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Should I Have Child Tested?


CtheCeliac

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CtheCeliac Rookie

I tested positive on the bloodwork, but could not wait the six weeks for the scheduled biopsy. Within six weeks I was healing, gaining weight, not having skin issues, relieved of D, etc. Now, I'm concerned about my kids. I had the blood tests (IgA, IgG, and TgA) run on my six-year-old, and they were negative. However, do I understand correctly that sometimes the test won't come back positive in some children until they've had adequate exposure to gluten?

Initial possible signs:

On growth chart, 10% weight and 25% height

Occasional canker sores

Some irritability

Falls asleep easily in vehicle

Developed red swelling below left eye for 24 hours

Occasional leg pains when sleeping

My brother and I are Celiacs----not officially diagnosed with biopsies----skin issues and weight gain issues resolved (he's gained 60 pounds and I've gained twenty) from going gluten-free. Don't know any other family history.)

What do you think of Enterolab? Is an advantage that the results would not be in her medical records for possible future insurance exclusions?


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Nathan's mom Apprentice

I don't think Enterolab will diagnose Celiac, only gluten sensitivity.

Guhlia Rising Star

Enterolab can't diagnose Celiac, it can only detect gluten intolerance. I believe the child has to be consuming gluten to have a positive on the Enterolab test. I could be wrong on that though. How old is the child?

With both you and your brother being Celiacs you both definitely need to have any children tested for Celiac as well whether they are symptomatic or not. All other first degree relatives (ie: parents, other siblings, etc) should also be tested. If testing yields a negative result, they should be retested again later in time. I don't remember what the recommended time frame is, but I think its something like 4 years, maybe less. Anyway, they should be tested periodically.

Remember, a negative test result does NOT rule out Celiac in the future. Just because your child tests negative one day doesn't mean he wouldn't test positive the very next week.

gfpaperdoll Rookie

definitely test thru Enterolab.com. They can detect a gluten problem up to a year on the gluten free diet. Celiac is just the advanced stages of gluten intolerance. Read the book "Dangerous Grains".

Enterolab does not profess to diagnose celiac because the medical community has a very narrow definition of celiac as only being diagnosed by biobsy re a result of damaged villi. Well you have to be sick for a long time for the villi to get damaged, so common sense should tell you that you have something wrong before the villi are damaged. You do not just wake up one morning & have damaged villi. Enterolab can identify if you are having a problem with gluten. Now that could be gluten intolerance, celiac, gluten allergy, gluten ataxia or maybe another gluten problem that does not have a name. The treatment is all the same - do not eat gluten....

I am not affiliated with Enterolab except that I did my testing there & my family & have sent several friends there. But I thank God for them everyday, because they are identifying people with a gluten problem that the medical community are mising & these people are dying younger than they should & suffering for years with all the associated autoimmune illnesses.

personally, when I found out how insidious gluten is, I would only want to feed it to the worst enemy, & then I am not sure, because I think that if that enemy was gluten free they might be a better healthier person...

CtheCeliac Rookie
Enterolab can't diagnose Celiac, it can only detect gluten intolerance. I believe the child has to be consuming gluten to have a positive on the Enterolab test. I could be wrong on that though. How old is the child?

With both you and your brother being Celiacs you both definitely need to have any children tested for Celiac as well whether they are symptomatic or not. All other first degree relatives (ie: parents, other siblings, etc) should also be tested. If testing yields a negative result, they should be retested again later in time. I don't remember what the recommended time frame is, but I think its something like 4 years, maybe less. Anyway, they should be tested periodically.

Remember, a negative test result does NOT rule out Celiac in the future. Just because your child tests negative one day doesn't mean he wouldn't test positive the very next week.

Thanks! My six-year-old still eats glutens (most likely not near as many as she used to). My husband was so relieved when the bloodwork came back negative, but I reminded him that does not mean it couldn't show up in the future.

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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
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