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hockeymomofceliacchild

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About hockeymomofceliacchild

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  1. I just just got back from my follow up confirmation appt. with my dr. Finally answers for myself.

    However, I am almost 98% sure one of my children has it so I am having him tested as well. He has been in poor health ever since birth. He is now 9. At his one month check up he weighed less than he did at birth and was labeled failure to thrive. He had severe colic well past the age when they normally out grow it. He could never keep anything down. At around 10 months he was diagnosed with GERD. Once he started on solids he never had a formed stool. (breastfed (against dr. recommendations)with supplemental soy and a predigested formula.) I was having the same issue at the time and the dr.s said it was a gastrointestinal virus. Since then he has been tested for everything from Wilsons disease to Crohns disease. Celiacs was never mentioned. Hospitalized for dehydration, due to chronic diarrhea. It until he was five to get him out of diapers due to the fact he couldn't control his bowels, which was emotionally distressing for both him and myself. Even though he is much older now he is always getting sick to his stomach and does not have formed stools. yesterday we went to the park and he couldn't even play because he was having such severe stomach cramps. He also has a lot of emotional symptoms, for example, being teary eyed for no reason.

    So, I have a few questions. Is it genetic? I never had any problems as a child yet he was born with his symptoms,one of the few things that makes me doubt if he has the same thing I do. Since I have to go gluten free, should I start him on the same diet or should I wait until after he is tested? Of course I have all these other worries going through my mind, if he does indeed have it,(school, eating at friends, birthday parties ect.) but I almost hopping that it is so that we finally have answers.

    To answer your questions briefly (I'm no expert just learning too but seem to becoming an expert thanks to this group :) )

    Yes, Celiac Disease is genetic. If he has had this many problems from birth and you yourself have just been diagnosed then he needs to be tested asap. Do NOT take him off gluten until after his blood work and scope. The plus side to celiac is that when diagnosed, the simple step of eliminating gluten the body then repairs the damage to the small intestines. If you take him off gluten too soon before diagnosis he can get a false result.

    We had a fairwell to gluten week for my son before his scope because I was very sure he had it. I asked him what foods he would miss the most and we ate that the week before his test. Then of course we found gluten-free versions of the same (still havent found pogo's yet though :( )

    It is normal to feel the way you do, take it one day at a time if he does have it. As you say it is actualy a relief knowing what the problem is and the symptoms disappear quite quickly when you learn what does and doesnt have gluten in it. ( I joined the canadian celiac assosiation and recieved a small pocket dictionary on all ingredients and weather ingredients were gluten-free or not~It stays in my purse and I refer to it often while shopping)

    This forum is wonderful, everyone is so helpful and knowledgable, my son was diagnosed this February so still fairly new but his rash is gone ( he has DH- dermitosis herpetiformus... :blink: I think I spelled that right. lol)

    o.k so maybe this wasnt too brief but there is still lots of info and I'm sure you will get it when you have more questions. Good luck with your diet and congratulations on getting the answers you needed for yourself now you can start on the road to feeling better :)


  2. They are indeed gluten-free.

    \

    Really? we have been avoiding anything that says "spices" and "modified cornstarch" because I thought those potentially could have gluten. This is so confusing. lol Trying to remember everything and learn all I need. On any ingredients list do they now have to list any "hidden" glutens?

    O.k just dug out my Pocket dictionary and yes it does say modified cornstarch is fine but check modified starch. lol My boy will be happy with this...silly me, it is hard remembering everything. lol

    Thanks once again everyone.


  3. I was recently diagnosed with celiac, and was instructed to keep my seven month old son gluten free also. So I threw out most of my beauty products, but I have eight bottles of Johnson and Johnson baby wash (just the plain old No Tears kind in the yellow bottle) that are left from my baby showers. So I called J&J to check on the gluten-free status of the product, and they would neither confirm nor deny gluten in the body wash. I know it's CYA, but it is also $#%& rude! I've been in limbo, uncertain whether or not I can use them... and it would be a huge loss to have to throw them out because we're in a financial bind.

    Any advice/experience?

    hmm..I've never actually considered gluten in body wash products before. my son has DH and we use johnsons shamppos all the time. He doesnt have any rash from it. Not saying it is gluten-free but that is our experience.


  4. Finding the hotdogs is pretty easy. It's getting good buns that's the hard part. (IMHO)

    lol Well my son never ate the bun before we found out he had celiac so he doesn't care too much. We actually slice 1/2 the weiner three times up the length and roast them over the firepit...as they cook they shrink up and they look like a squid. We call them Squidward hotdogs and the kids love them. lol


  5. The only gluten-free hot dog I've found in Canada that's readily available at all grocery stores is Top Dog Angus Beef. Please check ingredients though, as the other Maple Leaf brands all contain wheat. I discovered the Top Dog Angus Beef last summer and haven't looked at the ingredients yet this year.

    Thanks I'll look for them, a lot of the hot dogs here have wheat and the rest say "may contain wheat" or spices or modified cornstarch so I'm a little unsure. I will have to do some more research on some other brands and contact them to find out more.

    Thanks everyone else, unfortunetely I havent' heard of any of those brands here in ont.


