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Cara in Boston

Can Someone Help With Blood Test Results?

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Can anyone make any sense of these numbers:

5 year old boy, not many symptoms. Had 2 weeks of stomachaches and marked behavior change back in November. Aches seem to be gone, mood swings and bad behavior still here. He really has no other symptoms other than very vague ones (dark circles under eyes, nosebleeds, excema on upper arms, etc.)

Primary care MD did celiac panel on him in December:

IgA Normal

TTG AB IgA Normal

Gliadin Ab(s) IgG 58.8 (normal range is 0-15)

Gliadin Ab(s) IgA: 11.58 Normal

TTG Ab, IgG 27.04 (normal range is 0-15)

Based on this, we went to a pediatric GI who found these results:

Prometheus Test: he has DQ2

TTG normal

EMA normal

The GI nurse who gave me the results said based on this, it was not likely that he has Celiac Disease but they scheduled a endoscopy anyway.

We have since gotten an appointment at Boston Children's Hospital (they have a Celiac Unit) so we cancelled the endoscopy and plan to do whatever the MD at BCH advises.

But now I'm confused. I thought having the DQ2 made it more likely you may have it. The nurse on the phone said it meant there was a LOW risk of having it.

Can anyone make any sense of these numbers? Why would first MD schedule a procedure if he didn't think he would find anything?

I have since tested positive (blood test) for it but had a negative biopsy. I think I have it (doing gluten challenge right now) and would that make it even more likely for him to have it?

I'm just so confused.

Are there any questions I should be sure to ask tomorrow?

Cara

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Kudos to you for getting your son into a Celiac Clinic! That is probably the best thing you can do for him. As you can see from my signature, I am also DQ2 positive, and had negative tTG and EMA. I'm still in the throws of finding a doctor who KNOWS about celiac disease and NCGS, which is harder than it would seem. Once you have acheived that, your son will be well taken care of. At the very least, he probably has a form of gluten intolerance, which could very well end up being full blown celiac disease if untreated. I KNOW I have one or the other, just from mini-gluten-free trials and my symptoms, but getting a good doctor who is current on Celiac and recent findings and research is not easy.

I have been reading quite a bit, and there is evidence (yet no official scientific studies to confirm) that there are several kinds of gluten intolerance, one of which has a name, and specific tests to confirm it... that being Celiac Disease. There are many people who suffer just as greatly from other forms of gluten intolerance that the medical community is just recently beginning to understand and do research on.

I know I haven't given you any answers, I'm not a medical specialist, but honestly from reading some very good books on the topic, sadly I and many people here are as knowledgable or even more knowledgable about celiac disease and NCGS than many doctors, at this point. SO again, kudos to you for taking your son to people who know there stuff! He will be in good hands, and you will have all your questions answered by people who actually understand celiac disease and NCGS. ;)

Oh, and as for being DQ2 positive, that DEFINITELY puts your son into the "pool of people likely to get or have celiac disease". DQ2 and DQ8 are the celiac genes, and while a third of the population may have these genetic markers, only some people will get celiac disease. I have read however, that some doctors (wise beyond current research) will tell their patients who have either of these two markers, and symptoms of celiac disease, they should go on a gluten free diet. (again because there is so much they don't know, and it IS toxic to us). And, never say never, .... there is a tiny population who don't have either of these markers that have confirmed celiac disease.

Just make sure you keep your son on a gluten FILLED diet until all of his testing is done. :) Good luck to you... hang in there and it will get better soon!

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Can anyone make any sense of these numbers:

5 year old boy, not many symptoms. Had 2 weeks of stomachaches and marked behavior change back in November. Aches seem to be gone, mood swings and bad behavior still here. He really has no other symptoms other than very vague ones (dark circles under eyes, nosebleeds, excema on upper arms, etc.)

Primary care MD did celiac panel on him in December:

IgA Normal

TTG AB IgA Normal

Gliadin Ab(s) IgG 58.8 (normal range is 0-15)

Gliadin Ab(s) IgA: 11.58 Normal

TTG Ab, IgG 27.04 (normal range is 0-15)

Based on this, we went to a pediatric GI who found these results:

Prometheus Test: he has DQ2

TTG normal

EMA normal

The GI nurse who gave me the results said based on this, it was not likely that he has Celiac Disease but they scheduled a endoscopy anyway.

We have since gotten an appointment at Boston Children's Hospital (they have a Celiac Unit) so we cancelled the endoscopy and plan to do whatever the MD at BCH advises.

But now I'm confused. I thought having the DQ2 made it more likely you may have it. The nurse on the phone said it meant there was a LOW risk of having it.

Can anyone make any sense of these numbers? Why would first MD schedule a procedure if he didn't think he would find anything?

I have since tested positive (blood test) for it but had a negative biopsy. I think I have it (doing gluten challenge right now) and would that make it even more likely for him to have it?

I'm just so confused.

Are there any questions I should be sure to ask tomorrow?

