To Biopsy Or Not To Biopsy...

[Olivia+Alainas*Mom]

Hello All,

About 3 months ago my now 6 year old Daughter (Olivia) started having bad stomach's with fowl smelling diarrhea, red face, leg pains. In the middle of January I took her to her Pediatrician and they ran some blood tests for food allergies and Celiac.

The food allergy test results came back first and they showed an allergy to:

Egg White 1.24 (Normal is less than .35)

Milk 8.85 (Normal is less than .35)

Soybean 1.09 (Normal is less than .35)

Wheat 2.39 (Normal is less than .35)

IGE 2,590 (Normal is 0-40)

Complete Metabolic Profile = All normal

Complete Blood Count = All normal except Reactive Lymphs 1 (Not sure what normal is)

They than referred us to an Allergist / Asthma Doctor. He did 82 scratches on her back that showed a possible Milk Allergy and then did 14 addition needle pricks on her arm to verify the Milk Allergy (which she does have). The Allergist than told us that it was strange for a milk allergy to appear at 6 years old since most kids outgrow it before then. He told us to eliminate milk for a month and the recheck with him. He did not tell us to remove whet because he said it wasn't a very high allergy. As a side note due to Olivia's long lasting cough after a cold and the fact that she coughs after running he gave her a breathing test (She passed) and put her on Flovent. We later stopped the flovent because it caused her to have TERRIBLE nightmares. Her Asthma wasn't bad, it did not effect her quality of life and she has never had an asthma attack or problems breathing.

On the way home from the Allergist our Pediatrician called with the other test results:

IGA = 141 (Normal is 60-350)

Transglutaminase IGA Antibodies = 80 (Normal is less than 19)

Endomysial Antibodies = Positive (1:40)

He then told me to take her off wheat completely and he would try to get us in to a Pediatric Gastroenterologist , but that he had heard they we scheduling in August!!!! Well long story short a friend of mine is a Nurse Practitioner at the very same place they were sending us (Helen Devos Children's Hospital in Grand Rapids, MI) and she was able to get us in today (My Daughter's Birthday!). We met with her and the Gastroenterologist and they concluded that she probably had celiac based on her labs, but they wanted to do the biopsy just to make sure that there is nothing else going on.

Sooooo, my question is this (And I know the response is going to be 50/50) should we have my Daughter get the biopsy just to see if the Celiac diagnosis is correct and to make sure that nothing else is going on? Also has anyone had all blood tests positive but had the biopsy come back negative?

Her biopsy is set for March 6th. Any advice you have would be appreciated.

Thanks,

Katy

[Jestgar]

Sooooo, my question is this (And I know the response is going to be 50/50) should we have my Daughter get the biopsy just to see if the Celiac diagnosis is correct and to make sure that nothing else is going on? Also has anyone had all blood tests positive but had the biopsy come back negative?

Her biopsy is set for March 6th. Any advice you have would be appreciated.

Thanks,

Katy

The Celiac diagnosis is correct. The blood tests are accurate. The biopsy is to show how much damage has been done. Even if the results show no damage she needs to stop eating gluten.

As for wanting to look for 'anything else going on' that's your call...

[Olivia+Alainas*Mom]

The Celiac diagnosis is correct. The blood tests are accurate. The biopsy is to show how much damage has been done. Even if the results show no damage she needs to stop eating gluten.

As for wanting to look for 'anything else going on' that's your call...

Thank you so much for your response! I appreciate it. I also wonder what else they think might be going on too?

[Jestgar]

Thank you so much for your response! I appreciate it. I also wonder what else they think might be going on too?

My guess is Nothing. But unless they look, they can't say that for sure.

[sandejosgirl]

I wanted to add my two cents as a mom who wasn't going to biopsy.

I have 3 kiddos, my oldest turns 5 in May and all have GI issues. We were just thinking celiacs until some funny bloodwork turned up the possibilty of IBD, which is a disease that can happen in conjunction with celiacs. After considering the possibility of having to have my kiddos scoped both ends, suddenly the endoscopy didn't seem so bad.

I also spoke to a couple of moms who had the endo done and said that they were scared too, but the hardest part was the IV!!

We just saw the Ped GI for my baby (13mo) who confirmed her symptoms are celiacs with no outlying symptoms that might indicate other issues. We will not be scoping her.

My oldest daughter and my son's apts are at the end of the month but we talked briefly with the Ped GI at my babe's apt about them.

My babe's symptoms are all classics=no reason to scope.

My oldest is still having blood in her stool gluten-free for 3 weeks=could be celiacs, could be celiacs +??? IBD?

My son's symptoms are still improving gluten-free=wait and see.