  6. BBQ season is here and I've been very busy at work lately (we own a garden centre) so sometimes it is nice just to come home and put some hotdogs/hamburgers on the BBQ but which brands are Gluten Free? It would really save me some time if anyone in Ontario knows already which brand(s) I can buy in my local grocery store...Maple leaf, Snyders, Jumbo juicy's? any of these or others that you know of? Thanks in advance :)


  7. Is ANyone else having bed-wetting issue's?

    My DD will be 8 in 4 wks. She had lots of day-accidents before diagnosis, those have stopped completely except for when she gets glutened. She has not been dry for 2 nights in a row ever.

    We are getting her up at 10:30 at night to use the bathroom , she get's nothing to drink after dinner and she still wets. She is in XL underjams and is now feeling the pressure of "Sleepovers".

    We just missed a Girl Scout opportunity and she was devastated. I hesitate to call the Dr's, Last time this discussion was had our Pedi said "wait it out another year and see what happens", our GI wanted to send us to a specialty clinic.

    Is this common for Celiac's? Any advice?

    Im not sure if this is assosiated with celiac but I can certainly sympathize with your daughter, I was a bedwetter till...well lets just say I had my period and STILL wet the bed. Don't let them tell you to wait another year it is really hard on a little girl. Im my case I was always told I was lazy, too deep a sleeper, drinking too much before bed etc..

    when they finally took it seriously and I was mortified by it completely the doctor actually examined me and realized my bladder was the size of and infants!

    He prescribed some medication that encourages the bladder to grow (sorry I don't know what it is called-but I have seen it advertised in magazines) and voila never had a problem since...

    I'm not saying that is her problem but have them check the size of her bladder itself. I don't have celiac (or at least I had a negative blood result after my brother and son were diagnosed)

    I was actually going to talk to my doctor tomorrow about my own little one who is having a hard time with potty training and I was wondering at what point can they tell if her bladder is or isn't developing. She goes to the potty and two minutes later can pee her pants...thinking she may have the same problem as mommy did.

    Good luck with this and hopefully for your DD sake you find answers soon, if it makes her feel better let her know when I was that age there was no such thing as underjammies! lol I learned how to wash bedding and pj's by myself at a very young age. lol


  8. Hi fellow Canadians

    Im excited to see other from Hamilton Ontario!!!!!!! Definitely going to check out the food places recommended. I've only been diagnosed for 1 week.

    My brother took me to the whole foods in Hamilton and I was in heaven.lol Some of the items I buy locally were a couple bucks cheaper (and when it is my son's school snacks that helps a lot) they had a sale and I stocked up! lol wish we had one here.


  9. yes happened to us too... (and surely risks to happen again) Even though we are careful and constantly worrying :-(

    We been following diet free from last spring, since it has been really confusing because of knowing what to identify as containing gluten, and also because of doing blood test we had to re-include gluten products in,so at the end she didn't know if it was ok or not, when and what.

    she is 5 1/2 and turns out that she also reacts strongly to soya - lecithin of soya almost in every candies too, and chocolate too... Friends, maybe do not understand and try to tempt her, sometimes she tells me they force candies in her mouth as a game when she refuses.

    She usually get upset stomach and diarrhoea, and eczema looking like burns on the inside of arms, behind legs (used to be so bad and painful, all around her face, bleeding behind ears... etc)

    We do not know for sure she has coeliac, we did IGG tests and it came back same results as coeliac with other stuff like soya, garlic, eggs whites and yeast as big offenders.

    It makes it awkward to say the least to avoid everything and try to live and eat normally LOL, but we are coping :-)

    Doing mistakes, trying again, learning all the time and spending 3x more time shopping as we read and double read all ingredients :-D out loud to her, to get her to understand what she can have and what she can't.

    We also follow the same diet as her, as support and respect.

    Her little sister is being tested for the same, and I won't be surprised the results will turn out to be similar, so good she is already going lots of stuff free.

    OMG her friends actually force her sometimes!? Kids are mean..hmmm...gonna have to talk to my son on that one.

    It is hard to teach them at that age the effects of gluten my son doesnt get the concept that damage is being done on the inside too. He figures he just gets itchy and he says "I don't care" I'm trying to teach him but he sometimes gets sensitive about talking about gluten all the time.

    I can definetely relate to the taking 3x longer shopping....I HATE shopping and this is NOT easy for me but I keep reminding myself it is less easy for him. lol

    Thanks everyone for your posts, I figured I wasn't the only one to gap it but needed a little reasurrance. :)


  10. As a busy mom of three and working full time I have been doing my best with this new diet. I've been getting frustrated that my husband is not taking more of a stand and helping more.

    However, after a very busy day at work, setting up a display at our local Maple syrup festival, rushing to pick up the kids and get them to the festival to ride the rides I figured Heck we'll just grab something to eat at the carnival....DUHHHHHH!!!!

