Search Results for 'celiac'

[Anonymous]

I believe I read in one of your posts that neither you or your dh have celiac yet 3 of your children do. I was told by my dr that if neither I or dh tested positive then our dd couldn’t be positive. But I’m beginning to doubt her knowledge in this area. Kayleigh’s been GF since 3/05 and I know I’d have to reintroduce it to have her tested so I’m not sure what to do. Also,her nuerologist said today that he wants her to have a small amount of gluten before her EEG because she does have an increase in seizures when she’s had an accidental ingestion. So maybe I should get her celiac panel done at the same time if my dr was incorrect. Thanks

[Anonymous]

kara, where are you? i am in southern idaho—burley to be exact.

we go to dr. henry thompson in boise and i practically worship the ground he walks on!

my youngest, sylvia,was failure to thrive, anemic, refluxing almost 25% of the time and her esophagus was getting ulcerated. we discovered she was not gaining weight before we would have even been able to get in to primary children’s. sylvia had a fundoplication when she was almost 10 months old. i also have fifteen year old twins with reflux that dr. thompson treats. also, my twins and my 11 year old have celiac disease—-once again, dr. thompson is the one we take them to for this. one of my twins also has an eating disorder—-dr. thompson was the one to first suspect this. he hospitalized her at st. lukes for 2 weeks and then sent her on to seattle children’s.

another thing i really like about this doc is that he is almost the same age as me and his children are the same age as my youngest kids—–he has twins that are just 4 months younger than sylvia. let me know if you want a phone number—-in fact, we are seeing him tomorrow, i can get you a card—–i am assuming you must live somewhere near me?

kevieb2006-9-14 20:30:48

[Anonymous]

Thank you all for your responses!

Today I asked for a test for celiacs and allergy testing. The doctor agreed to both. We do the blood test for celiacs on Monday and I have a referral to a pediatric allergist. He did say however that both sets of testing were definitely less accurate at this age.

As far as scoping etc. I will have to ask the ped. GI. (again). I have definitely been thinking about changing doctors. We are in SE Idaho. The referral clinic for here is Primary Children’s hospital in Salt Lake City which is where we have been going. It is three hours away. Boise is four hours away and there is a pediatric GI there at St. Lukes that I could possibly try (it is a much smaller clinic than the one at Primary Children’s).

I have to say though that I thought long and hard about it at first as our doctor would have referred us to either but I felt much better about Primary Children’s. Beyond that, if I were looking for a larger metropolitan area that might have better doctors, I guess I would have to look at Seattle area, Portland area, or maybe Tri-Cities or Spokane. That would be a serious trek. I think it is about 13 hours drive to Seattle. I do have family I could stay with though.

My difficulty is that if we are going to make a switch, I really need to KNOW that I am headed somewhere likely to be better. The ped. GI we are going to now is very well respected. I don’t have the time or the money to be doing trial and error right now. If you have heard of someone wonderful in the Northwest or Utah I would love to hear about it!

Thanks,

Kara

[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

[hellbennt]

I’m with Andrea.

also, if you want to continue breastfeeding (if this gives him comfort, etc) and you don’t want to switch to formula until you know for sure that you have to, then this would be another reason to find another doctor/opinion

personally, I’d want a LOT of testing- that’s just me- I’d want an endoscopy to see what the heck is going on on there, I’d want allergy testing of some sort(because celiac and wheat allergies are 2 seperate things), celiac testing…

there’s a post from the MSPI link about misdiagnoses- this might help as well…

[Anonymous]

Thais,

The only test we’ve had done is a swallow study which did not even show reflux. That was done by our pediatrician. The ped GI. said they only do the other tests when a baby is loosing signifigant weight. Our ped. said that they have changed their appoach because they used to routinely do those tests when he referred patients there. He was surprised. We both have asked specifically about having them done.

They do believe that he is so anemic because of bleeding in his GI tract (loosing it through his stools). The bleeding was confirmed with the stool sample. They did not say what kind of anemia. The term the doctor used was “PROFOUNDLY anemic” and he said this is usually accompanied by other deficiencies. I didn’t quite catch the “profoundly” at first and it took a bit to sink in that he was talking about something more than just ordinary anemia. Most of the links I could find on it had to do with children in third world countries. Apparantly it is a leading cause of death of children in these areas.

The doctor didn’t say anything about malabsorbtion but I’ve read since that anemia and celiacs are linked. The damage caused by celiacs causes malabsorbtion. I would like to have him tested for it and have called the Dr. to ask about it but he did not return my call. I see him tomorrow with my older son so I will ask then.

To me it seems like it is definitely time for some testing and some answers however, once again, their protocol for this situation does not include testing. They want him on iron and as much formula as possible for a month and then want to check his iron levels again. They said that his iron levels should show dramatic improvement in a month.

Did I answer all your questions? Thanks for taking time to read my long post!

Kara

[Anonymous]

thank you to everyone and there advice. it’s sad to know that reflux issuchch a prevelant thing and that i had never really known how bad it really can get. Grace is going to the GI specialist on thurs. Hopefully they can figure something out. The only concern that i have is that this is the same specialist that saw her the first time that she was hospitalized around 14 days old. they had done some tests in the emergency room and saw reflux. the specialist only saw her for a couple of minutes and that was it. hopefully he will be more proactive this time around. also i just wanted to say that my grandmother and my aunt had celiac disease but grace doesnt; really have the symptoms for it. i feel so bad for my 4 year old because i never have quality time for him anymore. sorry that i am rambling on but i have no time in my life to type anymore with the reflux going on. thanks to everyone!!!!!

[Anonymous]

Thanks for asking Chirstine. He is doing pretty well. The ped just had us do a blood test for Celiac (sp?) . He said he does not really think that he will have it, but just wanted to rule it out because of all the food problems. I am glad to hear that Miles is doing well with only a few foods. I really don’t think much of it until I see or hear about other babies his age eating everything in site. Then it makes me feel bad that he is not experiencing all the fun new foods.

We are going to do a swallow study soon, because he is still choking and aspirating a lot. I can hear him refluxing a lot but he has been very happy lately so I don’t think he is in any pain which is really good.

He is still up ounce a night for a bottle. I asked the ped about it ask his nine month check up and he said that it sounds like he is just hungry. He said he is growing so well that I should stick with what is working. He said he is not getting enough during the day to cut out the night time bottle. So I guess I get to keep getting up.

He is still a very busy boy. He is all over crawling and pulling up on everything. He tries to eat anything he can get his hands on. I guess he is making up for the lack of food options. I have a feeling he is going to be a little stinker. He is just so darn cute about it, it is hard to yell at him and not smile. I am so pathetic, I was always the tough one with other peoples kids and I am a big push over with my own.

That is funny you asked. I made the ticker and then was going to write a post about it on the day that we got hacked. I honestly could not remember if I did it or just thought about it, and I could not look it up cuz the posts were gone. I am really losing my mind these days.

But anyway, yes I am pregnant again. I am due April 2. I am really excited about it, but also scared to death. I am really starting to wonder what I was thinking. I can hardly keep up with the one kid that I have now!

Thanks again for asking about Sebastian. It is so nice having people that don’t even really know us that care. I am always thinking about all the little ones.

[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]

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]

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]

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, 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]

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]

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!!