Emma had her endoscopy-Celiac possible

[Anonymous]

Okay, I could be totally wrong, but I believe that there really is little difference in how you deal with celiac disease and a gluten intolerance. I think that the major difference is that there is a chance of outgrowing the intolerance and not celiac. Also, with an intolerance I’m guessing there are less long term effects if she eats foods with gluten. Like I said, I could be totally off base. From what I’ve read, if she does have celiac, you’re actually really lucky to have realized it this early. It means that she shouldn’t have any real damage from it and no long term effects.

Do you already have her on a gluten free diet? If not, I’ll tell you that it seems overwhelming at first, but it’s really not that bad. You get to the point where you know all of the major terms that you need to look for on ingredient lists and you have a list of “safe” foods that you fall back on. It’s frustrating that we have to pack all of Kaelyn’s foods for day care just to be safe, but she doesn’t seem to mind at all. I’m sure as she gets older, it will become more of an issue but it hasn’t yet.

[Anonymous]

Thanks guys for the support, I really need it right now.

Kim ~ That does make sense regarding the differences. I did know with celiac there was a good chance you would have it forever. I know she could have worse problems but I wish she don’t have this. How did you know that Kaelyn was allergic to wheat? Blood tests or biopies? Is it not the same thing as celiac, I guess I thought it was? What symptoms does she have? Sorry for all the questions!!! I don’t have her on a gluten free diet but I do know what foods she is eating that has it in it that I need to stop

[Anonymous]

brandy, 3 of my children have celiac disease. it is a genetic, autoimmune disease and it is a permanent condition. we also know that our 17 year old son has one of the celiac genes, so the disease could be activated in him at any time—or never. there is a non-celiac gluten intolerance, but there is no difference in the way they are treated. i’ve heard that the non-celiac gluten intolerance does not cause villi damage—but i don’t know if that is true or not. i had several melt-downs when my girls were first diagnosed, but it has turned out to be not as hard as i thought it was going to be.

there is a definite difference between wheat allergy and celiac disease. with celiac you also cannot eat barley, rye, spelt, and most oats are contaminated so they are not safe. we have bought some guaranteed gluten free oats from a company in wyoming run by a celiac family.

is your doc running the TTg test? that is how my girls were diagnosed. all 3 of my girls had different symptoms.

there are some good resources on the internet for ordering gluten free food. there are also some good cook books you can buy. feel free to email me any time if you need to talk celiac!

[email protected]

[Anonymous]

Oh Christine, thank you so much. I appreciate any advice you could give me on this. I am not sure what tests the doc is running. I have an appt with her first to go over everything and then she will send me to get the blood work done. I will make sure she is running the TTg. Are there any other tests that I need to make sure she runs?? I am trying to educate myself as much as possible before I go in so I know exactly what is going on.

Is Celiac disease the same thing as an allergy to all foods with gluten?? The doc said she will probably put her on a more stronger allergy med like Cingular, are any of your kids on allergy meds??

I will definitely ask the doc if a gluten intolerance causes villi damage, b/c if it doesn’t that definitely indicates celiac.

Again thank you for your help and offering your email address. I will email you and get the internet sites that you have. Thank god for the internet!!

[Anonymous]

celiac is not an allergy. when we first suspected celiac, the allergist ran a celiac screen on tianna—she also was having allergy testing done. her tests showed her as not being allergic to anything—not even wheat, but her celiac screen came back positive. he then wanted to turn her over to a gi. the TTg test (tissue transglutaminase) is the newest test for celiac. some doctors have never even heard of it. when tianna was in the hospital in seattle, i suspected she was getting gluten and asked to have a TTg run. the doc didn’t even know what it was, but he ordered it——and i was right, the hospital was getting gluten in her diet. her levels were over 100—-they had been 10 when she went into to the hospital.

allergy meds will not help celiac—–i am assuming emma must also have allergies and that is why the doc is putting her on allergy meds?

celiac is the only autoimmune disease that is completely controlled with diet. if the diet is followed faithfully, blood tests will appear normal.

don’t take her off of gluten before her blood work is done or it will mess up the test results.

i think that the big difference between celiac and non-celiac gluten intolerance is that celiac can cause other complications and raise your risk for other autoimmune diseases and cancer if the diet is not followed. damage is being done to the intestine even if you get no symptoms after eating gluten. kassie gets nauseated and the runs when she gets gluten, tianna gets a really nasty rash—dermatitis herpetiformis, and molly doesn’t get any obvious symptoms.

and endoscopy that shows villi blunting is suposed to be the “gold standard” for diagnosing celiac disease——some people will have negative blood work with a positive biopsy, and some will have positive blood work with a negative biopsy. it can sometimes be a tricky diagnosis to make—plus the fact that it used to be considered a rare disease. now they call it “the common disease that no on has heard of.” i spend alot of time on celiac.com these days. one of my twins also spends time on the boards there. it is a place where she can talk to celiac kids near her age. we only know of one other child in our town with celiac, so i kind of feel like we are in a different world from most other people.

one day when i told an old friend that my kids had this disease, she turned to her husband and was telling him a little about it. in the conversation, she told him it was a nightmare for mothers—-and i remember thinking “it’s not THAT bad.” this was, of course, after i had gotten over the initial meltdowns! LOL!

you and your husband should be tested for celiac also. our ped gi told us that is how they find some celiac patients—-by testing family members of known celiacs—–that is what happened with my kids, we suspected it in one, and tested the others because it is genetic.

kevieb2006-9-7 19:3:2

[Anonymous]

Brandy, I’m so sorry to hear that they think it’s celiac, but at least you have answers, and hopefully Emma will feel better. Does anyone in your family have this? I’ve been worrying about the same thing with Hailey, so I can imagine how you feel. Christine is a great resource, so I’m glad she can offer you some advice. Did Emma have any symptoms? Good luck and BIG HUGS. We’re going for our scope next week.

