Celiac Disease

It sounds really scary, doesn’t it?  Anything with disease in it is seems to cause heart palpitations, perhaps a twitch of the eye, or shoulders to tense.  Celiac Disease caused no less of a reaction in me (except for the eye twitch – those are reserved for when my son hits this really loud and really high pitch).  Admittedly, now that I know more it still strikes a bit of fear in me.

The nuts and bolts of it are this: Celiac Disease is a symptom and an autoimmune disease.  It is literally defined by villous atrophy.  Those small little things in your small intestine that help you absorb nutrients?  Well, they’re blunted in someone with celiac’s and thereby hinders their ability to be healthy by causing malnourishment.  In some patients celiac presents its self as a bit of iron deficient anemia and perhaps, as is the case with my son, what is called a failure to thrive (he didn’t gain much weight that year).  It sounds so simple; such a very undramatic thing.  In reality it is sneaky, persistent, and destructive.

The reason this isn’t merely a case of gluten intolerance (and I don’t mean that as a way of diminishing that issue – a dear friend of mine has it and chronic pain is no walk in the park), but literally a level of intolerance that is more akin to actual allergy.  The reason it is categorized as an autoimmune disease is because of what happens when the person with celiac’s eats gluten.  The enzyme that our bodies produce in order to fix our intestines is called tissue transglutaminase and in people with celiac’s their bodies produce antibodies to destroy it as the gluten actually destroys the villi.  This is why a blood test looking for these antibodies is so vital in diagnosis (and, honestly, why a small intestine biopsy is not necessary).  In many cases physicians will also do tests called the IgA and/or IgG test to see what other antibodies the body is producing.

All of these things disappear when gluten is no longer present in the individual’s diet.  So much so that if they had stopped eating gluten in the weeks before these tests were done they more than likely would show a negative result.  This is possibly why so many physicians still opt for the small intestinal biopsy (might also be because it’s a rather costly little test despite the fact that it still boils down to getting just the right samples for a positive result to be shown; minimal damage/early stages makes it that much harder to get the “right” samples) for a definitive diagnosis.  Damage done to the intestines, depending upon the duration of gluten ingesting as well as age at diagnosis, can be reversible.  However, remaining gluten free is absolutely imperative for a patient with celiac’s.

When a person’s body can not handle gluten the risk of colon cancer, small intestinal adenocarcenoma are both increased should the individual continue to ingest it.

Now, the fun part.  The elimination of gluten is not merely getting rid of wheat or obvious wheat byproducts such as flour, but also avoiding spelt, barley, rye, kamut, triticale, malts, and according to one source couscous.  This also means any derivative of the above.  Sweeteners and thickeners are both very suspect until you know their origin.   Also, beware of vitamins as many of them are contaminated by or contain wheat (among other allergens).  Same goes for dried fruit.

I’ll save my longer rant for another time, but since going gluten free I must say this:  The US has massive issues with processed foods and cross-contamination.  Needless to say this is a huge adjustment for my family and, writing wise, has taken up much of my writing time.  It is no small thing to become in the know about all this stuff never mind trying to find a way of maintaining a balanced diet.  What I wish I knew before all this was how to read a nutrition label.  Not exactly the fun type of reading I usually prefer.

Anyone else have to deal with this?  Perhaps a family member or friend needing a dietary restriction?  Any sanity saving tips?


11 responses to “Celiac Disease

  • intoleranceisbliss

    I feel for you; I have severe gluten intolerance, and to lactose as well. I’ve been gluten free for just over a year – and it’s now that I really feel like I’m in control of it and I know what I’m doing. The first thing I’ll say to you is stay motivated. You hear of so many people giving up, and going back to damaging their bodies. Try not to treat it as a ‘diet you have to be on’, treat it as a lifestyle change – learn to love it – you’ll look back eventually and realise it’s changed your life for the better. You’ll feel healthier, and a new person. At least, that’s how I feel.
    I suppose one question to ask is whether your whole family are going to be gluten free? If not, don’t forget you can cross contaminate gluten at home, so use separate cooking pans and dishes etc (label them – I went label mad when I first went GF!)
    Wow, sorry for the long reply, there are recipes and maybe some inspiration over on my blog if you ever need inspiration – I blog just to remind myself that really, my intolerances are a positive thing, and it doesn’t need to be ‘cardboard and lettuce’ for dinner.
    Kathryn x

