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I Am So Worried


sammers1

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sammers1 Enthusiast

My 2 year old was just diagnosed. I know I should take one day at a time but all I can think about is how this will affect her socially as she gets older. Are kids going to give her a hard time. Is college going to be awful? My mind is just racing! All I can hope is that as awareness grows, it will get better.


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buffettbride Enthusiast

I think we all probably have thoughts like that at times. I definitely worry about my daughter socially--especially about possible eating disorders and depression because it seems like Celiac is a constant obsession with food and anything and everything she comes into contact with. That's gotta take a lot out of a person--especially a Celiac who is generally more 'sensitive' anyway.

On the other hand, my husband and I really try to emphasize the positives rather than the negatives. The positives are how great she feels because we now know what was making her so sick and focusing on her strengths in life that have nothing to do with food. A lot of her attitude will come from your attitude so if you seem calm and in control about it, she will too! There's a lot of things she will be able to offer the world because of her awareness of her health needs.

The social aspect is tough--because it will affect her--forever, but helping her feel ENABLED instead of DISABLED will take her far--not just with food, but with everything in life.

There are definitely times I get very sad and wish desperately for her to have a more "normal" life, but in the great scheme of things, I think she will have better health overall because she will truly understand the importance of eating whole foods and the impact good eating has. My daughter is only 10 but I have a feeling we'll see great strides in the types of food available to Celiacs as she becomes an adult as well as more awareness food intolerances overall--and hopefully an end to this convenience food epidemic our country seems to be facing.

ShayBraMom Apprentice

I know, even though I see my sons friend who has a dealdy peanutallergy, even tracescan kill him and he has a hard time that he can't just eat the B-day cake he was invited to or eat his Halloweencandy without showing it first ect- I'm not thaaaaat worried! sure it is hard, but opur kids will adapt, and according to the Ped. Gastro- he says that kids come to naturally despise the food that makes them sick as they get older. Cleiac was thought to be a rare condition but now comes more and more into the spotlight that it is not as rare as people thinkg, and that it is the culprit behind a lot of healthproblems. the insuracnes know how bad celiac really iss and what longtermgluteing in unduicovered Cleiac can do, thats why they often turn celaics down or pump up their Insurancepremiums! buffetbride is right, I do believe too that great strides towars more foods for celaics in regular Supermakrets ect. and so on will be seen. I know Safeway has some products that are tagged visibly as glutenfree. My daughter is only a bit over a year, she's celiac AND she can't have dairy since they will make her so sick and bloated, I have to get Goatmilk for her adn pretty soon goatcheesproducts and so on! I know it's hard, but when you get really sad adn feel down, try to think that it could be even worse then just celiac for our kids, they could be allergic to nuts, eggs, casein and waht not too, not much food can be found after all of that- I do believe we still got the easier end a bit even if it doens't think at the moment. Lets, take it step by step, one day at a time and who knows, with Celaic slipping into the spotlight as fast as it is, our kids lives won't get more problematic then they are now, they will get possibly easier! Big hugs and hang in there!

shan Contributor

My daughter was just about 2 whan she was diagnosed - now approx 8 months later i can't begin to tell you the difference. I don't know what her character is like now, but mine didn't know the meaning of socialising - didn't know how to react to anything, was MAJOR sensitive, cried for nothing - hid like a mouse if anyone so much as DARED to look at her in the wrong way!! She was my first, so i thought, ok i have a sensitive kid what can i do?! Now, 8 months on, she is a sociable kid! loves her daycare, has loads of friends... and yes she still is a sensitive kid (like cries buckets coz her granparents went away ;) ) i can train her, though, to use it for the good!

When i look back at how she was, and compare her to now, i say to myself, the other way she would have had ZERO social life, and this way she will have a lot of it, just she'll be eating different food...

Just by the way, it seems like you just found out and are a bit overwhelmed by it all... I remember those days... crying all night and wishing someone would tell me it was all just a nightmare... Nowadays, i still feel bad when i give her the same lunch day in and day out, coz i have not been feeling well, but i can't even think of life back with gluten in it, for her at least :D The first approx 3 months were hard, and then it became second nature and... well... it's part of life!

Darn210 Enthusiast

I totally agree with buffetbride . . . if you handle it as no big deal, she will handle it that way, too. My daughter is so matter-of-fact about the whole thing, it is amazing to see. She has also learned to totally play the Celiac card: "Mom, they gave out Oreos and I told them I couldn't have one because it has gluten in it . . . what can I have instead . . . I think some ice cream might be good." ;)

A friend of mine had her son on a 3 month gluten-free trial about 5 years ago. When my daughter was diagnosed, she gave me a bunch of literature and cookbooks. She said that she was amazed on what a difference 5 years have made in available products and online information. That is only going to get better and better.

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    • trents
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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