OAMM Staffer Lisa, was diagnosed with Celiac Disease in September of 2013. As part of Celiac Awareness Month, she’s continuing her series to help others with their journeys.
As a parent, your biggest fears are being unable to control things with your child. After my Celiac diagnosis, my first thoughts went to my children. Studies show that if you have a 1st degree relative with Celiac disease, your risk goes from 1 in 100 to 1 in 22. Fears for my children wreak havoc on my heart. Could I pass this disease onto them? Will they suffer the same as I have? Will they be bullied for their unusual eating habits? Do schools even take this allergy seriously? Will family and friends realize that this is not something they can cheat around? I have not yet had my children tested. I know I should, I really know I should. However with no signs or symptoms presenting themselves, it’s not as pressing. Many of you do not have the luxury of letting your children cruise through and assume things are fine.
Fear and Frustration
It all started almost two years ago. My then 5 year old daughter woke up sobbing, doubled over with stomach pain. The cramps would come and go and I held my daughter helpless to make it go away. This was the standard routine for nearly two weeks. When we went into the pediatrician, they told me she was constipated. Their solution was to give her a laxative twice a day for 4-6 weeks. Not quite what I was hoping for, but I gave her one dose of the laxative which made her so sick that she couldn’t leave the bathroom. I stopped that immediately, but the stomach pains, chronic vomiting, alternating constipation and diarrhea continued. We took two trips to the ER where the same diagnosis, or lack of, was given. I was lost and frustrated!
Going Paleo was a family affair
During this time our family had started transitioning to a Paleo lifestyle. However, I would send a sandwich in her lunch from time to time, or we would eat pasta or bread outside of our home. I started to notice when my daughter ate bread or pasta she would be up most of the night. I started researching gluten sensitivity and celiac disease. I made another appointment to see the doctor and demanded a Celiac test. They ran the test but it came back negative for celiac- they told me she could “keep eating gluten.” I was deflated. I just had that mother’s intuition, gluten was her problem. I started her on a gluten free diet and the stomach pains got better.
Cycle begins again
Fast forward several months to the Holidays where we got pretty relaxed with her gluten free diet. The stomach pains came back slowly and I noticed some new symptoms. During our home school day, she would have a hard time completing simple work, staying on task for more than a few minutes, and was often emotional for no apparent reason. She would also get extremely itchy on her back and legs. I decided to go back to monitoring her diet and keeping as gluten free as possible. The stomach pains got better, the itching improved and our school day was more productive. I say her symptoms got better but didn’t completely go away. Watching my daughter improve on a gluten restricted diet, researching celiac disease and gluten intolerance, researching to exhaustion, it became my mission to get real answers. After talking to a friend who had found out two of her children had Celiac and one had Non-Celiac Gluten Sensitivity, I found a medical provider who used the same laboratory with the tests she recommended. It was such a breath of fresh air when I called to make the appointment and the doctor agreed Raegan indeed may have a gluten issue. At last I had hope.
Finally a resolution
Smiling again!
As we suspected Raegan does have a sensitivity to gluten. She is not Celiac, but she does have an innate immune response to gluten. The official diagnosis is Non-Celiac Gluten Sensitivity. It is very serious and she can never eat gluten again. The reason her symptoms got better but still lurked is because she also has additional sensitivities to dairy and most grains. This includes many of the alternative grains found in convenient gluten free foods. Which is deflating because with two other girls running around and me working, those grab and go’s are so simple many days! We were excited to finally have a diagnosis! And then the fear set in. How do I protect her from this in my own home, at school, in restaurants? I went to the bathroom after a trip to the grocery store and cried. The first time we ate out, I broke out into a cold sweat and had anxiety about cross contamination and her getting sick. It’s not easy by any means. But she’s worth every minute of this battle and we will tame it! I have started to take new stock of things in our home. What can we do as an entire family to make Raegan feel good about who she is and supported 100%? We added to our arsenal of cookbooks with recipes that support our variety of needs. We started to take more time to fill the freezer, pantry and fridge with good foods for all of us. We have talked with family and friends that this is no longer an issue that has “cheat” times. We have even discussed throwing Raegan a Gluten Free Party! Where she can take some time to celebrate the good things she CAN have. Where she can feel proud with her new diagnosis and share what she’s learning about foods with her friends.
