Celiac Diagnosis Challenges and then Dessert

For months now, my mom and my sister have been complaining of joint pain, headaches, and fatigue. I told them over and over, “It’s gluten!” I had begun to sound like a broken record and then I am afraid I began to sound like some kind of gluten conspiracy theorist. My sister went in to get tested and realized what a confusing mess getting a diagnosis is- Her doctor dismissed celiac disease completely without even discussing her symptoms! In my opinion, the first step to getting a good diagnosis is having a good doctor. I am afraid that natural health/preventative medicine types are few and far between! The doctor suggested IBS without so much as talking with my sister, running tests, or doing an examination. My sister did a lot of research and decided she could live without an official three-tiered diagnosis and has embarked on the gluten-free diet. Good luck, Caroline!

I support her decision partly because I made the same decision myself. Maybe one day, when I am far removed from my child-bearing years, I will seek a diagnosis, but for now I am content. I feel great. My health is great now and for me that is enough of a diagnosis. It is easier for me than for some because I had chronic urticaria (hives) as a result of eating gluten. I do not want to risk eating gluten for an extended period of time when I am pregnant or breastfeeding. And I do not want hives.

Two things made it almost impossible for me to figure out what was going on for almost a decade:

1) The ubiquity of gluten

2) A delayed immune response

3) Lack of information/ignorance of doctors about celiac disease/chronic urticaria.

Sometimes I envy those that have had an official diagnosis, but I know the result would be the same- going gluten-free has made me happy, healthy, and virtually hive-free! I am lucky because I have a great family practice doctor now. He does not like milk or gluten for anyone not just for celiacs or the gluten-intolerant. The prevalence of immune diseases in my family is enough reason for him to caution me about giving my boys milk and gluten, celiac or not. I must note here that I have not eliminated casein (although maybe one day I will), however I do not give my little ones cups of milk to drink (we drink water). I breastfed my toddler through his introduction to gluten until he weaned at 17 mos. I am hoping that neither of my boys will have problems with gluten or food allergies.

I am going to round out this post with a more positive note- dessert!. It is essential that I have chocolate and coffee together at least once a week- okay, maybe twice. I really am going on a diet and exercise regimen soon. I am giving myself six weeks before I look at the scale and start the gluten-free diet diet? and exercise challenge. haha. My goal is to be back at my pre-pregnancy weight by my birthday in November. Stay tuned.

This chocolate marble bread is based on a Martha Stewart recipe. I replaced the flour, added one teaspoon xanthan gum, and added 2 beaten egg whites.

choc marble bread Celiac Diagnosis Challenges and then Dessert

CHOCOLATE MARBLE BREAD WITH CHOCOLATE GANACHE

8 ounces (2 sticks) butter, softened, plus more for pan

1 1/4 cups GF flour (I used 1/4 cup tapioca flour, 1/2 cup sorghum, 1/2 cup white rice flour)

1/2 teaspoon salt

3/4 teaspoon baking powder

1 teaspoon xanthan gum

8 ounces semisweet chocolate, coarsely chopped (5 oz. for bread and 3 oz. for ganache)

2/3 cup plus 2 tablespoons sugar

4 large whole eggs plus 2 beaten egg whites w/stiff peaks

1/2 cup whole milk

1/4 cup heavy cream

DIRECTIONS:

Preheat oven to 350 degrees. Grease your loaf pan. Sift flours, salt, xanthan gum and baking powder into a medium bowl.

Melt 5 ounces chocolate in the microwave or over a double boiler. Do not overheat chocolate.

Put butter in the bowl of your stand electric mixer fitted with the paddle attachment. Mix on low speed until smooth, 2 to 3 minutes. When you add sugar, raise to medium speed. Cream butter and sugar until pale and fluffy about 3 to 4 minutes. Scrape down sides of bowl. Mix in the 4 whole eggs, 1 at a time. Reduce speed to low. Add flour mixture in three batches, alternating with two batches of milk. Mix until just combined. Fold in your beaten egg whites gently.

Pour half of batter into melted chocolate and stir. Alternating between remaining plain batter and the chocolate batter, drop large spoonfuls of batter into the loaf pan. When pan is filled, use your knife to cut through batter with a swirling motion.

Bake until a cake tester inserted into center comes out clean, about 45 minutes. Let bread cool slightly in pan on a wire rack, about 10 minutes. Run a thin knife around edges of bread to loosen; unmold. Let cool completely on rack.

Tip: If your loaf sticks to the pan, hold the pan over a pot of boiling water for about a minute. Turn the loaf pan over and your bread should come out perfectly. If it doesn’t repeat until it does.

To Make ganache: Place the rest of the chocolate in a bowl. In a small saucepan over medium heat, heat the heavy cream until just about to simmer. Pour cream over chocolate; stir until mixture is smooth. Let stand 10 minutes to thicken slightly. Spread ganache over cooled cake; let stand until set, about 1 hour. Bread can be stored in an airtight container at room temperature, up to 2 days.

Check out Mary Frances’ Gluten Free Cooking School blog this week, she is doing a how-to series on eggs that will help you make this recipe!

