Biopsy Results.....

[averyevansmom]

My 3 year olds gi called today and told me pretty much useless information, and otherwise scared the crap out of me. He said there was inflammation in the duodenum. That's it. I asked what that indicated and he said he was not sure and wanted to run further testing for giardia and cystic fibrosis. Talk about about being scared. Is this common? Does anyone know any other symptoms of cf other than the well known lung ones. I'm sick over this. I've put in a call to the doctor who performed the biopsy and my sons pediatrician. He also told me he does not have celiac. Because my son was anemic a month ago, he says he is not absorbing and we need to find out why. I know just by my sons behavior that his iron levels are better. My sister has a very mild form of Thallasemia and it is genetic. It's possible my son has this type of anemia. The body just does not absorb iron like most people. I mentioned this also to the biopsy dr. The gi will be performing stool tests tomorrow as well as sweat chloride. I'm so scared. My husband suggested we just put him on the gluten free diet and see how he does. We have a second opinion at Boston Children's Hospital the 27th of this month and an appointment with Dr. Cheney at the Celiac Center at Beth Israel in Boston May 31st. I'm lost.

Becky

[Guest nini]

since you've already done the biopsy, it won't hurt to try the diet... I'm serious. You do not need a Dr.s permission to go ahead and put your child on the gluten free diet and see if it makes a difference. It won't affect any other testing they might want to run since they aren't looking for Celiac anymore. It could be that gluten is contributing or causing the problems, but it won't neccesarilly show up on tests. If it does make a difference you should start to see progress in a few weeks time... but give it a good 3 to 6 months before you decide if it's working or not. Good luck!

My daughter was very anemic at her 3 year check up, I forget all the other things they wanted to test her for, recurrent bladder infections being one of her many ailments... and allergic rhinitis... they preferered to put her on medication than to try the diet, even after I was positively dx'ed with Celiac... Gluten is a toxic grain and is contributing to a great many health problems besides Celiac... so, do yourself and your family a favor and try the diet.

[Nantzie]

I agree. Going on the gluten-free diet may make a difference, even though the tests were non-positive. Celiac is difficult to diagnose, even with biopsy because the damage is very patchy. Since the damage is microscopic, doctors can't see it when they do the endoscopy, they don't really know where there might be damage. So it's very easy to miss damage that might be there.

But it's possible that she might be reacting to gluten, but not have celiac at all. There are several of us on this board who don't have the intestinal damage that = celiac, but we have very intense reactions to gluten nonetheless. (See my signature for some of my symptoms.) The only way to know if gluten isn't an issue is to try the gluten-free diet for several months to see if there is an improvement.

I think that food intolerances in general are overlooked, and is an area that I would encourage you to explore. Other common food allergies or intolerances are soy, dairy, corn and eggs.

I also found this page on cystic fibrosis. Open Original Shared Link

I hope your daughter starts feeling better soon.

Nancy

[Rachel--24]

I agree with your husband and everyone else. Try the diet for awhile and see if it makes a difference. Biopsies give alot of false negatives...also it could be gluten intolerance rather than celiac but the symptoms can be just as severe as Nancy already mentioned.

[averyevansmom]

Hi everyone and thanks for the replies. You're all going to think I'm nuts but after the doctor called and said he wanted to test for cystic fibrosis and I did some research I licked my kids after they had been playing to see if my little guy was saltier than my daughter. I don't know if that indicates anything. Just an act of desperation I guess. Everything I've read about it suggests fatty mucousy stools. My sons stools are watery, and pasty only. Sometimes grainy or sandy. Never with mucous. He's not potty trained so I don't know if they float. As I said in my earlier post he has never had any breathing problems associated with what you read about CF. We've decided to start the diet on Sunday. We will pick up everything we need this Saturday and clean out the cupboards this weekend of all the gluten stuff. I just bought a book at the library called "Kids with Celiac Disease" by Danna Korn. Anyone know anything about it? I don't mean to keep harping on the CF thing but if anyone could throw me a bone regarding more conclusive GI symptoms, I'd appreciate it.

Thanks,

Becky

[Nantzie]

LOL! I totally would have licked my kids!!!! And my husband, and myself too. I was thinking about that when I read that page too!

Nancy

[averyevansmom]

Whew!!!!!!! Glad you don't think I'm a weirdo for licking them. I told my husband and he didn't seem at all surprised. I even licked my own skin. What's a worried parent to do.

Becky

[Becky6]

The Gi tested my daughter for Cystic Fibrosis as well but she really didn't have any of the symptoms. The test came back fine as well as her celiac panel. I was told she was lactose intolerant. We stopped the dairy and got some improvement but not enough. We then tried gluten-free and she is doing great! Just try the diet it can't hurt! Good luck!

