My Journey to the Gluten Free Diet

I wanted to write this post when I first started my gluten free blog in March of 2007. However, I could not do the post justice at the time, so I began by blogging gluten free recipes. I decided that the longer I put off the post the harder it gets to write, so I suppose I will get started on this post and add pieces here and there as I remember my journey of getting started on the gluten free diet.

I was never a particularly healthy kid. I had pneumonia more than eight times as a child, one bout even requiring hospitalization. I thought that allergies and asthma would follow me around my whole life. In the seventh grade, my body started reacting in an altogether different and more frightening way- I began to get hives and angioedema. The swelling and red welts started one day and just never stopped coming back. My parents took me to several specialists over the years at several military hospitals and none of them could determine what was causing the outbreaks of hives. I was given medications to treat my symptoms but even the drugs could not keep the hives at bay. It seemed the hives came and went as they pleased. The antihistamine drugs they gave me messed with my already tender teenage emotions and made me tired all the time. Can you imagine taking the SAT on powerful antihistamines like Benadryl or Atarax? I suffered through high school never knowing if my lip will swell up in the middle of class or on a date because the drugs didn’t work. The doctors were stumped. My senior year of high school something amazing happened- one of my doctors suggested Zyrtec. They casually mentioned that Zyrtec had in some studies been shown to help with hives. I could not even begin to hope that this drug would help me because nothing had worked. There were still no positive results on my allergy tests- other than dust mites, but according to my doctors that would not cause the urticaria. So I took the Zyrtec and it not only prevented my hives, but would clear them up within 15 minutes after I took one. What was even more amazing was that Zyrtec had even fewer side effects than the other drugs I had been taking.

This “pop a pill” solution worked for a few years until my health took a turn for the worse. At first I blamed college food and then I blamed stress because my dad and both my grandfathers died within just a few years. I continued down this spiral of bad health until shortly after my marriage in 2004. I began getting hives closer and closer to the time I ate. On one occasion, I made a made a homemade chocolate cake and had a very severe immediate allergic reaction to the cake flour. My face swelled up once again and made me almost unrecognizable! At first I was confused at what course of action to take, but I decided that an elimination diet (of sorts) with a food diary might help me. All signs pointed to gluten. I wanted to also get tested for celiac disease immediately, but something stopped me. At that time my husband and I were very concerned about qualifying for health insurance coverage because my husband works for his family’s business. Once we did qualify, we were scared a diagnosis might jeopardize our coverage in the future. I decided I would go on the gluten free diet and see if the hives stopped and my health improved- after all, if a diet was the only remedy, what need was there of a diagnosis? I went on the gluten free diet and my hives stopped. Gradually my stomach problems, headaches, and back pain disappeared too. Five months later I was pregnant!

I know that not all of you have been so lucky. My few hardships pale in comparison to some of the stories my readers have shared with me. Now that I have found the gluten free community and gotten a little more life lived, I feel like I should have pursued a diagnosis (if there was one to be had) because maybe that would have made me a better role model for those of you starting your journey. However, I am a mom now and I feel like it would be negligent to pursue a diagnosis when gluten=hives. If I ingest gluten I get hives and that is not something I can live with for any length of time! I just can’t eat the stuff! In my effort to be responsible for my health, I went and had my allergies tested again last week and nothing new came up, thank goodness! No anemia either!

It took me over a decade to figure out the source of my health problems. I know for many of you, it took even longer. The sense of relief quickly turns to panic as you stumble your way through the first few weeks of the gluten free diet. I was lucky that I was a new wife and not yet a mother when I had to change my diet. Many of you have had to change established routines and traditions for an entire family; I can’t imagine how hard that would be. I am here to reassure you that once you become a seasoned gluten-free cook, no one will mind the diet!

I promise to tell you about my first days trying to live gluten free in a future post!

If you are starting your gluten free journey, you may want to check out the NFCA’s Do I Have Celiac? quiz.

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27 Responses to “My Journey to the Gluten Free Diet”

  1. [...] Read how I found the gluten free diet! [...]

  2. Thank you for this! I always had hives as a child and it was thought that I had lactose issues. Well last year the hives returned with a VENGANCE and it was unbearable. Went to the allergist and of course I’m allergic to pretty much everything so I went on an elimination diet and wheat was the first thing I introduced and low and behold…immediate reaction. I have never had the actual tests either because I stopped eating it and now I feel great. My allergist said hives and gluten intolerance were not normal so I’m really happy to hear that was your experience too!!

    Thanks again.

  3. Lauren- Thank you for commenting! It is comforting to me to find others who went through the same experience. I was SO frustrated at the mystery surrounding chronic urticaria. There is so much we don’t know about it. It frustrates me that so many people NEVER find out the source of their hives. xoxo

  4. [...] READ MY JOURNEY TO THE GLUTEN FREE DIET! [...]

