• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help My 9 Yr Old Is In Pain
0

9 posts in this topic

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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"

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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!!!!
0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,783
    • Total Posts
      932,393
  • Member Statistics

    • Total Members
      64,259
    • Most Online
      3,093

    Newest Member
    BFerris
    Joined
  • Popular Now

  • Topics

  • Posts

    • Does he run a lot? On hard ground? My ferritin started at 74 and is now 20. My rbc count was normal but showed mild anemia after an 18 hour fast.   I initially also thought it might be due to malabsorption, and it may be, although my gut doesn't show a ton of damage. Coincidentally I started running around  all of this, with A 6 month break in between, and have also recently read that Runners Who log a lot of miles generally are pretty low on ferritin if they don't supplement.  I only do between 6-15 Miles per week.  I eAt a mixed green salad about 5 times a week, red meat a couple times a week, and then a lot of other high iron foods.  lamb stew is a tremendous source of iron, as well as muscles. I am a big fan of garden lights chocolate zucchini muffins as well each mini muffin contains 20% of the daily value.  I Like to eat Two for breakfast with my coffee.  if he stopped eating gluten about a month ago you might still be able to get the blood test done. I'm sure you have read by now that you need to be eating gluten to be tested.  antibody start falling Right away but for some people it takes a long time.     did they order a total iron binding capacity?  and was the iron panel done while fasting? You don't really need to fast for a ferritin but serum Iron can easily be elevated With food.  Although symptoms vary depending on the individual I have read quite a bit online that When ferritin drops below 40 people can start getting symptomaTic.  so you are likely correct that his feeling better is related to his ferritin level increasing.  giving up gluten means giving up certain nutrients as well. So if he's already vegetarian he needs to really pay close attention to what nutrients he might be missing in his diet now if he's giving up whole grains.
    • Thank you! I will look into it! 
    • You would honestly think that after you body goes nuts attacking your insides trying to kill the gluten after 2 days of food poisoning yourself with it the damn antibodies would show up in insane levels in your blood Life is not that easy though.
    • Some days I have 3 pieces of bread, other days I just can't handle more than 1.  I had to take a day of gluten rest after the first week.  I felt too aweful. Now I'm almost done with week 2 and I feel like I need another break.  Just so hard to do something to yourself that you know will hurt.  They just don't know how much and for how long.  There was a recent study that looked at gluten challenges in folks actually diagnosed with celiac and some took months to have elevated antibodies.   Just one day at a time.  I hope things go well for you. 
    • Thank you for replying. I think you are right- why take the chance of reinfecting myself with gluten exposure again when ive been trying so hard to rid it from my life?  I just read some interesting articles on Sjogrens Syndrome and gluten sensitivity and that they are related so that may answer one of my questions. Your symptoms took over a year to resolve?! Holy moly.. I fear that is going to be my issue too. Are you feeling better now?  
  • Upcoming Events