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Momma4

Finally Got Results For 10 Yr Old Son!

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We finally got blood test results for my 10 yr old son after waiting over a month for them.

The results show tTG IgA 13 <20 negative

Gliadin Ab IgA 9 <23 negative

Gliadin Ab IgG 55 <28 positive

He has all the classic symptoms of Celiac such as weight loss, diarrhea, stomach pain, mouth sores, gas, bloating, difficulty sleeping, lactose intollerant, caveties and itchy skin. His doctor said the positive result of the IgG doesn't confirm he has Celiac, so he is sending us to a paediatric GI and hour and a half away from where we live. That's fine, but I was also told we wont get an appointment probably until the end of NOVEMBER!

There was a peculiar statement on the lab results that also stated "elevated IgG Gliadin antibodies indicate that DH cannot be ruled out". So I wonder does Gliadin IgG only show for DH or can it show Celiac(without DH)as well? (I know that DH is a manifestation of Celiac) I have also posted pictures of my 2 yr olds rash that I wondered if it could be DH. My other kids(I have 4) also have various symptoms of Celiac, to a lesser extent.

I guess I just feel kind of lost and unsure what that result means. I think that he probably has Celiac, but I am kind of left hanging until November to discuss this with a (hopefully) specialist. Has anyone had similar results? Any thoughts on the results would be appreciated.

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I think, given that's a positive blood test to match the symptoms, I would be kicking up a fuss about them thinking they could string you along for another 7 months waiting for the next appointment.

You see, November is typically "open enrollment" month for health insurance changeovers for business companies. Gee, what an amazing coincidence they would be so kind as to grant you a specialist's appointment by the end of the fiscal year. Bless Their Hearts ! :ph34r::angry:<_<

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Have you only tested one child? Are you thinking of testing all four? I'd do it now because you could just book a whole day with a ped GI (fun) and if you go gluten-free they will be gluten light and testing will be harder.

Plus, you already have this one test, which really leads you to believe you're on the right track...might as well go for it.

And you and hubs should get tested, if you haven't already.

And I'm sorry, but SEVEN MONTHS? isn't there another doctor? Is there another way to schedule a biopsy if that's the direction you're going?

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Well, I know it seems like the 7 month wait is due to insurance companies, but we live in Canada and have free healthcare. We really do have great healthcare, but there are significant delays if you need certain specialists, like a pediatric GI. So we are stuck waiting.

I asked the doctor about testing the other 3, and he seemed to want to wait and I agreed. However, that was BEFORE I knew it was a 7 month wait to see the GI. I will be calling him to get the other ones tested ASAP now. And yes, I will want them to do the biopsy on my son.

So, I still wonder, can a positive IgG still indicate celiac? Or is it just a sensitivity? They did not do a total IgA.

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Well, I know it seems like the 7 month wait is due to insurance companies, but we live in Canada and have free healthcare. We really do have great healthcare, but there are significant delays if you need certain specialists, like a pediatric GI. So we are stuck waiting.

I asked the doctor about testing the other 3, and he seemed to want to wait and I agreed. However, that was BEFORE I knew it was a 7 month wait to see the GI. I will be calling him to get the other ones tested ASAP now. And yes, I will want them to do the biopsy on my son.

So, I still wonder, can a positive IgG still indicate celiac? Or is it just a sensitivity? They did not do a total IgA.

Yes. It could be celiac and he needs a full age-appropriate panel.

Someone else here had a child that only came up igg but scoped very positive. Kids are more likely to do that, I think, from what I've read.

It will be so hard to not go low gluten on everyone else, and effect testing. I'd definitely push for COMPLETE panels on all kids AND you and hubs. http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf

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I will definetly be tested and will get my husband tested as well. I have always had GI issues, but have always thought of it as normal. It wasn't until I started researching for my son that I see my 'normal' may not be so normal after all. We will get all the kids tested now because we have to stay on gluten until the biopsy is done anyway.

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Oh, okay, at least with you being Canadian they will eventually "getaroundtuit" and then acknowledge and treat if necessary, as opposed to down here in Barbarian- Land, where they let the for-profit insurance companies try to pass all the sick people around and around, until they are thrown off the rolls completely. <_<

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Well, I called my doctor today to ask for celiac testing and he told me to come right in to get the lab form. Just had the test done so we shall see what the results are. I will be phoning my kids pediatrician on Monday to have them tested as well.

