Search Results for 'celiac'

[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!

kevheiner@msn.com

[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]

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]

I don’t know much about celiac but hopefully someone else will post who

does – I know a few members here are pretty knowledable on the topic. I am

glad that you are starting to get some answers – I know it must sound scary

but it’s good to know what’s causing the problem so you can eliminate the

gluten and help Emma feel better!

[Anonymous]

Emma had her endoscopy last Wednesday. She did great, she cried when they started the IV but that was it. Afterwards she wasn’t groggy or nothing, she was ready to play and ready to eat. I was so relieved that she did so great and that she wasn’t sore at all. The scope itself showed no damage.

Well the dr called me back today to tell me the biopsy results. Her stomach was a little irritated, she said nothing to be alarmed about, but her small bowels were severely irritated and she said something about the villa splinta was blunting. Hopefully somebody knows what I mean b/c I was so alarmed I didn’t pay attention to those words b/c she said that normally means you have Celiac disease. WOW! I knew something was wrong I just couldn’t pinpoint it.

She said normally they stop at that and give the diagnosis but she wants to do bloodwork next Tuesday to conform. She said either way if it’s the disease or just a gluten intolerance she has a gluten problem and we will stop all gluten after the tests.

Well I was reading some past posts and realized that some biopies miss the gluten problem so my question is, if the biopsy comes back with these results does that pretty much say that she has celiac disease or does the blood work?? but yet she said the blood work results are 95% accurate which could leave a small percentage of being wrong???????? . I know she has a definite gluten problem but I hear the celiac disease is worse and I would like to know if she had the disease vs a gluten intolerance.

I am a mess!! This is all so crazy!! Overall she is a pretty happy baby, I just thought there were more symptoms other than bloating, gas and mucousy diarrhea. Please help!!!!!!!

[Anonymous]

Robin,

We did Lactaid milk at the Ped’s suggestion when Hailey was around 18 months or so. She’d been having all sorts of trouble with loose stools. Her stools were tested for everything and she also had a blood test done for celiac – all of which were negative. Her diagnosis was “toddler diarrhea”. It passed after a few months. Let us know what you find out!

Hope all is well! Sorry I haven’t e-mailed you. Things have been crazy here. I was in Germany working for two weeks and then dh has been gone on a business trip before that we had a couple of birthdays so life for us has been insane for the last month or two. He’s coming home tonight and I look forward to life getting back to normal!

[Anonymous]

I’m really not much help with the false pos/neg issue. Our ped said one thing and our allergist said another. I’m leaning towards the allergist. He said that the RAST could have false negatives because it detects antibodies and it takes more exposures for them to build up. (I think that’s how he described it.) The skin test can have false positives because the skin can be overly sensitive and react when there is no real allergy. That’s why the size of the skin reaction is so important.

We were told that they had to have had gluten recently to do a celiac test, but for allergy testing they just have to have been exposed to it at some point.

[Anonymous]

celiac testing isn’t real reliable at this young of an age. also, some tests for celiac are alot better than others—-do you know what tests were done to test for celiac? three months off of gluten could effect the test results.

[Anonymous]

Okay, so I just want to hear from all you guys out there who have had allergy testing done…

My doc said the blood RAST test mostly gives false positives, and usually NOT false negatives. Therefore, when we got back Lucas’ test results and everything was negative, we breathed a sigh of relief. It seems a lot of you out there have had a different commentary from your docs? Just wondering what you’ve been told…

Also, when Lucas had the blood RAST test and celiac blood test done, he haden’t had many of the foods being tested for in his system for quite a long time (18 mos since having beef and tomato, over a year since having dairy and soy, 3 months since having gluten). Our allergist said this was fine, if he had EVER had it, that was enough. I was worried because I wasn’t about to reintroduce something just to take an allergy test. Yet, he said it was fine. I’ve also read recently that some of you have had a different commentary on this as well, can you share your stories?

This is so confusing!! Have any of you read these stances anywhere like in a medical journal or on a medical/allergy web-site?? I’m just wondering how I should feel about his test results and reintroducing foods this Sept (we agreed we would begin trialing foods in Sept “since he’s not allergic”).

