Hi
My little girl Madeline is currently going through testing for Celiac Disease.
The Dr’s have done the blood tests and have come back Positive.
They would like to do a biopsy of her small bowel but they say these results could come back inconclusive.
Is this worth putting my three year old through? Are they looking for other things when they do the biopsy? My Dr was not giving away too much info.
How hard will it be to look after Diabetes and Celiac Disease?
Thanks for your help
Kirsten
The simplest way to determine if Celiac disease or just gluten sensitivity is a factor in the symptoms your daughter is having is to do the gluten free diet and see if the symptoms go away.
If the blood tests are positive for anti-bodies and she has several of the symptoms, I don’t think it’s really necessary to put her through the biopsy.
As far as management, if she is gluten intolerant, once she gets on the gluten free diet you may notice her diabetes is easier to manage. It was for me anyway, once my intestines started to heal and I was actually absorbing things properly I was able to level out my BG and things seemed much more predictable.
Good luck
Replies to This Discussion
Tarra Robinson Replied in the duplicate post (Administration had to remove due to duplication)
Tarra Robinson:
I was recently tested for Celiac disease and the blood work came back negative so i did not have to do the biopsy. A biopsy is standard protocol in the testing for Celiac’s disease. It is important to find out if she does have it. Eating wheat, barley,and rye does damages the small intestine and interferes with nutrient absorption. It is defiantly more expensive to buy the gluten free products but more and more places are carrying them. My friends son has Autism and is on a gluten free diet. I know there is some things that do not taste the same gluten free but there is some products that are not bad.
I would agree with Trista’ s reply to try your daughter on a gluten free diet & see what happens. The biopsy test is not a big deal, but I have had the very scenario you’re afraid of. My blood test indicated that I was celiac, (my Mom has it), but my biopsy did not. The gastro I saw told me to go ahead & eat wheat based on my biopsy. I had already tried eating gluten free & noticed such a difference that I knew I couldn’t go back. (Yes, I was eating wheat before my biopsy.)
It can be hard to manage both of these things, because it narrows your options even more. However, your child will be so much healthier & I suspect happier if you could follow both diets. There is a lot of info out there, try picking up a book on gluten free eating. You just need to start small & don’t overwhelm yourself. It will get easier, I’ve been there.
Thanks for you’re support.
Yes we are going to get the biopsy done on 5th december 08, I do believe she has the Disease and will be more than likely to change her diet after the biopsy no matter what the result is. In Australia to get goverment support for Celiac Disease we need to have the Biopsy done. bumma.
I’ll keep you posted and let you know how the results go.
Kirsten
I’m intrigued by the Australian approach. What sort of support does the government supply?
Hi,
We went to one of the largest children’s hospital in Australia last week to do the test for Celiac. Madeline did really well and we got the results back yesterday ‘she doesn’t have Celiac’ which is fabulous.
I did change her diet after the test to see if it made her feel better and it made a big difference she seems much better but her BGL are all over the place.
The dietian said she may have a reaction to the preservatives in the food and maybe to bring back one type of gluten at a time so I will slowly and see what happens.
I’m so glad she is not a Celiac!
Kirsten
Oh boy,
I really don’t want to rain on your parade, but I have to tell you about my own experiences. My Mom is a confirmed celiac, had the symptoms & biopsy to prove it. I had myself tested after reading about the correlation between diabetes & celiac. My blood test had the antibodies, however my small intestine was fine. My doctor told me to go ahead & eat what I wanted, but I already knew how bad gluten made me feel. I’ve been gluten free ever since then. Any time I inadvertently eat gluten, I have awful reactions - headaches, bathroom issues, crazy blood sugars, etc. So I’ve been following this for 3 years now & have recently been feeling especially bad again, so started reading up on food intolerances. I got tested for food allergies & I have a ton of them. The really crazy part (and what I hope you’ll take from this) is that I can tell when I’ve eaten an offending food by my blood sugars. I figured out that potatoes were bothering me when I shot up to the 300’s 2 hours after eating them.
I guess what I wanted you to know is, trust your instinct on this. You’re already tuned in to how your daughter responds to foods, these tests aren’t foolproof yet. I KNOW that if I continued to eat wheat, I would be suffering.
I think there’s a lot more to be discovered about this & in the meantime, do what you know is right. I hope I haven’t made you more frustrated, but I wanted you to know that there are shades of gray in this arena. I’m following this thread, if you want to talk more about it. - Molly
I was diagnosed with celiac in October 2008. It’s only been a couple of months but I feel so much better being on a gf diet. It is hard & I do have my moments but thats because when I did have a low I would eat a cookie & now I cant even do that (unless I’m organized and have some gf available) I know that from my testing, they wanted to see if I had any damage from celiac and they take biopsy to test for cancer too. The test really isn’t bad - the actual time of being “under” is about 5 minutes and she will not remember, but I do understand your concens of her age. If it were me, I would do it to rule out everything else, & even if results came back inconclusive, I would still do a gf diet.
My 11 year old daughter was just dianosed with diabetes and celiac in the past few months. The testing for celiac was really an easy procedure even though I was scared to death. It has been a transition trying to eat gluten free food but it is easier than what I thought it would be. Luckily my daughter loves veggies and fruit so that helps. It will seem hard at first but you can do it just like I did. I cried and cried when I found out she had celiac on top of diabetes but now it is just a way of life and it has only been a month or so. Good luck.
My 3 year old had two blood tests and both indicated celiac. We decided not to do a biopsy because of her age. Three months after a gluten free diet her tests showed that the antibodies they test for had gone down. However, she still has stomach/ bowel movement issues that I thought would go away on a gluten free diet. So we are going to see a GI doctor to talk about this and now I am more okay with doing a biopsy if it means they will find what is really going on with her.