20 replies to this topic

[Mom22]

I got a call from my daughter's pediatric gastroentrologist that her biopsy results are inconspicuous. Some of the villi are damaged, but others are fine/negative. They want her to start a gluten-free diet for 3 months and will rebiopsy in August. If the 2nd biopsy shows negative because she is on a gluten-free diet, then she does have celiac. I'm very confused by this. I thought you either were or weren't, not probable. I had prepared myself for a positive result and now feel as though we are on the fence. Our 9 year old son is positive for celiac via biopsy and our daughter was first tested by blood tests and her IGG/IGA/TTG were all positive. Then we get the biopsy results and I am feeling confused and overwhelmed. My husband's blood tests were inconclusive as positive IGG/IGA and TTG was negative. They have just done an HLA test and we are awaiting the results of that. Any insight by anyone would be greatly appreciated.

Mom 2 2

[gf4life]

Some of the villi are damaged

Hi Mom 2 2, If ANY of the villi are damaged and her blood test results were positive then she does have Celiac. The damage is often spotty and you are very lucky they did biopsy a damaged spot. Your doctor is being conservative when he says she might not have it. Just put ther on the diet and they will most likely see a full recovery in her villi during the next biopsy. You should also see relief of symptoms in her as well. It will be easier for her since others in the household are also gluten-free. Try not to feel overwhelmed. You are doing the right thing for your children.

God bless,
Mariann

[Mom22]

Mariann,

Thanks for your quick reply! This is all so new to me with our son being gluten-free for 6 weeks now and anticipated a call that she was positive. I am just concerned about putting her through another biopsy since she is only 4. She wasn't real thrilled with us this past time around.

Mom 2 2

[gf4life]

You could always try getting another doctor to go over the test results. A second opinion might make a difference. If the other doctor says it is positive, a second biopsy might not be necessary. I would check around for a doctor more experienced with celiac disease and heve them reevaluate her tests results.

God bless,
Mariann

[Mom22]

Her specialist is the director of the pediatric gastroentrologist dept at a major medical hospital/university in Pennsylvania. I don't know that we could get anyone with any more expertise in our area/location. I feel as though we've been on an emotional roller coaster in 2004 with our son, daughter and my husband. I'm just ready to get off the ride. I feel as though I'm unravelling and I am typically a very strong person, but I know we'll get through this. Thanks so much for your responses and to Jessica too for her response.

Pamela

[lovegrov]

In my opinion, for what it's worth, three positive tests and any damage to the villi means celiac. In fact, I seem to remember that three positive tests equals better than a 98 or 99 percent chance it's celiac disease. All the biopsy means is the damage isn't bad enough to flatten all the villi -- at least not yet.

good luck

[ryebaby0]

We're also in PA -- where are your peds GIs working out of? The HLA tests are usually sent to Philly and will take until the next "cycle" of testing (they do them in batches so it could be a while). If her HLAs are _both_ negative (DQ2 and DQ8) she can't have celiac; it's much more likely that her biopsy just didn't catch a lot of damage. I would resist having another biopsy so soon, since it wouldn't really change her treatment plan and her blood tests are positive. Doctors tend to think of scoping people as a routine sort of thing that isn't worth worrying about, so sometimes you need to ask if it's absolutely necessary, or if it could wait a few months.

[Mom22]

Penn State Hershey Medical Center. Our daughter has not had the HLA blood test, just the IGG/IGA/TTG, which were all positive. I'm not thrilled with the idea of a rebiopsy.

[kyss]

Hi Mom22,

I read your post and it really touched me. I am sorry things aren't going that great for you. I do have a similar situation with my daughter and I am alittle upset about it. My daughter had her biopsy and the GI doc said it was inconclusive, there were patchy spots... The GI doc said this just means there may not be damage to the entire intestine yet. So I was waiting for the blood test results that had been drawn while my little one was out for the biopsy, but I found out today though that this same GI doc didn't request the TTG IGA test...only a CBC from which he said she has anemia, which I already knew. So now I have to have her go through another blood draw for the TTG IGA...but can anyone tell me what an HLA is? Should I request that be ordered too?

I don't know if I am much help to you, but I hope everything gets better soon, you and your family are in my thoughts and prayers......

Kelly

[gf4life]

HLA is the gene test. HLA-DQ2 & HLA-DQ8 are the two main genes for Celiac. There are also lesser genes for gluten intolerance, but most doctors don't test for them.

God bless,
Mariann

[Mom22]

Thanks to everyone for all of your replies as they have been extremely helpful.

Kelly: Regarding the HLA tests: The HLA (human leukocyte antigens) types DQ2 and DQ8 on chromosome six are necessary, but not sufficient for developing the condition. In other words, with these two HLA types, someone has a strong genetic predisposition to develop celiac disease, but the predisposition alone is not enough - there must also be a trigger of some sort. However, most people who have these genes do not have celiac disease, or have not yet developed it. If someone does not have the DQ2 and DQ8 HLA types, it is about 99 percent sure that they will never develop celiac disease. For that reason, genetic testing is a good way to rule out the condition in questionable cases, but is not a positive predictor of the disease.

ryebaby0: Let me know if you don't get a response from me.

Today is another day and I am doing better!

[Mom22]

I just wanted to share an update of what I did. I took matters in my own hands today and called the University of Maryland. I had called to see if we could get an appointment for a second opinion since our daughter's biopsy results were inconclusive. They will reread her biopsy slides and will obtain them directly from the hospital here where they were done. Thus, we could possibly avoid a second biopsy for our daughter. We had the opportunity to hear Dr. Allesio Fasano recently speak at our Celiac Support Group and were extremely impressed by his presentation on celiac disease and all the up to date research they are doing at the University of Maryland. They actually train pathologists from all over the United States who come there for training on how to read biopsies. Thank you to everyone for your posts of encouragement.

[gf4life]

Good for you!!! I am looking forward to hearing what they say.

God bless,
Mariann

[ryebaby0]

For a man who is so "famous" , he is awfully accessible. He was speaking at the hospital my son had just left, and met after the seminar to talk to Patrick's doctors about his case. I think he has made it his business to meet every peds GI doctor he can. (I had emailed Dr. Fasano directly early in Patrick's rather complicated and mysterious case) He seemed genuinely interested in helping figure out what was going on.

Good for you for getting the biopsies re-read! Trust your mommy-radar and let us know how it all turns out

Joanna