  5. I started having hives during my third pregnancy. I had absolutely no problems before that. At first I blamed it on the pregnancy-skin problems are common when you are pregnant. But it didn’t go away after I gave birth, and instead got worse. On night, being unable to sleep because of all the itching, I googled red welts, knees, elbows. Low and behold, I had the classic symptoms of DH. I didn’t believe it, but went on an elimination diet just in case. When I added back gluten, the itching reappeared after two weeks; when I took it out it disappeared after a month. Now that I have been gluten free for close to a year, I find that I can occassionally (once every 3 months?) have a single gluten challenge that does not cause a reaction. Do you have similar results?

  6. Natalie,

    What a great post!

    I don’t know how you think getting a diagnosis would have made you a better role model than you already are. I really think you went about it the right way. You actually diagnosed yourself, and, most importantly, you kept a food diary so you could specifically determine it was gluten. I can’t think of a better diagnosis than the one you did.

    Just posting this makes you a role model for others who may be experiencing similar symptoms. Or any symptoms, for that matter.

    As I’ve said on my blog you were the first person I found when I went looking for gf blogs so you are a blogging role model for me!

    Thomas

  7. Michelle- I have read that it is common for pregnancy to either bring immune problems in remission or for some women to cause problems to occur- For me, all my health problems go into remission during pregnancy. Even if I accidentally ingest gluten during a pregnancy, I will not get hives (although my body still reacts in other ways). It is very strange, but my doctor explained that a woman’s immune response may be different during pregnancy and cause these problems to go into remission. I am not sure why! In your case, you go months without symptoms and the gluten may or may not cause a reaction- I think this is common with urticaria based on the experiences I have read about- it seems this may be why the root cause is so hard to find. I would try finding a doctor that is experienced/interested in working with urticaria. It seems they are few and far between!

  8. Thomas- Thanks for all the encouragement!!!

  9. Thanks for sharing natalie. Amazing story.

    Hope to visit with you and the boys soon.;-)

  10. Thanks for writing this post. I am learning there is not one “right” way to go in this journey toward good health. We’re all just doing the best we can with the info we have. I am so glad to hear what a noticeable improvement you have had in your health and even though I am sure that is “proof” enough I understand this feeling to be “official” to justify your diet. Keep up the good work!

  11. Natalie, Although my symptoms were always in my stomach, it also took me FOREVER to find out it was gluten. When I was a kid, I thought it was normal for my stomach to feel like it did. I had allergy test, colonoscipy, cat scans etc. all revealing nothing. Then one day I pretty much demanded that the Dr. test me for Celiac, Sure enough, it came back possitive in two days. I don’t think it really matters if you have an “official” diagnoses if you know a gluten free diet works. I think it’s sad that a lot of Dr.s are hesitant to test for celiac. There are a couple of people at my church who are going gluten free on their own because they have ALL the same symptoms I had and they are improving!

    Kimberly
    http://livingfree-kimberly.blogspot.com/

  12. Wow. I can’t imagine having pneumonia 8 times. I got it once, and that was horrible. For me, it was the pneumonia that started all of my health issues, leading to celiac and a few other things. I know that I was lucky in only being ill for a year before diagnosis, but a decade is a very long time. I’m so glad that you are doing well now. =D

  13. I feel so lucky that I was diagnosed on the first try. To that end, I only had hard core symptoms for about 1 year. I thought I had brought back an amoeba from Mexico! I finally told my doc that I thought I had IBS. She decided to test for Celiac. My experience mirror’s Lauren above me, I came back from Mexico and got pneumonia (thought I was going to die – how does one have that 8 times and survive?) and that started the severe symptoms. I had been eating rolaids since I turned 30 and just thought that was part of turning 30!
    I am so happy that the word is getting out and that we are all figuring it out faster!

  14. Hi! I’ve just started coming to your blog recently and I joined your fan group on Facebook too. I’ve just tagged you for a meme. Participate if you’d like :)
    http://niksnacks.blogspot.com/2008/06/me-me-its-all-about-me.html

  15. I had strep throat several times a year, every year from elementary school through my 30′s. In college, I got a rash that was diagnosed as psoriasis, that has been with me ever since. Giving up gluten seems to have nearly cured it. I don’t think it was ever psoriasis.

    I decided to try a gluten free diet to prove to myself that wheat was NOT the culprit in my many health issues. Ha ha! I didn’t believe that a simple grain could make me feel so sick all the time. Wheat showed up on one allergy test, but not others.

    My new lifestyle is still evolving. It’s been a challenge. But I might never have figured anything out without you great gf bloggers! There are traces of my whole life in nearly every “why I eat gluten free” story. Thank you!

  16. I also had strep all the time before going gluten free. I have not had it once since! Yeah!

  17. Great post., and it is great that you shared your story. And, it is true that starting gluten free with young children is hard, that was the path that I had to travel.

    But, it is a shocker no matter which way you slice it!!

    I hope all is well with you.

