Doctor Unsure

[Kailynsmom]

Hi guys,

It's been a while since I've been on here. But i thought about the board tonight and wondered if you more knowledgeable ones out there could shed some light here's the scoop.

My daughter, Kailyn, has always shown signs of lactose intolerance. Extremely colicky baby, refused to sleep, reflux, lactose intolerant. Around 18 months, began waking during night screaming saying tummy hurt. A month or so later, it was legs and tummy. After a few months, I took her to her GI dr, who had seen her as an infant for her reflux. He suspected celiac. Blood tests (genetic was positive for a celiac disease gene, TTg was normal, but anti body (oops, forgot name of it) was high. Dr said when antibody is high it can skew tests, also she was young enough that he suspected tests might be wrong. July of 2005, biopsy showed no evidence of celiac disease, but dr still seemed confident that was the problem. THe day we left the hospital Kailyn went on a gluten-free diet. Between July 2005 and December of 2005, Kailyn jumped from 15% in weight to 60%!!! Anemia went away, began gaining weight, stopped complaining of tummy aches within a week or so. She even eventually stopped saying her legs hurt (dr said it was vitamin deficiency.) We went back to dr last month and he had repeated blood tests, (though not antibody one this time). The tests were still normal.

AHHH!! By this time, he says he doesn't care what the tests say, she's doing great on gluten-free diet. I don't so much care about her with diagnosed as celiac disease, but need to know if anyone else has been there. He told me to do whatever i thought was best for her. I told him i needed him to issue dr orders, because her father's side of family (we're divorced) is extremely hostile, and the celiac disease is on their side of the family. He told me to resume a regular diet.

In the last 6 weeks, Kailyn seems ok. She doesn't complain of tummy aches, doesn't appear to be losing weight, though i haven't had her weighed at gi dr's office since. She is however, waking up a night screaming a lot again.

Kailyn has always been, uh,...."high need" (READ: high maintenance.) I'm having a hard time convincing myself that the dr might be right to still think it's celiac disease and not just a personality thing. We go back in 5 months for a reevaluation.

I just am wondering if anyone else has had similar problems. I'd appreciate any ideas or suggestions.

THANKS!!!

[Guest BERNESES]

I think you have your answer- she has the gene and a very positive dietary response. That is plenty. That's all I have to go on- biopsies are sketchy as is blood work. Do what makes her feel good and don't worry about your husband's side of the family.

[AndreaB]

I haven't had any experience with this as I had the family tested by enterolab. It is a much more precise test since it tests stoo. If you can swing the money, it would give you the necessary proof that she is gluten intolerant and needs to be gluten free. Open Original Shared Link for enterolab's website.

[lovegrov]

I'm not a doctor but it sounds like she has celiac disease. She has the gene and her antibodies were high. She improved enormously on the diet. That's enough for any celiac expert to say she has it. The tests after she had been gluten-free mean absolutely nothing whatsoever because she hadn't been eating gluten.

IMO, she needs to be gluten-free.

richard

[mouse]

Please listen to your Doctor, when he said she has Celiac and keep her gluten free before some long term damage is done. It sounds like you have a great doctor. Tests on children under 5 our not reliable and are not always reliable in adults. Her improvement on being on a gluten-free diet says it all.

[Guest nini]

listen to your Dr., he sounds like he knows what he's talking about. Tests on children are extremely unreliable and positive dietary response along with positive genes are highly indicitive of celiac... keep her gluten-free and embrace it. If she eats gluten foods and doesn't have a reaction right away that doesn't mean anything if her previous experience was as you describe it, keep her gluten-free and don't look back.

[Nic]

Am I misunderstanding or did you say the doc. said to resume a "regular" diet? Does that mean he wants you to give her gluten? Why would be say that if he feels certain it is Celiac? I am sorry if I am confused, my kids got us up at 5:45 this morning .

Nicole

[lonewolf]

Am I misunderstanding or did you say the doc. said to resume a "regular" diet? Does that mean he wants you to give her gluten? Why would be say that if he feels certain it is Celiac?

I was just going to ask the same question. If he believes she is Celiac, why would he want her to go back on a "regular" diet? If you notice problems, make an appointment sooner than 5 months out.

[AndreaB]

I had thought he said that because she said she'd need a doctor's note for her ex to follow the diet with the child. I assumed he wasn't willing to do that so he told her to resume the gluten diet. Kailynsmom would need to correct me if my assumptions were wrong but that is what I read into it.

[chrissy]

ou are in kind of a tough spot if your daughter has to visit the other side of the family often. i hope you are able to work this all out.