Waiting For Biopsy

[Kailynsmom]

My two year old daughter has one week to go till biopsy...and she's miserable. She screams all day, restlesss and fussy at night. I know it's only one week, but it seems like forever when you're watching your child suffer...Anybody find anything that helps in the mean time. I gave her Mylanta the other night and she seemed to sleep better.

[Carriefaith]

I'm sorry... maybe you could ask the pharmasist or the doctor for something to ease the pain for the next week. She should be able to start the diet the day of the biopsy, just make sure you ask the doctor.

[celiac3270]

At first I was thinking of a number of suggestions to ease it, but then realized that those are for accidental gluten ingestion--when you want the intestine to heal...not for when you're trying to damage it.

[Guest nini]

Kailyn's mom... I had typed you a long PM the other nite and my computer locked up and I lost it...

I know I'm not in the majority with my thoughts on this, but I feel like I have to say it. If her blood work was positive, what are they trying to determine with the biopsy? she's too little to have accumulated much damage. IMHO a blood test is conclusive enough and the fact that she is miserable waiting another week for this biopsy upsets me. According to I think it was JAMA's papers, the biopsy is NO LONGER THE GOLD STANDARD for diagnosing celiac, especially in children.

Just my .02 cents.

I would forgo the biopsy and go ahead and start the gluten-free diet. If she doesn't get better relatively quickly (several weeks or so) consider looking into other food intolerances or other conditions. If she does start to improve, VIOLA! you have your answer AND your child gets better.

[Jnkmnky]

I agree with nini. Is the biopsy necessary for insurance reasons? Why do you feel you need it at this point? My son's dr told me the biopsy wasn't necessary DUE to the amazing results of the diet. He was three, and another thing the dr told me was that the risks of a biopsy are small, *perforated intestines was one possibility, but the risks were way too large in light of how well my son was doing on the gluten-free diet. You know with all the recent acknowledment of celiac disease being a real problem, I'm leery of drs who want to use every new possible celiac as a "teaching tool". Make sure your dr isn't lining up Med students to watch the procedure. I'm generally a suspicious person..

[julie5914]

I am 25, and they not require biopsy for me. Blood work was strongly positive and enough. Course they waited a month to tell me that while I thought I was waiting for endoscopy, but oh well. I am happy to be gluten-free now. Maybe you can find a source for your doc to convince them to give your daughter diagnosis without the trouble of biopsy...

[frenchiemama]

I'm going to have to go with some of the others here. If her bloodwork was positive and she's sick and miserable, why not just start her on the diet and forgo the biopsy? I was diagnosed through bloodwork ( I don't know the numbers but everything came back a "strong positive"). My doc and I discussed it and decided that we would skip the biopsy unless I wasn't improving after a couple of months. It has now been almost 3 months and I feel really good and my DH has cleared up (except for a couple accidental glutenings). To me that is enough evidence and I don't feel that I need a biopsy to tell me anything.

[Kailynsmom]

Thanks for all the replies...but actually her bloodwork was negative (a 3- ya'll probably understand that better than I do) The dr. said that's good, but considering her age and that her IgA was only 32 (really low) that he wanted to do the biopsy. He said that a low Iga can skew the TTg ( i think that's right - the celiac blood test) just as age can.

I am new to all of this, and the only family members with it are on my ex-husbands side. We split b/c of his abuse, so needless to say those lines of communication are a little shaky. I did talk to his celiac disease aunt and she said that I should have her tested. Dr said with undigested foul smelling stools, history of amenia, stomach and leg pains, and constantly irritable mood, that she's likely a Celiac.

Ok, so now what's ya'lls take?

Is Mylanta (or Maalox) even gluten-free? Maybe thats not even worth trying, though it did offer a little relief I think.

[Jnkmnky]

Would the biopsy be affected if she went gluten free beginning today? I know my son felt better within four days of being gluten-free and he was three years old. At least she'd begin feeling better. I think if the biopsy results wouldn't be affected by a dietary change NOW, then you should consider that. How fast do vili grow anyway?

