gluten sensitivity - 2 "copies" of a bad gene

Discussion in 'Fibromyalgia Main Forum' started by justdifferent, Apr 28, 2009.

  1. justdifferent

    justdifferent New Member

    My lab work came back and I am supposedly gluten sensitive - both mum and dad gave me a "sensitive" gene. I do not have the celiac genes, however.

    I'm struggling to cope with this news. Beside the fact that I LOVE bread and all the other treats that are brought into work like doughnuts, cookies, cakes... is the fact that to eat gluten free is a lot more time consuming.

    I feel like I can either:
    1) work
    2) focus on my health

    but not both at once. Working wins, because without it I'd lose my house and my health insurance. I know that my kids have each gotten at least one copy of the "sensitivity" gene, because that's all I had to give. And they are picky eaters not about to give up pizza, chicken nuggets, and burgers.

    Living in this in-between state of being too well for disability but being tired and in pain is horrible. :-(
  2. xchocoholic

    xchocoholic New Member

    Doesn't have to be complicated or it doesn't have to happen all at one time. IF you start slow just by passing up the donuts, etc you'll find yourself feeling better just from that. Just start by incorporating more healthy foods in your diet and pass on the GF goodies too.

    There's no need to stress over changing your diet. Eating healthy is easy once you get in the habit ...

    You'd be surprised at how many kids give up gluten, dairy, etc willingly once they figure out that they stopped vomitting or running to the bathroom, etc once they've stopped eating it.

  3. justdifferent

    justdifferent New Member

    The thinking is that the inflammatory auto-immune response to gluten is, instead of damaging the GI tract as happens in celiac disease, attacking the CNS. Gluten ataxia/gluten encephalopathy is still somewhat controversial, but something is slowly eating away at parts of my CNS.

    While it's true that one could wean off gluten-containing products, one has to be virtually gluten-free to reap the benefits. If you are allergic to cats, being in a room with 100 cats will certainly make you ill; but even being in a room with one cat will cause symptoms.
  4. xchocoholic

    xchocoholic New Member

    Hi again,

    Good to see that you know about the CNS affects of gluten sensitivity. : ) Most people don't ... I had gluten ataxia and myoclonus myself. And even while getting slightly glutenned for the first year, these went away. I was only eating a tiny bit of one or two foods each day that were cross contaminated. Dr. Hadjivassilou says you have to be 100% GF though.

    I was just saying to start slowly and work your way to zero gluten. That way it's not so overwhelming. When I was first told to go on this diet, I decided that I would eat the gluten filled foods in my kitchen still and just not buy anymore. This might have worked if they didn't give me the runs right away ... lol ...

    I found out that the only way to be sure that you're gf is to avoid all foods processed in facilities that aren't gluten free. Or better yet, stick to meats, fruits and veggies that you prepare yourself.

    Oh and I really have to watch supplements too. Titlebaum's F 2 F pwdr has gluten in it even though they say it's gluten free. I emailed the company and they told me that they can't guarantee that it's gf though. I got facial twitching with this which I've found I get from eating gluten.

    I spend a lot of time in the GF world and we see those without villous atrophy having their symptoms eliminated when they eliminate gluten all the time, so I don't consider gluten sensitivity controversial anymore. Some people are in denial but that's getting better even. Many doctors are recognizing this now.

    Good luck with this ... Marcia
  5. debilyn

    debilyn New Member

    ...I can totally relate to being able to focus on one of the two hurdles in front of me: 1) work, or 2) my health. I too need to do whatever it takes to make it through the torturous work day. If I don't, I lose health care for my family and lose my house.

    So, I just wanted to say I understand that part of what you're faced with.

  6. SnooZQ

    SnooZQ New Member

    Yes, it's true that just a little gluten is damaging in celiac disease. And even though I don't have my fingers on the research for gluten encephalopathy, chances are a little gluten is very bad there as well.

    My experience is with 9+ years in a gluten intolerance group -- and being gluten intolerant myself. In reality very, very few celiacs are able to be 100% GF starting the day following their diagnosis.

    As with everything in life, there is a learning curve to GF lifestyle. And as with every learning curve, there is considerable energy expended getting to the top of the curve. But once you are on top of it all, like anything else, GF lifestyle becomes second nature.

    Remember how overwhelming it was when you first sat behind the steering wheel of a car? But now you probably drive on autopilot. Same with GF diet.

    Even if the curve is steep & energy is wanting, one can still have a goal & make daily progress towards it. Some people can make bigger steps, others smaller steps. But the idea is, set yourself a small goal each week -- a goal that you can maintain as you add on a new mini-goal the following week.

    From experience I will say that it is MUCH less energy draining to have a dedicated GF kitchen, to plan, shop & prepare all of the family's meals GF. While you may think this is too expensive, there are economies of scale & time that make it a very worthwhile endeavor.

    Please also consider: if you believe you have some form of gluten-induced autoimmunity, you owe it to yourself to have a complete thyroid panel (free T3, free T4, thyroid antibody panel -- 3 AB tests), adrenal antibodies, and hematocrit done.

    It's not uncommon to find subtle endocrine abnormalities or anemia that complicate the energy drain, when gluten intolerance is part of your package.

    Then again, many people find that once they are on GF diet & their immune system is not constantly draining resources due to gluten issues, there is a more focus, more energy to commit to everyday life.

    I would encourage you to take small steps to becoming GF. Nothing in life is absolutely 100%. You know, there's a few ppb of gluten in the air we breathe ...

    A great resource, if you haven't already seen it, is Dana Korn's book, Living Gluten-Free for Dummies. Lots of info, highly readable, not overwhelming.

    Also -- consider attending a local Gluten Intolerance Group (GIG). Local support is very helpful in terms of socializing, and tips for local shopping/dining.

    Best wishes.
    [This Message was Edited on 04/29/2009]
  7. ruti

    ruti Member

    At the begining it looks complicated - you get used to eating gluten free
    quickly - it is important that all the kids will be tested (at least the blood tests)
    You can start by going to a good health store and buy Gluten free bread, pasta (I recommand rice pasta by Tinkiada), cake / cookies, soup mix, spices, rice cake or corn thins, GF soy souce.
    Things from Rice, corn are ok.

    This will allow you to switch to GF products immediately and start expeirncing basic cooking with GF. Later, you can learn how to bake/ cook with GF.

    You can make any food you are used to make but substitue the flour, bread crums, soup mix etc with GF products. Some people buy a bread machine to save money by baking yourself. This can be stage 2. In stage 1 you might want to start by buying some GF breads/cakes and learning how to read labels. Start with a place that it will be marked clearly Gluten Free and later you will learn how to look at products even if it s not labled.

    Baking is a little more tricky - you might want to look for recepies in a celiac society.

    We cook all the food for the family GF (for the non GF people as well - it makes it easier and no one minds.)
    We make Pizza daugh with a bread machine.

    After you pass the shock of being diagnosed you can think that this knowledge is going to make your life so much better health wise and that you now know what you need to do to make your life and your family better - and we many times spend years to try to figure out what can we do to get healthy - you are on your way to recovery.

    All the best