Dear Dude: I Apologize to the Celiac Community

bad celiac

3 quick Dude Notes before we kick things off today:

Dude Note 1: Jennifer’s Way bagels are ready for shipping as of last night. Get em while their hot!

Dude Note 2: The new Gluten Dude website will be launching in two days. It’s kinda, sorta, almost ready. Already pulled two all-nighters. Do I hear a third?

Dude Note 3: I swear I had three things to say, but now I totally forget the last one. Yep…I’m tired. (I also sound like Rick Perry in last year’s debate.)

Ok…onto today’s Dear Gluten Dude.

I love, and I mean absolutely love, the things people share with me. It’s one of the joys of being an advocate. The latest email comes from a fellow celiac who pretty much sucked at it…until she found this site and she has seen the light.

Here’s her email:

I have a complicated history with celiac – and unfortunately, I was initially (and still struggle) with being one of the bad celiacs. When I was first diagnosed, I did not take it seriously at all. I’d occasionally eat gluten-free but never went to much trouble. Not that it’s an excuse but my (now ex) significant other at the time would make fun of me for trying to eat healthy and it was an overall rough time.

I basically wrote off that it was a false test (even though it was confirmed by blood work AND biopsy). I never had what I thought were serious symptoms. A few years later I went to another GI – had more blood work and ANOTHER biopsy which (obviously) both came back for celiac. My GI at the time didn’t even need to wait for the results of the biopsy, after my endoscopy, he said just looking at my intestines, he was 100% sure I had celiac.

I ate gluten-free for a year and a half, but I didn’t do a ton of research into the future complications of continuing to eat gluten. I don’t have horrible symptoms, but I haven’t been eating gluten free for over a month. I’m now suffering bloating, gas, fatigue and horrible joint pains. All of which now I know can be due to my stupidity. I am sorry for being a bad celiac. And after reading your website I realize just how terrible the ramifications are of my decisions.

So basically I am writing to apologize to the celiac community. I’m so glad to have found your blog and this community and I hope that now that I am taking this disease seriously, that I can be welcomed in.

I did also have a question. During my time of eating gluten free – I was still experiencing bloating, gas and stomach pains. I went to a new GI (I’ve moved a few times) and she check my bloodwork and said my antibodies were good, so no signs I was accidentally ingesting gluten. Is it possible I was eating a small enough amount to be affecting my body physically but not have it show up on bloodwork?

Thank you for making this blog and helping me see the light.

First, let me say this:

Ok…now that I got that out of my system and you’ve been formally admonished, STOP BEATING YOURSELF UP. Everybody handles their diagnosis differently and I’m sure you’re not the only one out there who used the “denial” defense mechanism.

Now stop cheating. Forever. You’re hurting yourself and you could be affecting the community as a whole by not taking the disease seriously.

If you’ve done the research, you may know that patients with celiac disease have an increased risk of death from gastrointestinal malignancies and lymphomas. You don’t want that. I don’t want that for you.

In answer to your blood work question…yeah it’s possible. Your blood work may be ok, but if your intestines aren’t healed, you’ll feel it for sure.

Welcome to the community. We’re happy to have you.

And by the way, I’m glad your ex is indeed your ex. He sounds like a real tool.

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24 thoughts on “Dear Dude: I Apologize to the Celiac Community”

  1. At least she FINALLY saw the light!!! If she gets bitchy and irritable after binging on forbidden foods, her new dedication to the GF diet should help immensely. Others may well notice that, too. As a community, we need to commend her for becoming one of us and making the non-Celiac public take us more seriously.

  2. Ok here’s the heartless: boo hoo you hurt yourself. You didn’t “hurt the community” you didn’t “ruin our dining out experience” (ok maybe you indirectly caused that one jerk waiter, but I’m guessing he’s a jerk without your help)…this is about you, your walk, your changes & your validation…get it?
    You’ve been winning at russian roulette with a loaded gun & have just emailed the NRA to aplogize. YOU have been harming YOU all this time. Big question is, what are you going to do about it moving forward?
    We all must walk our own journey to figuring this out. it sucks changing a diet that has made us too fat (or waste to a sheleton), change how we relate to other people, & what harmful people we allow in our life. For the record: yes the ex was being abusive, yes he was keeping you fat, dependant & insecure for his own twisted purposes. FYI this guy, his brother, sister & cousin are all people you will continue to run into in one form or another till you learn to tell them to suck it (popcicles are GF & taste great 🙂
    Learning that some people are in our lives to teach us, even if that lesson is that they AREN’T someone we need to be around are good. If you must harm yourself for someone else to be happy…you don’t need that person. Is cancer worth a donut? Is death worth someone that likes you sick & weak? These are the important lessons to get from this experience, not hey pork chops, baked potato & salad with vinegrette dressing are all naturally gluten free. Forget the whole “healthy” label, this isn’t the jenny watchers paleo fast diet…its changing your life forever so you don’t die from cancer.

