Celiac Disease

Just over two weeks ago I started having some terrible stomach pains. Since my life on this blog is a bit of an open book, I will confess that I have had mild digestive problems for the past 10 years of my life. These issues escalated over Mother's Day weekend, and I found myself spending my Mother's Day and most of that following week in the hospital. I was discharged with some pain-killers, some medication to coat and ease my stomach, and no clear diagnosis. My stomach has felt pretty awful ever since.

And then on Thursday I received a call from my doctor that will forever change my life. The biopsy of my small intestine tested positive for Celiac Disease. I was shocked, and immediately sad because I knew what that meant. Goodbye to wheat, rye, barley, and oats. Goodbye to the comfort foods of holidays and special occasions. Goodbye to most, if not all, of my favorite recipes. I mourned, I cried, I called all my girlfriends to complain, and then I called a friend who has Celiac Disease. She assured me that my life is not over, I will find a new normal, I will stop dreaming about gluten, and in a few weeks I will start to feel a lot better.

And so today is Day 4 of my new gluten-free life. I will admit that five minutes does not pass without me thinking of food and what I cannot eat. I'm trying not to think about how my new diet is permanent. I'm taking it one day at a time, but I am dreaming about wheat based foods, including some of my favorites--pizza, pancakes, pasta and doughnuts. From what I read, gluten does that. It is like a drug, stimulating a part of the brain that craves for more. I eat and I feel full but my brain wants something more. I was told that in two weeks my brain will start to forget about gluten, the cravings will stop, and maybe the dreams will stop too.

I have spent most of the weekend researching gluten-free diets and food choices. I went to Whole Foods on Saturday night and spent $200 on gluten free baking flours and ingredients. I had to bake something, and I wanted it to be delicious. Baking something would be a small victory, a first step towards a new normal life.

At one point during my trip I wandered away from my cart in search of quinoa, and when I re-approached my cart I was shocked at what was inside. The contents looked nothing like what I normally purchase. Tapioca flour? Teff flour? Xanthum gum? Are these seriously real ingredients? I felt strange and sad. I tried really hard not to think about the permanent nature of my new diet. I distracted myself by adding sushi to my cart, and placing it in a very conspicuous location, and I continued shopping.

This morning I awoke and made gluten-free pancakes. They were good--not quite as good as my wheat based pancakes, but good enough. I smothered them with maple syrup and ate them until I felt full. And as I cleaned up the breakfast dishes I realized that I'm going to be ok. The pancakes were definitely good enough. I'll find other foods like the pancakes that are good enough. My life is going to feel normal again, and maybe sooner than I had originally thought.

You see, I already feel better. I'm not 100% percent, FAR from it, but I'm better in ways that I never thought were related to my stomach issues. Allow me to explain--

As we got ready for Mass this morning I realized that I forgot to make my coffee, again. I just didn't need it this morning, and I didn't need it on Saturday or Friday. I then realized I didn't have a headache on any of those days. Headaches normally motivate me to make coffee. I have not gone 3 days without a headache in at least a year. Maybe that's a coincidence, but probably not. My doctor told me that regular headaches are a symptom of Celiac Disease and I can't tell you how excited I am that mine seem to be gone!

And my allergies seem to have disappeared. A few months ago, I resorted to taking a daily allergy medication because my sneezing and wheezing were just that bad. But my seasonal allergies are now gone, and the change has happened almost overnight. Some of my joint pain is gone too. I had pain in my neck and back almost every day prior to my diagnosis. And it's gone. Maybe this is a placebo effect, but I'm loving it!

My gut is going to take a bit longer to heal, likely several months, but I trust it will heal in time. I'm praying the fatigue goes away too, and my doctor said it probably will.

And so tonight, for the first time, I'm ending my day thanking God that the sacrifices of the past few days have yielded such obvious fruit. The way I feel is motivating me to keep going, and I'm really curious to see what other minor health issues might disappear. For the first time in a long while I feel full of hope about my health. Celiac Disease in a gluten-loving world stinks, but tonight I am starting to see the silver lining, and I'm loving it.

22 comments:

I am staying with a couple that is gluten intolerant. My family and I are eating the same things that they eat on their gluten free diet. I have noticed a change in my children's skin and my husband's allergies. It is a bit more expensive to feed a large family this way but I am seeing such positive effects! ....And the pancakes she makes are really pretty tasty! Of course my children keep saying...."feed me some gluten!" hahaha. God bless you and I hope you feel better soon!

May 23, 2010 at 10:50 PM  

mtmom--

Maybe you or your friend can share that pancake recipe? Thanks!

May 23, 2010 at 11:31 PM  

When you get around to making rice flour muffins, make them in the tiny muffin tins. For some reason they rise better, and taste tastier. The Bob's Red Mill rice flour has a recipe for orange poppy seed muffins that's pretty tasty. They don't keep well, though.

It took me about six months to recalibrate my budget to gluten-free foods. It's expensive at first!

