Search Results for 'celiac'

[Anonymous]

Sarah, I’m a little late jumping in with this, but if you are going to be tested for celiac, you actually don’t want to cut gluten out of your diet until after the test. Apparently, not having gluten in your system when you do the test will mess with the results.

[Anonymous]

Hi Naomi,

My son had an an endoscopy and ph probe study done at 10 months. It gave us answers to things we never would have known without hte test, for example that he has a hiatal hernia. I highly recommend going for the testing at this stage in the game with your lo.

Also, if you think things are food related, or if you suspect celiac, have you tried removing all gluten from her diet to see if that makes a difference? (If you are still bfeeding, then it would have to go out of your diet as well.) I have experimented a LOT with removing foods and found that my son does so much better without having dairy, soy and gluten. we just started the no gluten thing recently, so we haven’t yet tested for celiac or brought it up to our docs yet. Just a thought.

[Anonymous]

after one of my twins came back with a positive screen and an iffy biopsy, i tested the rest of the kids—-that’s how we found all three with celiac. i have 2 older kids that have not been tested yet. we know that one of the other kids has the gene, but no active disease. i am really interested to see which/or both of us carries the gene since as far as we know, no one in our families has ever been diagnosed with celiac.

[Anonymous]

Hi & Welcome

Where in Australia are you living? Sorry to hear you are having a rough time. I would definately have the procedures done so that you can get some information about what is going on. An increase in Losec would also probably help. We have just increased to 17.5mg and my son is 8.75kg. It might be a while before she grows out of the reflux but if she has allergies or celiac you need to know so you can put her on a restricted diet. Not sure why she would be on Maxolon – does she spit up a long time after eating? I didnt even know that Maxolon was approved for children. Most children with delayed gastric emptying are put on Motilium which is alot safer – I would be concerned about firstly if she really needs it and secondly if it is the safest drug – I dont mean to scare you but it might be something you can discuss with your doctor.

When are the procedures scheduled? Keep us updated on how things go.

[Anonymous]

Thanks! Guess I need to test my kids because it is hereditary. I am going to try celiac.com and get some info. Going to the health food store today to look for the mixes. Looks like this could get expensive…. and I am going to be baking again!

[Anonymous]

My daughter had one done at 8 weeks old with no problems. It was important to access the damage and finally get some answers. Mine also is mspi so i had to fix her diet as well because it does make the reflux worse when they can’t tolerate some foods. I am being tested right now for celiac disease. I guess they do a blood test first, then if they need to, a biopsy of the small intestines. They are going to scope me and do the biopsy at the same time.

You have made it through a tough year and can get through this procedure! Seems like she is on a very low dose of ppi though? check the dosage chart at marci-kids.com My dd is 8 months and on 30 mgs of prevacid-which is very aggresive, but no pain anymore. Good luck with the procedure! I know you both will get through it! Post back on the results!

Also, Christine… if you are still posting I would love some more info on celiac since you seem to be the expert on this board! Email me!

[Anonymous]

there are about 5 blood tests for a celiac panel. our ped gi just ran the tissue transglutaminase—it is more specific for celiac disease. the anti-endomysial is more specific also. make sure they don’t run just the anti-gliadin, because i think other conditions can raise the level of that. sounds like you definitely have a problem with wheat, even if you don’t have celiac. there is also a non-celiac gluten intolerance which causes the same symptoms, just not the intestinal damage. there are a number of people on the boards at celiac.com that have never “officially” been diagnosed with celiac, but they stay gluten free becaue they feel so much better.

we cook with flour mixes, rather than a single gluten-free flour. bean flour can be nasty—really bitter when uncooked. we haven’t used it very often. i recently made some bread from a mix that had some bean flour in it, and it rose really high and tasted pretty good. i am going to try working with the bean flour a little more. you need to add some xanthan gum to your baking to replace the gluten.

let me know how your test comes out. a lot of people have a history similar to yours before being diagnosed with celiac. i think it is missed so much because so many people don’t have what would be considered the “typical” symptoms.

[Anonymous]

hi—-an endo with biopsies is safe, and a short procedure. my youngest daughter had one at 8 months old. i have 3 children with celiac disease. two of them had endo’s with biopsies this last year. one in october, the other in dec. i was able to stay in and watch the last endo.

