Search Results for 'celiac'

[Anonymous]

Hi there,

Lucas is four years (and a few months) old and now that our new baby is sleeping and her reflux is under control I think I’m ready to do the celiac blood test. our ped gi had said these results aren’t accurate until after they are four and I had read after age three in some other places….maybe even in one of your posts. Anyways, I want to check with you to see if this sounds right. He said we need to give him gluten for a minimum of two weeks, or up to four weeks and then we can do the blood test– just at the hospital lab. He gave me a little kit to take to the lab and said that was that.

He’s been gluten free since age 17 months, and except for very minor slips and maybe two times trying to trial it for a few days, has had none. We are VERY careful. I’m a worried about his reaction. The doc said a piece of bread was “enough” gluten each day, I asked because I really don’t want to give him that much if I don’t have to. Does this all sound right with what you know from your docs? Also, I am going to look for diarrhea, stomach upset, night wakings (that was our struggle before going GF) and is there anything else really obvious that I should keep an eye out for? The doc said this test is accurate and if it’s negative, it just means he has a protein intolerance and will hopefully grow out of it. Are there other tests for celiac or is this how they normally do it? Thanks in advance for any info you have.

[Anonymous]

It’s an esophageal scope, They sedate the child, put a camera down, tke pictrures and 4 tissue biopses.

if a doc is suspecting celiac, they need to take alot more than 4 tissue biopsies.

our ped gi let me stay in and watch while tianna had her scope and biopsies. he had me stand next to him and hold onto her hands to keep them away from her face—talk about a struggle. i found it really interesting to watch.

[Anonymous]

Colleen,

Yes, i was nursing him, and then removed gluten from both my own and his diet (he ws 17 months old) and definitely saw a difference. BUT, he was ingesting gluten on his own and through my bmilk (if it goes through bmilk like other foods). I think I initially removed it from his diet but within a week or two did my own as well. I also removed all oats because of cross contamination issues. We have since been able to find Bob’s Red Mill gluten free oats and I’m sure there are other brands out there as well. I was very cautious of ANYthing that didn’t say gluten free initially. If your baby has never had gluten on his own yet, then you could remove it from your diet and see if there is a difference. I guess it all comes down to how miserable you are. I got to where I was so miserable that I didn’t care WHAT I had to do with my diet if it meant a chance at better sleeping. remind me, is he on prevacid or a ppi drug? We also needed zegerid– did much better on that than prevacid– and needed a high dose like those recommended by the Mid-west Acid Reflux Children’s Institute. http://www.marci-kids.com– you’ve probably already checked their site but just in case, it’s a great resource.

[Anonymous]

Thank for the reply. Ashlynn has no symptoms of celiac they just want to check since she is still refluxing. We did do the blood work a couple of months ago and that came back negative. I am sure I will be checking back if things comeback postive for celiac. Thanks again

[Anonymous]

make sure that they take alot of biopsies in the duodenum when they test for celiac. celiac damage can be very spotty—plus, the scope can only reach about 6 feet into the small intestine, which is about 22 feet long—-that is alot of small bowel that can’t be biopsied. i really don’t understand why they consider it the “gold standard” for diagnosing celiac.

as long as they are going to check for celiac, i would ask to have the blood tests done also—even though they are not particularly accurate at her age.

why do they suspect celiac? any particular symptoms that stand out? of course, all 3 of my girls had different symptoms—-one of them had NO systems.

kassie showed no damage—but they weren’t looking for celiac, either. she was the one that had what would be considered the closest to the old “classic” symptoms of celiac.

tianna’s symptoms were rashes and she had a positive celiac screen, but her biopsies showed no damage, only one area of increased intraepithelial lymphocytes.

the doc did not even bother to biopsy molly since i had 3 girls with positive blood tests.

soooo, is all this about as clear as mud?

kevieb2008-12-11 21:00:32

[Anonymous]

Ash had her 18month checkup with her Gi Dr and we have decided to do a scope. She said that it would take a couple of weeks to get it scheduled. She said that they would take several bx’s of esophagus—stomach and the small bowell. I know there are many of you guys that have had this done. She also said that they would test for celiac disease. Hope everyone is doing good and has a Merry Christmas and a Happy New Year.

IF anyone has any suggestions that would be nice

[Anonymous]

christine–thanks for the info. on enterolab! That helps A LOT.

[Anonymous]

i can tell you right now that if you test with enterolab that it is almost a 100% guarantee that you will be told that you are gluten sensitive since the list of genes that dr. fine considers to be “gluten sensitive” genes is HUGE. you’re also pretty likely going to be told that you have a casein intolerance. dr. fine doesn’t believe that anyone should consume dairy products. i just saved you a bunch of money!LOL!

he has never published his findings—–so there has never been any peer review to his work—–although he has been saying for years that he is going to publish.

my family participated in a celiac study that was done by the univewrsiy of california,irvine. to be eligible for the study. you had to have at least 2 family members that had been diagnosed with celiac by either biopsy or blood test. the lady that was running the study told me that they did not accept anyone into the study that had been diagnosed by enterolab—-i don’t think his work will be considered reliable until he publishes his findings and his work is shown to be reproducible in other labs.

oats do not contain gluten, but most commercial brands arte considered to be contaminated, so should be avoided by anyone wanting to be gluten free. however, there are a number of companies out there that are now selling guaranteed gluten free oats. they cost quite a bit, but i am willing to pay for them so we can make the “amish baked oatmeal” that we like so well. they’re great for meatloaf and meatballs, too.

kevieb2008-12-11 13:34:38

[Anonymous]

Thanks everyone– we are suspecting a possible gluten problem because he doesn’t seem to improve despite trying so many different treatments.
Anne–I only did a quick google search to see if gluten passes through BM and saw that there were different opinions. I didn’t fully research it. But you said that you did see a difference when you were nursing and removed gluten?
I actually was off gluten for about a month and all of gluten except for oats for the month before that. I didn’t see a change…but it was during all of our NAET treatments and I feel like other sensitivities could have also been affecting him.
I think I’ll try it just to see if it does help…especially if the tests aren’t reliable until he is older.
if you have a chance…check out this type of gluten testing and let me know what you think: http://www.enterolab.com
it was recommended to me by my NAET practitioner. they say you can be on a gluten free diet and still show up… but I haven’t looked into what they do for babies who aren’t actually ingesting gluten themselves… seems to make sense to wait.