    Have a great summer!!
    SM

  18. Good for you for sharing your story. There are so many similar to yours. You’ve found a wonderful way to help others, increase awareness, and connect with a lovely (and growing) community. I LOVE this little (big) GF blogging community of ours! Keep it up, Natalie. Great blog!
    Melissa

  19. I didn’t find out about gluten intolerance until I was 54. In the past year, I have had to relearn how to cook for me and my husband. He eats gluten free because I am the cook and I am not cooking two meals every time. I do buy bread, cereal, and cookies for him that I can never eat again, though.

    My symptoms were chronic diarrhea, tingling and numbness in my feet and ankles, pain in my legs so bad that I had to take pain relievers every night before going to bed, migraines, and on and on. All of the symptoms I had cleared up in less than two weeks after I took gluten out of my diet. I am so thankful that I found out when I did.

  20. I actually chose not to have the biopsy because I don’t want to have to declare any pre existing condition, too concerned what it might do to the price of my insurance… so I’m gluten free, healthier at 32 than ever before in my life, and that’s really all that counts!

  21. In searching for glueten free recipes I came across your site. Like those of you that have written I too have had numerous medical problems. The most serious problem I have is with my heart. Whenever I eat glueten or preservatives my pluse drops to 38-40 and my blood pressure also goes down. For two months I have been tracking my food and I have found that when I avoid glueten and preservatives I am fine. One small bite, however, and WHAM!! Doctors, of course, have wanted to do heart surgery; not my first option especially if I can control this with diet! What I do miss however is bread. I have found your recipes and plan to try them. Thanks for being out there and supportive.

  22. Hi Natalie!

    I just came across your website yesterday, a friend recommended it to me. I am interested in reducing my family’s white flour and white sugar intake. I live in Peru and have NO access to the prepared gluten free baking mixes HOWEVER at the health food store I just discovered they have brown rice flour, white rice flour, quinoa, etc. Could you please give me some proportions or ideas of how I can create my own baking mix?

    Thanks,
    Elisa Street

  23. Hi, thanks for the blog. Don’t know if you ever confirmed Celiac with a blood test. But you should for children’s sake since they may have the gene also!

  24. Please do post about your first days going gluten-free. My daughter was just diagnosed with Celiac. Every time I turn around I run into “wheat” and am having a hard knowing how to cook any more. I’m brand new to your blog, but am sure I will become a regular!

  25. My name is logan, i’m 15.
    I love your dessert recipes.
    But i’m having trouble thinking of recipes for dinner.
    I have a ton of food allergies and i can’t seem to find a lot of recipes that avoid those allergies. So if you could help me find some good, easy recipes i’d be very thankful. (:
    Here is a list of my food allergies:
    Corn
    Onion
    Garlic
    Soy
    Tomato
    Wheat
    Malt

    I could really use the help keeping up with a gluten free and all my other allergies diet. So i’d be very thankful for any bit of help. (:

  26. Hi! I just found your blog and recipes and wanted to say hi and thank you. Your recipes are much appreciated. I’m a cook and wife myself. I’m 14 weeks pregnant and have been sick as a dog with what we now know as GERD. I’m not allergic to gluten as you are; however, I read that Gluten agitates GER and makes things worse. It’s been a real struggle these last 7 weeks. Just this week I cut out gluten and sugars (as well as oils, butter, and dairy for now) and felt 100% better! It makes so much sense now. The doctor prescribed me some meds for the acid reflux and indigestion but they still just weren’t cutting it. I made big diet changes and ate tinsy tiny meals .. well snacks… I wouldn’t call them meals. I wish they would have told me that cutting out gluten would make such a difference. Everyone else thought I was just nauseous and eating more carbs would calm my stomach. For me, it just made it worse. I also thought a little soup would help but each time I had soup (canned broth) I’d be sick (I’d regurgitate immediately). So I just thought I would add that it’s not just for people with celiac disease.

    I hope all is well.

    Anita

  27. Natalie,
    I was so happy to stumble on your site today. I have had chronic hives for 7 years now. They began during my second pregnancy, a couple months after being diagnosed with thyroid disease. I too have been on a journey, a very frustrating one at times, to find healing for this awful, unbearable condition. All the allergist did was load me up on anti-histamines. And for almost four years, I was taking 6 pills a day. Until I had a massive hives breakout during my third pregnancy, I just kept taking the pills hoping to keep things at bay. Tired of only treating symptoms, it was at that point that I sought help from a holistic nutritionist. She gave me very helpful suggestions about adding fresh juice and lots of raw food to my diet. I did, and it lessened my symptoms, but did not take them away. I was able to cut back to just a couple of pills a day. I have had a recurrence of hives lately in spite of trying to eat “clean.” Just two weeks ago I met with another nutritionist and she suggested I try a gluten free diet. For two weeks now, I have been removing every source of wheat and gluten that I can. I have felt much better and have had a few small breakouts that only lasted a few hours. But I have to say, that I keep eating gluten hidden in seemingly unlikely places, so I think this is why I have been having these small hives still. I look forward to reading more on your site about how to tackle this major dietary change. If this is the cure, then I can easily do without gluten for the rest of my life. Nothing is so miserable as chronic hives! I would be willing to go on any diet to avoid them! Thank you!

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