9Yr Old Daughter Recently Diagnosed With celiac disease

[Mummyto3]

My daughter has recently been diagnosed with celiac disease. She'd been constipated and bloated since Dec (but now wondering if it's been longer). We found out by chance as she was having a bladder scan. She's suffered urine infections since just before 4 yrs old. After starting on Senna she started soiling everyday throughout the day. She then moved onto other laxatives but nothing seemed to help incl. an enema this March. I kept telling docs that my family have a history of bowel problems, one was colon cancer. The youngest to pass from bowel probs is my cousin who was 21 (also suffered with constipation). I was told not to worry about all that and it didn't mean my daughter would have same probs.

Met our consultant a few weeks back. She immediately referred her to blood tests incl. for celiac. Turns out she has it now. I'm having myself tested becuase of family history. I have an underactive thyroid and often suffer with anemia. I get exhausted a lot and also suffer with stomach pain and constipation although not as much as my daughter.

Can anyone offer me help and advice? We still need app. for biopsy and dietician. Her blood levels for celiac disease were very high and she has all the symptoms.

I'm scared and nervous as this is all new.

[WinterSong]

Hi and welcome to the board! I know that it can be very unnerving when you first find out about the diagnosis, but remember it's not the end of the world. Think of it as a good thing - now you know what's wrong and you can do something about it! It's the beginning of your daughter getting better.

My blood levels were also very high. My doctor told me to go gluten free right away, even before the biopsy. But I shouldn't have done that because it could have resulted in a false negative (luckily my results still came out positive). So definitely wait for her to go gluten free until after the biopsy. Take the time between now and then to go to the dietitian, thoroughly educate yourself and prep your kitchen for changes.

This is a really great board, so ask any questions you like and search around (you'll be able to get a lot of answers through the search engine). Order a book or two about Celiac, and sit down with your family to talk about everything you learn, so everyone's on the same page. I suggest keeping a journal where you can write down safe foods/products/medications and other things to stay away from.

There's actually a thread on here where a bunch of experienced board members listed their top two pieces of advice for newly diagnosed, so that would be a good place to start.

Also, remember to stay as calm and level-headed as you can about all this around your daughter. It is a big change, but anxiety is contagious. I learned with my loved ones that the calmer you stay the easier the transition will be for her.

Good luck, and welcome to the board!

[Darn210]

First of all, welcome to the board!! You have found a wonderful place to come for info and advice. There are lots of members here to share their experience . . . many of which who have gone through what you are currently going through.

We still need app. for biopsy and dietician. Her blood levels for celiac disease were very high and she has all the symptoms.

I'm scared and nervous as this is all new.

Second, keep your daughter on gluten until all testing is done to make sure you have the best chance for a positive biopsy. Check to make sure that the doc will be taking many samples (as Celiac can be patchy). Keeping that in mind, with her blood positive, even if she has a negative biopsy, she should still go gluten free. Some docs will diagnose on positive blood only and some won't, but with a positive blood test, your daughter needs to go gluten free.

Take the time while you are waiting to browse this board and educate yourself on things like how to handle the school, sleepovers, what dedicated kitchen equipment to have (she'll need her own toaster) and to sort out the products in your house. In my house (which is a mixed household), everything in the pantry is gluten free . . . all my baking products, soups, cereals, gluten-free bread and cookies, chips, taco shells, etc. I have a cabinet that my son and husband keep their cereal and bread in. My daughter knows she can have anything in the pantry and nothing from the cabinet.

Also a little encouragement . . . my daughter was diagnosed four years ago at the age of 6. Since that time, the number and quality of gluten free products has risen greatly. The awareness (which could always be better) has been improving. It may seem overwhelming at first, but you'll be surprised how quickly you come up to speed and you'll be answering posts from a mom whose child just got diagnosed.