[Anonymous]

HELLO EVERYONE,

THIS IS THE FIRST TIME I HAVE EVER POSTED A MESSAGE ON ANY SITE LIKE THIS, I JUST REALLY NEEDED TO TALK TO OTHER MOMS WHO KNOW WHAT I AM GOING THROUGH. I HAVE READ THROUGH SOME OF YOUR LETTERS TO EACH OTHER AND IT SOUNDS LIKE YOUR BABIES ARE IN A MORE SERIOUS CONDITION THAN MINE AS SHE WAS NOT BORN AS EARLY AS YOURS. SHE WAS 6 AND A HALF WEEKS PREMMIE AND HAS HAD REFLUX SINCE SHE WAS BORN. SHE HAS JUST TURNED 1 YEAR OLD AND I AM WONDERING WHEN THIS IS GOING TO END. AS SHE WAS PREMMIE THE DOCS WERENT TOO WORRIED ABOUT THE REFLUX TO START OFF WITH AND THEY TOLD ME THAT IT WOULD BE GONE BY 6 MONTHS, THEN 9 MONTHS AND THEN THEY SAID IT SHOULD DEFINITELY BE GONE BY THE TIME SHE TURNED 1. SHE IS CURRENTLY ON LOSEC 10MG AND MAXOLON AND THEY DONT SEEM TO BE DOING WHAT THEY ARE SUPPOSED TO BE DOING.

SHE TURNED 1 TWO WEEKS AGO AND I TOOK HER TO A PAEDIATRIC GASTROENTOROLOGIST WHO SAYS THAT SHE SHOULDNT BE STILL HAVING THE REFLUX AND WANTS TO GIVE HER AN ENDOSCOPY TO FIND OUT WHY SHE IS STILL REFLUXING AT THIS AGE. I AM ABSOLUTELY TERRIFIED AND HAVE NO ONE TO REALLY TALK TO ABOUT MY FEARS AS NO ONE ELSE IN MY FAMILY OR ANYONE ELSE I KNOW HAS EVER HAD A REFLUX BABY OR KNOWS ANYTHING ABOUT THEM. IS THIS PROCEDURE DANGEROUS FOR BABIES?? I HAVE HAD 2 ENDOSCOPIES MYSELF DUE TO STOMACH ULCERS AND THEY WERENT THAT BAD FOR ME BUT I JUST DONT WANT ANYTHING TO GO WRONG WITH MY BABY GIRL. I AM SO SO SO SCARED ABOUT THIS WHOLE PROCEDURE AND NOW THE DOCS ARE SAYING THAT THEY WANT TO DO BIOPSIES WHEN INSIDE TO SEE IF SHE IS LACTOSE INTOLERANT OR MAYBE HAS CELIAC DISEASE. PLEASE REPLY TO ME AS I REALLY NEED SOMEONE TO TALK TO ABOUT THESE ISSUES.

HELP HELP HELP

…. NAOMI

[Anonymous]

HELLO EVERYONE,

THIS IS THE FIRST TIME I HAVE EVER POSTED A MESSAGE ON ANY SITE LIKE THIS, I JUST REALLY NEEDED TO TALK TO OTHER MOMS WHO KNOW WHAT I AM GOING THROUGH. I HAVE READ THROUGH SOME OF YOUR LETTERS TO EACH OTHER AND IT SOUNDS LIKE YOUR BABIES ARE IN A MORE SERIOUS CONDITION THAN MINE AS SHE WAS NOT BORN AS EARLY AS YOURS. SHE WAS 6 AND A HALF WEEKS PREMMIE AND HAS HAD REFLUX SINCE SHE WAS BORN. SHE HAS JUST TURNED 1 YEAR OLD AND I AM WONDERING WHEN THIS IS GOING TO END. AS SHE WAS PREMMIE THE DOCS WERENT TOO WORRIED ABOUT THE REFLUX TO START OFF WITH AND THEY TOLD ME THAT IT WOULD BE GONE BY 6 MONTHS, THEN 9 MONTHS AND THEN THEY SAID IT SHOULD DEFINITELY BE GONE BY THE TIME SHE TURNED 1.

WELL SHE TURNED 1 TWO WEEKS AGO AND I TOOK HER TO A PAEDIATRIC GASTROENTOROLOGIST WHO SAYS THAT SHE SHOULDNT BE STILL HAVING THE REFLUX AND WANTS TO GIVE HER AN ENDOSCOPY TO FIND OUT WHY SHE IS STILL REFLUXING AT THIS AGE. I AM ABSOLUTELY TERRIFIED AND HAVE NO ONE TO REALLY TALK TO ABOUT MY FEARS AS NO ONE ELSE IN MY FAMILY OR ANYONE ELSE I KNOW HAS EVER HAD A REFLUX BABY OR KNOWS ANYTHING ABOUT THEM. IS THIS PROCEDURE DANGEROUS FOR BABIES?? I HAVE HAD 2 ENDOSCOPIES MYSELF DUE TO STOMACH ULCERS AND THEY WERENT THAT BAD FOR ME BUT I JUST DONT WANT ANYTHING TO GO WRONG WITH MY BABY GIRL. I AM SO SO SO SCARED ABOUT THIS WHOLE PROCEDURE AND NOW THE DOCS ARE SAYING THAT THEY WANT TO DO BIOPSIES WHEN INSIDE TO SEE IF SHE IS LACTOSE INTOLERANT OR MAYBE HAS CELIAC DISEASE. PLEASE REPLY TO ME AS I REALLY NEED SOMEONE TO TALK TO ABOUT THESE ISSUES.

