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bobtom

Is This Celiac?

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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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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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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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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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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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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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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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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.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
    • Congratulations!!🎆🎇🎊🥂  
    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.
    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
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