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I Am So Worried

sammers1

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sammers1 Enthusiast
sammers1
Posted

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
buffettbride
Posted

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
ShayBraMom
Posted

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
shan
Posted

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
Darn210
Posted

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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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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