Sorry my weekly menu plan is going up so late, I was thrown off schedule this weekend by planning for the Gluten Free Super Bowl party I hosted at my house yesterday. I wish I could say I watched some of the game, but a more pressing matter arose when my sister (who was diagnosed with celiac disease in October) broke down over the stress she is feeling while adjusting to the gluten free lifestyle. I can certainly empathize as it took me three years to accept and embrace my own gluten free life.
If I only knew then what I know now…the transition would have gone much, much smoother!
One thing is for sure, we all acclimate at a different pace and there are many factors that can influence the acceptance process. Family support, finances, the type of diet and lifestyle one led before going gluten free and the degree of suffering one experiences when consuming gluten are four big determining factors of how quickly a person moves through the stages of grief over the loss of gluten process.
For me, the lack of digestive issues and my on-the-go lifestyle – as well my naturally stubborn personality – were all major hurdles I had to jump on the road to gluten free acceptance. It did not happen overnight; I’m not sure it happens that way for anyone.
I am so grateful that we discovered my children’s food intolerances at such a young age, because they will never know a different world. They will have to adjust (and are adjusting) to be sure, but in terms of the expectations they have for their lives, they will know in advance that they will have to live a very different lifestyle. For those of us who were diagnosed later in life, the shattered dreams can be difficult to replace. It’s not easy to accept that the life you imagined for yourself is not going to be the life that you lead, and this can be especially difficult when there are other people in your life who have come to have the same expectations. It’s bad enough that you have to make radical changes for yourself; the guilt that comes with needing others to accept those changes can be overwhelming.
If you are newly diagnosed or if you are struggling to adjust to your new gluten-free lifestyle, I can assure you that I know where you are. And in a very spiritual sense, you were there with me on my long and arduous journey of personal acceptance. You were there with me when I was convinced that I could not have Celiac Disease because I showed no overt symptoms. You were there with me when I tried to rationalize letting my family continue to eat the most atrocious “food” on the planet while I held my nose to eat a rice cake. You felt my pain when the slowly tightening noose of social acceptance choked off all hope of a “normal” carefree life. On our trip to Lego Land, when every decision and side trip had to be planned around what we could eat and at what potential cost, you were there. You felt the unbelievably slow acceptance from my family that I had an “actual” medical condition that required a special diet.
You were there with me in spirit, whether you knew it or not. And I am with you now! I know exactly where you are, even though you feel the sense of desperation, the “wake-you-up-at-3 am” feeling of “what am I going to do now?” I have seen the upturned noses from your husband and children at your first attempt at creating gluten-free fried chicken (or whatever). I know the pain you feel while others devour those very special Thanksgiving Day rolls while you eat gravy-less turkey and plain green beans. And I know that this is the potential future that you now fear with all of your heart and soul, a lifeless, tasteless, thankless life of complete exclusion, expense, and frustration. Oh yes, how I know where you are!
I have dedicated the month of February on this blog (for the most part) to helping you understand there is a way “out” of this unhappy place that you find yourself. I started this blog two and a half years ago for me, for my own sanity. I needed an outlet, a place where I could share my frustrations and successes, find new ideas, and capitalize on the successes of others. I have spent countless hours (and dollars) trying to find food ideas that work for both me and my family, slowly learning to overcome the limitations that come with convenient food. While I was a pretty good cook before my diagnosis, I have had to learn to cook all over again (and again and again), using foreign ingredients and throwing fits over my many failures. It has been a long road for me and my family, but we are now on the other side and are sooooo much better for it. Heck, I’ll go ahead and say it. I’m MUCH happier today than I have ever been in my life!
The gluten-free lifestyle is a marathon, not a sprint. My blog (and many others) are loaded with recipe creations that are “free” of so many common ingredients other than gluten. But I understand that every marathon begins with the first steps, so I am bringing back the dairy, sugar, corn, soy, processed, etc. for a short time while I take a stroll down memory lane and re-walk this path with you. I will be sharing recipes that are “just” gluten-free and are relatively easy/inexpensive to make, foods that your whole family will love. The goal is to get you (and your family) on a strict gluten-free diet and loving it (because if you have celiac disease, including all of the healthy fruits, vegetables, allergen-free, refined sugar-free, organic, all-natural, non-GMO, etc., etc. foods in your diet will do you no good if you still feel compelled to cheat every once in a while…we have to heal and protect those precious nutrient-absorbing villi!).
You CANNOT have “just a little” gluten here and there, so let’s go gluten-free first, and once you start feeling 1,000% better, we can go from there.