[Kailynsmom]

I honestly have no idea how fast villi grow... haha. I did ask the dr at her appt 3 weeks ago if she could go gluten-free before the biopsy and he said "NOOOO!" I really am too new at this whole celiac disease thing to know that. I just now have gotten a general idea of the disease itself (intolerance, not allergy- though Icant say I honestly know the difference.) It's a good thing someone here gave me the safe/unsafe Gluten lists, because I thought I just had to look for "Wheat" or "modified food starch"

Ok, so anybody out there know? How fast do villi grow? And her biopsy is te 20th, if she goes gluten-free today will that mess it up in that little amount of time?

[Jnkmnky]

Here's the thing... She has a family history of celiac disease. She has symptoms that sound like celiac disease. She tested neg, which is common for young Celiacs. Her Neg blood work didn't make the dr say she DOESN'T have celiac disease or need a biopsy. He's actually going to do the biopsy with the neg blood work. Makes it sound like even he knows her neg blood work doesn't rule out celiac disease. She's suffering by your own account. I just don't see the point of continuing a gfull diet. Isn't it also difficult to have flattened villi that prove celiac disease at such a young age? Sometimes you don't get that "proof" of celiac disease, but are diagnosed with a diet change. It's an acceptable dx if all the other puzzle pieces fit.

[Kailynsmom]

Thanks, though it didn't help allay my guilt at all.

No, and bear with me because I'm still researching all of this, he said that there could be several things causing her symptoms. She does have a history of lactose intolerance, perhaps it is more severe than that- an allergy. Maybe it is celiac disease. Or something else. The point of the biopsy is two fold he said- he wants it to check for celiac disease, but she had some issues when she was first born that we thought might be related to her intestines. (She saw him at only 3 mo old- her ped said reflux and colic, but he thought it was more likely intestinal cramping.) He said he wants to make sure that it isn't something else wrong now, that could have also been wrong then. For such a quick, fairly low risk procedure(biopsy), at this point it is worth it if it will give us some answers and help us get her well.

[Kailynsmom]

One more thing, her insurance and some of her assistance that we get will help with cost of gluten-free foods, but dr said his experience has been that the ins wont help without the biopsy. If bio is negative, but diet does help, THEN the ins will help.

[Jnkmnky]

PFft! Mother's have enough guilt. You're doing everything you can do and then asking what more you can do. Sorry if you felt my words suggested you needed MORE! I've got three kids so it's three times the guilt. I'm more frustrated with the process and the dr.

[frenchiemama]

Hm, I do understand about the financial reasons. I used to take pepto (name brand though, I don't trust generics to be gluten-free) when my stomach was upset ie every day. It works about as well as anything else I've tried.

[Kailynsmom]

Why is it that we feel such guilt? Have we ever done something thinking that it would purposely harm our children? It's ridiculous- why do we feel guilty? We do all we can.

Hooray to us mom (and dads)! We love our kids and we do our best...."What do you want from me?!?!?!" (My mom actually yelled that at my sister and I one night, when we complained about the dinner menu! Hahaha)

[Guest nini]

my daughter's blood work was inconclusive and she DID NOT have a biopsy, but she responded extremely well, almost instantly, to the gluten-free diet.

when she was born she had projectile vomiting, explosive diarrhea, GERD, painful swollen abdomen, and we thought she had lactose intolerance and other allergies because she was breaking out in hives all over her body.

Any of the OTC remedies for cramping, nausea, vomiting, diarrhea didn't work, the prescriptions didn't work... she was miserable, she was anemic, hypoglycmic, underweight and had no muscle tone...

She also has a family history of Celiac. ME. That and her symptoms and her response was enough to dx her. Insurance and medical assistance will have to help if you can get a dx. However, I disagree everything that you have said that this Dr. has said regarding this. I think we need to question our Dr's. I also do not think that the Biopsy is low risk. JMHO of course.

I'm just telling you where I'm coming from so you can take it and run with it, or totally disregard everything I've said. Doesn't matter. I'm just trying to help!

[julie5914]

Yeah, from your additional info, it sounds like you do have a decent doctor. It sucks that sometimes you have to wait so long for biopsy. And it seems so much longer with pain and discomfort (whether its you or your child). Check about the insurance to see if it's worth it though. Endoscopy will cost you some percentage, and most insurances "cover" gluten-free treatment by allowing you to sign up for a flexible spending account that you can use to reimburse yourself for not the total price of gluten-free foods, but the difference between the gluten-free food and the regular food. What a pain in the tail to keep all those receipts and comp shop to get the difference, pay for it up front and then get reimbursed. Hopefully your program offers more than that.