May 23, 2010 at 11:36 PM  

Red,

I'm so glad that you got that figured out - to end up in hospital is quite serious. Celiac runs in my family and often becomes apparent - in a very obvious away - around age 30 so I'm weary of it being 27. There is also a strong correlation with thyroid issues (both in individuals and family clusters). I'm hypothyroid and have read a lot about theories connecting the two - gluten sensitivity possibly triggering the immune response that destroys the thyroid. It's quite fascinating - when it's not making you feel awful. I do think you'll continue to see improvements; I'm so glad that you already are!

May 24, 2010 at 1:25 AM  

There is a great book called Healthy Bread in 5 Minutes a Day. It has a gluten-free section that may interest you. Good Luck!
http://www.artisanbreadinfive.com/

May 24, 2010 at 6:52 AM  

Red,

I am not sure if you have heard of this site or not, but have you heard of "The Crockpot Lady"? All of her recipes are gluten-free because her daughter has celiac. Sorry if you already have this info, but I definitely thought it was worth passing on. These are delicious recipes, and there is a lot of variety. (I find the crockpot to be such a help to me with meals. That is how I found her!)

http://crockpot365.blogspot.com

She has a cookbook that is wonderful containing all of her recipes. I just gave it as a bridal shower gift, and it was very well received! Prayers for continued recovery and easy adjustment.

-Dee

May 24, 2010 at 6:59 AM  

Im so happy that you are feeling better. One of my daughters is GF plus more (no corn, unpasteurized dairy) and I will agree it is pretty difficult at first. Once you get the hang of it, the food is much more creative and your taste buds are sparkling! I had three suggestions that I thought would be helpful. . but one person already mentioned the crockpot blog. Another blog that we have on our reader has scrumptious pancakes and lots of other ideas, recipes and fantastic pics: lifeisstillsweet.com and of course,
glutenfreegirl.blogspot.com whose recent post is on GF cookbooks.

I have found that cooking with alternative flours is difficult and very expensive. We buy bread from a coop in bulk which is much cheaper. Costco has great organic quinoa and rice which is cheaper than Whole Foods or the HF store.

We had our all time favorite GF dessert last night that everyone in our house loves. It is super easy and our quick go to dessert. Here is the link.
http://www.pbs.org/everydayfood/recipes/flourless_chocolate_cake.html

This is really the easiest flourless cake because it uses chocolate chips instead of expensive choc to chop.

I hope that this is helpful. Enjoy the journey!

May 24, 2010 at 8:09 AM  

My dear Red, I am praying for you through all of this! God bless the blogosphere for already coming to the rescue with such great suggestions. You are a trooper and I'm so glad to hear you've already been feeling better. Like I said, before we all know it, you'll have the rest of us convinced of a gluten-free lifestyle and its benefits! You go! :)

May 24, 2010 at 9:10 AM  

Red, I'm so happy that you got a diagnosis. The average time from onset to diagnosis in the U.S. is 11 years, and it sounds like that is about what it took for you.

My whole family eats GF due to 2 children having celiac and at least 3 more of us being intolerant. It becomes "normal" before you know it.

I'm feeding 8 people, so I buy a lot in bulk to save money. Tapioca starch and potato starch are found much more inexpensively at Oriental stores. Amazon sells many GF products and flours for great prices (but you have to buy a case, so make sure you like it, first!).

Oatmeal may or may not be out of the picture. It has half a gliadin molecule, so some people can tolerate, some can't. The issue for most people is contamination, so if you can tolerate, you can buy McCann's brand oatmeal or the certified GF oats (pricey).

If you like to do things from scratch, there are tons of great recipes out there. Celiac.com has a ton of recipes. There are lots of great blogs out there, too. I like the Bette Hagman Cookbook _THe Gluten Free Gourmet_. I would recommend getting a bread maker, or cleaning out the one you have and dedicating it to GF bread. It makes the bread thing so much easier. Many of the packaged brands you can buy are so expensive and taste more like cardboard than bread, but homemade is simple with a machine and tastes great. It's easy to buy a mix or throw the ingredients in.

Once you get your energy back, find recipes for the things you miss most.

If you need any recipes to get you going, you can email me at tabitha spitzer @ hotmail.com (omit spaces).

God Bless you on this new adventure God has provided for you!

Tabitha

May 24, 2010 at 9:12 AM  

My husband was diagnosed with Celiac before I met him, and water later informed that he had something else. HOWEVER, we lived 2 years together eating a Celiac diet, and I have to tell you...we did pretty good! We ate a lot of rice, you can still eat oats in MODERATION, and we made our own bread and pancakes. Polenta became our friend :) And on Thanksgiving, I made PIE. REALLY GOOD PIE that tasted just like regular pie, only the crust was a lot harder to handle. Not as pretty, just as good! So there is hope. Feel free to email me if you want brand suggestions, etc.

May 24, 2010 at 1:41 PM  

was later*

May 24, 2010 at 1:41 PM  

If you'd like something tasty, filling & Gluten Free you should try Peanut Butter Panda Puffs organic cereal. It is a pretty tasty cereal for a quick breakfast or snack.

