Hi, I am new to the site. I have talked to some people that are celiac so I know the outcome of this. I have a 6 year old daughter. Six months ago, we had a upper GI and biopsy showed that she didn't have celiac but her Dr. said she could have sworen she had it. In fact she had them(the lab) retest her sample to double check. She had live villi so they said there was no way she had it. After 10 days in the hospital and 40,000.00 we were told that it was Sensory Intergration Disorder. She had muscle weakness, problems swallowing, pain in stomach, dehydration, pain in neck. Dr. thought myasthenia gravis but was neg. so now I don't know what to do. What test on entrolab would you suggest we do? I am very overwhelmed with the thought of changing our deit just because I don't know what to cook with. I am willing to do anything. She is hungry, stomach hurts, will not lay flat in bed at night, constipation and dark circles under her eyes. If anyone could suggest where to start besides Dr. I would love to know.
Thank you,
Tracie

I have a nephew who almost died at 18 months, they did every test in the book, they were sure he had celiac, but the tests were deffinately negative... In the end we found out he had severe cassin and soy allergies/ sensitivities and his system just shut down. It seems to be almost the same mechanism that causes celiac but a different protien. They never said there was a specific name for it. But we put him on goat milk, and cut soy out where ever possible and he's okay now. anyway the point of this story is that maybe she's having the same symptoms as celiac with a different trigger.
Good luck!

Have you done a gluten challenge or an elimination diet? In kids with issues, I think trying the diet for a few months is the only real option - and the cheapest

My youngest had the DQ2 gene and an inconclusive biopsy. And this was after a battle just to get her tested for Celiacs (I have it and she had problems). End result is the Dr yelling at me for "sentencing her to that diet when she just has a dairy intolerance...." blah blah blah. I refuse to go back to that Dr. Her pediatrician who was very hesitant that anythign was wrong with her agrees that this is working for her and she shows signs of a reaction when she eats gluten. That is proof enough for him.

She went dairy free and reacted to trace levels of dairy. Still she was not 100% better. Then she went gluten-free & CF and no there is a huge difference. None of her tests indicated even a consideration for trying the gluten-free diet. In the end, trying the diet made all the difference in her. She has grown, her behavior is sooo much better, she is no longer starving hungry 24/7, etc.

Maybe trying the diet will make a big enough difference in your child to stick to the diet and not worry about the tests.

I would do the gluten sensitivity test from enterolab and maybe the gene test - if you want to do enterolab testing. But I would agree that you should go gluten-free with her now. With kids this young, you can usually tell pretty quickly if gluten is a problem. At that point you may want to stay gluten-free from dietary response rather than paying for testing. If you do want do to testing, enterolab says they can still detect gluten intolerance up to a year after going gluten-free, so you have some time to decide and won't have to put her back in gluten like you would with traditional testing.

Hi Everyone,

I wanted to thank all of you for the advice. I have had my daughter gluten-free for 22 days now. We do not have any more hurting in her stomach and she is acting more like herself. I did make a goof and gave her gluten twice and both times she complained about her stomach. I am so excited that we have a direction to go. I can't wait until the black under her eyes are completely gone and she gains a little more weight. I am looking into the testing with Interolab. I need to do it quick because I understand that you can't be gluten free to long before the test. This site has been a life saver because of the information on it. I have gotten so stressed at times but I am glad I finally did this. Thank you again for the help!!

Tracie

None of mine have a dx but the baby was so sick that we had to try something. Both of the older kids who had little to no symptoms other than D on and off and both are small.

with the diet, we went gluten-free and then found out that the baby was lactase deficient. We then made the diet gluten-free/CF and have seen the biggest improvement with the one of the boys. They both had a positive response to gluten-free but the one who complained the most of tummy aches, dark circles under the eyes, and always tired really improved by taking out dairy. He's circles were gone in little over a week and his fatigue vanshed. And he packed on 2 lbs in a month.

i would go ahead and remove dairy. Give it two months and see if she improved. i intend to go about 6 months to give the gut a good chance to heal up and then add in dairy and see how they react.

Have you checked everything for hidden gluten like malt and flavorings? And in their shampoo and toothpaste? The baby couldn't even handle having gluten in the room. I kept a little girl and I always no matter how careful I was glutened my child somehow when I fed the girl her cheerios.

Good luck!
Stacie