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That's too bad your son has to wait 7 months. Are you in a smaller town or up north? We're also in Canada, but in Vancouver. Thankfully my daughter (almost 4) only had to wait about a month to see a pediatric GI. She had a TTG of 108 and then 79 when re-tested. She had the biopsy a couple of weeks ago. They said things looked "normal" during the scope, but we should be getting the biopsy results back today or Monday. My daughter doesn't have the terrible gastro issues that your son has though. I don't know if your GI has a cancellation waitlist you could go on, but maybe that's an option to get in sooner?

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My son (5) tested positive only on the IgG tests, and negative on all the others. His biopsy found extensive damage, so yes, it can be celiac. At the very least, I think the positive blood test means gluten intolerant, so you should start getting ready (try new foods, etc.)

We had frustrating delays as well. When referred to the GI (took a few weeks) he just asked the same questions and looked at the blood tests- we could have easily skipped this appointment. Eventually, he ordered MORE blood tests (same results - high only on IgG stuff) , genetic tests (just added to the confusion because they indicated LOW chance of celiac disease) more waiting for results . . .THEN a biopsy was scheduled (had to wait a few more weeks for that) then wait for results . . .

Maybe call ahead to the GI to see if you can just schedule the endoscopy . . . the 7 month wait is just to see the GI right? You will then have to get on the list for the endoscopy.

We also placed ourselves on the "call" list . . . if there was a cancelation earlier we would take it (but we live right near the hospital so it would have been no big deal.)

Good idea to get the other kids tested now rather than wait.

It is very hard to continue to feed your child food you know is causing them discomfort. Keep eating regular food but take this time to try out some gluten-free pasta and breads so you know what you like when the time comes . . .

Sounds like the time will come, given the results and symptoms.

On a positive note, once you go gluten free, the changes happen fast and those sensitive will be feeling much better very soon.

Cara

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mom2, we live in Ontario. Actually, I live in a border city to the USA, it's just that the closest childrens hospital has a huge wait list. We must have a shortage of pediatric GI's here. I can check to see if my son can be put on a cancellation list.

Cara, so your son had high IgG too? So it is possible to be celiac with a high IgG (and positive biopsy)?It kind of bothers me that they didn't do a total IgA for my son. I do think that based on his symptoms and the high IgG, he is at the very least gluten intolerant. The wait is just to see the GI. I'm not sure they will schedule the endoscopy without seeing the GI first, but I can check. It is hard feeding him foods that are causing problems for him. In fact, he was up at 3am this morning with diarreha and pain. I really feel bad for him if he does have Celiac. He already has a peanut and pea allergy, so we already are more limited in what kind of foods he can have. I have been looking at some of the store bought gluten free foods, in case we need them and even some of those he cant have if they contain nuts or even chick pea flour. We will have to be very careful in that respect.

Thanks for the responses,I guess I feel a little better knowing that I am on the right track with all of this.

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Just a small update on the blood work I had done last week. Turns out I have very low iron 6 (10-291) and low hemoglobin 118 (120-160). It will still be a month before I get the celiac test results back. Maybe it's just a coincidence, or maybe the pieces of the puzzle are starting to fit together.

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Yes that is low iron (probably ferritin) and low Hb, and it looks like you are onto something.

Do you have the home tests in canada? We have them here in Europe. Ours only work if there is no IgA deficiency.

And, it is possible to be celiac with negative tests.

By any chance, are the gliadin Ab tests you listed the new deaminated gliadin tests? I ahve seen the new tests listed just as "gliadin Ab test" when in fact they were the new deaminated gliadin tests.

Nora

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Hi there Nora. Your right, it is Ferritin. Yes, I think we do have the home tests here, but I haven't really looked into them. I really have no idea what version of the gliadin test was done. It just says Gliadin IgG, and Gliadin IgA. I didn't know that some labs generalize the tests and just call it Gliadin Ab. That's interesting.

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I have seen they call the new deamidated gliadin test for gliadin Ab.

Now many have ditched the gliadin Ab test several years ago, and only tested the tissue transglutaminase test, at least here in Europe.

But the last four years or so they have done the new deamidated gliadin here at the closest hospital, and have ditched the ttg test. They call the deamidated gliadin test for gliadin Ab.

Now the IgG version of that test is the most specific test of them all!

Maybe you can check which ones they did.

By the way, I have the swedish celiac groups on facebook, and to day not one swede had the deamidated gliadin test. They only get the Ttg test IgA and the total IgA.

In the experience of the norwegian forum, the home test is a bit more sensitive than the hospital ttg blood test. They get a weak positive on the home test, and a negative from the doctor. (with celiac symptoms and family history)

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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