This is the story of how my kids and I figured out we were gluten intolerant and how it changed our lives.
Stomach cancer and several stomach problems have been a part of my family history for as long as I can remember. More than one grandparent died of a stomach-related disease and even now, an uncle struggles with a very painful stomach ailment. I was diagnosed with IBS in 2008 and opted to stop all dairy. The issues went away but coughing attacks that I had struggled with for years began to worsen.
Doctors said coughing was due to asthma, but rescue meds were never much help during an attack - they did not work instantly. A wise allergist traced the attacks not to asthma, but Vocal Cord Dysfunction (VCD). I was told to practice breathing exercises and relaxing when I had an attack, however after nearly passing out while struggling for air in a pizza place in 2009, I did further research on VCD. I learned through retired nurse, Carol Sidofsky, at http://cantbreathesuspectvcd.com that I may be gluten sensitive. I thought she was nuts, but she was very persistent. I could not imagine giving up wheat! But I did.
I went gluten-free in July of 2010. I did not feel any better but reintroduced gluten after 3 months and immediately I became very ill at my stomach with instant coughing. I opted for gluten-free life.
After more research, I realized that my 10 year old son's symptoms were similar to people with gluten intolerance - He was diagnosed with asthma, he was often lethargic, had a dairy intolerance and poor enamel on his teeth. I started weaning him off of gluten, then during a routine checkup at the doctor's office I had him tested for gluten antibodies. The test came back negative, but knew the test could not be reliable, especially since I had already been eliminating gluten.
My hero, Carol, suggested testing with Enterolab in Dallas - the more accurate stool test (via the magic of mail). I had both my son and 9 year old daughter tested.
Surprising to me, my daughter tested positive for antibodies, my son did not. But again - I had been taking the gluten out of his diet.
Looking back, I see the clear signs for gluten intolerance in my daughter's life too. They were a little different, but stomach problems were the clue. She seemed to get upset tummies and poor stools a lot. Teachers complained about her inattentiveness too, and she suffered asthma. She was also very short.
It was really hard to understand that this could all be linked to wheat, especially since our asthma doctor dismissed the whole concept.
I took both kids completely off of gluten and the results were astounding. Within a week they were both more alert, doing better in school, and even started growing rapidly. I am not kidding. My husband, me and the kids were all shocked. When my kids saw their improvements on the growth charts in just a month, they were 100% behind the diet changed. You couldn't pay them to eat a wheat cookie.
As for asthma, we have made it half way through winter, about six months into this diet, and each child has had a couple of colds, but for first time in their lives, the colds did NOT develop into full blown asthma attacks. Miracle!
As for my coughing, I did have one more coughing attack a few months into the gluten-free diet. But I am now learning that I was contaminating myself thru things like the gluten possible in ridges of pots and pans (Circulon type) Now I have stainless steel - easier to clean), also certain deli meats, broth - those hidden sources. Still, my body is feeling better and I haven't had a coughing attack in... months! So praise God.
Celiac.com - people here are incredible!
Danna Korn's books - life savers!
Children's books for kids with Celiac - totally put my kids at ease: "The Gluten-Free Kid" and "Eating Gluten Free with Emily"
Best advice we have received/lessons learned:
-You don't have to take out a third mortgage to feed your kids. You can learn to shop at regular stores (Danna
Korn's book on Celiac Life)
-M&Ms are OK (thank you God)
-Kids can survive birthday parties and snack days at school with their own gluten-free treats
-Hormel Chili WITH Beans and Fritos are OK (yea! - long live frito pies for moms in a rush to cook!)
-Doctors can be real bone heads. Go with your instinct and own experiences.
-I am not alone.
Thank you celiac.com posters. Thank you Carol Sidofsky!
Gluten-free Life is Better!
July 2011 UPDATE: It's one year since going gluten free and feel great. The kids and I have gotten very used to this diet. We do miss eating out But have a few favorite restaurants that are safe - mainly Pei Wei. Jason's Deli is good too. Some Mexican food places are safe. (NOTE: On the borders chips are NOT SAFE!!!) (my daughter wrote that - I'm not sure if that is true. Something keeps making her sick there, though.)
Biggest disappointment - finding out most fast food taco places have wheat in their taco meat!
November 2011 Update: Kids are now average height as other kids in the classes! No longer being called the shortest kids. They do not want anything to do with gluten. They are thrilled that they feel good and are getting praises from the adults for their increased attentiveness. They also like not having to use the nebulizer anymore for asthma attacks. (2015 Note - we did have to use this at least once a year for very bad colds, but it's nothing like the breathing restrictions we had with gluten.)
My son just got a clean bill of health from the asthma doctor even though he has not been on preventive medicines for a year. My daughter, however, did have some restricted breathing, not bad, but enough that we wanted to put her back on her preventive medicine. She is on a swim team and really pushes herself, so I do not want to take any chances. Still, she's nowhere where she was, which was all night coughing and breathing treatments.
I feel really good and would not eat gluten if you paid me. AND - I have not had a violent, gasping for air, tears streaming down cheeks, coughing attack in months. Maybe a year.
My greatest food discoveries to date:
Betty Crocker Gluten Free Chocolate Chip cookies (which you can crumble and make in to a pie crust with melted butter, I'm told. Must try for Thanksgiving!)
Tostadas - I never bought these before, but now these are a great treat for the kids, especially when their friends are over. We load them with cheese, black beans, heat in oven and put mild hot sauce on the side. These also make great food for school lunches. Not the healthiest meal, mind you, but you can't do turkey and fruit every day!
