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Batman has Robin, Sherlock Holmes has Watson, Shrek has Donkey, Frodo has Samwise, but celiac disease isn’t as single minded.

Sometimes, regardless of how much we wish celiac disease was a loner, there’s more than one sidekick to accompany it.  And while a sidekick can be thought of as a good thing, some people who experience celiac disease and its sidekick(s) think of them more like The Joker and Poison Ivy.  (Celiac disease is associated with greater risk of Hashimoto’s thyroid disease, diabetes, and other forms of autoimmune diseases—autoimmune means that your body attacks some part of itself as though it were a bacteria or parasite that shouldn’t be there.)

Heidi over at Adventures of a Gluten Free Mom has some great posts, but this one profoundly impacted me.  Heidi’s article talks about the ‘why’ of cheating on a gluten-free diet, but the reasons she lists apply to a lot more than just gluten.

I don’t cheat on my gluten free diet.  Given the choice of eating gluten or not eating at all, I’ll pick not eating at all…even if that means no food all day.  Gluten causes massive hunger for me, so being hungry for a day is nothing compared to feeling like I’m starving for as long as a few months.  However, I have a huge family history of diabetes, and there have been times when I haven’t been as mindful of that as I should.

I’ve been reading Dr. Richard Bernstein’s book The Diabetes Solution and can’t recommend the book enough if diabetes might be a concern for you.  I don’t have diabetes, but the majority of my immediate family members have been diagnosed with it.  I recently learned that one of them is having readings outside of a normal range, despite a healthy body fat percentage, and that made me pause.  For the first time it seemed possible that maybe there is an autoimmune component to the diabetes that “runs in my family” instead of it being entirely diet related.  That’s when I realized that despite eating lower carb most of the time, I might not be able to avoid autoimmune-induced diabetes.  But currently I don’t have it.

Eating gluten-free can be challenging, but my biggest regret is that I wasn’t diagnosed sooner so that the damage it did could have been stopped.  With my fasting glucose readings running around a healthy 80, I have the opportunity to prevent any damage that could be caused by a disease that I might or might not develop.

Maybe by catching the celiac disease and treating it, I prevented the progression of diabetes other family members have experienced.  I’m the youngest by several years, so maybe the progression is happening but hasn’t hit a noticeable level yet because of the diet I eat or just pure time.  Maybe the diabetes in my family is all diet related and there isn’t an autoimmune component.  Regardless, I’ve been trying to decide how I feel about adopting a diet that limits any potential damage future high sugars could bring without knowing if I “need” to eat that way.

Dr. Bernstein, who is currently in his 80’s but was diagnosed with insulin-dependent diabetes at age 12, outlines a way to keep even insulin dependent diabetics in a healthy glucose range.

One of the guidelines of Dr. Bernstein’s Diabetes Solution is to have no more than 6 carbs with any meals before noon, and to have 12 carbs or less with any meals after noon—6 carbs is about 2/3 c. of broccoli.  He explains how he arrived at those quantities and why in his book.

When I’m alarmed at my family’s glucose readings, they tell me I don’t understand how hard it is.  They might even feel like I’m being mean to suggest they shouldn’t let their sugars run so far out of the normal range.  I do get it, and it isn’t mean to want them to avoid the long-term damage their short-term food desires will cause.

I understand the power of food, the emotions we associate with it, the social aspect of it, and what it is to know that if I want to be healthy I will never again sink my teeth into certain foods, never share them with friends or family, and never make new memories or continue old traditions with them.  I know what it is to have a disease/illness feel like some undeserved punishment for a crime not committed.  I also know what it is to successfully manage that disease and feel significantly better (and not like a victim) as a result.

The thing is, at the end of the day the fair or unfair of it doesn’t matter.  The simple truth is that we can’t control our family history or the autoimmune diseases we do or don’t have.  But once we know we have a disease that is strongly affected by diet, we’re the only ones who can limit the damage the disease does.

So even though things out of your control are happening, you’re not powerless.  And while I know that it may not feel like it now, eventually you might even be grateful for the lessons learned as you journey towards better health.

Oh, and by the way, I decided that unless (hopefully not until!) I’m diagnosed with diabetes, I’m going to eat according to Dr. Bernstein’s recommendations for 98% of my meals.  It’s not really all that far from the gluten-free diet I’ve been eating, and it stacks the odds in my favor that I’ll avoid ever being diagnosed.  Unlike the damage eating gluten would do if I included it in my diet, there’s a good shot that there will be no ill consequences for eating more than 12 carbs at a meal if kept to just 2% of the meals I eat each month.