[Anonymous]

Hi there,

My son is definitely gluten sensitive. He ingested gluten (from about age 11 mos utnil 17) and I ate gluten while nursing him until he was 17 mos old. At that time, he STILL couldn’t sleep for more than a 2 hour stretch and I was nearing the end of my rope. He’d had all the reflux testing done, and was on a strong dose of zegerid. He (and I because of nursing) were already off dairy, soy, beef and ALL acidic foods. Anyways, I took gluten out and he began to sleep so much better. It was a really quick difference I noticed, but it truly took about six months for hitngs to really turn around. We tested him for celiac with the blood test but at that time he and i had already been off gluten for over three weeks….I think maybe four or five weeks? The allergist thought this wasn’t a problem and said he tested negative for celiac disease. Over a year later, while at a ped gi appt, I mentioned all of this and our ped gi said that they generally don’t test for celiac until after age four. They feel that the gut isn’t mature until that time and he ALSO said that testing for celiac when he had already been off gluten for such a long time would give an unreliable result anyways. I always assumed that gluten passed through bmilk…just like everything else. It never occurred to me that it wouldn’t be in there in some form, whether just at the protein level or even cellular level. Where did you hear about it not being in breastmilk? I could have saved myself a lot of heartache, money, time and kept some weight on if I didn’t have to go gluten free back then! haha I’m not sure what to advise….I was so sleep deprived nad I know how it is to so desperately need sleep adn want your child to feel better. If it were me, even all over again, I would probably just take out the gluten to see if there is some difference. If the testing isn’t reliable until they are three or four, why not try something different now to see if there is any improvement? I hear what Christine is saying about keeping them on it so you can test, but if this is a young infant, maybe it’s a little different. Once they are older then you deal with all the food issues and emotional issues of eating or not eating certain things and it’s so much harder. The only reason we took out gluten was that my chiropractor had suggested taking out wheat and gluten and that thought lingered in my mind. Let us know what happens and how you are doing.

[Anonymous]

An UGI *can* show reflux but that is NOT it’s primary purpose. An UGI will show any structural anomilies.

If there was one test I’d do, it would be an EDG. Yes, they have to go to the O.R. and get sedated and all, but, it gives a GREAT GREAT amount of info.

If I were to choose ONE test, that would be it. A simple yet extrmelely affective Scope with biopses. (4 to be exact)

I pick that one because form an EDG they can see:

1) if meds are working or need to be upped

2) if there are any EOS presnet (to DX a condition known as EE)

3) if the child has Celiac’s Disease

4) if there are any other issues IN the stomach going on like, ulcers ect…..

It’s just a very effective test and you get the most answers form it. Depending on what he EDG shows would determine what if anything (testing wise) needs to be done next.

[Anonymous]

you could have him tested, just to see how the tests come out. we tested sylvia when we tested the whole family even though she was pretty young. in our family’s case, we know that 10 of us are genetically susceptible to get celiac since we have had genetic testing done. don’t know why it activated in the 3 girls and none of the rest of us. but, we know that we need to be tested periodically for the rest of our lives.

what makes you think that finn could have celiac disease?

you cannot become celiac until you have ingested gluten. some people claim gluten can be passed through breast milk—-but i don’t know if that has actually been verified.

if you suspect that your child has celiac disease it is NOT a good idea to take them off of gluten without having the proper testing done first.

[Anonymous]

Celiac has been brought up by both general ped & ped GI for Evan.

Our ped GI (his specialty is celiac & he speaks about celiac nationwide) said that baby has to be consuming gluten directly in order to test for celiac. So, my understanding is that you can’t tell until then.

Not sure if I answered your question though 😉

Hopefully Christine can chime in as she has celiac dc.

[Anonymous]

Hi there–
I see that there are mixed opinions about whether or not gluten passes through breastmilk. What is your experience? What do you think?

Finn could be gluten sensitive or maybe celiac. I read the posts that say tests aren’t reliable until after age 3… So, I’m wondering how I can tell now. He doesn’t get any solids with gluten yet.

Thanks for your help!

[Anonymous]

I know I have not been around as much as I used to! I do lurk and post as much as I can though, esp if I know my answer can really help. Things have been really busy around here and my little boys are growing up, becoming more active and are a lot of fun!

We are taking Landen to a new ped GI doctor next Friday. We are dealing with restless sleep, despite the removal of all foods we feel he is intolerant to, rashes, his seeking pressure on his stomach all of the time & irritability.

When he had his EDG at 5ish months old, he was on a Neocate only diet so our pedi thinks it would be a good idea for him to be seen by a GI doctor again and have more testing done so they can check for things like Eos cells (my worst fear if I am being honest), Celiac (since we’ve never removed wheat) and any other problems.

Just wanted to let everyone know what is going on. Next Fri we will be meeting the new GI dr, he is supposed to be VERY good.

Hope everyone is doing well with their little ones!