Search Results for 'celiac'

[Anonymous]

this is a little whine, so please bear with me.

Kendra is finally interested in food, but the kid has a reaction to most of the food we had offered. we trialed yogurt and she liked it, but failed it (terrible eczema patches for days, loose poos and night waking/crying). we had blood worked for celiac and it was negative (i am not very convinced by this results) we had the skin testing at 7 months and it was negative (milk was one of the test) (not sastified with these results either). we have an appoinment with the ped Gi on august 23. this is so far away. i have called everybody i can possible call to move this appoinment, but no luck. my ped called them and they told her the same thing, “will let you know when you have cancellation”. Hello my baby is finally wanting some food, can you help? i want to screamiam hoping to talk or (demand)about an endoscopy with biopsy to really check for allergies like EE, which i highly suspect, celiac and other. iam so tired of “swimming against the current”. i feel the docs are so desinterested sometimes and you really has to be a pain in the a. to get some help

iam being so impatient, i can wait any more!. the OT therapy is on hold, the dietician appoinments is on hold, until we know what we are dealing with. i am scared to death to try any new food. so far she has a reaction, to carrots, peach, applesauce, baby cereals, yogurt, peas, bananas. i was advised by the dietician not to try anything new for fear of causing a microscopic(blood that won’t show in diaper) GI bleed and resulting in anemia and other problems. She was on the low side for iron last blood work. none of her diaper have been positive for blood, just one was in the middle last time it was tested. ugh

she hates the taste of the neocate, so we are just doing baby pears, cut green beans (one or two bites) and plums. these is not bad considering our predicament), but i want her to eat more of the other food, specially if she is liking them. She still vomits 1-2 times a day and only tolerates 4 oz a time. the ph probe results came back within normal limits, so the only thing left similar to reflux is EE.

i am sorry about my whine. my problems are small compare to others here, but i just feel so much under the weather by this situation.

thanks for listening

[Anonymous]

Natalia,
That is a good point but I am thinking if their concern is because of her growth she was on their curve until 6 months and then dropped but she just started eating wheat products in the last month. She hasn’t shown any signs of intolerances. In fact, she has been doing so well except the weight( in their eyes )that we are in the process of weaning her off meds (hopefully, I didn’t just jinx us).

[Anonymous]

just want to point out that a person may not be able to handle wheat and gluten and not have celiac. my son is MFPI and cant handle milk, soy, wheat/gluten. no testing for intolerances though. he is not a celiac.

[Anonymous]

Tracy and Christine thank you for your replies.
The tests came back negative is what the doctor told us so I am assuming both of the DQ2 and DQ8 came back ok. I didn’t know for sure what celiac test they did until I received a letter in the mail yesterday from Prometheus (re: that insurance may not pay the $500 and that we will be responsible for the amount if insurance doesn’t pay).
The doctors ordered the celiac and also a cystic fibrosis sweat test for her because she is in the less than 3% for weight and height, wheat allergies run in my family and my husband and I are both of French Canadian descent(which according to the nutritionist it is very prevalent with French Canadians). Apparently the nutritionist we went to thought that her growth curve looked very much like that of many children with celiac. The CF test they admitted was a longshot and it came back negative.
I really wasn’t convinced that it was celiac disease but once they brought it up and their reasoning(plus big family history of colon cancer which I read can happen if diet is not followed) I started to get concerned which is why I am wondering if there is still a chance she could have it.
I truly believe Chloe’s weight is okay (until I see the GI and they make a big deal about it). I wasn’t 20 pounds until I was over 2 years old. I am under 5 feet and I come from a family with many short people. You could line up my mother and grandmother with me and we are all under 5 feet. And my husband has some short people in his family including a great aunt about 4 foot 6. Plus Chloe is breastfed and the WHO growth charts that I found on Kellymom show Chloe as doing fine AND staying on a curve. They didn’t want to hear about those curves. Needless to say my husband and I had words with them.
Fortunately at the follow up they laid off and I noticed they had the newer WHO charts that I had not given them and they had Chloe’s weights plotted on them and they specifically referred to them and stated that she was on the curve.(score a point for mommy!).
Sorry, I got off on a tangent but I am still pretty ticked about that visit. I can’t stand doctors that don’t know a lot about breastfeeding and aren’t open to hearing about it.
Thanks again for your replies.

chloe’s mom2007-6-16 19:27:4

[Anonymous]

The mother’s antibodies is just how our Ped GI explained it to us. I did not do much researching on it bc the GI told us one day and we had the test the next day (but we were 4 hours from our home) and it was neg.

In Addy’s case, they took around 20 biopsies. He told us that he takes so many since it is usually very patchy in the intestine. So that way, the % to get a patch affected by CD is much higher (if you have the disease).

[Anonymous]

promethius is probably one of the best labs for genetic testing for celiac disease. this is where our ped gi had ian’s blood sent. he is IgA deficient, so we could not tell if he had celiac with the regular testing. some docs still do not do the Ttg test, some do the older, less accurate tests. if your doc used promethius, he had the right testing done.

testing is not really accurate below 3 yrs., but it does not have anything to do with the mother’s antibodies. some children just do not start producing the antibodies at such a young age. i know that there are children that have been diagnosed really young—-i assume they must have had alot of damage already.

what was happening with your daughter that made the doc suspect it might be celiac?

a biopsy is supposed to be the gold standard for celiac diagnosis, but the small intestine is about 22 feet long and the scope can only get into about 6 feet of that—-plus, celiac damage can be patchy—so i am not sure why it is considered the gold standard.