    I can't believe it, I have been so careful with everything he eats and I order a family size fry and onion rings and say "here ya go kids,eat before you go on anymore rides"

    Me not paying attention he grabs an onion ring and I hear my husband yell "drop it, don't put that in your mouth!" lol oh dear, thankfully hubby was paying attention but I still had stupidly let him eat CC'd fries too. I didn't let him have anymore once I clued in. But another parent appoligized profusely for letting him eat some more fries later...what could I say, I had done the same thing. :(

    Thankfully he doesn't get sick or d from it but I'd best get the ichy cream out again....

    No advice needed except "pay more attention" lol but has anyone else gapped it like this and rolled into old habits with out even thinking?


  11. That's tough. Could you say "hey that was good, did you make it" if she did you could say "do you remember how it was made? what flour did you use etc... and find out a little more.

    If she says something you know you cant have you could say oh dear that was good but I actually cant eat this if it has _______ in it.

    Just a thought, you really hate to hurt someones feelings especially when they went out of the way for you, which is very supportive but you also don't want to be sick from cc either.

    I know it is cc you are worried about but you need to start a conversation and discuss it with her and hopefully bring up the subject of cc and how it affects you.

    good luck


  12. This came up on CNN today. I thought it might m=be interesting to some of us....

    http://eatocracy.cnn.com/2011/03/28/parents-picket-peanut-allergic-girl/

    They actually want this girl to withdraw from the elementary school because, they say, "she is violating our rights."

    wow that is just bizzarre! I can't say as it really causes any issues for us to make a peanut free lunch for our kids. Their schools have always been peanut free and I have never thought it was a hassel to do this. Most times they don't even have someone in their class with a peanut alergy but makes it safe for that one child who is deathly allergic somewhere in the school. I can't get over the mentality of some people! Makes me cringe thinking about it :(


  13. We are from the little town of Elmvale :) North of Barrie, Ont. My son was diagnosed earlier this year and the only reason he was tested was because I insisted knowing my older brother has DH/celiac for about 10 years. I wouldn't have had a clue otherwise thinking he just had echema...little did I know all the OTHER symptoms that were from celiac. Thanks to this group I have learned A LOT! lol

    Welcome fellow Canadians! :)


  14. Wow you are one brave person! I couldn't imagine doing that with out sedative :unsure: but holy, what a difference in price! :huh: I tend to forget how easy we have it here in Canada, the scope is covered under OHIP and we don't pay anything. Anyone I talk to can't believe we had to pay $125 to have the bloodwork done for celiac test....and I have to admit I grumbled about it...thanks for reminding me what a good thing we have here :)

    Again very brave! Way to go :)


  15. I have something in mind to try to stop him. If we leave a bunch of messages, he will know he might be in trouble and delete the post. I need that post to stay on because it will be a big hassle to subpeona deleted posts from FB and it probably not go anywhere.

    I just read this on my own facebook and was coming on this site to post. the article I read has mentioned it is deleted but I just posted the picture of his facebook comment on my own facebook page I was so furious!


  16. I just realized there were pages of responses here and missed all the others til now. Sorry to hear things are not going good with you and your wife :( I have read that celiac causes so many issues and this could be part of it. Just let her know you are there for her and focus on your child and what is best for her (him?)If I have learned anything from a divorce it is that both parents have to focus on the child and what is best for them. Good luck and take care


  17. Once again thanks for the responses. I have no Gluten Allergies, however for many years I have not eaten many wheat based products regularly. I have always believed carbohydrates are the leading cause of many health problems so I have abstained. So please stop bashing me about wanting to keep eating Gluten. I could care less, I barely eat it right now anyway. My wife however loves bread and loves kit kat's, etc. Just last night when she found out she would never be able to have a kit kat again, I dealt with a very upset young lady and promptly drove to the nearest gas station to buy as many different candies that I could that were gluten free, to console my crying wife. THIS ISN"T ABOUT ME!!!!!

    I agree with your earlier post you do need to have her go for the scope to make sure it is celiac. It is a lifelong diet and very strict and hard to follow. But it will be necessary. However I do have a friend who has celiac and still chooses to eat gluten. Why? I have no idea but then I choose not to smoke at all or be near anyone who does (I get massive headaches) or drink- in excess for fear of what it does to my body now and in the future. It is a personal choice to follow this diet. My son (6) is newly diagnosed and like you I am madly searching for all the answers to my questions, it is a lot to soak in. My older brother has had celiac for over 10 years and gets a huge rash if he eats gluten. He was shocked to hear that my son at 6 and had just developed a rash had damage done to his small intestines (which they discovered after doing the scope, which then told us he for sure had celiac)He didn't know that even with out gastral symptoms damage could still be done to his body.

    This site is fabulous and people have copious amounts of information to share (and varying opinons-which you can take or leave. lol) I found out that iodine and gluten cause my sons rash. We have choosen to limit his salt intake, buy non-iodized salt but really trying to eliminate all iodine seems imposible to me. So when my son says "Can I eat these" I say "Yes, they are gluten free, they do have salt on them. If you eat them you it will react with the gluten that is still in your system. Do you care if you get itchy?" He then replies...umm...I don't care, mmmm...these are good" LOL

    Before I end this lengthy note I have to say it is wonderful the support you are giving your wife and learning all you can, she is very lucky to have you ;)