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Is This Celiac?


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#1 bobtom

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Posted 31 August 2012 - 05:27 PM

Hi. Just new to forum.. My 11 year old son has been complaining for several months of abdominal pain, off and on. I cannot pinpoint any cause or correlation to anything. Took him to his pediatrician and she said she didn't think it was Celiac, but was going to do blood tests to rule it out. Gliadin IGA 67 (<20). That was the only specific Celiac test done. CBC,TSH, and cholesterol all normal. Sending us to a pediatric GI specialist but we can't get in until middle of October. From what I have been reading, I am somewhat confused by all the different tests. Is one celiac test enough, or do you need to run all of them to have a positive diagnosis? I would prefer him not to have to go through a biopsy, but I keep reading that is the "gold standard" for a true diagnosis. He is otherwise healthy, thin, boy. Any thoughts?
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#2 rosetapper23

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Posted 31 August 2012 - 06:40 PM

I'm sure someone will jump in soon with all of the appropriate tests. There IS a full celiac panel that doctors SHOULD run; however, most don't. The pediatric GI should run those tests before a biopsy is considered. Regarding whether or not a biopsy is necessary, it isn't really considered the gold standard anymore by a number of celiac experts. One of the top experts, Dr. Alessio Fasano, has been trying to convince his colleagues to realize that if a patient has positive bloodwork, has a poor reaction to gluten, feels better without gluten, and then feels poorly again when it is reintroduced into the diet, THAT is the gold standard. Have you tried removing gluten from your son's diet to see if his tummy troubles go away? Oddly enough, both I and my son were 11 when the worst of our celiac symptoms surfaced.
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#3 GottaSki

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Posted 31 August 2012 - 06:43 PM

Welcome!

Sorry to hear that your son is having recurring pain.

It is possible to diagnose strictly from blood work. While endoscopy is still the "gold standard" for diagnosis with many doctors it is becoming more common to diagnose from positive blood work - especially in children because the damage can be spotty within the intestine thus can be difficult to get accurate results from biopsy.

The Gliadin IGA test is very specific to Celiac Disease - you son's is positive which indicates Celiac Disease. He should have a full celiac panel as it is important to have all these taken before removing gluten from his diet.

Full Celiac Blood Panel:

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Gliadin IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate your son is not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel:

Bs, D, K, Iron, Ferritin, Copper and Zinc

It would be wise to consult with gastroenterology. Given the long wait to get an appointment I'd suggest you have your pediatrician order all the blood work above so that you have all the results for the GI to review at your first appointment.

Then you have a choice. Once the blood work is done your son can remove ALL gluten from his diet - it is a very difficult transition, but removing gluten is often the best test.

Caution - you must be certain you don't want to have an endoscopy - while it can be falsely negative, it can also provide opportunity to find out the extent of damage along with a look at other parts of the digestive system. If you remove gluten before an endoscopy you increase the chance of false negative results.

Hope that's clear....feel free to ask questions - this forum is the best place to get answers, help and support!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 bobtom

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Posted 31 August 2012 - 07:11 PM

I'm sure someone will jump in soon with all of the appropriate tests. There IS a full celiac panel that doctors SHOULD run; however, most don't. The pediatric GI should run those tests before a biopsy is considered. Regarding whether or not a biopsy is necessary, it isn't really considered the gold standard anymore by a number of celiac experts. One of the top experts, Dr. Alessio Fasano, has been trying to convince his colleagues to realize that if a patient has positive bloodwork, has a poor reaction to gluten, feels better without gluten, and then feels poorly again when it is reintroduced into the diet, THAT is the gold standard. Have you tried removing gluten from your son's diet to see if his tummy troubles go away? Oddly enough, both I and my son were 11 when the worst of our celiac symptoms surfaced.



Thank you for the information. I have not tried removing gluten from his diet yet as I am trying to do some reading and research. I am a little hesitent to start a gluten free diet in case the GI doc wants to run more tests. Thanks again!! This is alot of work, doesn't seem to be very simple diagnosis.
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#5 bobtom

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Posted 31 August 2012 - 07:21 PM

Thank you so much for the information. I think that's a great idea to have those tests done prior to seeing the GI doc. And you are also correct about the endo biopsy, it would be nice to see if there is any damage yet. His stomach aches have been going on several months, probably about most of this year off and on. He is not doubled over in pain or anything like that, but just complains alot. Do you know how long symptoms persist before any damage would be seen? With the Gliadin IGA being positive, can the other tests on the celiac be negative? Thanks again for your help. This is a great place for information.
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#6 nvsmom

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Posted 01 September 2012 - 07:01 PM

I would pursue the blood tests that Lisa (Gottaski) sugests. I was diagnosed after a positive EMA and ttg IgA tests; I chose to skip the biopsy since EMA indicates damage is being done to the intestine, as does ttg IgA.

I too remember those tummy aches as a kid (I was a tall, slim, athletic otherwise healthy kid too). That's great that your sone will grow up without the complications that can arise from untreated celiac. Kuddos to you!

Some of the other tests could come up negative. Children are especially notorious for have false negative tests; adults have false negatives over 20% of the time, and kids are more so. There are people who are diagnosed strictly from the damage seem in the endoscopy, but there are also those who show no endocopy damage yet have positive tests... it's very individual.

If he has a positive gliadin IgA test, that's a positive celiac result though. If you do the other tests, and they are negative, I would strongly sugest going gluten-free anyways, at least for a few months, to see if he feels better.

If he has any siblings, you might want to test them (and yourself) too since they could be "silent celiacs", and it tends to run in families.

Best wishes to your son. Good luck.
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#7 GottaSki

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Posted 01 September 2012 - 08:02 PM

This is alot of work, doesn't seem to be very simple diagnosis.

Very true. It is extremely frustrating that testing is not precise - also one of the reasons that so many people go undiagnosed.

I agree with the answers Nicole provided to your follow-up questions.

Keep reading and asking questions - the learning curve and transition to gluten-free is tough, but does get much easier with time.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 GFinDC

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Posted 02 September 2012 - 07:12 AM

Hi BobTom,

The estimated average time to get a celiac diagnosis is 9 years in the USA. Thee are 300 possible symptoms so it can be confusing to diagnose. You could ask your GI if they will diagnose based on blood results and response to the gluten-free diet. Some will do that, others won't. Your schools may provide diet accomadations for him if he is diagnosed, but that is something the school will need to answer.


Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul


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