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Help My 9 Yr Old Is In Pain
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well we have been gluten free for 3  weeks and  of a sudden he is home from school again with bad gas pains, gas that burns his  anus. He has loose bowel this a.m. and  cramps.  Celiac  blood  results  were  negative.

what  could be causing this?

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Welcome Trent's Mom or Dad?

 

Did he have a complete celiac antibody panel?

 

Total Serum IgA

tTG - IgA and IgG

EMA - IgA

DGP - IgA and IgG

 

Any nutrient testing?

 

Vitamins B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

 

Complete Blood Count (CBC) and Complete Metabolic Panel (CMP)?

 

Were you gluten-free or gluten light for any period of time before the celiac antibody tests?

 

Is it possible he is eating gluten at school or in a friend's home?

 

Hang in there -- not all children with Celiac Disease test positive -- dietary results are very important with kids -- try keeping a log of what he is eating along with any symptoms -- it really helps to find possible problem foods (even gluten-free processed foods can be problematic when newly gluten-free)

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I second Gottaski and Dairy always makes me have that burning feeling. Even small amounts of butter. But it could be a number of things.

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Welcome Trent's Mom or Dad?

 

Did he have a complete celiac antibody panel?

 

Total Serum IgA

tTG - IgA and IgG

EMA - IgA

DGP - IgA and IgG

 

Any nutrient testing?

 

Vitamins B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

 

Complete Blood Count (CBC) and Complete Metabolic Panel (CMP)?

 

Were you gluten-free or gluten light for any period of time before the celiac antibody tests?

 

Is it possible he is eating gluten at school or in a friend's home?

 

Hang in there -- not all children with Celiac Disease test positive -- dietary results are very important with kids -- try keeping a log of what he is eating along with any symptoms -- it really helps to find possible problem foods (even gluten-free processed foods can be problematic when newly gluten-free)

Thank you, but the Dr. only tested D and Iron , CBC, Complete metabolic panel, celiac panel, and Thyroid.

We were on a light gluten free when testing with blood work. No , he is so afraid to consume Gluten so he is very disciplined about his food choices! Thank God!

Have you heard of enterolab? and what are your opinions? it cost alot, but I am interested!

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Thank you, but the Dr. only tested D and Iron , CBC, Complete metabolic panel, celiac panel, and Thyroid.

We were on a light gluten free when testing with blood work. No , he is so afraid to consume Gluten so he is very disciplined about his food choices! Thank God!

Have you heard of enterolab? and what are your opinions? it cost alot, but I am interested!

Doesn't matter what I think. See what Celiac experts think:

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

"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.

We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough).

Further reading: “Detection of secretory IgA antibodies against gliadin and human tissue transglutaminase in stool to screen for coeliac disease in children: validation study” at BMJ.com"

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I agree with Karen's info, but have no direct experience with enterolab.

 

I believe our doctors can run all the tests necessary -- often they just don't order the correct ones.

 

Removing gluten or eating gluten light prior to celiac antibody tests can affect the results -- especially in children that don't always test strong possitive anyway.

 

If I didn't mention before -- three weeks is a very short time to be gluten-free.  You are all learning how to remove all gluten -- took our family at least three months to weed out all the sources of cross contamination in our kitchen and longer for my teens to remove it from their lives.

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what could be causing this

 

1. the tests aren't 100%

2. there's such a thing as non celiac gluten intolerance

3. some people get more sensitive after being off gluten for a while, which is proof that it's a real gluten problem

4. no matter what, sometimes you or a loved one gets cross contaminated by gluten, and you have to play "search and throw out" aka seek and destroy. 

5. a small percentage of us react to even gluten free oats, which is a nuisance.  others to soy flour or dairy.  dairy may be able to be added back in later, after healing.

6. writing down everything you eat, or at least when you add a new thing in, is a good way to keep track of reactions during the shakedown phase. 

7. gluten free labeling, at times, is not optimal in this country, and I can personally attest to having reacted to things labeled as such, while just by switching brands, to something sometimes not labeled but by a better manufacturer who isn't playing around with running production on shared lines with gluten ingredients, gets rid of the reaction. 

8. people will sometimes try to feed you what they think is gluten free snacks.... their kitchens are sort of not up to spec with the cross contamination issues....  if it ain't in a sealed package where you can study the ingredients, just gently refuse, if it is from a brand you don't do well with, thank them and just come up with another excuse that you can't eat "ingredient x" so you don't hurt their feelings.     Saves lots of reactions. 

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Doesn't matter what I think. See what Celiac experts think:

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

"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.

We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough).

Further reading: “Detection of secretory IgA antibodies against gliadin and human tissue transglutaminase in stool to screen for coeliac disease in children: validation study” at BMJ.com"

thanks!!!!
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Was he starting to feel better during the three weeks he was gluten free?  

 

I know we had very mild symptoms (none really, except behavior) before my son was diagnosed at age 5.  Now, if he gets "glutened" accidentally, he gets all kinds of sever GI issues.  He is much more sensitive after being gluten free.

 

If you think gluten is his problem (don't dismiss it just because of negative blood tests) keep him on the diet (try for 3 months).  I suspect he ate some on accident - maybe just from cross contamination.  

 

I had a similar problem in the early weeks of the diet change.  Turned out to me by B vitamin supplement.  It had gluten in it.

 

Cara

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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
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