Share Your Gluten-Free Story: Meet Paula!

This is a guest post by Paula

I am an almost 31 year old mom of two wonderful boys. My older son is 7 years old and my younger one is 4. I am a scientist in the biotech field by day and an avid cook and mom the rest of the time. My story starts when I was little. I have recollections of horrid pain (now I know it was heartburn) after many a meal, and many other meals spent in the bathroom with horrible stomach aches. And I thought this was normal, I really did. I don’t remember a time that I didn’t feel crappy after eating. But, I didn’t let my stomach issues keep me down, I had a fun childhood with great memories, I was even an avid soccer player (not that good, but I loved it). But, I remember in 7th or 8th grade my knees started killing me, I could barely walk some days. The doctor basically said it was from playing soccer, gave me some exercises to strengthen my inner quads, and tons of ibuprofen. Shortly after, my stomach pain got horribly worse. The doctor attributed it to the ibuprofen, assumed it was an ulcer, and gave me some medication for it….the pain never went away. I quit both the ibuprofen and the ulcer medication and just dealt with it.

High School came and with it Cross Country and Track, I love it, except for the fact that I threw up after every run…not just the races, but every jog, workout, or whatever physical exertion I did, I was sick and could not hide it from anyone. My cross country couch thought I was just pushing myself as hard as possible for every workout, and he affectionately called it ‘The Paula Thing’–how humiliating for me, he didn’t realize it, but it was. At the beginning of almost every workout he’d say, “Now push yourself as hard as you can, it’s not hard enough, unless you do ‘the Paula thing’.” Really!?! Well, with all of the physical exertion came eating a ton, really, I was constantly eating, I could have easily been putting away 4000 calories a day…and I was skinny and sick. My whole high school career, especially my junior and senior years, were spent in and out of doctor offices. When my family doctor decided he had no idea what was wrong (after diagnosing my with GERD, and that medication not helping), he sent me to a Gastroenterologist. You would think this doctor would be able to figure it out, but I spent years on different concoctions of medications to try to alleviate the symptoms with little or no success. My senior year in high school I had to quit the cross country team half way through the season, none of my friends understood, they thought I was just being a wimp, it was a really painful time for me. I spent what time I wasn’t at school or doing homework, sleeping, I was exhausted, my body was exhausted. And this is how I finished my high school career.

College started, and with it, moving away from home and having to take care of myself. Well, that year I was as at rock bottom, I thought. The Gastroenterologist basically gave up on me and diagnosed me with IBS, gave me a bunch of medicines, again, and once again, they didn’t really help. After a year of the medication, I decided it just wasn’t worth it, and quit taking it. I still was suffering, but I just dealt with it. I got used to the stomach aches, and just went on with my life. I still distinctly remember when my husband asked me to marry him…of course, with the whole asking part, but also because I had one of the worst stomach aches of my life. We had gone to Chili’s for dinner that night, shared an Awesome Blossom (which I don’t think they have anymore, but it’s basically a deep fried onion), and I had the Chicken Caesar Pita with fries….why do I remember this? Because it caused that much pain, over 10 years later I still remember it. As my husband was trying to get the courage to ask me to marry him, I was running to the bathroom, again, and again, and again. Poor guy, at least he knew what he was getting into when he asked me, right?

I have had many more of these horrid stomach aches over the years….laying on the floor in fetal position, because I can’t do anything else. And yet, there was no answers. In early 2004, I began having issues with my menstrual cycle, and went to my family doc at the time. A couple years prior to this, my older sister was diagnosed with a prolactinoma, an adenoma on the pituitary gland that excretes prolactin, and I knew that was what was causing my problem…and it was. So, I was treated with bromocryptine to eliminate the tumor and during that treatment became pregnant with my oldest son. With both of my children, I had good pregnancies, other than horrible morning sickness (surprise, surprise). They both arrived early, my older one came 2 weeks early and weighed in at 8lb 3oz and my younger one arrived 3 weeks early and weighed in at 8lb 15oz. They both had jaundice for about 2 months, I was told it was from my breast milk. Their bilirubin levels were never critical, but they were definitely yellow babies. Both of them had torticollis and both had colic…I look back on the colic and realize it was what I was eating, but no one ever told me to cut out the gluten. I think back on my hormone, pregnancy, and nursing issues and I really believe all of those were related to gluten sensitivity.

