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glutenfreegirl

Frustrated Mom

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Hi there I am new to this and very frustrated my son has gluten intolerance we are waiting for the celiac testing to come back but I do not have much faith in it they are not very accurate in the mean time I have tried so hard to help him make dietery changes and he does for a day or 2 then goes back to his normal eatting I do not have gluten in the house as I do not want any of my family eatting it for health reason in general but anyway my husband continues to bring it into the home and when my son is out with friends or at Bday ect makes bad choices (he buys it for himself) I am sooo angry and fed up he is 11 and cannot keep weight on I explain to both him and my DH that if he eliminated the gluten he would feel so much better but he keeps saying why mom why can't I just eat like all the other kids!!! I try to be patien and explain it all again but quite frankly i am running out of patients with them all how do I cope it is a very trying experience and I just want to say the heck with you eat what you want get sick learn the hard way because the stress on me is just too much this has been going on for almost a year now and I am tired of arguing the point and fighting alosing battle....any advice would be wonderful I don't know what else to do but through up my arms and say do what you want....

Help I need support I want to see my child thrive and grow and be the healthies he can be.


celiac blood test positve 11/10

stool test postive 2009

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Someone else please answer her!!! I have not gone through what you have. I am sorry for your situation. Could you possibly show him pictures of some of the things he could get if he keeps eating gluten. I saw the DH pics. They were awful. Ask him if he would like to look like that. Explain to him about all the side effects. Show him the teenager site and have him read them. Tell him there are many with the same situatuion and many worse. You gotta be calm b/c otherwise he will rebel. Let him know that there are many sports and activities he can't do if he is sick. Ask him if he'd rather sit on the sidelines while every else gets to play. Teach him to make good choices. Teach him how to cook easy, healthy things. Whatever it takes to get him interested in the positive things. Let him know calmly how much it hurts you. You gotta reach his heart not just his head. He needs to understand what could happen to him if he keeps eating that way. Find a support group and even a boy his age with the same thing. I dunno. See what works. I hope someone will answer you today that has been thru this. I will pray for you and your family.


Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

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I have a son who is twelve and going to be thirteen.For him the concept of celiac is also not as clear,he has eaten stuff outside home without realizing that it was not glutenfree.It can be frustrating,but When ever I go beserk I have alienated him even further.Be patient and have a sitdown with your DH.He also has to support this intiative,Take him to the doc with you guys.He also has to take interest in his sons condition and not treat it with such callousness.My husband did pretty much the same thing untill someone very close to him|not me]his sis explained the diagnosis and the effectc it would have on the health of my kids.He mellowed abit and slowly started support me at home,grocery shopping etc.It also helps to involve the kids in the kitchen.I have made my son the official taster in the house,what he approves we serve on the dinner table.If he doesnot like something we tweak the recipes a bit more to suit his tastes.And yes we keep no gluten at home,and whenwe go out we take nuts and fruits with us on standby and never go out on a empty stomach.That itself has cut down on many incidents when the kids have screamed for regular junk fare.They do ask for it occasionally but if your already full then its ok not to be able to have it.We make fries and smoothees and lots of other fast food all the time actually lot more lately so the kids dodnot feel like they r missing out.They do crave icecream which they cannot have we are dairy free too right now,but found good quality bitter sweet choc which satisfies their sweet tooth and some cashew date truffels .

Its overwhelming bc I often stay up at night wondering how will my kids cope without me or what to prepare for the meals next day.Its hard but just take one day at a time,you need to calm down and work on a daily goal.As soon as you have the diagnosis from the doc,your DH and son will have to face the reality.But you will find loads of support here at this site.The members have big hearts and lots of good advice.I was going totally nuts untill I found this site.My prayers are with you :rolleyes:

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Thank you all just knowing support is here really makes a difference I will deep breath and try try again....

Thank you for your calming words of support it really means alot....

great energy to you all

Big hugs too


celiac blood test positve 11/10

stool test postive 2009

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I don't have children and I don't know how old your son is, so my advice might be irrelevant.

If your son is old enough, may be you can make a deal with him that he will not eat anything with gluten for a month and you will revisit this question of eating gluten-free in a month. Hopefully in a month his major symptoms will clear up and he will see that he does feel a lot better without gluten in his life. I really hope he will not cheat though in this month, may be yu can promise some kind of reward to him if he doesn't cheat, I don't know.

Also try to get your son and your husband to read book by Dr Green called "Celiac Disease: Hidden Epidemic". This books gives you a clear picture of different diseases in undiagnosed celiacs or people with celiac who do not follow gluten free diet.


Better safe than glutened

Dairy Free / Gluten Free / Soy Free / Corn Free / Mostly Nut Free / Legumes Free

Low histamine / amine / glutamate diet

Restricted animal protein diet

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I'd look for a ROCK group in your area. The opportunity for him to hang out with other celiac kids would probably really help him realize that he's not the only one and that celiacs are still normal people. The school probably can't tell you if there are other food allergy kids around, but if they could even hanging out with a dairy allergy or peanut allergy kid might help.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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My son is 8 and has been gluten free for 3 months. He is very small for his age and it bothers him. He has gained 3 pounds and that is motivating him to eat right. He is realizing that if he stays off gluten that he will contine to gain weight and catch up with his friends. Maybe when your son has a noticable weight/height gain he will be more motivated to stay gluten free.


Amy

1989: I am diagnosed with IBS.

3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.

6/08: My Celiac test is negative.

7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!

7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.

8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

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I feel for you. My son is only 19 months old now but I'm already thinking about what to do when he's old enough to make food choices. I don't have a bunch of experience but do have a couple pointers my DH was diagnosed after my son. It's a BIG lifestyle change for him. and he goes back and forth on good decisions. One thing I'm sure I do is have yummy gluten-free food in the house not just rid it of bad things. I also try not to make a huge deal about it. (knowing full well it's a big deal) Has your son read one of the great books about celiac? Maybe throw him a party for his friends with gluten-free food and let them eat his way? Just throwing out ideas. Good luck!

Betsy

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I can't tell from the original post if your son has symptoms when he eats gluten. Aside from slowed growth, what are his other symptoms? Could you talk with him and get him to connect things he is feeling with what he has eaten?

When your son goes out with friends, are you helping him plan ahead and have treats to take with him? I think it would be hard for a kid to watch other people eat and have nothing for himself. Having a stash of cupcakes in the freeser or candy bars to grab and go can really help keep them from feeling left out. If my son goes to an activity and is presented with unexpected treats and does not have something with him, he will not eat. We have an agreement that he will get a food reward that is bigger and better than what the other kids had if he will just wait until he gets home. I always heap praise on him when I see him reading labels or asking questions about what food is safe. I am fortunate in that my son has not cheated in his nearly 3 years on the diet, but I know that some day he might. I am really careful about what i eat, and I think modeling this behavior for him to see helps a lot (not saying you don't, I'm just saying what works for us.)

As far as your DH goes, I think it would be a good idea to find a local celiac support group or ROCK group. I think if some of the moms there got wind of what your DH was doing, they would be quick to let him know the error of his ways. :lol:


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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