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goldshadow

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goldshadow Rookie
:P:lol: i have to say yesterday i was home from work and i wrote to the forum. i am so happy that i did, this forum is just great for a mom of a celiac or gluten free young adult. i thought i as the mom was going to l it this was the second time in my life some one told me that my child had a chronic illness. I also have an iddm son who was diagosned at 13 yeaRS old and is now 31. my daughter is 29 and just found out she is a celiac. she use to tell me thank god it was not me with diabetes i could never handle it now she has to handle much more. this is hard on both my young adults but even harder for me. so now i have friends to talk to amd hope they do too. my son has never excepted his diabetes and has complications but he is to old and married for me to be there to tell him what to do. i tried but he does not listen. i love both my young adults and hope they will be fine. thank celiac forum for listening to me.

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MELINE Enthusiast

Lucky kids they have a caring mother. Be strong, celiac is not so so so bad. Everything will look much better in a few months. Once you get no gluten eveyrhing is back to normal (after a while). I have the same age with your daughter. Tell her not to worry, she is going to be just fine. Feel free to ask any questions.

Meline

Ivanna44 Apprentice
:P:lol: i have to say yesterday i was home from work and i wrote to the forum. i am so happy that i did, this forum is just great for a mom of a celiac or gluten free young adult. i thought i as the mom was going to l it this was the second time in my life some one told me that my child had a chronic illness. I also have an iddm son who was diagosned at 13 yeaRS old and is now 31. my daughter is 29 and just found out she is a celiac. she use to tell me thank god it was not me with diabetes i could never handle it now she has to handle much more. this is hard on both my young adults but even harder for me. so now i have friends to talk to amd hope they do too. my son has never excepted his diabetes and has complications but he is to old and married for me to be there to tell him what to do. i tried but he does not listen. i love both my young adults and hope they will be fine. thank celiac forum for listening to me.

Welcome again, goldshadow

Glad to see you are snooping around the site forums. There's even a search thing, where you can pose a question (think at bottom of each posting) and see if it has been potentially answered before. Your children (agree with Meline) are lucky to have a mom so supportitive. But, then again most mom's are.. its our job to be protective so on.

You will find a lot of support here, for yourself and for your daughter. Not to mention a venting ground, when things drive you a bit crazy (from other people's lack or willingness to obtain knowledge. Gluten/Wheat allergy is one the 7 big ones in terms of food allergies. Yet, the world does seem to pay attention more the peanut allergy one. However, even that one, took a long time of advocating for them. I'm sure one day; gluten allergies will be taken as seriously as the peanuts. :) in the meantime there are forums and local support programs in most major cities.

There are few books out there you may want to try: "The Gluten Free Diet by Shelley Case (dietician) and "More than Rice Cakes: A Young Person's guide to gluten free" I believe that the name of the 2nd book. It was written by a college stutdent, who found out she was celiac in her early 20s. Don't forget the public library too, to borrow a few copies.

And agrees with Meline, it will take a while a couple of months before she is completely gluten free. And its not that bad; I've just been at it a month. I still gluten myself a fair bit (not done intentionally) by simply passing my son one of many cookies :rolleyes: and forgetting to wash my hands :D . It does take practice and a lot of common sense. But, we do get there :D

hugs

  • 1 month later...
purple Community Regular

Hi Ivanna, I am new here too. My 19 year old daughter was diagnosed in Feb this year. What an adjustment. Here are some of the good things I see so far. We all eat too much junk and this Celiac stuff makes us choose wisely and eat healthier. We know what we eat b/c we have to read labels and what is in the food we eat and we have to make it from scratch. Less chemicals and preservatives. Less fat from eating fast food. I get to try new recipes that I didn't want to before. My other family members have symptoms and need to be checked now before they develop other diseases. We don't have to waste time, money, suffering b/c of knowing now why they have symptoms, so we can tell the doc what the problem is- no unnecessary surgeries, etc. We can help others from what we have learned. We make new friends and thru them we learn things we never could have before. We are not alone. We can pray for others, cry with them, hug them, share recipes/fears. We have become a family. We learn things fast on this forum that would have taken a life time without it. We are getting help. We are developing compassion. The Bible says to comfort others the way we have been comforted. We can do that! We can share personal things/feelings and others won't look down on us. Our new "family" understands. We are now getting healthier where as before we were getting worse and didn't know it. Praise God!

purple Community Regular

oops, sorry I am new, my message of encouragement was meant for Goldshadow. I feel the way you do. Things will get better, your kids have a loving mother!

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    • JudyLou
    • knitty kitty
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    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
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