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15 Comments

  1. 1

    SB

    At 18, frontal brain development and executive functioning have a long way to go, and the social pressure to eat ‘normal food’ in order to fit in to make friends may be very tough. Campus resources like true GF snacks at the bookstore will be really important. Maybe send a care package once a month with dorm-friendly, non-refrigerated items to ease the burden of hunting for the right foods when all that seems important is getting food into the face hole? I know how hungry I was all the time when I dropped weight! I was soooo hangry all the time, not matter how much I ate.

    Reply
  2. 2

    Lozen

    If everything seems strict but there are occasional symptoms, can you try eliminating xanthan gum? Shauna James Ahern went through this testing holiday cookie recipes, and now her books are gum free. Most of Gluten Free Small Bites looks gum free, too. I’ve had better luck with finding gum free sandwich bread lately (CA, USA)

    Reply
    1. 2.1

      Alison JF

      I second that! A quick Google search will tell you that loads of people struggle with gum, especially xanthan gum and guar gum. I don’t think it’s meant to be eaten by humans really.

      Reply
  3. 3

    Laura

    Celiac disease and associated food toxicity. Some estimates place gluten sensitivity rates at 30% of the US population is gluten sensitive. A gastroenterologist publicized the relationship between celiac and its cross-mediators/cross-reactors: yeast, dairy, egg and coffee. Additionally, symptomology can occur with: preservatives and artificial flavoring. Through trial & error, I discovered other foodstuffs that create a toxic effect: flower and seed oils. Research of the oil extraction processed revealed that extreme heat and chemicals creates toxins. This too contributed to the GI effect. Corn is one of the most commonly hybridized foods. It can be found in free-flowing agents, and cellulose. Corn has been added to my gluten cross-reactor list as it causes abdominal pain. The box of ingredients shown contains canola oil (heat extracted from a poisonous plant) and corn. Please Note: Modern wheat is an assault on the health of many thousands of people. 1. Celiac enteritis 2. Celiac encephalopathy 3. Celiac steatorrhea 4. Gluten-sensitive enteropathy 5. Celiac related dermatitis hepetiformis and 6. Gluten ataxia are a few of the modern wheat era diseases captured by the World Health Organization (W.H.O.) Most of the above disease listing are NEW disease occurrences that have been added to the disease reporting statistics.

    Reply
    1. 3.1

      Lauren

      Thank you Laura. This is very interesting. What oil do you use to saute? Thanks!

      Reply
  4. 4

    Deb

    To the mom with the daughter who still has abnormal blood tests … it took me nearly 16 years to get my blood levels into “normal” … 1 below abnormal. I had to become very, very strict with my food and meds to get that. Cross contamination is always a possibility. I don’t know you or your daughter, but if your daughter is with other children, she “might” not be eating totally gluten free when you are not there. I have grandchildren who just could not resist being “normal” around other kids. They claimed to their parents they never ate regular food, but confessed to grandma they sometimes did. Don’t go crazy. Just do your best to keep her safe and teach her, with lots of love and understanding, about her disease. In the end, only she will be able to keep herself gluten free cause you just can’t be there all the time.

    Reply
  5. 5

    Christy

    This is for the mother that just found out her son has Celiac. I simply had to respond. My own son is 20 and we found out he has Celiac about 5 months ago. That’s after a year of agony up at college, and the saga continues this summer as we try desperately to get him well. I pray that you find a way to get through to him how important it is that he take this seriously.

    Like your son, mine started losing weight about a year ago. It took us a while to notice, but once he came home for Thanksgiving, it was clear there was something very wrong. The weight loss continued and I won’t even tell you how much. He felt terrible all the time, too tired to function, could not remember where his keys were the moment he put them down, fainted several times on campus, caught every virus that came through, had constant diarrhea, body aches, and to this day the worst part is the severe depression. He has now been home for the summer, and we thought since we knew the diagnosis, we would have him healthy by the end of the summer. We were wrong.

    After countless blood tests, urine tests, stool tests, and reducing his diet to only organic meats and vegetables and 2 oils, now trying to add back in some more foods because he is not gaining weight…. WELL, you’ve probably got the picture. The IBS symptoms he has are the least significant. This disease has caused a cascade of other problems and we are now struggling to figure them out.

    You are SO blessed to have this diagnosis now, before it has taken a toll. If you think it would help for your son to talk to mine, I offer my email address. IamChristyEller at gmail.com

    Reply
    1. 5.1

      Deb

      Just a thought … has your son been tested for Grave’s Disease or Hashimoto’s? Also, it can take a very long time for the villi and the gut to heal. Some 6 months … some 2 to 5 years … some even longer. Just saying you may want to wait a bit before adding back too much to his diet. It took me 16 years before I could eat eggs again.

      Reply
      1. 5.1.1

        Christy Eller

        Thank you Deb, I do hear you. Our last battery of blood tests comes back soon and hopefully we will know more. His thyroid profile seems messed up, but doesn’t fit either Hashimoto’s or Graves… of course the MDs say his thyroid all looks fine… but we have a functional med dr. who is digging much deeper of course. I hate to add foods back that may slow healing, but he is dangerously thin, to the point of not being able to function. I hope we find out there are supplements that can help so he can gain some weight without adding foods back that might cause trouble. Right now it has been about 12 months since he has been able to work or do much of anything but sit at home and take a short walk once in a while, because he is so weak. Last few days have been slightly better, hoping that trend continues.

        Reply
        1. 5.1.1.1

          Christy Eller

          That should have said “12 weeks” not months, thank God!

          Reply
        2. 5.1.1.2

          Dick L.

          Have you ever read the blog “Casey the College Celiac”? Your son (and maybe you, too) might find some comfort in reading about her problems back when she started college. She, too, was dangerously thin and unable to gain weight. If you go back to the earliest blog posts, you can read how she wound up, early in her freshman year, in a hospital with a feeding tube up her nose, and how she came back from that. The good part is that, while it took her a while, she did get better. She’s entering grad school this fall.

          Reply
          1. 5.1.1.2.1

            Christy Eller

            WOW, thank you! I’ve never heard of that and am excited to read it-

            Reply
            1. Dick L.

              Gluten Dude told a lot of us about her in “Sending a Big Virtual Hug to a Struggling Fellow Celiac” back on September 23, 2013. You might find that post and all it’s comments interesting, too. I had to go full screen on Casey’s blog to see the “Archive” option; that lets you find her original post on July 13, 2013.

              Reply
    2. 5.2

      C

      Thank you for your honest response. He is starting to come around but still having a hard time. My son doesn’t want to talk about it or be the center of attention so I don’t think he will talk to a stranger. If he changes his mind I will contact you.

      Reply
  6. 6

    Paul

    Our kitchen is not gluten free. Everything subjected to gluten is gone over with a scouring pad, then run through the dishwasher. Gluten is extremely sticky, hence the scouring pad. So far, this procedure is working for me.

    Reply

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