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What Should I Do?

AveryAndMorgansMom

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AveryAndMorgansMom Newbie
AveryAndMorgansMom
Posted

Hi. I'm new here and have some questions. I hope someone can help me. I'm really frustrated right now.

I have twin daughters who are 14 months old. I think that Morgan may have celiac disease. Ever since I started them on solid foods at 7 months old (they were exclusively breast fed before then and are still breastfed about 4 times a day), Morgan has been severly constipated. NOTHING has worked. Her pediatrician put her on milk of magnesia which worked, but she was still in soooo much pain every time she had to poop. We got a referral to a pediatric GI doctor and he switched her to Miralax which has made her poop without so much screaming in pain. He mentioned celiac disease because of her constipation, really low growth (she's in the 2nd percentile whereas Avery is in the 30th--they were preemies too), anemia, a general crankiness/ clingyness. He tested her blood for celiac disease and just called me with the results....negative. He says we should just watch her weight for a few months. I, however, want to get a biopsy because since researching about celiac disease, it totally would explain so much for me. She is really unhappy most of the time, is really clingy, has horrible constipation issues, has the dark circles under her eyes, looks to have a bit of a distended (sp?) stomach, has really dry, itchy skin, and is really underweight for her age (she's 16 pounds and 14 months old). Her twin sister Avery has none of these characteristics and they eat the same thing and pretty much the same amounts too. Avery is 4 pounds heavier too.

So, my question (sorry it got so long), What should I do? The doctor wants to see her Friday to check her weight and then go from there. My gut is telling me that she needs the biopsy. Any advice or opinions would be great :). Thank you!

Mariah

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Carriefaith Enthusiast
Carriefaith
Posted

Which blood test did the doctor take, the tissue transglutamase test is highly specific for celiac disease. Also, was she on a gluten free diet when they took the blood? A gluten free diet can negatively affect the results. I think that you should definatley talk to your doctor about doing a biopsy. She could also have an intolerance to something else like casein (the milk protein), soy, eggs, nuts, ect.

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AveryAndMorgansMom Newbie
AveryAndMorgansMom
  • Author
Posted
Which blood test did the doctor take, the tissue transglutamase test is highly specific for celiac disease. Also, was she on a gluten free diet when they took the blood? A gluten free diet can negatively affect the results. I think that you should definatley talk to your doctor about doing a biopsy. She could also have an intolerance to something else like casein (the milk protein), soy, eggs, nuts, ect.

<{POST_SNAPBACK}>

I don't know which blood test he did. She was not on a gluten-free diet. I've taken her off all milk products too (I just found out that I'm allergic to casein too).

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Carriefaith Enthusiast
Carriefaith
Posted

My best advice would be to ask which test was taken and if the tissue transglutamase test (tTg) was not taken, I would request it. This test is very specific for celiac disease.

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AveryAndMorgansMom Newbie
AveryAndMorgansMom
  • Author
Posted

Thank you Carrie :)

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Carriefaith Enthusiast
Carriefaith
Posted

No problem :) keep us posted :D

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ILOVEOMC Enthusiast
ILOVEOMC
Posted

Is the tTG the same as the tissue transglutamase IGA?

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Rachel--24 Collaborator
Rachel--24
Posted
Is the tTG the same as the tissue transglutamase IGA?

<{POST_SNAPBACK}>

Yes, its the same thing.

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ILOVEOMC Enthusiast
ILOVEOMC
Posted

My son had blood work out of Prometheus lab in Calif. and his tissue transglutamase IGA was .6 when anything under 4 is negative. Does that mean he cannot have celiac disease? His biopsy report indicated damage suggestive of celiac disease. I always wonder if his diagnosis is correct since the Tissue transglutamase was negative.

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Rachel--24 Collaborator
Rachel--24
Posted
My son had blood work out of Prometheus lab in Calif. and his tissue transglutamase IGA was .6 when anything under 4 is negative. Does that mean he cannot have celiac disease? His biopsy report indicated damage suggestive of celiac disease. I always wonder if his diagnosis is correct since the Tissue transglutamase was negative.

<{POST_SNAPBACK}>

I would assume that "visible" damage is proof positive. Never heard of a false positive as far as the biopsy is concerned. Flase positives can happen with the bloodwork though. (actually I'm not sure about that) People on here have posted that they were negative on all the bloodwork but biopsy showed flattened villi.

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AveryAndMorgansMom Newbie
AveryAndMorgansMom
  • Author
Posted
My son had blood work out of Prometheus lab in Calif. and his tissue transglutamase IGA was .6 when anything under 4 is negative. Does that mean he cannot have celiac disease? His biopsy report indicated damage suggestive of celiac disease. I always wonder if his diagnosis is correct since the Tissue transglutamase was negative.

<{POST_SNAPBACK}>

Origionally, my doctor said that the blood tests aren't as accurate for kids under 2, but I'm not sure about the prometheus lab. Maybe that one is more reliable?

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Carriefaith Enthusiast
Carriefaith
Posted
My son had blood work out of Prometheus lab in Calif. and his tissue transglutamase IGA was .6 when anything under 4 is negative. Does that mean he cannot have celiac disease? His biopsy report indicated damage suggestive of celiac disease. I always wonder if his diagnosis is correct since the Tissue transglutamase was negative.

False negative blood tests are possible, for example, there are some celiacs that are deficient in the IGA antibodies and a gluten free diet will cause a false negative result.

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Rachel--24 Collaborator
Rachel--24
Posted
I would assume that "visible" damage is proof positive. Never heard of a false positive as far as the biopsy is concerned. Flase positives can happen with the bloodwork though. (actually I'm not sure about that)  People on here have posted that they were negative on all the bloodwork but biopsy showed flattened villi.

<{POST_SNAPBACK}>

OOPS...What I meant to say is false negatives can happen with the bloodwork. So the neg. TtG could've been false.

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tarnalberry Community Regular
tarnalberry
Posted

Tests - blood and biopsy - are notoritously tricky on the youngest patients who may not have had significant damage as of yet. So... There's the option of retesting after the age of three if tests come back negative (both tests, that is), or of starting the gluten-free diet, and postponing the decision on what to do about testing. If the biopsy results show damage, then that's what you need to know; it takes a fair amount of damage for the antibodies which are normally confined to the intestines to make it to the blood stream to come up positive on the blood tests!

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ILOVEOMC Enthusiast
ILOVEOMC
Posted

Thanks everyone for your insights on this. This disease can be so difficult when you're a parent and have a child with celiac disease. You always wonder if it is real. My son was 11 when diagnosed this past spring. The other thing that makes me wonder is that the week before his biopsy he had a case of the fever and stomach flu with vomiting and diarrhea. I wonder if THAT is what caused the damage and showed up in the biopsy or whether it was Celiac damage. I sometimes drive myself nuts over this. Thanks for listening and your input.

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