Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Am So Worried


sammers1

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,352
    • Most Online (within 30 mins)
      7,748

    Teagan
    Newest Member
    Teagan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.