Thanks for any input.

[Anonymous]

Hi Julia,

I responded to you in another post, but wanted to write in here as well. A GREAT link with info on intolerances:

http://72.14.203.104/search?q=cache:z7C1J8hLZY0J:www.disa.co m.au/Food%2520Intolerant%2520and%2520Allergic2520Baby.htm+fo od+intolerant+allergic+baby+disa+au&hl=en&lr=&st rip=0

I have been nursing my son, Lucas for 23 months. He has multiple protein intolerances and can’t deal with teh following foods: dairy, soy, beef, gluten, tomatoes, citrus and broccoli. I have removed all of them from his and my own diet. We’ve been tomato/beef broccoli free for 20 mos, dairy and soy free for over a year, and gluten free for almost six months. It’s been a trial, but worth it.

We have been to the allergist, had the blood test for all the common infant food allergies (the top 8 or 10, wheat, dairy, soy, peanut, etc. etc.) The test came up negative for EVERYthing. We also had a blood test for celiac disease done, since he improved dramatically with the removal of gluten. This also came up negative. The allergist then said he has multiple protein intolerances and we shoujld begin trialing foods again when he’s two. He said they usually either wait until the child is two, or give the child six months of being “clear” and trial foods again.

There is NO problem with you nursing your child at this point, if it’s what you want to do. Dr. Sears, a pediatrician and author, points out that children continue to benefit from breastmilk and breastfeeding until it ends no matter when that might be. So, kids like mine, who are definitely out of infancy, are still benefitting from the immunity and other properties of breastmilk even at this late age. this decision should be yours ALONE, in my opinion. Your NP sounds like a real horses &%!#@* to me!!! i hope that’s not offensive, but I can’t believe what some people try to tell you about bfeeding and reflux!

Anyway, here’s a link to Dr. Sears’ website as well:http://www.askdrsears.com/html/2/T020100.asp

Some food ideas:

Rice Dream rice ice cream

Karma Rice Ice Cream

Popscicles

Gluten free/dairy free soy free brownies, choc chip cookies, breads, pancake mixes by Bob’s Red Mill, Arrowhead Mills, Pamela’s

Hummus dip with rice crackers, cucumber, carrots

Dairy/soy/wheat free frozen waffles (Vans, Trader joe’s)

Pizza is a hard one, butyou can get pizza dough that’s gluten free, and then put things on top of it, eggplant, sauces, etc.

Potato wedges in the oven with salt, pepper and olive oil– tastes like yummy french fries but is healthier and made at home

Gluten free cereals (Gorilla Munch, Amazon Flakes) with Rice Dream Rice milk

there’s more, but I can’t think now. Don’t hesitate to ask more questions! And keep up the good work, it sounds like you are doing a wonderful job with managing your child’s reflux!!!

[Anonymous]

Lynn:

Yes I would love the recipe! I’ve been using a lot of mixes but they are expensive and I think I’m ready to mix my own stuff….maybe–haha.

And, yes, the allergist told us that Lucas has multiple protein intolerances which have caused all his reactions to foods and the severe night wakings that went away with the final removal of gluten. I’m just confused that so many docs are contradicting themselves. Did you find anything on the web or anything WRITTEN that states they have to have the foods close in time to the test in order to test positive? Lucas had MOST of the offending foods in his blood allergy test OUT of his diet for a minimum of 3 months (Gluten) and haden’t had dairy in his system for over a YEAR at the time of testing. I guess eggs and peanut butter have been in my system and I have been nursing, so that one has been going through his system the whole time (we did our own elim diet and eggs and peanut butter came out clear), but the others haden’t. What do you think?

Also, do you think that the celiac test sort of legitimizes a negative for wheat allergy, since a celiac test would catch the wheat? Or I guess you can be allergic to wheat and not have celiac, like it sounds Kim’s daughter is??? This is so confusing!!

Kim: No worries, you seem to be so knowledgeable about this I thought I would ask!

