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4 Year Old Gluten Intolerance
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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

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

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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. :)

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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 :)

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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..

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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 :(

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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.

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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 :)

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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

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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