4 Year Old With Stomach Issues And Damage But Not Diagnosed Celiac?

[hbelle16]

I need some opinions about what to do about my 4 year old. She had extreme bloating (like looks like shes pregnant) by the end of the day. When she wakes up her tummy is flat. And she had always had trouble going to the bathroom. She is now on miralax and she had a endoscopy done, as suggested by the doctor, because she had a high marker for celiac. When the results came in she had a little damage in one of the biopsies but the doctor said he wouldn't diagnose her with celiac because its only a tiny bit of damage and he said to keep gluten in her diet. Im just trying to figure out where the damage came from and why she is bloating so much. Also she will have 3 Huge BM sometimes during the day and still be bloated at night. Help please?! Im thinking of getting a second opinion.

[carecare]

I think it would be wise to find a second opinion. Was her doctor a specialist in celiac disease? Since you had the blood tests done and the biopsy why not just try a gluten free diet and see what comes of it. If in the mean time you find another doctor you can then tell them your results of the gluten free trial whether it's positive or not.

We are waiting for the Dec. 16th the day my boys get endoscopies done. From that day forward we will be gluten free regardless of the results. They were gluten free for almost 2 months and their symptoms went away and came back with a vengeance when adding gluten back in so that they could get the endoscopy. They just turned 10 and 12 and both are very much looking forward to eating gluten free again.

Good luck!!

[StephanieL]

So he wants her to damage her MORE before he'll say it's Celiac? I agree, you need to get a second opinion! If you need/want a firm dx, I would not go gluten-free till you see another Dr. If her markers were high and there is damage (why it matters how much is beyond me) I would think after seeing another Dr., going gluten-free to see if there is improvement would be easy enough.

Good luck!

[Roda]

Yep get that second opinion if you need to. Get all copies of blood work and pathology reports. I don't see any reason to keep her on gluten for the second opinion. She's had the blood test and scope. You can take everthing and the results you notice after she is gluten free and see what another says. IMHO, she is celiac and needs to go gluten free.

[hbelle16]

thanks everyone....i did go get a second opinion. Handed the new doctor the same results from the old doctor(both are GI specialist) and she said she thinks she does have celiac. All set up with a nutritionist and everything so hopefully things will get better

[hbelle16]

So he wants her to damage her MORE before he'll say it's Celiac? I agree, you need to get a second opinion! If you need/want a firm dx, I would not go gluten-free till you see another Dr. If her markers were high and there is damage (why it matters how much is beyond me) I would think after seeing another Dr., going gluten-free to see if there is improvement would be easy enough.

Good luck!

Thats what i was thinking...why wait for more damage??? Seemed crazy to me. After I went to the next appointment and he told me to give her more wheat bread, whole grain, etc to make her go to the bathroom I knew it was time to find someone else...luckily I got an appointment right away

[Di2011]

Hi hbelle16,

I am so relieved that you got a second, and BETTER opinion. So many posts on here talk about children not necessarily having "damage" when biopsied. You are a good mum and you have done the right thing.

Don't let people get away with telling you that gluten free is expensive or difficult. Keep your meals simple and fresh with lots of calories for your family from natural foods. Whenever you can cook and bake from fresh.

Don't forget to check all your household products - skin/bathroom/laundry etc. Your families makeup / personal products are important too because you don't want a kiss/hug to cause any problems !!!! Unfortunately a lot of people get more sensitive after going Gluten free so if you can get 100% sooner rather than later.

[M0Mto3]

Glad to read your update. I think that you did the best thing. Any damage is bad and hopefully she will be better once gluten free. My 17 month old also looked like her belly was so distended by the end of the day when she was on gluten. Hopefully your little one will get healthy soon!

[mushroom]

Glad this story has a happy ending. She is only a little bit celiac, indeed We use the analogy of being only a little big pregnant.

[salexander421]

I think you are safe to say your daughter has celiac. She has symptoms, genetic marker, and damage (wether it's a little damage or a lot of damage, it's still damage and that's what celiac is.). I'm glad you followed your instincts and found another doctor! Hope she starts feeling better soon!