Please leave encouraging words for Caroline in the comments- it is her first week gluten-free!

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25 Responses to “Celiac Diagnosis Challenges and then Dessert”

  1. You are my gluten free mommy.

    Love,
    Caroline

  2. Did anyone have a negative blood test and then later pursue a diagnosis?

  3. [...] Nile Virus Contact the Webmaster Link to Article allergies Diagnosis Challenges and then Dessert » Posted at Gluten Free Mommy on [...]

  4. Natalie,
    I’m glad to hear that someone else bugs their family about being tested too! My mom and several of her siblings have ulcerative colitis, but she refuses to mention celiac to her doctor, even though my initial symptoms were identical to hers when she was my age.

    Since my husband and I both are gluten sensitive (neither of us actually got a diagnosis of celiac), we are very hesitant to give our son any wheat. But since our house is 100% gluten free it hasn’t been difficult. We gave the babe oatmeal for a few days, but it seemed to mess up his digestive system so we’ve stopped that for now.

    Caroline,
    My blood test came back negative, so my doctor diagnosed me with IBS. I haven’t pursued any further medical treatment because the gluten free diet completely eliminated my symptoms. I decided that I’d actually rather not have the celiac diagnosis on my medical records since it might make it more difficult to get health and life insurance in the future.

    I hope the gluten free diet goes well for you. It’s definitely an adjustment at first, but you have a great help in your sister!

    Mary Frances

  5. P.S. Thanks for the link, Natalie. I’m hoping to get the egg white lesson up tonight.

  6. Mary Frances- You are welcome. And I too do not want it on my records for health insurance reasons! Great point!

  7. [...] Free Mommy just posted a recipe for Chocolate Marble Bread with Chocolate Ganache and it calls for two beaten egg whites, so head over to her site for some additional egg white [...]

  8. My family thinks I actually want one of them to be diagnosed with celiac to share the misery with me. But I have no misery! I’m healthy and happy as can be. I feel like you do, so I’ll send them your blog to read so they’ll understand more why I’m always saying, “Maybe you have celiac.”

    You asked about our meet-up group in Atlanta. Well, it was my first dinner out with them, but we must have had about 30 people show up. Seems like a thriving group.

    Take care…Kathy

  9. I feel the same way, when I hear symptoms that sound like it could be celiac, I always tell people to get tested..although that isn’t a 100% accurate but that’s another story…

    I feel like I am a pro-celiac supporter trying to recruit members or something..

    Dessert looks great, and good luck Caroline. You have a great support with your sister..and are you the one who made that chocolate cake, lighter than air? If so, you are all set!!! :)

  10. SM- She was the sweetheart who made the lighter than air chocolate cake!

  11. Caroline, I wish but courage, bravery and a dose of humor on your journey into the gluten-free “world”. You CAN do it and you WILL be happy. :)

    I never had the official diagnosis either. My blood work came back negative and I had been diagnosed with IBS years earlier. However, after a neurological episode that has lead doctors to believe I MAY have mulitple sclerosis. I said PHOOIE to gluten. I am still trying to kick the dairy but man it is so hard when I crave it (yes, I know a sign that may be an issue).
    My 2 1/2 year old daughter did get the official diagnosis and that is that. My 6 month old son we will have to wait and see.
    The dessert looks delicious and having it with coffee sounds even better.

  12. Lauren-
    Thanks for the comment! I have not been able to kick dairy either, but I have not really been trying that hard. Once I had been on a gluten free diet for awhile, I did not have the problems with milk I once had.

  13. :) I feel the same way! I’ve been trying hard to get my eldest sister to get tested…she just says “I could never give it up”. I always thought that too…but after getting a glutened a few times since going gluten free – all I have to do is look at it and say “I might as well eat razor blades”. I, too, was one who didn’t need tests to tell me officially I had it. Enough of a positive response. I feel sad for Tums, Immodium and Benedryl no longer getting my money. Oh wait…NO I DON’T !!!!! Glad to see you around posting again. GOOD LUCK CAROLINE! Hope you start feeling better soon!

  14. So, I have been gluten-free for three whole days. =) It has not been too hard, except that I am afraid I might be getting gluten from something I don’t know has gluten in it. I’m trying hard to read everything and I call Natalie since she has done most of the research already.
    I don’t have a lot of the stomach issues… but I have had really horrible joint pain in the evenings and some swelling in my joints at night as well (for about 6 years)… plus ridiculous fatigue and weakness…lactose intolerance, and headaches, especially if I haven’t eaten.
    Did anyone else have joint issues? How long did it take for that to go away once you were on the diet?
    I’ve been tested for like almost every disease… and decided I had to try this because I refuse to believe I have unexplained pain and weakness. Plus the idea of getting my small intestine biopsied seemed scarier than a gluten-free diet as far as the next step went. =)

    One more question! My husband called the Rocky Mountain Chocolate Factory to make sure I could eat my favorite apple (the apple pie apple) and they assured him that this was gluten-free. Does anyone know for sure? yum yum yum

  15. Caroline, my main symptoms were joint pain, swelling, esp in the hands, peripheral nueropathy (tingling in hands), and extreme exhaustion and fatigue, to name a few. I was living like I was ninety years old, instead of a woman in her thirties.