I really liked the Ped GI, down to earth, knowledgable, and wasn't scope-happy! I.e. he didn't want to scope the baby w/o further complications cause of her age and the clarity of her symptoms. But said if there was a question about the diagnosis, he would want to scope an older child.

So now?? I think that we will be scoping our oldest to make sure that she isn't having IBD or other stomach/GI issues on top of gluten sensitivity/celiacs.

Wishing you all the best,

Stephanie

mom of 3 gluten-free kiddos

[mimommy]

This is a very difficult decision for a parent to make. You are fortunate that you have already reached a positive for celiac in the bloodwork--this took us a long time and many rounds of labs to get to for our 8 year old. My feeling on the biopsy is this--up until last month I completely regretted letting the GI do it because the results weren't positive. Not positive until last month--when we had a new GI and a different pathologist review it.

Know this--the results of the testing and biopsy depend greatly on who is interpreting them. Do you trust your doctor? What if the biopsy is negative--will it affect your choice to remove gluten from the child's diet? If I had it to do over again I would not have done the biopsy. I would have simply put my child on a gluten free diet and witnessed the miracle of healing without the trauma of a procedure and danger of anesthesia. It is your choice--consider all factors carefully and know that changing the diet will effect the outcome (both in your child's health and in the test results.) Wishing you and yours the best--let us know what happens.

[ek327]

My daughter, 7, had the biopsy this summer after a very mild positive ttg and endomysial antibody. With my history of DH, I knew with the positive antibodies, that she had celiac. I opted to have the endoscopy done for definative diagnosis. Until antibodies alone are accepted as diagnostic, getting the actual diagnosis the standard way is a good idea. Emma, the daughter, was NOT traumatized by the endoscopy. We had it done at a pediatric surgery center, and they were wonderful. I was able to stay with her until she was asleep--gas. All bloodwork and IV's were put in after she was already out. She did great, and we have a definative (by medical standards) diagnosis.

[The Kids Folks]

Our 7 yr son's blood work was negative (although I still question whether or not our peds did the full panel). He had slow growth for years, bloating, gas and constipation. It wasn't until this last year his growth fell off the charts that I was able to convince our doctor that something was going on. She continued on the path of let's just treat the symptoms or well I guess that's just the way his body is made - meaning that a kid who loves brocolli, apples and raisins every day, a couple times a day still needs to take RX FIBER for C. I asked about the diet and she said that it is very difficult to follow and didn't think that we should. She sent us to a ped GI who also thought that treating the symptoms, but not trying the diet was the way to go. He too prescribed more medication for our son. We watched DS over a period of weeks, become sicker and sicker. Both thought that after we try treating the symptoms for a while - then maybe we should look at restructing his bowel????? Or at the very least we should biopsy. We finally said - NO MORE MEDS, no more medical intervention!!!. We went gluten free and have never looked back.

When I told the peds that we weren't going to go with the biopsy and that we were no longer on meds, and to take a look at him and see that he is thriving and growing and happy - she got really quite pissed - Needless to say we are now looking for a new peds and will not be going back to that ped GI.

If we hadn't seen the results that we have, we would have (and will still if there is a change in his health) go further with a scope or other medical invention if necessary.

But for now he is growing and eating us out of house and home now. Its quite cute, He loves super heroes and he has become some type of Wheat and Gluten Avenger!!

The Kids Folks

[NewGFMom]

This is a super personal decision... but I'll tell you what we did.

My son had the ELISA panel in June of 2007 and all the numbers were WAY out of the range of normal. He wasn't particularly sick, but he'd been complaining of stomach aches and was spending way too much time in the bathroom.

A very dear friend has celiac and I've been cooking for her and talking to her about it for almost 10 years so I felt pretty comfortable that I knew what to do and I pulled the gluten before we went to the gastro.

Of course HE wanted us to "make him as sick as possible" put him back on gluten and do the biopsy. Honestly it wasn't the biopsy I objected to, it was the putting him back on gluten.

So, I went to go see his boss (the head of the celiac group at Children's Hospital in Boston) and felt based on the blood work and the positive response to the diet that we were dealing with a celiac child and that was that. They have been caring for him every since.

Your child's blood work with at TTG of 80 is pretty definitive for celiac. There's a bunch of other tests that a GI will run to make sure the TTG antibodies arent' due to anything else. But it might be nice to know if you're dealing with something else if you get the biopsy.

My husband had a biopsy due to some questionable celiac bloodwork and was awake and eating my breakfast sandwich within 10 mintues of waking up. So it doesn't seem like a terribly invasive proceedure.

Best of luck with your decision!!