  • jessicabookworm

    I am moderately lactose intolerant, I say moderately because it doesn’t always affect me and if it does the worse that will happen is I’m sick. It is only as an adult I really decided to do anything about and switched to soya milk for tea, cereal and drinking generally, but my intolerance is so low that more processed forms of milk like cheese don’t affect me at all. However I could see how frustrating it would be if I was because milk is in so many things! And here in the UK like you the shops are full of processed food with God knows what ingredients in. To be honest I’m trying to cut down on them even without a medical need to because I just don’t think they can be that healthy for anybody.

  • litlove

    I don’t have this, although I know a number of people who do. Like all big adjustments, changing the family diet is complicated and hard work to begin with, but quite quickly you settle down into new routines and then it’s no trouble at all. I am a huge believer in only eating things that you could see growing or living around you. Cutting out processed food, hard as it is at first, will do wonders for everyone eating that better diet. Six years ago I went on a chronic fatigue diet – no sugar no yeast, no booze no caffeine. Imagine trying to find foods without added sugar! But it does make a huge difference to my general health and I wouldn’t go back now.

  • Laura Marcella

    I don’t know anyone with Celiac disease and don’t know much about it. Thanks for this informative post. You’re right about the U.S. having major problems with processed foods and cross-contamination. I’m one of those people who is standing in the grocery store aisle reading labels!

    Hope you have a great weekend, Kimberly, and best wishes with everything!

  • Celiac Disease « The Perpetual Writer - Celiac Disease Prevention

    […] a twitch of the eye, or shoulders to tense. Celiac Disease caused no less of a reaction in …kimberlyloomis.wordpress.com/2012/02/24/celiac-disease-2/ Google Alerts – celiac disease Be Sociable, Share! […]

  • Jan Loomis

    I am guessing that my Uncle John had this problem. He was my father’s youngest brother. There its a real learning curve to maximizing the nutrition and minimizing the allergens. Since when my Uncle was alive he was not diagnosed, or was possibly one of the family secrets–hard to know because he and his wife moved to California early in their relationship. I do know he spent a great deal of time in the hospital and lost a fair amount of his intestines. It absently ships some generations out shows up only mildly.
    Unfortunately, it a

    Zpears that the additions of cheap filters in

    pre-prepared food is causing a lot more people to become problematic.

  • Jan Loomis

    Please look into the GAPS diet. It may have the potential to help heal D’s intestinal lining. Even my sister thinks it could work.
    Sorry about the earlier post, no computer yet so trying to post by phone and having two left thu

    mbs makes it a challenge

  • sara

    Kimberly, This lady has experience with gluten allergies and believes her children have been healed by following a careful diet for some time. Maybe it will be helpful to you or at least give you hope. http://thoughtsaftergod.blogspot.com/p/overcoming-allergies.html

  • Sarah Savasky

    I won’t bore you with all the details, especially since you are living them. you already know that celiac is not a peice of cake. I try to apporach it with humor as much as possible but sometimes I just have to cry. Writing helps too!

  • Louise

    Right there with you. I got sick two years ago and got ZERO support! Even one of the online communities that was “supposed” to be a support group said to me “oh, you’ll get used to it”. My own family and friends treated me like I was just being a hypocondriac and would say ” oh, just take a pill” and roll there eyes. It’s been a tough road but I’ve finally got it under control. I take NO chances! I even started a cottage foods business, Weeziesgfkitchen.com and it’s thriving! My biggest problem is I forget to take food with me when we go out somewhere, or eat before, just in case.
    And to Sarah, my first trip to the grocery store after being diagnosed was a nightmare! I ended up buying some Amy’s GF Lasagna, came home, cooked it, sat down to eat it and just burst into tears over the whole ordeal.

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