Julia: Intolerances cannot be “tested” for unless through the elimination method, where you remove the food, and if the baby improves you note that, then you reintroduce the food, and if they react poorly again, you have positively identified the intolerance. Our ped and allergist explained this to me, and the web link below will also explain it to you.

I would definitely NOT just start giving your child things that have bothered them previously without reading this below and I would carefully trial each food that you think gave a reaction. Remember that dairy proteins can also build up in the system, so they can be okay for a period of time and then WHAMMO, symptoms reappear again due to a dairy intolerance. If you are bfeeding, (like me) then you can introduce hidden dairy into your own diet, then yogurt, then cheese and finally milk, and then do the same process with giving foods directly to her. Or you can just do hidden dairy for her, yogurt, cheese and milk for her directly. It’s so hard bfeeding, cause I feel like it delays the reaction and isn’t as direct as them just having the food themselves. At the same time, I want to eat normally again, so it’s tempting to eat the stuff myself and have it go into their systems that way. I’ve not been told a “best practice” in this regard, bfeeding mom eating the foods, vs. giving it straight to baby for a baby who is over a year. Under a year, definitely no milk, but still, I’m not sure best practices in this regard.

The link below is a GREAT explanation of protein intolerances:

http://72.14.203.104/search?q=cache:z7C1J8hLZY0J:www.disa.co m.au/Food%2520Intolerant%2520and%2520Allergic2520Baby.htm+fo od+intolerant+allergic+baby+disa+au&hl=en&lr=&st rip=0

[Anonymous]

Anne, we didn’t have the celiac test done because her issues cleared up when we cut the 4 allergens from her diet. So, I’m not sure. Sorry.

[Anonymous]

Hi Anne- Thanks it was a new brand of cinnamon maybe it is cross contaminated. Never thought about that! Thank you! She is doing somewhat better this week. We’ve increased her Axid to 1tsp 2x a day to see if it helps. Oh the joys of reflux!

Kayleigh did not have a celiac panel done nor am I aware of any specific gluten allergy test other than that. We had a RAST done when she was about 13 months and it came back saying highly allergic to wheat and so we eliminated it and I saw no difference after 3 weeks so her ped said to remove gluten and within a week I saw improvement. So she has been GF with 3 exceptions (oops!) since 4/05. I too was told by a lab tech and Dr that if they had not been ingesting those foods (to be tested) within a certain time frame then it could come up false neg which is another reason I’ve not had Kayleigh tested. I think they said she would have to ingest it for at least a month or so for it to be useful for testing purposes. No thanks! So we used the RAST and elimination to determine her allergy.

Remember though if Lucas is neg for allergies he can still have intolerances which can be just as bad as an allergy if not worse!

The bread that I was referring to is a zucchini bread. She loves it! She’s been eating zucchini for over a month and no problems so the only new ingredient was the cinnamon since I frequently make her breads with almost the same basic recipe. I use the Hagman’s flour recipe. Which is a mixture of white rice flour, tapioca flour and potato flours with xanatham gum. I just replace it cup for cup in all recipes that call for regular flour. If you’d like I’ll post the actual measurements for the flour mix.

[Anonymous]

Kim,

Yeah, that’s what I also thought, that celiac and elimination was the only way to tell with gluten…which is why I was so interested in Lynn’s sign out which says gluten allergy…

Lucas had been off gluten for approximately three months prior to the testing, which I clearly explained to the allergist and he said was fine. I think he said that if he had EVER had gluten it was fine (and he’d had a lot of wheat bread products until age 17 months). He even indicated that one of Lucas’ blood levels showed that he has a low probability of allergies to ANYthing, let alone all these different foods. I’m hoping he’s right, yet it’s always strange to hear that docs are contradicting each other. Did Kaelyn have the celiac test done? What did they say about how long beforehand that she should have had gluten products?

[Anonymous]

Anne, I could be wrong, but I think the celiac test (and food elimination) is the only way to determine a problem with gluten. When they tested Lucas for celiac had he been eating gluten prior to the test? Our allergist said that they won’t test positive for celiac if gluten hasn’t been in their diet for a while.