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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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    • Aretaeus Cappadocia
      fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.
    • knitty kitty
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
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