I love you Gretchen and I promise that everything is going to be a-okay! I will hold your hand, be your shoulder to cry on, the Lucy to your Ethel, the Thelma to your Louise and the coach who picks you up when you’re tired and can’t go one more play. We will do this TOGETHER. xoxo
Weekly Menu Plan: Naturally Gluten Free, Grain Free, Dairy Free, Egg-Free and Soy-Free
Monday: Skillet Chicken and Salad
Tuesday: Roasted Shrimp and Green Beans and Salad
Wednesday: Lamb Chops with Balsamic Reduction (I’ll simply omit the butter), Baked Sweet Potatoes and Roasted Broccoli
Thursday: Grilled Chicken Caesar Salad
Friday: Spaghetti Squash with Tomato Cream and Sausage Sauce and Salad
Saturday: Lemon Rosemary Pork, Sauteed Zucchini and Swiss Chard with Braised Leeks and Garlic (I’ll omit the goat cheese)
Sunday: Spicy Grilled Tuna Salad with Warm Bacon Dressing (I’ll omit the hard boiled egg)
A Few “Just” Gluten Free Recipe Ideas
Stir-Fried Thai Chicken with Peppers
Spaghetti with Crockpot Turkey Bolognese Pasta Sauce
BBQ Pork for Sandwiches (my mother-in-law LOVES the Canyon Bakehouse Hamburger Buns)
Some of the topics that came up on my Facebook page for this month of Gluten Free 101 included breakfast ideas, kid-friendly meals, lunchbox ideas, traveling, setting up a gluten-free kitchen (and many others). I also thought I would share the fascinating blood tests and endoscopy photos that led to my own diagnosis in 2005 (anyone up for comparing villi? LOL!).
Are there any other topics you would like to discuss?
And welcome to my blog!
Whether you're here looking for advice on how to go gluten free (with delicious kid-approved recipes of course!), or to read some of the latest medical research on celiac disease and non-celiac gluten sensitivity...or even to read about one woman's rise from the depths of gluten-free despair to a place of downright enthusiasm, it makes no matter. The point is, you are here now so let's have some fun!
I agree with you. It will really save a lot of "heartache" if all our food intolerances are discovered at an early age. It will definitely be hard to accept the idea that you cannot eat something that has been part of your regular diet for years.
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Gretchen is SO lucky to have such a caring, supportive sister like you, Heidi. I hope your sister realizes her feelings are very common and it is a process of acceptance. It does get better.
I was diagnosed just a month or so before my sister. I diagnosed myself, asking my dr for the blood test which was positive, and then suggested to my sister she have the test which was positive. It's been about a year now. I can say that having an advocate that totally understands the feelings of grief, deprivation, and other issues over food is wonderful. We have become so close and laugh at some of the antics of "wheat eaters" that totally don't understand us and are insenitive to our burden trying to function in a food oriented society. I read the grief steps above and I am finally at the last step where I feel lucky that I am eating the way I always wanted to but didn't have the will power. I feel sorry for people that have the option to eat badly, do it, and then feel bad about themselves. I am finally feeling that my body is a temple and by treating it right I get the just rewards of good health and vitality. I would not choose this condition but I have tried to make the most of it. I am thankful for my best girlfriend, my sister.
I will say with experience that the grieving process does get much easier. I was diagnosed with CD In 2001. What is so sad Is that I had been going to doctors for over 15 years With these Hideous life-changing symptoms Being told I was just depressed and get my life together . As a result The damage was devastating to my whole body . When diagnosed the doctor who caught it said Just stop eating gluten and it will all go away. How wrong he was! I had to have most of my small Bowel removed in 2004 . I’m still in very poor health even though or I am very careful with my diet. I was also a very good cook. We ate healthy as a child and had ” Organic vegetables” And raw Milk butter and eggs. I feel we have all been so victimized with our food over the last five decades And most of it was not known until recently. How did this chain start? No one in my family ever heard of celiac Or had any such symptoms. I’m 58 And my daughter is 35. She has been diagnosed with celiac and Crohn’s disease also recently . The worst part is no energy to cook. I’m learning about fermented foods now And always hoping to gain back some measure of health. Thank you for your blog. It gives me inspiration to go on.
Heidi, as always I simply love your honesty and how upfront you are both about the struggle in general to go glutenfree and to share your own pain. Thank you for your honest, forthright posts. Good luck and hugs to Gretchen as well!