tianna had an iffy biopsy, the doc was looking for celiac. kassie had a negative biopsy, but the doc was not looking for celiac. when all three girls had positive Ttg blood tests, he didn’t even bother to do a biopsy on molly.

tianna had rashes, kassie was nauseated, and molly had no obvious symptoms. molly’s blood test was higher than kassie’s, even though kassie seemed to be the one that was sick.

have you gotten the genetic testing results yet? if your daughter comes up with either DQ2 or DQ8, you will know that you need to continue to test her over the years. somewhere around 40% of the population has at least one of the celiac genes, but the gene must be activated in order for a person to have celiac disease.

ian does not have celiac at this time, but he does have the DQ2 gene, so he will be tested on a yearly basis, or sooner if he should develop symptoms.

kevieb2007-6-16 16:54:37

[Anonymous]

Yes, from what I understand, the blood test isn’t a good test until much later when the baby no longer has the mother’s antibodies in him/her.

My dd had an endoscopy and biopsies were taken to determine if she had CD. It was negative.

[Anonymous]

My daughter was recently tested for celiac and I remember a discussion on the forum about the various tests but I can’t find it. So they did some basic blood tests which I believe they kept calling HLA tests and they did genetic testing through a laboratory called Prometheus Therapeutics and Diagnostics in California (Does anyone know anything about this company i.e. reputation etc.) It identifies HLA DQ2/DQ8 haplotypes associated with celiac disease. Supposedly this is the best test??? My question is I thought an endoscopy was the best diagnosis? Also, if this is negative is this truly a negative at this age (I heard testing isn’t reliable until 3 years old). Thanks in advance for any information

[Anonymous]

a celiac test is not likely to be very accurate at this age—–babies and young kids don’t always produce the antibodies until they are older.

have they recommended testing, such as an endoscopy, a ph probe? they’re not gaining weight and they are throwing up way too much.

have they suggested taking them off all solids and putting them neocate only?

i don’t know if my twins were much bigger than yours at that age. they have always been so small and thin. they were diagnosed with celiac 1 1/2 years ago. i don’t THINK they had it when they were little, but no one ever thought to check, either.

[hellbennt]

Found this over on my second home

http://www.thebabywearer.com/forum/showthread.php?t=135270

ok link doesn’t work- here’s gluten free forum- celiac

http://forums.delphiforums.com/n/main.asp?webtag=celiac&ctx=256&cacheTag=x52-40

hellbennt2011-01-29 14:41:43

[Anonymous]

Here I thought I was an anomaly having a baby with teenagers.

Its good to know there is other people going through the same thing with low weight gain. We have been through this before with our youngest boy but he just gained weight slowly he did not actually loose weight. It makes me nervous because Liam has juvenile arthritis which I know went undiagnosed for years. He also has the gene for celiac disease. We actually thought he had the disease but he had testing done and it was another problem and then a short time later he had the genetic testing done.

I see you have older children with reflux. What do you do for them? My oldest has a heck of time with reflux especially when he gets sick.

[Anonymous]

three of my girls have celiac disease. i worry a little about sylvia because she has enamel hypoplasia, which can be caused by celiac. so far, she tests negative. she is 3 1/2 years old and the last time she was tested was in the fall. our ped gi says that the tests don’t start to be accurate until around 3 years old. i am kind of avoiding testing her again, to tell the truth. we already cook all meals gluten free—–i just don’t want to be told right now that another one of my kids has celiac diseas. we are part of a celiac study, and i am waiting for the genetic testing on our family—-then at least i will know who needs to be tested on a regular basis. right now, we know that our 18 yr old son has a celiac gene, but the disease has not been activated in him.

do you have any relatives with celiac? we know of no one else with celiac in either of our family lines—-at least none diagnosed. my dad is allergic to wheat, but has never been tested for celiac.

celiac isn’t going to start until gluten is introduced and something happens to activate the disease—-so chances are, even if your son ends up with celiac eventually, it isn’t a problem for him now.

i just saw my obgyn today. i knew his brother’s family had gluten problems, so i asked him a little more about it today. he said they are 10 for 10. ten kids, and all of them have celiac disease—so does their mother.

kevieb2007-6-5 15:59:48

[Anonymous]

Yes – the old cross contamination prob. This iproduct s by Good Earth – not manufactured in a facility that has wheat, barley, etc. So I’m confused again.Like I said, I am a celiac so I knew the ins and outs when i shop but I’ll tell you I’d kill for a cold beer and a slice of pizza sometimes!!!!!!

[Anonymous]

Our GI told us that the rice cereal might bother Addy more (when we thought she might have CD) because all the cereals typically are manufactured in the same plant and it is very easy with grains to have cross contamination because it gets into the air or the same machines are used for multiple cereals. Don’t know how the rice cereal you used was manufactured, but its a thought.

I would think it would be okay to add a scoop extra but I would talk with the doc first…when making higher caloric formula, I think you have to watch for dehydration…someone else chime in here that might know more about this.

[Anonymous]

Well I’m thinking maybe because his villa is grewing, shall I say “a bit bent” that this is way he has such a sensitive digestive tract. I put 3/4 teaspoon of organic, preservative and chemical free rice flakes in his last bottle before bed a few nights ago, hoping he would sleep a bit longer so mommy could rest, and he was very uncomforable the next day or so. Rice is OK for celiacs as you know, but it didn’t go over so well. He is feeding every hour to 1.5 hours four ounces a feeding. And will go maybe 3 hours at night. My husband is away and I’m a working mom, so I thought maybe we could rest a bit more if his tummy was full. No such luck! Do you think maybe putting a couple more scoops of Elecare in his formula would be OK when I make the batches?