Search Results for 'celiac'

[Anonymous]

Hailey has had loose frequent stools all along too. We recently did a complete stool work up (celiac, parasites, viruses, others) and everything came back negative. Her diagnosis is toddler diarrhea. We tried multiple food eliminations (dairy, soy, etc) and nothing made her stools firmer. I also tried a probiotic, I think the same one that you mentioned. I got it at Walgreen’s too and it’s completely free of dairy and everything. It also produced no change in her stools. Still the same mushy poo as always. I think it’s worth a shot though. Another thing her Ped GI suggested was to keep her on Citrucel which bulks up the stools. We did it for awhile but I didn’t notice too much of a difference.

[Anonymous]

hmmm- I’m not sure what to say other than I feel awfully bad that you have these scary symptoms to deal with. How is the sleep – general mood – eating? Keep in mind that not all allergies and/or intolerances can be tested per se. Celiac spru ( a wheat intolerance) can cause severe gastrointestinal upset but it needs to be specifically tested. .. protein intolerance is another thing that can’t be lumped together with normal testing. .. I would still consider dietary changes since its non-invasive and quickley implemented. Heres a couple of links that you could print out and discuss with the doctor as far as reglan goes. .. whens your next appt?

http://www.infantrefluxdisease.com/infant_reflux_treatments. php

http://www.reglan-lawsuit.com/

http://www.healthsquare.com/newrx/reg1369.htm

For the most part doctors seem to feel very confident about Reglan and for some it can be a positive medication. Everyone is different but it just seems like its not a drug to be taken lightly as its side effects can be of a neurological nature and hard to detect in an infant who can’t communicate with you.

~Liz

[Anonymous]

julie, my kids don’t appear to have a problem with anything but gluten. we have only been gluten free since jan 1 of this year, but tianna’s rashes are clearing up and kassie’s nausea has improved. molly really hasn’t had obvious symptoms. there is a test i have heard of that is done by a lab called enterolab that is supposed to be able to pick up celiac and non-celiac gluten sensitivies. i think you can order the test yourself with out a doctors prescription. i don’t think that you need to be consuming gluten for the test to work. you could go to the boards at celiac.com and ask about it. i know that a number of people have used it—–i see it being referred to alot.

both of my twins have trouble with reflux and are on prevacid—-i am hoping that we can get them off of the meds eventually—-the doc said it is possible that the celiac is causing their reflux.

[Anonymous]

Hey – that is really worrisome and scary too! The only other baby I ever heard of doing that was Laurie (3under3) – one (or maybe both) of her twins threw up blood. They had known ulcers and they were later diagnosed with food allergies. .. celiac and I think milk. Sorry Lori – its been a while forgive me for misremembering if you see this. Anyway, I would definitely get a second opinion and explore the possibility of allergies and/or ulcer first before I did the test for UGE. Like Karen said, I would also have a scan done first if you need to consider Reglan. I would hate to see your little one medicated with Reglan without knowing for sure thats what was needed.

Heres a link to most of Laurie’s posts. . .maybe you can find some “clues” in there as maybe your situation is similiar? I think the one titled “really bad day” mentions the throwing up blood?

https://www.infantreflux.org/forum/search.asp?KW=3under3& SM=1&SI=AR&FM=0&OB=2

Keep us posted and good luck.

~Liz

lovemysophia2006-2-21 15:24:24

[Anonymous]

Hi Christine,

My ped strongly suspects celiac. sharon’s test was negative, but since she’s got low IgA, and hasn’t had any gluten in her diet for the past 8 mos, it’s inaccurate. Do you know if there are any celiac tests that don’t require the patient to have consumed gluten (and be reacting)? Since Sharon reacts to so much, we’re gluten-free in any case, but it would be helpful to know we should stop trialing.

Do your children with celiac react to other foods as well? Or is everything OK as long as they are gluten-free?

Thanks,

[Anonymous]

julie, 3 of my children have just been diagnosed with celiac disease. another one of my children came back IgA deficient with the same number has your daughter. we are doing further testing so that we will be able to know if he also has celiac disease. with your daughter having multiple food sensitivites, this is something that you may want to look into. it is 10 times more likely for someone with celiac to be IgA deficient. celiac can also cause an IgA deficiency. i’ll let you know what we find out after ian has his testing done.

[Anonymous]

Hi Stacey!