Cara

omg... 1st off-> those December numbers are completely positive- TTG is positive & Antigliadin is positive AND the boy has a whole host of gluten related symptoms. now, between this dec. test, and your G.I.'s test did you take your son off gluten? or go gluten lite??? because the GI came back with a NORMAL ttg, and NEgative EMA... but they did not test for antigliadin.

listen- nurses do not know everything (and even some docs for that matter)... the DQ2 definitely for sure puts your son at risk for Celiac specifically... the gene alone does not mean one will develop celiac- but if you put that gene with your son's symptoms, and your son's 1st positive blood test- i would assume that is enough proof.

now, just like your experience- your son could end up with a negative biopsy... and then what- that dumb nurse is gonna say- oh he for sure doesnt have it... sorry, im getting annoyed.

has your GI actually looked at your son's 1st blood test results??? make sure he reviews them as part of your son's file. my Gi didnt look at my panel that my PCP did- and when i showed it to him- and that my EMA was positive- he was like: "ohhhhhh i seee... yes, i would say at this point that you do have celiac"....

sorry to ramble. yes- my opinion is that your son is celiac. the first blood test totally positive

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Thanks for the input.

One of the reasons we are happy we are able to take him to Children's Hospital is because I couldn't really get GI doctor #1 to answer any of my questions or take me seriously. I would imagine any parent of a 5 year old would have TONS of questions. I am hoping that with the switch, we get some more clear answers. They specialize in Celiac and Gluten Intolerance so I feel confident they are pretty current.

I went gluten free (only 10 days) before my endoscopy (I assumed there would be a big wait like with my son, but they surprised me and were able to see me right away) and that may be why I tested negative after testing positive. I don't know. For me, I'm willing to give it another three months and test again. After that, I'm just going to go gluten free and see how I feel.

For my son, I've kept him on his regular diet. Maybe a bit "gluten-lite" just because we've been trying different products in anticipation of possibly going gluten free.

My blood tests were positive where he is negative and negative where he is positive. Very strange.

My doctor (adult GI - Celiac Specialist) was kind enough to look at my sons' results (before I cancelled the first endoscopy with MD #1) and he seemed to think there was "no rush" to get him in.

In one of my books that described the testing results with a handy flow chart it seems that he (at the least) is gluten intolerant and may have (or may develop) celiac.

If I'm not sick now, this whole process is MAKING me sick!

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We were very impressed with our new doctor. She seems to really know her stuff. She needs to review the results of the first doctor's blood test before moving forward.

I just got a copy of the tests today and I continue to be confused. He is testing negative on all the IgA stuff but still got a positive on the DGP IgG.

These are the numbers:

DGP IgG 5.6 (range: less than 1.3)

DGP IgA .5 (range less than 2.9)

TTG IgA .1 (range less than 10.3)

EMA IgA Negative

Total IgA 68 mg/dl

Then, the summary Interpretation says, "Results may support a diagnosis of celiac disease in the presence of IgA deficiency."

It looks like he doesn't have an IgA deficiency, so do these numbers mean nothing?

What else would cause only the IgG numbers to be high?

Cara

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We were very impressed with our new doctor. She seems to really know her stuff. She needs to review the results of the first doctor's blood test before moving forward.

I just got a copy of the tests today and I continue to be confused. He is testing negative on all the IgA stuff but still got a positive on the DGP IgG.

These are the numbers:

DGP IgG 5.6 (range: less than 1.3)

DGP IgA .5 (range less than 2.9)

TTG IgA .1 (range less than 10.3)

EMA IgA Negative

Total IgA 68 mg/dl

Then, the summary Interpretation says, "Results may support a diagnosis of celiac disease in the presence of IgA deficiency."

It looks like he doesn't have an IgA deficiency, so do these numbers mean nothing?

What else would cause only the IgG numbers to be high?

Cara

I think his total IGA does appear to be quite low even though they didn't give you the range. Keep in mind that false negative tests for celiac are even more common in children than in adults and the DGP is one of the best and newest tests they do and that was positive so once testing is done do give a strict trial of the diet.

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Thanks for your help.

I CAN'T WAIT to start him on a gluten free diet. We just really want to make sure we are done with the testing before we do. The new doctor mentioned he may still need an endoscopy and that could be delayed for up to a month! We'll see what she thinks after seeing these new numbers.

Now that I have it in my head that he is sick, I keep seeing (or imagining)more and more symptoms. Thankfully, he is not complaining of any discomfort or I would really feel terrible. Poor thing.

My other fear is that I am being more-than-understanding about his tantrums and melt-downs. If it turns out that he is not sick and just being a brat I will have created a monster! (Not really worried about this, but my husband thinks I'm being too soft when it comes to his unacceptable behavior - another reason I really want to get a clear diagnosis. )

Our new doctor only works with patients three days a week - the other days, she is doing research on Celiac Disease. I feel quite lucky to have found her and that we live in Boston with lots of hospitals to choose from.

Cara

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