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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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    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
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