Raegan’s go to books for her meal planning and fun treats!
Be A Momma Bear Advocate!
For those struggling to make sense of your child’s behavior or chronic digestive issues I encourage you to keep searching. Trust your mom instincts. If you have tried to get answers and your doctor was unsupportive or you don’t feel like you got accurate tests, find another doctor. I know it’s hard to make that switch but your heart knows best. As moms and dads we know our children better than anyone and we have to be their advocate- their health depends on it. And in the meantime look for great recipes like here at OAMM to show your kiddo that Gluten Free isn’t boring. Like Gluten Free Pop Tarts or our family favorites Chicken Nuggets with Chocolate Chip Cookie Cake for dessert! If you have additional questions, please comment below or feel free to email us as well. We want to help you! *This post contains affiliate links.
6 Comments
Join the discussionThank you for this story. I know my son has a gluten sensitivity and his blood work wasn’t deep enough to show it. His autistic like symptoms have all but diminished and he doesn’t need tums to halp calm his belly all of the time. I am happy to read that I am not alone in trusting my instincts. My hubby watched as I eliminated gluten and he too saw the change. It is real and it can be hard to get answers. Thank you again for sharing your story.
This hits home for me! My son was 3 days old when we saw our family doctor for constipation and got rushed to the local children’s hospital. My son had a bowel movement after he was born, but that was the only one. his stomach was distended and he was screaming in pain. They feared he had hirschsprung’s disease. After contrast dye xrays and biopsy of his intestine, they told us he didn’t have hirschsprungs and was just constipated and to dose him with a laxative everyday. I was breast feeding so we started restricting my diet but I didn’t know anything about Gluten at the time. We had to do dairy-free for 30 days and nothing was helping, not the laxative, no home remedies, nothing. I spent my days and nights rocking a baby with a head pack on his stomach that screamed in pain non stop. his bowel movements were few and far between. It was terrible. I gave up breast feeding to try every kind of formula that didn’t help either. One day I stumbled on a gluten sensitivity article and was shocked to realized that was my son to a T! even symptoms I hadn’t related to the constipation. We immediately took him off all gluten and were amazed and how quickly we saw a difference! He now has no constipation and doesn’t live off of laxatives, no stomach pain. His doctor hasn’t tested him for Celiac yet just because this is working no matter what the test says, why waste the time to test given no matter what the results we won’t be giving him gluten again. This was such a relief for me, to find a solution to his problems after all the nights of crying and screaming and not being able to help him. He is 4 now and so good about his special diet.
I was wondering if you were able to get your insurance to reimburse you for the Cyrex testing?
thank you so much for your article… we found out last summer that our 6 year old son tested positive to Wheat allergy… along with apples, carrots, and peanuts… and this kid used to live on PB&J sandwiches with peanut butter and apples and a side of carrots and ranch! For an already picky kid, I was in tears in what to feed him… many people – especially my husband’s family – just don’t understand what gluten is and how J can’t have it, so we have to bring our own food to family gatherings. Going on vacations has been a challenge, too… trying to find restaurants that have a gluten free menu. I’m so thankful to OAMM to publish so many recipes that are gluten free… you have saved my sanity! A year later, my son is an inspiration… it has been hard to be around kids as they eat pizza and cookies… and he will ask if it has gluten in it and then say, “sorry, I can’t have that, I’m allergic”… slowly we are educating out homeschool group that they will have an alternative food item that he can have.
We’re going through something similar with our five year old. The dr tested her for celiac and when it came back neg. that was it. They didn’t care to dig further. Well be searching for a new pediatrician, in the meantime we’d managed to keep our girl gluten free for some time, then she was accidentally given something with gluten and her symptoms returned the very next morning. So we’re fairly positive it’s gluten, I just wish we had for sure answers. Thanks for sharing your story, it’s given me some hope!
Good job, Momma! You have to be your child’s advocate and it sounds like you are knocking it out of the park! Hoping you get some answers!