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Hello, I am new to forums, but not new to celiac!

I have been Gluten free for 30 years (biopsy at age 7).

I am new to parenting though. We have been struggling with my now 4 year old daughter for what seems to be her whole life. I will keep it short, but she has no physical symptoms (except extreme constipation since introducing gluten at age 1).

It is her extreme tantrums that have me questioning if she is celiac. These are not just toddler tantrums these can last from 30 minutes to 1 hour, top of the lungs screaming.

I did get her blood test done when she was 3 results:

IgA 1.6 (range <12 U/ml

IgG 34 (range <12 U/ml

IgA AB 1.2 <10 U/ml

I have no idea what that means, except her IgG is very high.

My sister and brother also have celiac.

I know with family history and blood test she is at a higher risk, but would you get her tested if she has no pysical symptoms. THe wait time for a biopsy is 7 months!

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Hello, I am new to forums, but not new to celiac!

I have been Gluten free for 30 years (biopsy at age 7).

I am new to parenting though. We have been struggling with my now 4 year old daughter for what seems to be her whole life. I will keep it short, but she has no physical symptoms (except extreme constipation since introducing gluten at age 1).

It is her extreme tantrums that have me questioning if she is celiac. These are not just toddler tantrums these can last from 30 minutes to 1 hour, top of the lungs screaming.

I did get her blood test done when she was 3 results:

IgA 1.6 (range <12 U/ml

IgG 34 (range <12 U/ml

IgA AB 1.2 <10 U/ml

I have no idea what that means, except her IgG is very high.

My sister and brother also have celiac.

I know with family history and blood test she is at a higher risk, but would you get her tested if she has no pysical symptoms. THe wait time for a biopsy is 7 months!

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I have read that symptoms can be incredibly varied. In my experience as a father of three, parental instincts need to be followed, even if medical professionals roll their eyes. Lots of the current research I've read is looking at the effects of gluten on the brain and not just the GI system. Have you tried going gluten-free with her to see if that changes her tantrums? I know that you probably don't want her to go gluten-free if she has an endoscopy coming up, but it might be worth it if the biopsy is seven months out. Hang in there!

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I will keep it short, but she has no physical symptoms (except extreme constipation since introducing gluten at age 1).

It is her extreme tantrums that have me questioning if she is celiac.

Extreme constipation is a symptom, actually. :( And the fact that it happened after introducing gluten? That seems pretty suggestive.

Both my midgets have emotional issues/tantrums after gluten. My daughter especially...and she's 12 now. She just loses it for 3-4 hours, then is on the edge of crying/angst issues for a day or two.

My son will get it with gluten, or with dairy, and with both together? Call in the cavalry. <_<

My daughter tested positive, my son negative, but for your little one? Even if you wait for tests, a recent double blind placebo study would suggest that you would want to take her off gluten to see if she is non-celiac gluten intolerant, anyway. I believe in the research section here had a recent posting on it. The test involved people with symptoms, but no indicators of Celiac Disease ever develop, even as the symptoms persist on gluten, and stop after gluten stops.

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Extreme constipation is a symptom, actually. :( And the fact that it happened after introducing gluten? That seems pretty suggestive.

Both my midgets have emotional issues/tantrums after gluten. My daughter especially...and she's 12 now. She just loses it for 3-4 hours, then is on the edge of crying/angst issues for a day or two.

My son will get it with gluten, or with dairy, and with both together? Call in the cavalry. <_<

My daughter tested positive, my son negative, but for your little one? Even if you wait for tests, a recent double blind placebo study would suggest that you would want to take her off gluten to see if she is non-celiac gluten intolerant, anyway. I believe in the research section here had a recent posting on it. The test involved people with symptoms, but no indicators of Celiac Disease ever develop, even as the symptoms persist on gluten, and stop after gluten stops.

According to our GI, you should see emotional improvements very quickly (within a few weeks). It should be an easy try. We saw immediate emotional improvements within 2 weeks and the emotions came back quickly when we tried to put her back on gluten for a biopsy. We then decided to back off and just stay glutenfree and postpone the test.

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She may have physical symptoms that she's not vocalizing or doesn't realize are there. My son had very mild physical symptoms. He would have ocassional stomach aches and then he had bad leg pains, but he was very irritable. If your daughter is feeling like crap internally, then the temper tantrums could be a sign. I would at least make an appointment with a GI. Since there is such a strong link in your family, he may call her diagnosed with celiac disease without doing an endo. I'm pregnant with a baby with Down Syndrome, and with a first degree sibling diagnosed, that makes her almost guarenteed to develop celiac disease. The GI doctor has suggested two routes. One is to just assume she'll develop celiac disease and go gluten-free with her. The other is to wait, and if she starts showing symptoms, have her blood tested and if that comes back positive, diagnose her as celiac disease because of her brother having it. The endo is more dangerous for her because of issues with the Down Syndrome.

Personally, I would just try gluten-free with your daughter and see if that makes a difference. If it does, then you have your answer.

Hello, I am new to forums, but not new to celiac!

I have been Gluten free for 30 years (biopsy at age 7).

I am new to parenting though. We have been struggling with my now 4 year old daughter for what seems to be her whole life. I will keep it short, but she has no physical symptoms (except extreme constipation since introducing gluten at age 1).

It is her extreme tantrums that have me questioning if she is celiac. These are not just toddler tantrums these can last from 30 minutes to 1 hour, top of the lungs screaming.

I did get her blood test done when she was 3 results:

IgA 1.6 (range <12 U/ml

IgG 34 (range <12 U/ml

IgA AB 1.2 <10 U/ml

I have no idea what that means, except her IgG is very high.

My sister and brother also have celiac.

I know with family history and blood test she is at a higher risk, but would you get her tested if she has no pysical symptoms. THe wait time for a biopsy is 7 months!

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With the delay of 7 months, you can do both. Start the gluten-free diet now and give it a few months to see if it helps. At that point, you would still have time to do a gluten challenge (3 months) before the biopsy if you decide you want to continue with testing. By then, you may already have your answer.

Make the appointment, you can always cancel in a few months.

Cara

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My daughter's Ttg was >100, her twin brother's was only 18, she has already had the EGD, he is still waiting to see the GI doctor, one of her symptoms is extreme constipation and stunted growth. She has not grown since her 3 year check up, she is almost six now. Go with your gut, my son is pretty much asymptomatic, he is not big by any means but he grows, has no problems with his bowels and eats well but I have to get the EGD done to confirm because I just have to know for sure and I think that if you don't get that confirmation you will always wonder and it will bother you. I agree you can try gluten free for a few months but do need to have the gluten in her system for the biopsy to produce the results you need. The thing that really upset me was that my son's pediatrician's office told me that if he's not having any symptoms that not to worry about it. I hope you find the answers you seek. Good luck to you, it can be a difficult process.

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