[Anonymous]

My son just had his blood drawn to test for Celiac today. I am petty sure he does not have it, but he has been having a hard time tolerating any new foods. My ped wanted to be on the safe side a rule it out.

I hope you are able to get all the answers you need. Good luck and keep us posted.

[Anonymous]

Brandy, Christine answered most of your questions. She really is an excellent resource for celiac! Kaelyn’s wheat allergy was diagnosed with a blood test. Like Christine said, a wheat allergy is definitely different from celiac. Kaelyn can have gluten, she just can’t have wheat. However, I often just try to avoid all gluten because if the package says gluten free then I know that it’s definitely wheat free. The allergist also says that Kaelyn has a good chance of outgrowing her wheat allergy and you can’t outgrow celiac.

Emma is just a little bit older than Kaelyn was when we diagnosed her allergies. When you first switch her foods, she may notice, but Kaelyn adjusted quickly. For example, Kaelyn asked for mac n cheese for a week, but quickly got used to the rice pasta and soy cheese that we gave her instead.

[Anonymous]

Thanks everyone, I really appreciate your help and support

Lori ~ There is no one in our family that we know of that has this and no one has ever heard of it. My husband does not know most of his family members though, so that might be the problem. The only symptoms Emma has had is excessive bloating and gas and occasional diarrhea and mucous. One day she can have 3 loose BM’s and like yesterday she didn’t go at all, it is so weird. Good luck with Hailey’s scope. I heard so many say its not that big a deal, but I didn’t know it would be as easy as it was on Emma!! Emma is having her blood work done on the 12th.

Christine ~ Thanks again for all the great info, I have a lot of studying to do!! I was thinking all wrong so I really needed the info. The GI nurse that Emma sees called me back last night. I forgot to ask her about the test but I will take all my questions with me to the appt. She called me back to tell me that Alimentum does not have gluten in it, b/c we were both curious. I did ask her if she had the gluten intolerance if that would show villi blunting and she said yes, she said any gluten problem whether the intolerance or the disease would show villi damage. But like you said and the GI said the blood work could be wrong. The only reason she doesn’t think that it is the disease is b/c she has had bloating since she was born. But I think a lot of baby’s have bloating until they grow out of it b/c she get so much air, especially reflux babies that cry a lot. I gave Emma Gerber rice cereal at 4 months, that was before I found out it was a no-no and then I gave her Beechnut, if they have gluten in it, that could have started this. Plus she has had A LOT of gluten since she turned a year old.

She wants me to try Elecare formula and see if that helps. I asked her if all along it was the gluten and not the milk that we thought she was reacting to. She said that since her small bowel is so irrated there is no way that it could have broke down the protein and lactose in milk. She said it could be just a gluten problem and once the bowel heals she might be able to tolerate milk. Since Alimenutm has milk protein in it, even though it is broken down into smaller pieces her bowels still might not be breaking it down so the Elecare and a gluten free diet should heal her. I do understand that it might take a long time.

I have to go to the hospital today and pick up some cans of Elecare and some stool sample cups. Along with blood work we are going to see if we find anything in her stools. We got insurance to cover Alimentum for 18 months so hopefully with the all the tests results they will cover the Elecare if that helps here. The bad thing is, is that a couple of cans might not do anything since she is so irrated.

Oh, we are going to keep giving her gluten before her blood work, thanks for the thumbs up. I also think it is a great idea for us to get tested, we will be doing that. What do you think about this?????

btrue2006-9-8 10:23:17

[Anonymous]

kevin and i both come from big families and as far as we know, no one has ever been diagnosed with celiac disease, but we both have autoimmune diseases in our families. most likely, we have relatives that have had celiac disease, but were never diagnosed. i have heard that milk problems can cause villi blunting, but i don’t know if it is a very common thing. sometimes, someone with celiac will also be lactose intolerant because of the villi damage, but once the villi heals the lactose intolerance goes away.

do you know about the need to be really careful about cross-contamination issues? when my kids were diagnosed, i took all the flour out of my kitchen and i vacummed and wiped down most of my cupboards. i bought a separate toaster that is labeled GLUTEN FREE so the other kids won’t use it and get gluten crumbs in it. some people replace all their cookware—-i did not do this and we have not had a problem. we keep separate jars of peanut butter, jam, mayo and miracle whip that are all labeled gluten free. i also buy condiments in squeeze bottles, when i can, to help eliminate cross-contamination. i cook all meals gluten free for the entire family, but i do buy things like cookies, bread and cold cereal for the rest of the family that have gluten in them because it saves me some money. i think that the hardest part of being gluten free is traveling and eating out. we don’t eat out much, but we have been doing a fair amount of traveling for tianna’s eating disorder appointments. kassie is on the JV soccer team, but she manages to find something safe to eat when they go to away games.

[Anonymous]

Ok I am 35 yrs old and have a 5 month old, she does not have celiac but I do….. It is not that bad…..Once you get the hang of the gluten free diet she will be sooooo much better, it doesn’t really matter celiac or gluten int. both treated the same. I strongly suggested logging on to a celiac forum, good luck, and remeber it is purly diet controlled

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