Daughter positive

[scstampin]

My daughter just had a positive blood test for Celiac and is having an endoscopy done next wednesday. I had a biopsy done that was negative, but feel that I should be retested as I have a lot of symptoms, and now with my daughter's positive blood test, it makes me wonder even more.

Anyway, since we found out a few days ago, my husband and I have talked a lot about if we will make our household gluten free. I think we probably will go that route. My daughter is only 3, and she has a twin brother, and 2 older siblings. I just feel like it will be very hard especially if her twin brother (they always HAVE to be equal in everything!) can have certain things, but she can't. She isn't old enough to understand why. The older 2 are in school, and they would continue to be able to have foods with gluten in them outside the house, when they are at friends' houses, or at school. Just not at home.

I do feel a bit guilty about taking away all the foods they are used to in the house, but I also feel like it would be so hard to try to keep all the foods separate and make sure my daughter doesn't get a hold of anything she shouldn't, and then just trying to explain why they can eat things but she can't.

We also would have the other 3 tested if her biopsy comes out positive, so who knows, maybe some of the other siblings have it too and we just don't know it yet. I did read something about the chance of her twin having it being even higher than just sibling even though they are fraternal.

[sa1937]

Welcome to the forum!

I know celiac in children is oft times difficult to test and come up positive. But if one child has tested positive, the others need to be tested, too. It would be very uncommon, if at all, that there's a false positive on a celiac panel (false negatives are quite common). If one sibling or parent tests positive, the others have a 1 in 22 chance of also having celiac. Have you or your husband also been tested?

It might be helpful for you to read these Open Original Shared Link.

When your daughter's endscopy is done, make sure you pick up a copy of the pathology report (it usually takes a week or two to get the results). Damage can be patchy and may be missed if biopsies are not taken in the right places.

[1974girl]

Yes, please insist on a large number of biopsies. I told my doctor that and he still only took 4 from only 2 different places. (2 in each place) Thankfully, she still showed blunting in one place but he did not take enough according to the Celiac Center. You won't offend him...just hope he listens.

[MitziG]

Oh, you might offend him! I asked my GI to take multiple biopsies and he got irate. "Young lady I have been doing this for 30 years!"

Guess what? I pay the bill, so he works for me. I insisted, and he complied.

Don't let your doctor bully you! Celiac is easily missed in a biopsy. Did you ever have bloodwork done on yourself?

[scstampin]

I have not had blood work done on myself. But I was thinking I will probably call my doctor tomorrow and request the blood test as well.

I am also planning on called the pediatrician tomorrow and asking for the blood test for the other 3 kids as well.

Is there specific blood tests I need to ask for for myself and the kids?

Thanks!

[scstampin]

We got the result of my daughter's biopsy today and it confirmed celiac disease. My other 3 kids are getting a celiac panel done tomorrow, and I got mine done today. So just my husband left to test.

[1974girl]

How is Mama doing? I know some parents are relieved to find an answer but I was crushed to get it because my daughter can eat a Big Mac with no symptoms. I would like to say that 5 months ago, I got the same diagnosis for my 11 year old. I know how you feel. I was sent to a nutritionist within 1 hour of the diagnosis. My husband was left dealing with a throwing up child in the cafeteria. It was a horrible day. I sat in her office in a fog. I thought gluten was only wheat so I was taking it all in with wide eyes. She had celiac herself so she was awesome. She told me that I would cry the first 2 weeks then I'd be ok. And she was exactly right...down to the time. I cried the first 2 weeks. I pretty much grieved for gluten for her. She was fine with it. Mama was not. Then I read on a blog that we attach food to memories and we want our kids to have those same ones. We just have to make new memories for them around their own food. They will still have great Christmas morning breakfast memories...it will just be with gluten free food. That relieved a lot of guilt off of me. If your kids test negative, keep testing them every year or so. My GI is testing my other child every 6 months but I have seen as far as every 2 years. I did want to share the bright spot in the diagnosis. If you have a biopsy proven diagnosis, then the University of Chicago will send you a free care package of gluten free food. It was wrapped so pretty with a bow. My daughter thought it was Christmas! They had gluten free cookies, Progresso soup, gluten-free flour, Betty Crocker cake and much more. We decided after trying those, that gluten-free wouldn't be so bad after all. It came with a couple of gluten-free magazines and I liked those. And Enjoy Life made us crave their snickerdoodles. I try to save them for the celiac child ($$$) but I have to sneak them sometimes they are so good. I bet it was $50 worth of free food if not more. Here is the link. You call them and they will ask your doctors name to prove that it really was and then you'll get your package.