Its my 4 yr old who is our celiac. She deals well and it breaks my heart some of the time…this was a very heartfelt and moving post. Thank you
I desperately need this! Back in 2008 I was gf for about 6 months before the doctor finally suggested I get tested for CD. Both the blood test and biopsy were negative. Hearing the negative results triggered something in my brain (even though I knew better) and I started eating gluten filled foods once or twice a week. Needless to say, I have a bit of an addiction and can't have a "taste" without going overboard. I have a multitude of physical symptoms and still can't seem to keep myself away from the poison. Sad news is, Dr. Fassano says they don't know how long it takes for the damage to reappear after being gluten free, so I may never have a positive test result. He said it could be 10 years (or more!) of eating 3 sandwiches a day before the test would show up positive, they just don't know for sure. I had another blood test done around Christmas 2011…negative again. My husband is not remotely on board and it's hard to feed my kids (ages 5 and 4) when they won't eat anything I cook. I find myself settling on a sandwich or going for fast food…both of which leave me in horrible pain (physically and emotionally). I'm so frustrated!
I have to be honest. I think I cried the whole time I read this post! I am so relieved that I have found your blog. I am very, very new to the non-gluten lifestyle. My family is supportive, but struggling with the adjustment as much as I am! It has been extremely hard, confusing and expensive to make the switch. Thank you in advance for all your help!xo
Adjustment is hard but like you say early detection is best as you can't miss what you have never had!
Your sister is lucky to have you to turn to for help / advice and it will help make her adjustment easier in the long term.
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Why on earth do I find myself crying? Well written! Great idea to spend February getting back to basics.
I have only been gluten free since the beginning of Dec 2011 and now dairy free since Jan 2012. So it is all still new and reading your post hit home for me. I have good days where I am creative and willing to try new food, and then I have days where I would do just about anything for a simple grilled cheese. It is expensive, it is frustrating, it is hard for others to adjust, and it is never going to go away. I thank you and others with blogs for being honest and for leading the way. It is what gets us newbies through the first months.
We all need to "get counted" as a community that needs NUTRITIONAL ASSESSMENTS , covered by insurance, just like diabetics? There must be a vehicle to become a recognized disease that food alone will heal. Every professional, dr's receptionist and even my Pediatric Gastro-doc says:" Just go gluten free forever. You'll heal in 6 months". Not so fast. The gut is damaged and must be healed by the right carbs, proteins and fiber and waters, in a succession.
We went GF the day after my daughter's positve biopsy; only to continue to feed her deadly dairy and dibilitating Nightshades for 4 weeks. I am loath to see a dermatologist again, as he wants to give her oral-antibiotics! Another 4 weeks of first-ever stomach, joint and muscle pain and I discovered the GAPS diet, online. It has worked magic for my 13 year old. It is a shame that a Moms, like me, must learn EVERYTHING there is to know about nutrition and absorption and gut health , using our children as guinew-pig patients. I am a good cook & we always had nice, balanced meals, but this is NOT a disease to try to address as a layperson. We are growing in numbers and should have the health care to save/ improve our childrens futures. Italians are tested before the age of 6. Americans are prsumed to be psycho with the un-related symtoms of Celiacs. My daughter showed total fatigue on Sept 27, 2011. She is still out of school.
It is getting better, but the bad advice from professionals makes me know that they need to know more about Celiacs. First do no harm, right?
It was inspiring to read this post. I was diagnosed a day before Christmas eve that my blood test came back
Positive for celiac. I have had stomach issues since I was 7 years old. My dear mother did everything she could think of including every medical procedure that was suggested by doctors. I am 32 now, & after all these years of suffering I adjust now finding out. I always summed up my issues as to a “bad belly” and learned to deal with the pain & all the other symptoms that I now realize go hand in hand with celiac.
2 weeks ago I did a biopsy & it was confirmed i am celiac. I guess I have been in denial since the blood work. Even though celiac and the research I have done thus far makes perfect sense as to why I have had this suffering my whole life, I can’t grasp it for some reason. I am reaching out because I feel in complete despair. I come from an Italian family & they are all having a hard time understanding this & how serious it is. They think I am Making it up somehow. I have not started gluten free yet…I just found out the news this week. It was reassuring to hear that I’m not the only person who struggles with the switch over. I keep telling myself that I will go gluten free in a couple days. I keep giving excuses, even though I know i need to switch immediately. I want to be around for my children! Has anyone else also faced the fear that once going gluten free weight will start to pile on? I know that being thin with celiac and eating gluten is common. I am terrified that I will put on weight as well! This site i have found today has been a great resource. Besides twitter, is there a forum to help those with celiac disease? Support? Also, since hereditary, do celiacs need to get there children blood tested and biopsy if positive?
Any answers would be so helpful. I’m not really sure how or where to start on this journey