Spring Rolls - enjoy these more now since going gluten-free. Pei Wei's are great.
Hodgson's Mill's Pizza Crust - not missing any wheat there!
California rolls with REAL crabmeat - it took me awhile to realize that imitation crab meat in most California rolls has wheat. Just ask for the real stuff.
Also - When at Pei Wei, take your unused gluten free soy sauce packets and carry them around with you so you can have them ready at your next sushi stop, since most places do not have the gluten-free soy sauce. It's funny to ask them though and see the confusion.
Hound your relatives to get tested. I've been annoying mine for a year and so far - 5 more confirmed cases. We are breaking the cycle in this family!!!!
The only thing I wish I would have done differently - done the blood test and stool test for gluten intolerance before I went off of gluten completely. Although the tests are not always conclusive, I think it's good to try before you elimiate gluten completely. Especially since once you go off and decide you want the test, you have to reintroduce gluten for like 3 months, and your body will not like that at all. Once body gets rid of it, just a little can be very painful. I'm not doing that. Gluten is history. Not touching it.
April 2012 - Feel great! I breeze through even little allergy or cold symptoms with NO coughing spells like I'm about to pass out. Kids still asthma free - this asthma doctor who was against us on the gluten - link now even says they don't even have asthma!!!! Oh my gosh. (2015 Note - I sent her the link to Nurse Carol's site about VCD, and she now admits there can be a link between wheat and the coughing.)
This wheat is poison to us.
I hope more people discover this link.
I am getting more comfortable with cooking from scratch. The recipe books terrified me, but finally we found one that is perfect - "Recipes for Gluten Free Kids". I mean - it's cooking on a 4th grade level, and it's food kids will eat. And it has pictures!
Here is a FANTASTIC gluten free flour substitute - makes wonderful pancakes, cupcakes, fried chicken, cakes... you are not missing wheat here:
Flour Blend (and if you don't have this- it is SO good for any flour substitute):
1 C. white or brown rice flour
1 C. sorghum flour
1 C tapioca flour
1 C cornstarch
1 C almond or coconut flour
(2015 Note - Some of these flours are very expensive and I don't always have every one on hand. I've learned that whatever I do have - say just sorghum flour - I can add 3 cups/part of that to one cup/part cornstarch, and I can still make a good, quick and affordable meal.)
This is some advice I gave someone asking about what to eat. May be helpful for new people:
For a college guy - here are some quick food tips to get him through:
*Tacos (Fast food tacos have wheat! Most nice restaurants are OK.)
*Baked potatoes (Wendy's, Mcalisters, most delis)
*Hamburgers without the bread
*packaged lunch meat
*Chex cereal (corn, rice, honey nut, cinnamon and chocolate)
*Salads (Skip the croutons. Check the dressings. Ranch is safe.)
*Gluten free bread (Udi's is the best. Homeland and Health food stores)
*Cheese (Thank God)
*Gluten Free crackers (gluten-free aisle at Walmart/Homeland - NutThins)
*Annie's Gluten Free mac and cheese (target, walmart)
*Gluten Free Pizza (Hideaway, but $$$, also gluten-free section at Homeland)
*Rice Noodles (single serving microwave dinners at Walmart - asian section)
*Most chips (Always check. Some have wheat.)
*Did I say nachos?
Some Restaurants with a Gluten Free Menu:
*Carls Junior (Try the low carb burger where they use a big salad leaf for the bun)
*Pei Wei (We eat here a LOT. Ask for the gluten-free menu)
*Jason's Deli (FAVORITE)
*Subway (they don't have a gluten-free menu, but ask for whatever you want without the bun and eat it with a fork)
*If really starving and need food fast - go to any Homeland and get gluten free crackers, cheese and some fruit.
Watch out for hidden sources of wheat:
*Imitation crab meat (ask for real crab meat or salmon in things like Calif. rolls)
*Soy Sauce (can get gluten-free soy sauce at just about any store and in little packets at Pei Wei)
*barbecue - most but not all has some wheat in the flavoring. Just ask any manager and they should know. Or google the question.
*Some deli meats - avoid the grocery deli cut meats since shares a blade with wheat filled meats. crazy I know. But just buy the packaged stuff)
Well - It's year six into the new way of life. We are still well. Gluten free options are springing up in stores and restaurants all around us. It's still too expensive to eat out much. I get tired of cooking all of the time, but all of this had definitely made me a much better cook, and my 12 year old daughter thinks nothing about whipping up a homemade batch of gluten free cookies for Friday night treats. She was even at a friend's house and surprised everyone by making breakfast she and everyone could eat! Hey - when a girl is hungry, you got to do what you got to do.
The biggest reward is -my children are healthy and thriving. I am believing that they will be saved from years of mysterious illnesses, and from the learning challenges and memory issues that I and other people with this issue have suffered. And maybe - they will not even have premature grey hair like me and my relatives!
I do encourage anyone who suspects they are gluten intolerant to at least try going without gluten for three weeks and see how it goes. Or - get the testing, but realize it's not always conclusive.
You can live without gluten. Pretty soon, it will be very instinctive what you can and cannot eat, and any kids involved will likely NOT want gluten again when they see the results of living without it.
So, God bless. Keep seeking answers and don't give up. There are more people like Nurse Carol out there too who can help you through it.