN, even cross contamination. In my opinion it is very important to know which you have as one you can "cheat" and slip up on with cross contamination while the other you have to be very strict for life.

If you and your daughter are determined gluten is an issue and don't want to forgo an invasive biopsy then it is completely up to you to stop the consumption. Just take into account what I said above about knowing the risk difference of Celiac and NCGI. The G.I I went to in regards to my possible asymptomatic Celiac told me that one of his old patients that didn't have the strongest symptoms would always cheat once a week or so despite knowing he had confirmed Celiac, he ended up with T cell lymphoma and unfortunately passed away, that is a good reason to me to know whether you have Celiac of NCGI. If you have Celiac, strict dietary compliance is a must.

[mushroom]

I would just like to elaborate a little bit on what toworryornottoworry said. The issue has not yet been resolved in as black or white fashion as that because the reearchers have only just started seriously exploring the effects of NCGI. See for instance:

The researchers noted that very little is known about gluten-related disorders other than celiac disease, notably gluten sensitivity, and called for more research on the topic:

“Further studies are urgently required to clarify whether the spectrum of toxic cereals, the gluten threshold and the disease duration are the same in gluten allergy and/or sensitivity as in celiac disease,” they wrote.

Open Original Shared Link

It is not yet known how serious NCGI actually is. In the past it has always been assumed it was not serious. Now, we are not so sure.

[kerid]

ncgi is quite serious, as the gluten antibodies can attack other organs in the body.

so, we got the results of jeanna's blood tests back. her ttg igg after 2 weeks on gluten was a weak positive (9), but after 4 more weeks, was a positive (12). so the doctor said that she has celiac disease. remember that she was about 90% glutenfree for 4 1/2 yr prior to the testing. i got the stool testing done, as about 70% of full-blown celiac's antibodies don't show up in blood, while almost 100% show up in stool. and many get missed in biopsy testing, only to continue consuming gluten, and then show up with it later after many more years of tissue damage.

i know that she cannot eat gluten. after she did the 8wk trial, her leg muscles felt horrible!!! very shaky, weak, fatigued, painful. it took her 3 days off of gluten just to get out of bed without crying. it was horrible! plus she felt "funny" in her head, melting down, etc. SO glad she's off of it!!!

[kareng]

ncgi is quite serious, as the gluten antibodies can attack other organs in the body.

so, we got the results of jeanna's blood tests back. her ttg igg after 2 weeks on gluten was a weak positive (9), but after 4 more weeks, was a positive (12). so the doctor said that she has celiac disease. remember that she was about 90% glutenfree for 4 1/2 yr prior to the testing. i got the stool testing done, as about 70% of full-blown celiac's antibodies don't show up in blood, while almost 100% show up in stool. and many get missed in biopsy testing, only to continue consuming gluten, and then show up with it later after many more years of tissue damage.

i know that she cannot eat gluten. after she did the 8wk trial, her leg muscles felt horrible!!! very shaky, weak, fatigued, painful. it took her 3 days off of gluten just to get out of bed without crying. it was horrible! plus she felt "funny" in her head, melting down, etc. SO glad she's off of it!!!

There are several things wrong here.

Celiac produces the antibodies. NCGI (non-celiac gluten intolerance) does not. That's why its not Celiac.

This isn't true either - "about 70% of full-blown celiac's antibodies don't show up in blood, while almost 100% show up in stool".

If you have reputable sources for this info, please post them as I have not seen anything like this.

Open Original Shared Link

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.

Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.

Further reading: Open Original Shared Link at"

and in this answer they reference: Open Original Shared Link

"Conclusions Neither stool test was suitable for screening for coeliac disease in children with symptoms."

Open Original Shared Link

How accurate are the blood tests?

These blood tests are very accurate, especially when the tTG and EMA levels are elevated, as in patients with celiac disease. In a small number of cases, though, a patient with celiac disease may have a negative blood test.

Is there a stool test to determine whether or not I have celiac disease?

Stool tests have not been proven to be effective in screening for celiac disease in patients. Blood tests remain the most effective and reliable way of screening for celiac disease.

[kerid]

celiac does not produce the gluten antibodies. 2 of my children have gluten antibodies, yet (according to the specialist) do not have celiac disease. your plasma cells (derived from B lymphocytes) make antibodies to certain foods. IF it attacks the intestines, it is called celiac disease. if it attacks other organs, it's called "non celiac gluten sensitivity".

i do not have a link for the 70% thing i mentioned earlier, read it somewhere. sorry i cannot back that up.

there are many tests done around the world that are not done here in america. there are many tests done here in america that doctors do not recognize. it does not mean it's not valuable. my daughter had an asthma attack everytime she ate dairy. specialist said she was not allergic to dairy, so i should give it to her. so just because american doctors don't recognize other reasons... then they don't exist? sorry, i don't buy that. stool testing is very sensitive, it's testing "right at the source", so to speak. if you have something going on in your intestines, your feces will reflect that.

we are just going to have to accept that we have a difference in opinion. doctors are not the almighty, in my book. there have been MANY instances in my life where i have done my own research, done my own testing, and healed myself, as well as my children, because doctors didn't want to listen (even my daughter's facial tics!). they only know what they are taught in medical school, and what their governing bodies tell them. (unless, because you are the board moderator, you tell me that i'm not allowed to mention any other testing than what is approved by the AMA; in which case, i will take my leave.)

[kareng]

I'm just trying to explain what the current accepted medical information is.

The part about Celiac's not having antibodies doesn't make sense. The presence of the antibodies in the blood are one of signs of Celiac. I'm not sure how you got that info. Please share your sources.

[mushroom]

IF it attacks the intestines, it is called celiac disease. if it attacks other organs, it's called "non celiac gluten sensitivity".

If gluten attacks the intestines and you test positive, it is called celiac disease. If gluten attacks the brain, and it tests positive (harder) it is called celiac disease. If gluten attacks the skin as in Dermatitis Herpetiformis, and is diagnosed positive, it is called celiac disease.

If gluten attacks the body causing pain and diarrhea/constipation and other symptoms, and does not test positive for celiac disease (either by blood work, intestinal biopsy or skin biopsy) it is called non-celiac gluten intolerance. This does not mean that it is not doing damage somewhere in the body; it may well be. Medical science just hasn't found it.

[kerid]

what she said! thanks!

(i didn't say celiac's don't have antibodies, i said that just because you have antibodies to gluten, doesn't mean you have celiac disease.)