:)
Kathryn

 

THE CHALLENGE*

Some of you reading this may be thinking that you’re super glad you don’t have to deal with celiac disease, diabetes, or any other autoimmune disease.  I’m sincerely happy for you.  There’s probably even a few of you who felt some contempt toward those who don’t manage their diets. 

But instead of casting this article aside, I challenge you to start tomorrow and eat gluten free and low carb for forty days.  Tomorrow?  Yes.  Pretend you just got diagnosed.  Start gluten-free tomorrow and be following Dr. Bernstein’s diet recommendations within a week (that gives you some time to read about the basics on his website.)  In this world of booming rates of diabetes and increasing numbers of celiac disease, if it isn’t you, one of your friends, family members, or coworkers will be diagnosed (and has probably already been misdiagnosed) in your lifetime. 

But what are you going to do for food at your business meeting?  What if the airplane/hotel/restaurant etc., doesn’t have food that’s on your new safe list?  What are you going to do when your friend invites you over for dinner/a party?  How are you going to handle the weekly gathering of friends/family at the bar/restaurant/church, etc.?  There’s gluten in chewing gum and some meats?  Is there gluten in the tea or coffee you drink every day?  Do I realize how much time it takes to read all the labels and that many restaurants have no clue about how to prevent cross-contamination of food…do you really have to read the label each time and ask the server to make sure your food has no gluten?  Yes, you do.  How do you make meat, veggies, nuts/seeds, and dairy into meals you won’t be bored out of your mind with after a few days?  What about Thanksgiving with stuffing and pumpkin pie…is there anything there you can eat, will you have to bring your own food just to be safe, and what will your family say when you can’t have the food your family eats every year at Thanksgiving and have since you were born or before??? 

40 days…most of you reading the above paragraph told yourself there was no way you could do it.  You might have said maybe you could do gluten-free or low carb, but not both.  But for those who are really diagnosed, we have to find a way to succeed and thrive for the rest of our lives at what you just thought seemed an undoable task for even just 40 days.  We also have to deal with people who think it’s impossible (and therefore think we should just eat their way) because the idea of that much social and emotional change scares the crap out of them.  And then there’s the scariest question that I didn’t include above, ‘what if decide to do the challenge and I feel better at the end of it…what if the skin rash, headaches, mood swings, brain fog, canker sores, stomach problems, constipation, diarrhea, aches, and pains, or other symptoms I’ve had for years go away?’

 

*You should always check with your doctor before making any diet or exercise changes.  If you are already diabetic and lower your carbs significantly, your insulin is likely to need to be adjusted to prevent you from having a dangerous low.  Therefore, it may not be possible for you to start the challenge tomorrow, should you choose to do it at all.  The point of making the challenge was to get you to think about the issues facing those with diabetes, celiac disease, or both—to get you to understand that changes in diet go way beyond the food itself, and to get you to question why you let your sugars run high if you have diabetes.  Given that currently nearly 27% of people over 65 and 11% of people over 20 have diabetes (and those numbers are expected to rise to an even higher rate in the next 20 years…so 1-3 out of every 10 adults currently with more than that in 20 years!), you or someone you know will be affected by it.  Celiac disease is less prevalent, but as diagnostic tools and awareness improve, the number of people accurately diagnosed with celiac disease is likely to increase significantly.  Awareness now might prevent more disease and damage in the future.  Wouldn’t it be cool if those numbers went down instead of up in the next 20 years?

 

Useful Links

http://www.diabetes.org/diabetes-basics/diabetes-statistics/

http://www.celiac.com/articles/1135/1/Connection-Found-between-Celiac-Disease-and-Hashimotos-Thyroiditis/Page1.html

http://www.celiac.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Diabetes-and-Celiac-Disease/

http://www.adventuresofaglutenfreemom.com/2011/10/ask-heidi-cheating-on-the-gluten-free-diet/

http://www.diabetes-book.com/ You can read part of Dr. Bernstein’s book online for free there.

http://amzn.to/uzhzwV is Dr. Bernstein’s book on Amazon

 

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2 Responses to “Celiac’s Sidekicks…and a Challenge”

  1. Andrea says:

    Very well said, thank you! I especially like the challenge part. I’d love to show it to some people…

  2. Kathryn Kathryn says:

    Thanks, Andrea! Feel free to share the link with friends or family if you think it might help. Take care! :)

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