Biopsy Negative For Cd

[arismama]

I think it's been a while since I updated post-scope, so here goes.

Biopsy came back showing heartburn, no signs of Celiac.

Daughter had a check up the other day with a new ped and after going over virtually all of her history, they put in for a sweat test to check for Cystic Fibrosis. I think I would have been more relieved if they said it was celiac disease instead, but hoping for the best still. The idea of CF hasn't quite kicked in and I sure hope it's not the outcome, but it would be a start to getting treatment.

Thanks to all for your help with my Celiac questions and for your support during this time of uncertainty.

Jen

[celiac3270]

Did bloodwork test positive? If so, there's still a great chance of celiac. If not, then the chances are extremely slim if any such chances exist, but thanks for informing everyone here.

-celiac3270

[KaitiUSA]

Yeah I agree if there was blood there is still a pretty good chance you have celiac disease. Biopsies are good but if you don't have much damage to the intestine yet it can miss it. Good luck

[pwalasik]

I hope your daughter does not have CF. I also went through the sweat test with my daughter and it is a nerve wrecking few days waiting for the results. Unfortunately biopsies or even blood tests can't be deifinitive, especially in children. Sometimes as parents we have to go with our instict despite medical advice. How does your daughter do on a gluten-free diet? That may be the "golden test" for now. I wish you the best.

[Joan]

I will pray for your child not to have CF. We had to have the sweat test also when my daughter was two after her 3rd bout of pneumonia. I was worried sick and waiting for the results was terrible. They don't think my child has celiac disease and the sweat test was negative. I posted here because of pale stools but the past week she hasn't had them after having them for 8 months. Let us know how the sweat test goes and know that you will be in our thoughts.

[Happycat]

Hi Jen,

My son is 19 and suffered for about 5 years with nausea, vomiting, heartburn and very bad gas (burping constantly!!!).

He is Iga deficient (10 percent of celiacs are) and his IgG was positive at 115 (over 20 is positive). He was sent from doctor to doctor and had a negative biopsy in July and many other tests. He does have severe damage to his esophagus due to the chronic heartburn. He was put on every med available and nothing worked.. Still the doctors said no it's not celiac. I thought well it may not be celiac but it may be gluten intolerance. They all said you can try the diet but it is a very hard diet and discouraged me from wanting to put him on it.

He was willing to try enterolab and I THANK GOD we did because EVERYTHING came back positive. He doesn't have the gene for celiac, he has 2 copies of a gluten sensitive gene though.?? whatever that is.

Today after having heartburn 24/7 and burping probably every 30 seconds during a conversation, my son is sooooo much better. I can not tell you how happy I am that my son feels human again! No more burping, no more vomiting and heartburn 80% better!! This just after 2 months on the gluten-free diet!

I hope this helps!

Lisa

[Boojca]

Jen,

I am not really sure what to say. I read your previous posts, and honestly I think I'd push the celiac disease/food issues more. If the intestine looked "ragged and red" then there's something wrong there. A biopsy is not always an accurate "test" for celiac disease bc they can miss the damage, even with multiple "snips". Do you know what blood tests your doctor ran? The TTG test is the most accurate, and there are only a few labs in the country that run it so the blood must be sent out. If your doc didn't do that test, and your child isn't already gluten-free, then I'd say make him do that one.

Bridget

[SofiEmiMom]

At 14 months my youngest daughter had the biopsy which was negative. The doctor suspected cystic fibrosis, so she had the sweat test - came back negative. I was so scared and nervous about the CF test, so I know how you must be feeling. After all of these tests my daughter was still very, very ill (12 diarrhea diapers per day, never sleeping, always crying). I was willing to try anything so I had her tested through Enterolab and she came back positive for gluten intolerance. Within 5 days of going gluten-free - she was fine. It was miraculous. Despite her unbelievable turnaround the pediatric gastroenterologist said she isn't gluten intolerant...maybe, just a wheat allergy, but I doubt it he said. My pediatrician, thankfully, supports the gluten intolerance diagnosis. She saw how sick my daughter was and how healthy she became after going gluten free. I'm thankful that I decided to follow my instinct and keep my daughter on a gluten free diet.