May 24, 2010 at 3:38 PM  

Hi! A friend of JM's. I've been gluten-free for 7 years now, and if you have any questions, let me know! Your life is not over; I promise. I have learned to enjoy food again while feeling healthy. You'll be so much happier soon, and you'll wonder why you ever missed gluten in the first place!

May 24, 2010 at 4:00 PM  

A counter top rice cooker is a good buy; bulk rice is much cheaper at an Asian market, and they'll have a good selection of good & cheap rice noodles or rice & potato noodles. Tamari sauce is soy sauce made without wheat--San-J brand is good and widely available. I eat so much rice I vary it a bit, usually Thai Jasmine rice (hom mali) but sometimes a sushi-style (Cal rose) or Indian basmati.

I learned to cook a lot of Asian food, mostly from books & videos at the library because we don't have cable TV for the really good cooking shows. There's a fair amount of Asian cooking on YouTube as well. I find most Chinese food to be too high in fat to eat everyday, but I like Vietnamese food and it's much lower in fat.

You'll want to watch out with the substitute flours--they are often very high in fiber and you might want to watch out for too much fiber while your guts are still healing.

Oh, and it's crazy, but artificial crab meat has gluten in it.

I don't mean this fliply at all, but you might consider offering up your cravings for a special intention. It's hard.

Anon4

May 24, 2010 at 4:11 PM  

oh man!! I am sure you will adjust over time, and that is SO great about the positive effects you are already seeing!!

So sorry about your hospital stay.

May 24, 2010 at 6:07 PM  

Thank you all so much for your wonderful tips,advice and support! I can't wait to check out some of the recipes you all suggested. I'm still feeling good--day 6!!!

I am making two crockpot recipes this week (yeah for my crockpot!) And I'm going to keep experimenting with gluten free baking. I'm not ordering in bulk until I figure out what I actually use/like.

We have an Asian Market about 20 minutes from our house, so I'm going to plan a trip there soon.

Erin, if you don't mind my asking, how did your husband figure out that he didn't have Celiac? Does he have something similar?

May 25, 2010 at 8:46 AM  

Just wanted to say that its worth it! I feel so much better after eliminating Gluten!! And although I do miss pizza, I make an awesome homemade one. My acheiness, fatigue, headaches, digestion issues all went away, and I lost 20 pounds. I am able to make cakes, muffins, quick breads, pancakes and not tell the difference. I have not been able to replicate yeast bread, but I don't miss it that much. :)

May 25, 2010 at 12:16 PM  

Hey Red...I'm thrilled for you because I want you to be feeling healthy and it is so hard to mother when you are feeling yucky...trust me when my thyroid went wonky it was really hard to be a good mom.

However I would feel very similar in your shoes, the gluten mourning.

Wanted to share 2 thoughts...
My mom has been making really good meatloaf (the yummy local meat helps) with quinoa instead of bread crumbs...it's more crumbly but delicious.

And not sure if your a beer girl but Brendan has a good GF work friend who loves beer and they have been researching good GF beer options, I'll get the scoop!

Hope to see you this weekend and hope you are feeling even better by then.

May 25, 2010 at 9:03 PM  

Red,

What an answer to prayer to know what was causing you pain. I am fascinated by your journey and hope to learn a lot from it. God bless you.

May 26, 2010 at 11:20 PM  

Wow, Red. I appreciate your sense of loss here, but also your optimism about what might be gained (and has, it seems, already been gained).

I do not, mercifully, have a problem with gluten, but it seems like many people in my life do. My roommate for a few years had a gluten allergy (diagnosed while we were roomies, actually), and I was amazed by the online resources available to her to help her cope with her diagnosis. There is tons of great online help and support out there, and I predict that within a year you will be an expert gluten free baker.

Still, though, you are right to grieve the loss of beer , pasta, and of course the use of some of your most treasured recipes. That's a genuine loss, and your sadness is completely legitimate.

May 27, 2010 at 3:17 PM  

Red, that is a tough thing to live with, but there are definitely tons of delicious recipes still possible for you to enjoy. You might want to check out the book "The G-Free Diet: A Gluten-Free Survival Guide," by Elisabeth Hasselbeck of "The View" (she also has celiac disease). I saw the book recently and immediately thought of you and your situation. I hope you find it useful!

June 2, 2010 at 2:49 PM  

Thanks for the comment on my blog :).
I know there is a lot of good GF food out there! I discovered a great GF beer (Green's) last fall, so at least I have that for those times when I get a craving for a good beer (goodbye Newcastle :().
I've been mostly gluten-free for a while now, so this diagnosis isn't really changing my day to day life right now, which is good at least. I went from trying to find a substitute for everything I love, to just eating more whole foods. NO more waffles - instead eggs and bacon or yogurt with fresh fruit. I am going to try to make my mom's cheesecake recipe gluten-free - an almond flour crust, maybe?
Anyway, good luck with your new diet!

June 11, 2010 at 9:24 AM  

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