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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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    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. The vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually.
    • Welcome to the board. Celiac is not a death sentence by any means. I was undiagnosed from age 4 to age 46. Words can not describe the hell of the last 15 years before I was finally diagnosed. I am alive and healthier than I have ever been. There are others who also went years and are now doing well. There are some who had complications of cuorse but not everyone does. Thankfully it sounds like your doctors have found this relatively early. You should recover in time. Do be sure to read that Newbie thread and if you can get the others you live with to read it also. You can live safely in a mixed house but you to have to take precautions to be safe. As the others stated you do need to get back on gluten until all celiac related testing is done.  You don't have to eat a lot but if your going to get biopsies done you do have to have some daily. Most of all try to relax. Having celiac does take some getting used to but you will be okay.
    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
    • Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed.  The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline.  So the tests may not show the true immune reaction that is going on or the normal damage.  They may not show any damage in fact and you could get a false negative diagnosis.  You body starts healing and out the window go the test results.  Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process.  Many of them are woefully ignorant of proper testing for celiac disease.  That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed.  It doesn't help when doctors screw up the testing themselves.  Or refuse to test people.  Which is also far too common. I was vegetarian for 5 years.  I am not anymore and don't recommend it.  It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body.  I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick.  We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO.  Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home.  When you do cook, cook big, and freeze the leftovers.  That way you can quickly take a small portion of food out of the freezer and reheat it.  Being celiac it is more important to learn how to cook.  Unless you are wealthy all those gluten-free processed foods add up quick.  Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also.  Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well.  So celiacs can be low on vitamin D, calcium,  and one other one I forget.  Vitamin B-12 may be low also ( it is important for nerve health).  Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes.  There's lots of us that make that change every year though, it's not impossible.  You will most likely end up eating better, more nutritious food than many of your peers.  And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start.  you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months.  The immune system is very serious about protecting us and doesn't give up quickly.  Also it always remembers so it will react to even small amounts of gluten.  I live with gluten eaters at home and I do fine.  I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection.  It may provide some helpful info.  
    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
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