Thanks for your link your thread about this — hellbennt posted the info I found and posted on the yahoo reflux breastfeeding list. Small world, thank heavens!

Sharon’s IgA was .1 G/L, and the Dr said normal range was .17-2.04 (no mention of age, though), and the lab sheet showed the normal range as .2-1.10 (again, no age range mentioned). When I asked the Dr to check Sharon’s results a year ago, her IgA was .06 G/L back then.

In the research I did, I found info about IgA in food absorption really interesting, and wonder if this explains Sharon’s continuing intolerances (still all grains, most fruits and veg, and rice). We did a celiac screen too (results invalid because IgA low), but my sense is that Sharon’s problems are different, since she still can’t even handle rice.

sharonsmom2006-2-20 17:39:21

[Anonymous]

Here’s a link to my recent post about this very same thing!

https://www.infantreflux.org/forum/forum_posts.asp?TID=4739&a mp;KW=celiac

[Anonymous]

Hi Julie! Hailey just had this test done last week! She had it as part of a celiac panel. Her IgA value was 17 and the reference range on the lab sheet was 82-453, so hers looked considerably low. I did my own research and found that that is actually a reference range for adults and not children. The reference range for a child ages 1-2 is 14-106, so hers is barely normal. I talked to her Ped GI on Friday and he started to tell me that she had a low IgA until I told him about the research I had done. He looked it up for himself and I was right. She is not deficient.

Do you know Sharon’s exact level?

In my research, I found out two things – one that doctor’s mistakenly diagnose an IgA definciency by not looking at the age specific reference range and two some babies are IgA deficient for an unknown reason and spontaneously their IgA’s level normalize by age 4 so an accurate lifelong diagnosis shouldn’t be given until then.

[Anonymous]

kevieb wrote:

amber!!! i have wondered where you dissappeared to!! i am eager to hear the rest of your update. i was so surprised to see a post from you. reading about aidan sure brings back memories of my 16 year old as a toddler—–i thought there was something wrong with him from early on. we thought he might be autistic, and had more than one person tell us how much he reminded them of some other autistic child that they knew. i remember the frustration of not being able to communicate with him—–it only happened if he initiated it. ian did not talk until he was 3, before then, he had his own language. he had all the intonations of regular speech, but very few real words. he would ramble on and no one knew what he was saying. people even referred to him as speaking “ianese” or the “adamic language”. he cried for 2 years. he also had self-stimulating behaviors and echolalia. i also felt like he would get frustrated when he couldn’t get across to us what he wanted to tell us. ian also was very sensitive to loud noises—-he still does not like alot of noise. i had never been aware of the sensory issues Janice has talked about until after sylvia was born. when i have read about it—-i see ian and even my self as being a little sensitive when it comes to sensory issues. i guess i should tell you that ian is a “relatively” normal teenager. (like normal and teenager can really be used in the same sentence!LOL!!) we had ian in the developemental pre-school in our school district for 2 years, he also had speech therapy. then we moved him to a private pre-school for one year, and then he started kindergarten when he was almost 6 1/2. by the time he hit first grade, it was his fifth year of school. there WAS something wrong with him—but we don’t really know what it was. we have recently learned that he has an IgA deficiency which probably explains in part why he was so sickly as an infant. my twins and molly have just recently been diagnosed with celiac disease and we are in the process of trying to get some other testing done for ian to see if he also has it. his IgA deficiency made his celiac test worthless for the doctor. would you send me an e-mail so i can keep in touch with you? i typed a bunch of other stuff to you, then erased it all—it was starting to be a book.LOL!

kevheiner@msn.com

i didn’t even tell you about sylvia—-she is doing wonderful!! she had obstructive sleep apnea. we had her tonsils and adenoids removed and her ingunal hernia repaired and we saw major improvement in her. she eats well, looks healthy, and competes with samantha in ruling the house!

That is what I was going to say too. Get tested for Celiac disease. I have that and it can really make you feel and act different. Go to http://www.celiac.com and read about it. I hope you find something that helps him out.

[Anonymous]

Well, I finally talked talked to the Ped GI. He started off by saying that her celiac panel came back negative but that her IgA values were “quite low”. The reference range on the sheet remember was like 80-400 or something like that. So, I asked him if that IgA reference range was for a child her age. He told me to hold on while he looked it up. He came back on and said “well, she’s fine the range for a child ages 1-2 is 14-106”. Thank goodness I looked this up myself or I would have been worried about it.