    1. I have to say this is one of the best posts I have ever seen, and I absolutely LOVE taxlady’s comment. Cannot add another thing.
      Dude, you are the best and I hope you sleep well tonight!

  3. Not to sound dramatic but going GF was probably the toughest thing I’ve done. But 10 months in and I’ve found so many yummy alternatives it makes things easier. One of the things i kept reminding myself of is food is for fuel. Not necessarily enjoyment. But enjoyment does help! You will be pleasantly surprised at how much food is available. And how big and great a community we all are. We got your back! Good luck! And keep coming.to GDs page.

  4. “still experiencing bloating, gas and stomach pains”

    I would consider eliminating Dairy for awhile to see how you feel. I have been lactose intolerant since high school and those are my symptoms when I eat cheese or drink milk. I don’t eliminate all dairy from my life and instead choose to take lactaid supplements, but some people have to.

    A dairy allergy will not respond to lactaid enzyme pills, but simple intolerance often does. I have found that Costco Kirkland brand lactaid enzyme is labeled as GF to < 20 ppm.

    Now that my wife has her celiac symptoms managed and has begun to feel good again, she too has noticed that she still gets cramping and gas that comes and goes so she is experimenting with eliminating dairy to see if those symptoms are related.

    1. To anyone suffering the symptoms of lactose intolerance: keep in mind lactose (milk sugar) is digested in the same area of the small
      intestine as gluten. So until those villi heal- anywhere from 4-6 months or more, try to avoid dairy/lactose for a year and see if the symptoms go away. You can always starting adding it back in. By the way, the more fat in the dairy product the less lactose it contains. Hard cheeses like cheddar, parmesan and swiss contain no lactose, neither does heavy cream or full fat ice cream. There are lactose free substitutes for low fat cottage cheese and low fat milk for that reason, Be sure to use Cabot hard cheeses (not processed cheese).

  5. I second the suggestion of eliminating dairy for a while. Celiac disease often goes hand in hand with lactose intolerance. It sounds like you’ve done a lot of damage. Give your body time to heal.

  6. This is a wonderful email and makes all the effort that people like Gluten Dude do so worthwhile! This has inspired me to persevere in my own efforts to support Coeliacs and educate the public about our condition. Welcome to the community! 🙂

    I initially felt so much better gluten free then I went downhill again and doctors advised to eliminate dairy from my diet and I improved. Then I went down hill again and started reacting to everything, eggs, corn, nuts etc… I’m now following the Paleo Autoimmune Protocol eliminating everything that my body could possibly react to, and I take FODMAP’s into consideration and finally feeling better again. I still have to be careful how I eat, i.e not too much at once and very strict about cross contamination, but getting to grips with it all now. So grateful to have found a way to heal myself and eating lots of yummy naturally gluten free food, some of which I’d never heard of before let alone included in my diet! If you want any recipe inspiration check out my site http://www.healthyhappycoeliac.com

    Good luck with it all!

  7. Glad she finally “saw the light” (with gluten and the ex), and hope she can stay strong. It is easier for some to give up things that are bad for then than for others, so hope she stays in the right mind set to remain gluten free. I would get those test results from the new GI, though. If she changes doctors a lot, she needs to be able to compare results herself. I have found abnormal results on tests that doctors had informed me were “normal” so, just sayin. Eating habits are hard to change. Any habit can be hard to change. Continuing symptoms could be for a lot of reasons, like others mentioned, but it also takes time fir the gut to heal from being glutened. I found that taking really, really good probiotics and digestive enzymes has helped me a lot. But I can’t eat eggs, corn, or drink milk. Hard cheeses and yogurt are ok, but not the milk, for me. Glad she found your blog. Glad you blog, GD. Can’t wait to see the new site!!

  8. Some years ago I questioned an organic dairy company about how they produced their gluten free milk. They told me the same homogenizer was used for both fresh and chocolate milk. The CM did contain gluten, but they assured me they clean the machine. uh huh.

