4 Year Old Gluten Intolerance

[Barrettsark]

Ok everyone I'm new to this Forum. My name is Jessica and i'm a mother of 6 children who all have digestion issues. But my four year old little girl has been complaining about stomach aches for a year now. She is very pale and has no energy. Nothing for her to stay on the coach all day. Often has colored stools. I feel that we have always eaten healthy. So we took her to the doctor a few months back and they did some blood work to see if she had lyme. Than we went back because it was not lyme and they tested for celiac.. One test Endomysial IgA came back at 21 range ( 0-19).

We were sent to gastro and they did a biopsy that came back neg. The gastro doctor says she is not celiac but Gluten intolerance. What does everyone think?? Help Please

[shadowicewolf]

It could very well be. At any rate, she needs to get off of gluten completely. If she improves, then there is your answer.

[mushroom]

Welcome to the board.

It could be that she has really early celiac, enough to develop the antibodies in the blood but not enough for damage to the small intestine. With a positive EMA test that to me is the most likely scenario. Either way, she does need to eat gluten free; I think you will find it will make a big difference. AND, you have a doctor who says she needs to be gluten free and can provide you with a letter for when she starts school so that she can avoid gluten exposure there.

You say your children all have digestive issues. Do either you or your husband also have digestive issues because celiac is a genetically inherited characteristic and there are gluten intolerance genes as well, so your daughter had to get it from either one of you. Just having the gene does not automatically give you the disease though - there has to be some kind of trigger -- usually physical or emotional trauma -- to set it off.

Just a suggestion, but it might be a good idea to make the whole family gluten free and see if the issues of your other chldren resolve. I know you will find some resistance from the older children giving up their favorite snacks, but you can do the transition gradually. Most fresh food is naturally gluten free, meats, fish, vegetables, dairy, eggs, fruits, nuts, seeds. Add in rice, and gluten free bread (making wraps instead of sandwiches is a good idea, using brown rice wraps or corn tortillas) and some gluten free pasta,and you can cook gluten free dinners for the whole family without their even being aware of it (and you don't have to tell them to start with). You can thicken gravies and sauces with cornstarch or buy some Pamela's Baking Mix and then you can make gluten free pancakes, waffles and cookies too. Think about it for a while.

[GottaSki]

Welcome Jessica!

Whether your daughter has Celiac Disease or Non-Celiac Gluten Intolerance the treatment is the same - remove ALL gluten and watch her improve.

That being said...if she responds to the removal of gluten and had a positive EMA-IgA - I'd guess that the damage to her small intestine was either spotty or in it's very early stage. Do you have the endoscopy report? It can help to know how many samples were biopsied and if there were any cellular changes found.

Have you considered testing for you, your husband and other children? I agree with Mushroom regarding the suggestion to take the entire family gluten-free - given the digestive symptoms in your other children. Minimally, I strongly recommend making one gluten-free dinner for the entire family. Testing all eight of you may give a more clear picture of Celiac vs NCGI. Should you decide to have anyone else tested, they should continue eating gluten until the tests are complete.

Hang in there - the transition to gluten-free is not easy - but it does become much easier with time

[Barrettsark]

We have started the Gluten free foods with her and I have noticed a difference with her already. The other night she was giving me a hard time and wanted Pizza, with in an hour she was crying that her stomach hurt and was very off mood wise.

I have always had digestive issues myself diarrhea When I was younger to the point I didn't want to go places to after I had my four year old constipation to the point of bleeding. I had a Colonoscopy last year at only 32 to find I have Internal hemorrhoids. I just went to the doctor yesterday to ask them to test me.

My husband on the other hand is not sure about any of this.. I working on him..

[shadowicewolf]

Its best if she doesn't cheat on the diet. Its hard, and she'll go through gluten withdrawl but you must keep to it

[GottaSki]

and learn to make gluten-free pizza! Again, give yourself time for the transition...you'll be able to replicate all her favorites as you learn more.

Have you read the "Newbie 101" thread - loads of good start-up info there and continue to ask questions - it really is the best way to speed up the process.

[Celiac Mindwarp]

Sounds like a family trip for blood tests might be in order. Once you all start enjoying more gluten-free food you will find it harder to go back on gluten for testing.

Good work Mum, keep it up

[Cara in Boston]

Yes! Please get everyone in the family tested - especially before you make any diet changes.

Also, a negative biopsy simply means DAMAGE WAS NOT FOUND, not necessarily that your child is negative for celiac. With her symptoms and positive blood test, it is likely that she has celiac. A diagnosis of gluten intolerance is ok because the treatment is the same, but many people think it is less serious and an occasional "cheat" is ok. It is not OK to cheat at all. She needs to be 100% gluten free.

If after 6 months her antibody levels are normal again (after being gluten free) you will know you are doing the right thing.

Get everyone else tested right away. If more of you test positive, it will be easier to all start the diet together.

Cara