Open Original Shared Link

[scstampin]

1974girl, I am hanging in there ...while it is a relief to have answers as to why my little girl is so miserable, it was also really hard for me to hear that the biopsy confirmed Celiacs, and honestly, I was devastated. Even though we knew chances were very high she had it after getting the blood test results, and had already gone gluten free for her as soon as the biopsy was done, it didn't really hit me until the doctor called and said, yes it is Celiac disease. Actually I still don't think it has really hit me. I have cried a lot too. I feel pretty much how you described feeling. But I know, like you, it will become a part of our life and we will still be able to have our own versions of the "comfort foods" at holidays and such

Thank you for the link for the gluten free package! I called the number and left a message... that will be so helpful!

Thanks for checking in It has been so helpful to get input from people who know what we are going through, and have been there themselves!

[Mom-of-Two]

Aww poor Momma, all normal feelings for sure! I was pretty devastated when I learned I had it myself, it took a great while to really accept it! Well, I am still in that process, 4 months later really. It will be ups and downs for you, which happens, just dealing with your child being different is difficult, but kids adjust SO fast to change, and once habits are changed and you get into a groove, I am sure she will do great with the changes.

I will say, while I did not want my daughter to have internal damage, I think it's good to get a confirmation with a positive biopsy so you KNOW what you are dealing with, know the symptoms are caused by that damage and can move forward and know how to fix that damage. I am in a place where my daughter just tested positive for blood work but had a normal biopsy all around. Her GI has told me she may have "latent" celiac which means she could develop symptoms at any time, but he has suggested keeping gluten in her diet and monitoring her. Which we do not plan to do- she is seeing another GI dr and then we are going gluten-free either way, but I am hoping to find more support with this new dr, who has a celiac specialty in children. Like I said, I did not want her to have damage, I was just hoping there was some sort of recognizable "change" that would say celiac so that they could confirm that diagnosis!

I would take that news and run with it, and be encouraged. Kids often heal quickly, much quicker than adults!! Your kiddo could be feeling so much better in just a few weeks! I think once you SEE the results for yourself, it will change a lot of how you feel, and you will experience that relief on her behalf!

Also---- I think your preliminary plan to go gluten-free as a household is a great one- if she has a twin sibling, I would strongly suspect that they share that gene, and possible that other siblings have it also- just easier all around!

[tarnalberry]

I'm the only one in our house with gluten intolerance, and we're almost entirely gluten free. As far as I know, my daughter (2yrs old) does fine with wheat, and she occasionally shares in with daddy's non-gluten-free granola bars, and bread when he buys it from the store. But if she's going to be around me, she eats gluten free. Period. The odds of kids making a mess is about 100%, so we just take that problem out of the equation. If she were to become gluten intolerant or celiac, I'd take the house gluten free. Well, maybe some stuff on a high shelf that she doesn't even know exists in the house for my husband (like said granola bars), but that's a big maybe.

You have to do what works for your family as a whole.

[Cara in Boston]

Kids are very resilient . . . my son and I both went gluten free when he was 5. I was pretty upset about missing out on my favorite foods - and all the social stuff (eating out, pot lucks, etc.) but when I thought about my child, I was even more sad. How many birthday parties, school celebrations, etc. were still ahead of him. I imagined him feeling totally left out. Turns out I was completely wrong. He is totally FINE with being gluten free - we bring our own food to parties/events and always bring something gluten-free to share (it usually turns out to be a favorite of the group!) He focuses more on the celebration then on the food and he always enjoys himself. I wish I had that attitude growing up - I'd be a much healthier person! He has even said, "Mom, its not about the food, it about the friends!"

Every now and then he asks if I can "figure out a recipe" for something so he can have it. We tackle it together like a science project and usually come up with something pretty good. He is learning to cook (a skill he will surely need) and we are sort of having fun on this adventure together.

I think it really helps that I cannot eat gluten either . . . it gives him a "partner" in all this. He calls me his "gluten free buddy".

The hardest thing to deal with is when we are out and about and food is offered to us that we cannot eat but his brother can. This happens more than you would think, especially in the summer when Boston is full of tourists. There is always someone handing out free samples somewhere. Usually snacky stuff that looks like it would taste good. I always keep gluten-free treats with me so he can accept a sample, then trade it in for something safe he can eat. We do the same for Halloween - he usually trades it in for legos and not candy - FINE WITH ME!

I honestly don't think he feels like he is missing anything. We talk a lot about nutrition and he will sometimes comment, "I can't eat that, but it really isn't healthy anyway . . . " He is a smart boy.

Your daughter is starting so young, she will do just fine.

Cara