    On the healing route, for me it was like (and still is) a rollercoater, suddenly I felt better after about a month, at 5 I felt great. But there were ups and downs along the way, therefore the rollercoaster analogy.

    Good luck, and if you have any other questions, feel free to email me.

  16. Caroline, I have been GF for 16 months now, and my celiac symptoms sound almost identical to yours ( very few GI issues here either)! It took 6 months of being gluten free to completely eliminate my migraine-like headaches, horrible fatigue and joint pain, and almost a year before I could again tolerate small amounts of dairy.You can do this! Once you get the hang of it, it really isn’t bad!

    I have the offical diagnosis, thanks to the EGD. It was very quick and easy since I was “asleep”. It has been helpful to be able to truly know how my GI was recovering and regenerating, and I was thrilled to know that in July I am back to where I should be- now my focus is on staying that way. It is true you do not need to be diagnosed to be gluten free and healthy- just be patient and pay close attention to your body. Often relief is slow in coming, but worth it.

    I am one of those weird people that actaully like the celiac being on my medical records. It simplifies things when I need a prescription or treatment to have “proof” that it is medically necessary to have GF meds and not have to defend myself and convince a doctor or pharmacist that I need a gluten free alternative.

  17. Karen- That is an excellent point! Thank you! I will probably get tested after I have my children and stop breastfeeding.

  18. yum! looks so good.

    I love the experiment of replacing flours with normal recipes, it makes it like an adventure and most of the time turns out well.

    p.s. congratulations on your new baby!

  19. Liz- Thank you! I love experimenting with baked goods now, but it took me a long time to experiment with them. I had to let go of the original first I guess. Most recipes are as good as the gluten version.

  20. Natalie, I love reading your blog and hearing the updates on your family. My husband and I are thinking of starting our own family soon, and it’s encouraging to hear you doing pregnancy, breastfeeding, and feeding a toddler while being gluten free. So thanks for that!

    My main symptom was dermatitis herpetiformis, and my skin biopsy came back with an unclear diagnosis. That was really frustrating – I wanted to know one way or the other, but I’ve come to accept my celiac and feel much better now that I’ve been GF for almost 3 years!

    Hang in there Caroline. It probably will take a while for you to feel better, but there are way worse things to give up in the world than gluten. Having a family support system is terrific – I have 4 maternal aunts and uncles and two cousins (so far) with celiac, and we’re quite a crowd at the family reunions ;) . People will ask you “how can you stand it? I could never give up wheat,” but they don’t understand how much better our quality of life is without it. Welcome to the club!

    One note, once you’ve gone gluten-free your tests will come back negative since your body is no longer making the antibodies they test for. You really should be eating gluten if/when you plan to be tested :P .

    Looking forward to the next post! :)
    -gluten-free in the OC-

  21. Thanks for the input Kathryn! Having a family support system is really important- especially in that first year! I would not have made it without the support of my family.

  22. a fellow blogger just forwarded my your link – and after reading the first post I have bookmarked you a favorite! I was looking for help on substituting in recipes, and I am not a big baker anyway so it can be intimidating!

    we happened upon a gluten intolerance diagnosis while exploring food allergies – my daughter (11 yrs) is a completely changed child and our doctor is really supportive – she stated she only once diagnosed celiac and it was a textbook case . . . so if we figured this out, then do it and she can always test if ever needed

    since this discovery my husband has also adopted a GF diet

    we have struggled most with hidden gluten, but “luckily” my daughter has the dermatitis so she visibly reacts within 1-3 hours (like the time we learned Taco Del Mar, a restaurant claiming to be gluten free, uses rice coated with gluten so it is non-stick!)

    anyway – rambling in my excitement finding you!

  23. Kel-
    I am so glad you enjoyed my post. I am much happier gluten free. I wish it was easier avoiding hidden gluten. Like your daughter, I have a visible skin reaction- mine is hives. Sometimes I get hives with things that claim to be gluten free and that is when it gets confusing. Thanks for the tip on Taco Del Mar!

  24. I am on a gluten-free diet and I loved the recipe. It is hard to find tasty food without the flour but in the long run it is definitely worth it!

  25. For 30 years I couldn’t eat wheat, and to a lesser extent tomato sauce, some fruit juices, soda and other foods without severe intestinal problems and what seemed to be an autoimmune arthritis pain/burning in my hands and feet with constant fatique. I was tested for everything and told I had a problem digesting a carbohydrate (in addition to lactose) but that is couldn’t be identified. Finally after years of searching books and on line, I found it this year, fructose and fructans. Check out this article. http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/barrettarticle.pdf. By following the “safe” diet I am completely symptom free. The researches speculate that it is a significant cause of IBS as well so perhaps if you have negative celiac results but problems with wheat this could be it. So now I am here looking for a wheat free flour mix recipe that could be used for quick breads, cakes, or cookies. Does anyone have a good one?

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