[Anonymous]

one of my twins had a gastric emtying scan in december—i sure this is totally different because she is 14. she had to be fasting, when she got there they gave her a scrambled egg sandwich—the nuclear medicine was in the eggs. they also gave her toast and something to drink—-they did not rush her in eating. they took pictures of her stomach about every 15 minutes for a couple of hours. this was before we figured out that celiac disease was the cause of her problems.

[Anonymous]

yes, it is hereditary—but we don’t know if it is kevin or I or both of us that carries the gene. there are 2 genes that are known to be involved with celiac—-i have heard some people say there may be more genes involved, but i have never read anything that confirms that. as far as we know, no one in either of our families has ever been diagnosed with celiac. it is thought that celiac is far more prevalent then they used to think. instead of 1 in 5000, the estimate is now 1 in 133. many celiacs do not have any symptoms. some people first learn they have celiac after they have been diagnosed with intestinal cancer or some other autoimmune disease. between kevin’s family and my family there are at least 8 different autoimmune diseases. my father has an allergy to wheat—i told him he should get tested for celiac, but he thinks that wheat is his only problem, not gluten. earlier this week my mother asked to have a celiac screen done—–finally someone took me seriously. family odds are 1 in 20 for first degree relatives and 1 in 39 for second degree relatives. they have discovered that alot of people with celiac just don’t have what used to be considered “normal” celiac symptoms. we will continue to test our family periodically for the rest of our lives since celiac disease can be triggered at any time in someone who has the gene.

[Anonymous]

This is definitely a tough situation. I requested the celiac screening. Her Ped GI thinks she is absolutely fine and has what is called toddler diarrhea. Her only issue is chronic diarrhea or loose stools. She has no other issues really – sleeps fine, eats fine (for a toddler), acts mostly fine (for a toddler), is rarely sick, etc. We are really just trying to confirm a diagnosis of toddler diarrhea, which is done by the process of elimination. We did do a milk free diet (all forms including hidden dairy) for a month. I didn’t notice much of a change so I don’t think that is the issue. If the doctor tells us all is ok with this blood test, I think we’ll

Christine ~ I thought you said that celiac disease is hereditary, but there is no history in your family?

[Anonymous]

amber!!! i have wondered where you dissappeared to!! i am eager to hear the rest of your update. i was so surprised to see a post from you. reading about aidan sure brings back memories of my 16 year old as a toddler—–i thought there was something wrong with him from early on. we thought he might be autistic, and had more than one person tell us how much he reminded them of some other autistic child that they knew. i remember the frustration of not being able to communicate with him—–it only happened if he initiated it. ian did not talk until he was 3, before then, he had his own language. he had all the intonations of regular speech, but very few real words. he would ramble on and no one knew what he was saying. people even referred to him as speaking “ianese” or the “adamic language”. he cried for 2 years. he also had self-stimulating behaviors and echolalia. i also felt like he would get frustrated when he couldn’t get across to us what he wanted to tell us. ian also was very sensitive to loud noises—-he still does not like alot of noise. i had never been aware of the sensory issues Janice has talked about until after sylvia was born. when i have read about it—-i see ian and even my self as being a little sensitive when it comes to sensory issues. i guess i should tell you that ian is a “relatively” normal teenager. (like normal and teenager can really be used in the same sentence!LOL!!) we had ian in the developemental pre-school in our school district for 2 years, he also had speech therapy. then we moved him to a private pre-school for one year, and then he started kindergarten when he was almost 6 1/2. by the time he hit first grade, it was his fifth year of school. there WAS something wrong with him—but we don’t really know what it was. we have recently learned that he has an IgA deficiency which probably explains in part why he was so sickly as an infant. my twins and molly have just recently been diagnosed with celiac disease and we are in the process of trying to get some other testing done for ian to see if he also has it. his IgA deficiency made his celiac test worthless for the doctor. would you send me an e-mail so i can keep in touch with you? i typed a bunch of other stuff to you, then erased it all—it was starting to be a book.LOL!

kevheiner@msn.com

i didn’t even tell you about sylvia—-she is doing wonderful!! she had obstructive sleep apnea. we had her tonsils and adenoids removed and her ingunal hernia repaired and we saw major improvement in her. she eats well, looks healthy, and competes with samantha in ruling the house!

kevieb2006-2-16 11:8:26