HELP HELP HELP

…. NAOMI

[Anonymous]

Hello Christine, I think I read a post about your family discovering they had a gluten intolerence?? If it was you, it really made me start researching it. Think I have it too. I have felt bad for most of my life and couldn’t figure out why a flour tortilla would hurt my stomach, give me a headache, make me all shakey. I read about this blood test for anti bodies so I am going to the internist today to get tested. Any other testing that you all had done? Crazy, I cut out all wheat (and the many various forms) for 2 days and alot of my symtoms went away. Too bad I am starving! Tried some garbonzo bean flour in my cookies and almost vomited. Hope to hear from you! Thanks!

[Anonymous]

i would doubt that it has anything to do with intolerances. we went through 5 antibiotics with molly’s first ear infection, and she did not have any allergies or intolerances (but she has celiac now). since i had already had one child with a zillion ear infections, and my twins both had had tubes, when the docs kept saying molly might need tubes, i told them i would just as soon go ahead and do them now. she got tubes at 8 months old and never had another ear infection.

where hannah has only had 2 infections before now, i’d say this is probably just a fluke, or maybe allergies like your ped has suggested.

[Anonymous]

Well, I can contribute to this issue as well since Hailey has had loose stools (what I call diarrhea) since she was 12 months old! I like you thought it was something specific she was eating like milk, soy or something else since we were seeing reactions with other things as well. I let this go on for a couple of months and then we went to see her regular Ped and he ordered a full stool workup. Here’s my post about that:

https://www.infantreflux.org/forum/forum_posts.asp?TID=3912&a mp;KW=debit34

In that stool testing, the test for reducing substances (means there is undigested sugar in the stool which shouldn’t be there) can back positive and so her Ped thought she was lactose intolerant – although the reducing substances can mean any sugar in the stool not just lactose. So, we cut all lactose (all dairy actually) from her diet for a month and there was no change. Before the dairy we also tried cutting out juice completely at her Ped’s suggestion and there was no change there either. Here’s more info from my post on that:

https://www.infantreflux.org/forum/forum_posts.asp?TID=4045&a mp;KW=debit34

Finally, her Ped suggested we go back to the Ped GI. A couple of months went by before we did that and she was still having loose stools. Here’s my post from that:

https://www.infantreflux.org/forum/forum_posts.asp?TID=4110&a mp;KW=debit34

We eventually repeated the reducing substances test and it was negative so that was good. We saw the Ped GI again and he then mentioned this condition called “toddler diarrhea” or “toddler tummy” and said that some babies have what appears to be loose, frequent stools several times a day and it can be normal for them. They eventually grow out of the condition. I asked that she be tested for celiac and have a CBC to check the eosinphil level in her blood and both were negative.

So, anyway that’s all. We were released from the Ped GI and her diagnosis is toddler diarrhea. We have her on all foods and she’s doing fine. Her stools have improved from the blowouts she was having but her stools are still frequently loose. The diaper rash problem she was having also went away and I never really did figure out what caused that problem – the loose stools or some other irritant like the diaper itself.

I hope some of this helps.

[Anonymous]

my celiac kids don’t seem to have any sleeping problems, but they didn’t have celiac when they were babies(that i know of!)

if you like oats, i have a web site for a company that raises oats specifically for celiacs. they had a celiac son, so they went to the effort to grow some with precautions to avoid cross contamination. they are pretty pricey—–$100 plus shipping for a 25# bag. i think i am going to order some, even at that price. my girls like homemade granola. i’m not sure if the oats are available yet, though.

[Anonymous]

I’ll have to try the sorghum flour, I think the mix I used didn’t have much of that in it. thanks for that tip. I just got some gluten free waffles and they are pretty good. I’ve been using them as bread or toast for myself and putting peanut butter and other things on them like I would onto regular toast.

Thanks for the encouragement. I’ll keep at it. Did any of your kids have sleeping issues from their celiac? Lucas seems to be sleeping better, but I don’t want to jinx us. I’ll let you know in a week if this is for real that his sleeping is better, or just a co-incidence.