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Biopsy And Blood Tests Results On 22 Month Old

sadiesmom

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sadiesmom Rookie
sadiesmom
Posted

Hello all,

I wrote a month ago that my daughters IGG test came back at 40 when the doctor said it should be under 11 and oculd possibly indicate celiac. We went to the pediatric GI. He was concerned about her weight ( she is around 20 pounds at 22 months). He ordered stool tests, urine, nutritional blood panel, etc...all of these came back normal. We wanted to do the biopsy - and we reluctantly agreed. There was no damage seen and the biopsy was normal.

So - here is my dilema. The nurse calls me last week with the results of the biopsy. She says everything is normal. I said - so you are sure it isn't celiac? She said that they are pretty sure based on her tests.

I dig further by asking about the blood work. In Sadie's original test she has the IGG(which was too high) and the IGA (which was normal). I thought there was a 3rd test called a ttg that should have been taken. The first doctor did not take it and apparently neither did the ped GI even though he took at least a gallon of blood from her. The nurse said that no ttg was ordered. She also said that she was surpised to see that no heredity marker (?) test was ordered.

So at this point - I am furious. Going through all of this. She said that she would order the ttg and I can go get more blood taken from Sadie.

It was my understanding that the ttg was a pretty good indicator of celiac. i am thinking that if that is positive (and then with the positve IGG) she has celiac even though the biospy looked fine. Is that correct? I guess what I want to know is if the ttg is important to get. I have thought about just putting her on the diet. But we've already done the worst (with the biopsy). And I am afraid that if I got her off gluten I would have to put her back on for the blood test.

What do you all think? Is the ttg test as important as I thought it was. I have also asked the doctor why the IGG would be elevated if not celiac. He said he was testing for all sorts of malabsorption and infection and found nothing.

I am extremely frustrated. I don't want to put her through more blood work if the results of the ttg aren't going to matter one way or another.

Thanks,

Amy

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ptkds Community Regular
ptkds
Posted

If I were you, I would just start her on the diet and forget further testing. That is what I have done w/ my older dd's. My dd #2 had one high number, but the "gold standard indicator" number was not elevated. But I just put her on the diet anyway since I have celiac disease and dd#3 has it. The diet is the best test anyway. I had my dd#3 scheduled for a biopsy but when I found out that I was positive, I decided that more testing wasn't needed.

With my dd#1 (who may not have it, but has all the symptoms) I have put her on the diet for 2-3 months, and then I will "challenge" her w/ gluten and see how she reacts.

Good luck and let us know how things go!

ptkds

happygirl Collaborator
happygirl
Posted

Amy,

the tTG test is usually the most indicative of Celiac. However, the fact that your daughter has symptoms and one positive blood test is highly indicative of a problem with gluten. In general, blood testing with young children for Celiac is not very accurate, so I don't think you can necessarily rule it out if its negative.

I had the same problem with doctors who know nothing about Celiac and run the older tests, etc. It is frustrating, but there are many who have been in your same boat, unfortunately.

i think its worth it to have the blood drawn and have the gene test done. just having the gene doesn't mean that your daughter has celiac, though. about 30-40% of the American population has the gene(s), but its good to know if you have it or not, to know if it could be a problem.

also-she may have non-Celiac gluten intolerance, which won't show up on blood work-and your doctor probably won't know anything about! After having the tTG done, it might be worth starting her on the gluten free diet and seeing if she improves. You don't need a doctor's permission to go gluten free. There are many on the board that don't have official diagnoses, but do considerably better on a gluten free diet.

Good luck, and hope this helps.

Laura

rez Apprentice
rez
Posted

GET THE tTG TEST!! Trust me, it's very specific and sensitive to Celiac. It's so frustrating that doctors don't know what tests to order. The tTG blood test is the best one for screening for Celiac. The genetic markers can only rule it out, not in, because you can have the gene and not have Celiac. It's a simple blood draw. I highly reccommend the tTG before you go gluten free or get it asap if you already are. My son's tTG still showed positive after 4 months off gluten. It is possible. Gluten free eating is a big deal and totally affects all aspects of a child's life. Everyone here is supportive, and I love that about this board. This is only my point of view. Just think, if it comes back positive, it will answer tons of questions. Good luck. I'm not saying it's wrong if you dont' get the blood test, but what do you have to lose. :)

rez Apprentice
rez
Posted

Sorry, forgot to ask the age of your daughter. Sometimes it's not that accurate in young children under 2 or 3. That is maybe why he didn't order it.

rez Apprentice
rez
Posted

Saw your daughter is 22 months. Sorry, on the test my doctor ran, anything above 7 was positive and for under 2, anything above 5 was positive. Hope this helps. :) We have a FABULOUS doctor! It's only our 5th try. He has Celiac himself and is very knowledgeable and understanding. Good luck and hang in there. We have learned the most about our son by journaling everything, taking pictures, and keeping a food diary.

chrissy Collaborator
chrissy
Posted

the Ttg may or may not show you anything because your daughter is already gluten free, and some very young children don't produce Ttg antibodies until they are older. my youngest was really small like your daughter is-----she was just about the same weight as your daughter is when she was around the same age as your daughter. she is still only 28 1/2 lbs. at 3 years 3 months. even though we know the test is not really accurate, we have had it run on her. we will continue to test our family on a regular basis until we get the gene test results. then we will only test the ones that carry the celiac gene. you can get celiac without the 2 known genes, but it is NOT very common.

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Ursa Major Collaborator
Ursa Major
Posted

Amy, with a tiny toddler taking blood IS a big deal, and traumatic. You had one very high reading. And she has symptoms. I would just try the diet to see if it makes a difference. Both your doctors sound ignorant and I wouldn't trust them to know what they're doing.

With very young children the tests are very unreliable (including the biopsy), and the diet is the very best test.

You will always still have the option of getting her tested with Open Original Shared Link. Their's is a stool test, meaning non-invasive, and far more sensitive than the traditional tests. And you can do them still within a year of being on the diet.

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