My thoughts are with you. Let us know how things turn out.

[arismama]

Thanks everyone for your input. Regarding the bloodwork, I don't know exactly what was tested - all I know is it was a Celiac panel and the GI said that the levels that showed elevation were common in 25% of the population. In other words, he seemed to think it wasn't red flag material. I'm not sure if that was IGA, IGE, etc. He is going to see us in a few weeks and has us doing a food diary in the meantime. (Man, I hate those things!)

We had the sweat test today - 2 tests, in fact. My daughter produced zero sweat (even with 2 layers and a thick coat, running around) so the results are inconclusive. The technician said they might have done a newborn screening or prenatal screening on us, so I called my midwife's office and they said it wouldn't have been done if CF isn't suspected. The NICU at the hospital where she was born doesn't do CF screenings routinely, either. So...I have to wait to see if they'll do DNA analysis to at least check if she is a carrier or what. Not sure what all they will find out with the blood work.

I think if CF isn't the case, we're definitely going to talk more about Celiac, at least gluten sensitivity. I told the GI that even after a few weeks on Prevacid, she didn't seem to be a happy child. He thinks it is food allergies and I although I work very hard to keep my daughter from getting "contaminated" I end up second guessing myself because her skin flares so often. (Then again, I have eczema and no known allergies, so who the heck knows?) Sure is frustrating.

Well, thank you again for all your help. I think I may print out the thread so I have something for the GI to see. (Don't they love it when we do that?! lol)

Jen

[Joan]

Hi Jen, I just want to make a suggestion. I always ask for a copy of the test results anytime anyone in my family has a test done. This way, you see what is going on and you have the tests results to take to specialist etc. The doctors are always happy to mail you a copy when they get the results. Also, if there is a problem I can look up details on the web and find that many times if is much more informative than the doctors explanation. Good Luck finding help with your child.

[Boojca]

Jen,

That may be what the person answering the phone at the ped's office said. But I also know that I have a friend that is a doc and she HATES it when her desk people "answer questions" they have no business answering. That said, they tested my son for CF too. The sweat test as well. The reason? We had the blood drawn for the celiac disease test and while that was out they wanted to do ths too just to rule it out so we'd be that much further ahead when the celiac disease test came back, if it came back negative. And my doctor told us flat out he would've been shocked if it came back negative, but he still wanted to do the CF test just in case. So, no, they don't do them "routinely" but they do do them when it could be one of the diagnosis. I mean, for crying out loud. They don't do MRI's "routinely" either, but I know a lot of people (including myself) who have had them simply to rule things out even though the doc was confident there was nothing wrong.

The moral of this story? Don't listen to people who answer the phones at doctors offices and hand out advice and don't worry about this test being run. Seems to me a lot of people here have had it run (and come back negative) for it to not be a "routine" test!

Bridget

[Mayam]

Hi,

I agree with the 2 previous posters. I would ask for a copy of the results. My second daughter had one positive test and two negative (I can't remember which ones and have since misplaced the copy of the test), but when I called to get the results the pediatrician's aide said the tests were all fine. After requesting a copy and seeing an elevated result I asked for a referral to the ped GI. He told me that anything elevated looked suspicious and he did a biopsy. Her biopsy came back negative, but I consider her inconclusive. For one thing she was not quite two which could mean minimal damage to her villi, and I'm not sure if he biopsied more than one part of her intestines. I also believe that something is not quite "normal" if one of her test came back elevated.

Myself and my oldest daughter also have celiac disease and I have found that most GIs are not very knowledgable about celiac disease. Therefore, I have made the choice to put my daughter on a gluten-free diet. When she is old enough to decide if she would like to eat gluten, then she is welcome to. We will deal with the negative results, if any, at that time. I also have a 5 mo. old son who I will keep gluten-free until he is older. I just can't feed my children gluten when they have a genetic tendency toward celiac disease, knowing I could be making them sick and affecting their development.

If you never get a conclusive result you may just have to decide to keep your child gluten-free and see what happens.

Good luck!

Rachel