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Should I Have Child Tested?

CtheCeliac

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CtheCeliac Rookie
CtheCeliac
Posted

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
Nathan's mom
Posted

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

Guhlia Rising Star
Guhlia
Posted

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
gfpaperdoll
Posted

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
CtheCeliac
Posted
  • Author
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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    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
    • knitty kitty
      Anyone else with very high HDL?

      By knitty kitty · Posted

      @plumbago, Are you taking any folate with your B12?   Folate helps regulate HDL levels.  You may try taking a methylfolate supplement with your B12.   If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency despite supplementing, resulting in HDL levels not getting regulated, but running high or low.   Pushing the envelope in explanations, too. P. S. Are you taking a B Complex?  Folate and B12 Cobalamine need enzymes made from B6 Pyridoxine's interaction with Thiamine, and B2 Riboflavin's interaction with Thiamine.  Is your Vitamin D low?
    • Nicbent35
      3 year old gluten intolerance?

      By Nicbent35 · Posted

      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
    • trents
      3 year old gluten intolerance?

      By trents · Posted

      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
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