[Mummyto3]

Thank you to you two who replied so quickly. You both sound so friendly! I've learnt that I can get gluten free products on perscription. As some products are quite expensive, I'm sure I'll take advantage of that. I hate keeping her on the gluten now, but I will do my best to follow doctors orders. I'm crossing everything that app will come quickly. they want her to wait for those results before seeing a dietician so will have to wait. I'd read loads already about celiac before diagnosis as I was getting more and more convinced she had it. I just hope her bowel isn't too damaged.

She had a marker test where she swalled 20 tiny circles (from a pill). Five days later she was x-rayed, and she still had 16 in there! Anyone/anyones children had this test?

Thank you both again for the replies x

[Cara in Boston]

My son (6) was diagnosed in March after several positive blood tests and (finally) a positive biopsy. The waiting between tests was so hard for me as I knew that continuing to feed him gluten was causing him harm. I also tested positive (blood) but then had a negative biopsy.

In any case, we are both 100% gluten free and now that it has been a couple of months, it has gotten so much easier. Much easier than I thought when I first started learning about it. We are both feeling MUCH better.

Use the time you have to get books from the library and read about Celiac Disease. While we were waiting for the biopsy, I started testing some products with my son. Before we were actually gluten-free, we had already found a sandwich bread we liked (Udi's), a pasta we liked (Ancient Grains), and he began to eat rice cakes and other gluten-free snacks more frequently. (Still keeping gluten in his diet)

By the time we had to switch, it didn't feel very drastic. The transition went very smoothly.

The first few weeks I went a little crazy and we bought way too much junk food (just because it was gluten free). Our extended family kept bringing over treats they "found" at the store (all cookies and junk). Now that we are good at it, we don't really spend a lot of extra money on the prepared gluten-free products . . . we just eat mostly naturally gluten-free foods. (Fruits, vegetables, lean meats, dairy, nuts, etc.)

Our diet is much healthier because of this (the whole family - even the ones still eating gluten).

We've made it through birthday parties, weddings, and even a short vacation without any problems.

Just this past weekend I accidently "glutened" myself (took a vitamin B tablet that contained wheat - it was stored in the kitchen so it didn't get tossed when I went through our medicine cabinet) and have felt sick for a few days . . . so, accidents will happen.

Look around for a support group in your area. Ours has been very helpful.

Good luck -

Cara

[Mummyto3]

Cara, I feel the same about giving my child gluten whilst waiting for the biopsy. I can't see the point in having it when she's clearly have gut problems and had positive bloods. Even if her biopsy comes back neg, she will be gluten free. She can't go on being poorly much longer.

[Cara in Boston]

Try to stick it out. It felt like forever while we were waiting, but when we were finally done, it didn't seem that bad. I am VERY glad we waited. Having a correct diagnosis is going to be so helpful as we move forward with schools, camp, eventually college, etc. Without it we would have always wondered if we got it right and if the GFD was worth all the trouble. I knew that positive or negative, he would need to be gluten free but somehow, having the positive test result makes it easier to stick with it and insist that others do too (the grandparents were skeptical and I'm sure they wouldn't believe it if it was just me telling them he can't have gluten).

If you don't wait for the test, you'll probably have to do it sometime and doing a gluten challenge will be much harder after a long period of gluten-free living.

With young children, a life-long lifestyle change is a pretty big deal.

You can do it. Before you know it, you'll be making new choices and feeling better.

Cara

[Cara in Boston]

Make the biopsy appointment as soon as you can and have them put you on the "on-call" list. Our location had frequent cancellations (kids get a fever or a virus before the procedure and have to cancel) and we got in early when someone else cancelled.

[Mummyto3]

Make the biopsy appointment as soon as you can and have them put you on the "on-call" list. Our location had frequent cancellations (kids get a fever or a virus before the procedure and have to cancel) and we got in early when someone else cancelled.

Our local hospital has contacted another hospital 20 mins away (one we've used before for her). We're now awaiting an app. via phone call.