4 Yr Old Daughter, Positive Blood Test

[divamomma]

I recently took my daughter to the dr. I was concerned about her whiny behavior, crankiness, extreme tiredness, constant hunger etc. We decided to run some simple blood tests. The dr called me yesterday and said she tested positive for celiac and we are now being referred to a Pediatric Gastroentologist for a biopsy. I have been doing alot of reading and I am very confused. I never suspected my daughter would have celiac. SHe is tall for her age and a bit above average weight (75th percentile for both). I guess what I would like to know is how accurate is the blood test? I worry that the biopsy will be negative or inconclusive and leave me in a more confused state. If she has celiac disease I would like a firm diagnosis to move ahead. Is it likey she has celiac disease? SHould I assume the biospy will show some damage?? Any thoughts are much appreciated. Thanks.

[Skylark]

Which test was positive? There are a number of different celiac blood tests, some more specific than others.

[Lisa]

Celiac is also a hereditary pre-disposition. Do you or your husband have intestinal issues, depression, diabetes, fibro...Many times Celiac is a secondary diagnosis, and 20% of our off spring "may" develop Celiac.

Can you check on your family history?

And a welcome here!!! It's a great place to learn and feel your way around a difficult time.

[Mizzo]

On another note: You do not have to be underweight or below average height to have Celiac's. A good example is my daughter who was diagnosed after nearly 2 yrs constipation problems.

She was, and is, in the 98th percentile for wt and ht. In addition to being gluten free she is on a heathy lifestyle program for her high BMI.

Being in high percentile is not the norm for celiac disease but certainly not unheard of either.

[divamomma]

I think it was ATTG.....does that sound right? And a total IgA serum. There is not any known celiac but my dad does have diabetes. My family does have alot of unknown stomach ailments though.

[divamomma]

It was anti transglutaminase IgA

AND a total IgA serum.

[cassP]

I think it was ATTG.....does that sound right? And a total IgA serum. There is not any known celiac but my dad does have diabetes. My family does have alot of unknown stomach ailments though.

does your dad have diabetes Type 1 ? it's often linked with Celiac & Gluten intolerance. many of these autoimmune genes are linked.... many of us have additional autoimmune diseases as do some of our family members.

and yes- your daughter could have celiac but not be underweight or short.

good luck and welcome

[Skylark]

I think it was ATTG.....does that sound right? And a total IgA serum. There is not any known celiac but my dad does have diabetes. My family does have alot of unknown stomach ailments though.

In a young child, anti-TTG is quite specific for celiac. It is an autoimmune antibody. In adults it can also appear in rheumatoid arthritis and a couple other conditions but that's rare in a child. She definitely needs to be seen by a GI and chances very good are she will have a positive biopsy. Even if she doesn't have a strongly positive biopsy you should consider trying the diet to see if it helps her. Constant hunger is sometimes a sign of malabsorption, where the body is clamoring for vitamins and minerals that aren't being absorbed from food. Celiac will also make people tired.

I am celiac, tall, and normal weight. I was in upper height percentiles through my childhood, all the while suffering from anxiety, depression, and chronic stomach trouble that was labeled psychosomatic. Celiac takes all shapes and forms.

[divamomma]

I spoke with the nurse at the clinic today. Her level was 42 She said anything higher than 10 is positive and that her biopsy will likely be positive as well.

[sarmbpowell]

My 9 yr old son was diagnosed with Celiac Disease last February after two years of battling the symptoms. The diagnosis has done him wonders, and he is thriving now. The GI recommended I get my whole family tested. I had my 4-year-old daughter tested just to "rule it out." Her blood test came back a very strong positive. We had a biopsy done expecting positive results.... it was negative. I was so confused. We repeated all the original blood tests plus a new one, and they came back positive again. Then my 19-month-old was tested. One test came back positive and one was negative. It has been a roller coaster ride. Our pediatric GI says even though my daughter's biopsy was negative she still believes she has Celiac Disease. She thinks we just ended up getting the "healthy tissue" instead of the diseased tissue when they were taking biopsy samples during the endoscopy. Her opinion on my 19-month-old is that he does NOT have Celiac at this time but needs to be watched. I am so confused!!! I hope you get clearer answers with your daughter! Good Luck!

[dadneedshelp]

My 9 yr old son was diagnosed with Celiac Disease last February after two years of battling the symptoms. The diagnosis has done him wonders, and he is thriving now. The GI recommended I get my whole family tested. I had my 4-year-old daughter tested just to "rule it out." Her blood test came back a very strong positive. We had a biopsy done expecting positive results.... it was negative. I was so confused. We repeated all the original blood tests plus a new one, and they came back positive again. Then my 19-month-old was tested. One test came back positive and one was negative. It has been a roller coaster ride. Our pediatric GI says even though my daughter's biopsy was negative she still believes she has Celiac Disease. She thinks we just ended up getting the "healthy tissue" instead of the diseased tissue when they were taking biopsy samples during the endoscopy. Her opinion on my 19-month-old is that he does NOT have Celiac at this time but needs to be watched. I am so confused!!! I hope you get clearer answers with your daughter! Good Luck!

good luck getting answers clear my 15 yr old went threw hell for 3 yrs at one point they said she needed more grain fiber lol go figure. but such a hard diease to find i guess.my son was neg as well i think i have it but will just self test. gl all

[divamomma]

That is what I hope to avoid...more confusion. I hate the waiting part, this is all I think about now.

[Lunabell]

The waiting part certainly is the worst. The wheels of medicine do spin too slowly for us parents! My 4 year old daughter recently had a positive blood test, as well. I am still waiting for her ped to give me the copy of the test results, so I am not sure exactly what the numbers say. She has her first GI appt next week. She is not underweight either, but she is shorter than most people in our family. Not that we are all that tall to begin with!

Good luck working through the process. We have decided that regardless of what the biopsy says that we will be going gluten free here. Anecdotally, if my daughter has gluten, she is in pain. When she doesn't, she is fine. Between that and the blood test, I have enough information to make a decision for her. I figure it will actually be a healthier diet.

[divamomma]

THanks for all the replies. It certainly helps hearing from other people in similar situations. I think it is hard to ignore the positive blood test. We will likely go gluten free no matter what the endoscope says but it would be nice to have a clear/firm diganosis. My 6 year old daughter and myself had blood tests yesterday so we will see what those show.

[salexander421]

THanks for all the replies. It certainly helps hearing from other people in similar situations. I think it is hard to ignore the positive blood test. We will likely go gluten free no matter what the endoscope says but it would be nice to have a clear/firm diganosis. My 6 year old daughter and myself had blood tests yesterday so we will see what those show.

I think it is a good idea that you and your 6 year old went ahead and got tested. That way, if either of you test positive too it will help clear up any gray area's with your other child. Our daughter is going through a gluten challenge right now so we can have her retested, we found out she has one of the genes for celiac. Me and my husband are going tomorrow to get tested to see if either of us have it. I'm thinking if for some reason her test comes back inconclusive but one or both of us have it that will help the process. Hope you get your answers!

[divamomma]

Thanks again for the responses. My older daughter, my husband and myself all tested negative for celiac. (the TTG IgA test was normal) My daughter is scheduled for a pre op physical next week and we are still waiting for a date for the biopsy/scope. My dr said she had only ever had one patient who was positive for celiac come back negative on the biopsy. She is fairly certain she will be positive.

Waiting has been very hard. My emotions are all over the place. One minute I feel so devastated and get teary, one minute I am like OK, I can handle this and we will manage. I just need to be able to move on!