    At least I got some coupons for cheese, which I gave to my sister.

    (It’s too long ago to name the brand. Wouldn’t be fair)

    1. Yeah. And when I called Lundberg’s to see if they have any rice chips that don’t have corn in them I was told “no”. So I asked if they used 100% organic ingredients and was told they use “organic”. So that means they can use 30% non organic ingredients. So I asked if the corn flour was certified gf, because it can be cross contaminated in milling, especially since not 100% organic, and was told it isn’t certified but all their suppliers told them the corn ingredients were gf. Does the supplier test? Nope. So much for knowing what is in your food. Anyone want a bag of Lundberg’s rice/corn chips?

  9. You might also be experiencing some reaction to cross-contamination. In the beginning, I would go gluten free and then off again. After a few months I realized that I HAD to eat gluten-free to feel well. Then I ate gluten-free, BUT didn’t take cross contamination as seriously. I would eat french fries at restaurants (only potatoes…right?) and use the same toaster as the rest of my gluten eating family. I did not like to sound “picky.” Well…after about 6 months of feeling better with some “occasional symptoms” thrown in I realized that I must still be eating gluten somewhere (or was reacting to something else). I decided to become a gluten nazi and try to avoid all foods that might be cross-contaminated. I figured if it didn’t work, I would start looking into other potential food issues. I stopped eating anything fried at restaurants ( no fries coated in gluten containing oil) even if the item did not contain gluten itself. I bought myself my own toaster, colander, can opener, cutting board and a few utensils. I informed my family what I needed from them…don’t spill flour all over the stove and let it spill into the knife drawer….don’t use my special kitchen items…don’t double dip into the peanut butter. I no longer eat “questionable” items that “may” be gluten free. I read lots and lots of labels. But…low and behold after doing all this I began to feel even better. So I do not believe that I am a “picky” eater. I am just diligent about what I eat to protect myself. It is well worth the effort. Good luck on your new journey to good health!

  10. My first thought is Lactose. Many Celiac’s continue to consume lactose after a diagnosis and this can (and often does) cause bloating, gas, pain, etc. I had to go off of Lactose for the first year I was diagnosed with Celiac. It helped a lot to get off gluten and lactose. This is something a lot of doctors fail to share with their newly diagnosed patients.

    Since then I’ve been able to have lactose in small amounts, but I still have to be very careful because it can cause a lot of gluten type reactions. Anyway, this may be another reason the writer of this post is continuing to have problems after being gluten free.

    1. I gave up dairy a few years ago. Best thing I could have done. I will occasionally (god…I spell that word wrong every single time) have some ice cream and I pay dearly for it.

  11. I just want to share that yes you can have ok antibodies and be getting glutened… I got glutened occasionally but my antibodies stayed negative. If you are having symptoms Id suggest trying a stricter diet for a bit to see if you can get them to resolve (I.e., fruits, veggies, meats). This would just be so you can know what your ‘baseline’ is… But it takes people a variety of lengths of time to feel better so be kind to yourself!

  12. It also takes your body a whole to recover if you are just committing to GF. That and as mentioned… Cross contamination.

  13. When I read you comments I wanted to cry. I was thinking: “You do not have to apologize”; just keep eating gluten-free, although never
    stop going to see the doctor for check-ups. Your question about the blood test results kept me thinking about… did they do a good test?
    How did that amount of gluten disappear? Maybe trying with another lab?
    Celiac not only causes cancer in the gastrointestinal area; it does other (many) things. That is why we need to keep taking care of ourselves, because we can die of it. My father died of a cardiomyopathy and I do not want to go through the same thing; that is why I take care of myself really well knowing that my body reacted the same exact way his did when he ate gluten. My mother died of complications for senile dementia; she also had psoriasis. After some time I realized she had the disease also like my dad, when my genetic test revealed I was a “super celiac”.
    Take care of yourself well and NEVER eat gluten again or you will be part of the stats sooner or later.

    Love,
    Maria

  14. I forgot to say this: People with celiac disease are not supposed to have problems with dairy if they have been on a gluten-free diet for six months or more, according to Dr. Green on his book “Celiac Disease”. I am referring to people with celiac disease; I am not talking about people with an allergy to gluten, because that is a different matter( I am thinking of Dr. Fasano’s studies).
    If you are having problems with dairy, you have celiac disease, and you have been on a gluten-free diet for a while, it is better you see a Celiac Disease specialist to find-out what is really going on. Good luck finding out the truth of the matter.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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