[averyevansmom]

How long does it take for the CF results to come back? I know I'll be sick over it until I hear back from the doctor.

Becky

[Becky6]

I t depends on where you have it done and if they need to send it out. I think it took a week for that one and it was done at the hospital. But I could tell by the looks on the nurses faces that it was ok. They put these things on their arms that look like watches so they will sweat. Belle did not like it! What other symptoms is she having? Belle really had no symptoms of cf but they said they have to rule it out. Hugs!!!

[averyevansmom]

From what I've read he's having none of the symptoms. He has chronic diarrhea and other than the biopsy results of inflammation in the duodenum (which is common in celiac) and has never had mucous in his poo. Although he is anemic. So he is thinking malabsorption, hence cf. Only symptom, and a very slight one at that. Thanks for the hugs. I'm going to get a copy of his biopsy report today when I see the doc. Hopefully he doesn't give me a hard time.

Thanks

Becky

[Becky6]

The anemia would also be celiac. Belle was anemic and she also had a chronic runny nose and sinus infections. She had leg aches and was not gaining weight and horrible bm issues. Don't worry I think they are just doing the cf test cause they have to rule it out.

[averyevansmom]

I'm downloading IM on MSN right now but I have dial-up since I live in the sticks so DSL is not yet available so it may take awhile. But I will get back to you when it is done. Then we can chat more. Are you a stay at home mom, and when is the best time to reach you on the computer? My sons appointment is this afternoon so hopefully I will have understood the doctor and his reasonings a bit better after our visit. He's hard to understand over the phone, a little bit of a language barrier. I'll keep you posted.

[Becky6]

Nope I am at work, but am on the computer all day so check in through out the day when I am in the office.

[averyevansmom]

Thanks everyone. We went to the hospital yesterday for the CF test and the stool sampling and because my son had gained weight and otherwise looked healthy, the doctor "did not" do the CF test, so I was basically sick over it for nothing. I wanted to strangle him. My husband told him we were going to start the gluten-free diet Sunday to see if it had any impact on him since they could not explain his chronic diarrhea, inflammation in his small intestine, anemia etc. He basically told me not to. Without any explanation. We are anyway. I know it's not going to hurt him. The only thing from the biopsy was inflammation of the duodenum. Nothing else. From what I've read, it's possible they didn't take tissue from the damaged part of the small intestine because the villi are so microscopic. I asked about IBS, Colitis, everything. He had nothing for me. Tuesday of next week I have an appointment with a doc in RI whose name I got off a celiac board. James Murcaddo, MD. Has anyone dealt with or heard of him before I travel an hour to be disappointed.

Becky

Bubba's Mommy

[chrissy]

our ped gi mentioned inflamation of the small bowel as one of the things you would see with celiac.

christine

[Rachel--24]

My husband told him we were going to start the gluten-free diet Sunday to see if it had any impact on him since they could not explain his chronic diarrhea, inflammation in his small intestine, anemia etc. He basically told me not to. Without any explanation.

I can never understand why doctors are so reluctant about this. Whats it to them anyway? Its a healthy diet, could possibly be the answer to your childs health problems, there are no side effects to worry about and its free. I bet if it were *their* child they wouldnt be hesitating to try the diet.

[averyevansmom]

You know, I don't understand doctors much either. Seems the more I deal with them, the less I "get" them. I am starting the diet regardless. He's my child and it is a healthy diet. As one of my relatives said, (who by the way, works for a pharmaceutical company) it's not as though I'm putiing him on an exprimental drug without a doctors supervision. This is totally asinine that they advise parents not to try this gluten-free diet, and wait and see if their condition worsens over time and if so give them a call before the childs next follow up. Well, I don't know about you, but I'm not about to wait around and do nothing and hope the diarrhea he's had forever just miraculously disappears, and his tummy aches stop. His gi said the diarrhea is normal. Mind you, he takes powder laxative everyday and sometimes it's water and somestimes pasty. (sorry so gross) And the stench. Gas mask city. Have you ever heard of such a crazy thing? His pedi and my husband and I obviously don't think so.

Our agenda for the weekend is to stock the house with gluten-free food and begin anew monday. Of course there are always things to do in between. Birthday party, Patriots tonight, helping a friend tomorrow, thank goodness Monday is a holiday here. Wondering if I should cancel Tuesdays appt. with the Celiac doc in RI, (haven't gotten any feedback on him, and he's an hour away), have a go with the diet, go to our appt. at Boston Chidrens on the 27th, and to the Celiac Clinic appt in May if he responds to the diet. What do you think?

Becky