My older son was diagnosed with generalized anxiety disorder when he was 4, and was put on prozac. He was not functioning at the time, and it broke my heart, the Prozac did help him reach those milestones he was missing, but it did not seem right to have him on such a strong medicine, but we didn’t know what else to do. My younger son was diagnosed with sensory processing disorder (SPD) at just under 12 months. He has major sensitivities to touch, and has gravitational instabilities. He also had chronic constipation, meaning he could not pass a bowel movement without some sort of help. He was on a regular diet of fiber supplements, miralax, and chewable laxatives, as needed. And the doctors told me that was normal….hmm?

In August 2010, I became ill. At first, I thought I might be pregnant. It was that constant blah feeling of morning sickness, that would come in waves, but would never really go away. So, we waited to see, and nope, I wasn’t pregnant, and I was still sick. So, I called my OB/GYN to have him check my prolactin levels, to see if my prolactinoma came back. He checked and also checked my thyroid, wasn’t either of those, so he sent me to my family doctor. The first thing my family doctor said was that it was depression. What!?! Yes, I was probably depressed, but I knew is wasn’t depression. At this point I had been sick for 3 weeks, with no answers, of course, I would sound helpless! He decided to check my gall bladder, as well, since their was tenderness in the area. After an ultrasound and a HIDA scan (which made be horribly sick), results came back that my gall bladder was just fine. By this point I had been sick for nearly a month, and had lost 10 lbs, I really didn’t have 10 lbs to lose, either. My wonderful mother suggested that maybe it was Celiac Disease, the one thing they have never tested me for in all of the years of being sick. At first, I told her there was no way that it was that, bread wasn’t making me sick…and she said, how do you know? It was very profound to me, because I didn’t know, never once had I cut out breads from my diet. So, when the doctor’s staff called to tell me my gall bladder test results were normal, I told them I needed my blood drawn for Celiac, they did it, and it came back negative. But, literally the moment they drew my blood I stopped eating gluten, and an amazing thing happened. Within 24 hours, I felt better, not 100%, but I was significantly better. After removing the gluten, I was also able to determine that dairy was making me sick as well, so I eliminated that and I felt fantastic!

With my diet change, I realized that this could be the root cause to my boys issues. So, I wanted to remove gluten from their diets as well. I decided we needed to know if it was Celiac’s or not, so we went the pediatrian route, with bad results. The results came back normal for both of them. Before I got the results back, it does take a few days to get the results, I took both of them off of gluten (well, mostly my younger son, because my husband really didn’t think anything was wrong with our older one), and there was a huge change in him. The first few days, it was like a drug withdrawal, I kid you not. It was the hardest thing I’ve been through, to not cave in and give him that piece of bread, I was bawling, he was bawling…but, I knew then that the gluten was causing his SPD. After that couple of days, he was a different kid, he smiled…my baby always had a painful look on his face before…and now he was smiling and playing. When the doctor did call back to tell me their results came back normal, she was furious at me for “denying my son nutrients” and that I was a horrible mother for taking gluten away from my son…needless to say, we changed doctors. I had a feeling that my little one was also dairy intolerant, and that my older one was gluten intolerant, so I needed to find a way to prove it to myself and my husband. We ended up going with EnteroLab, they do stool samples, instead of blood samples. Both of my boys carry 2 genes for gluten intolerance, my older son is gluten intolerant, but not Celiac. My younger one is Celiac (by the antibody levels, we never did a scope) and casein intolerant. Once we changed the diets, things in them continued to improve, for a couple of weeks. After about 2 weeks, my little one went downhill again, that’s when we realized we replaced all dairy products with soy…not good. Once we removed the soy from his diet he improved again, and has become that funny, cute kid that I knew was hiding in there behind all the pain.

During all of this diet change, my little one was actually in occupational therapy for his SPD. He was making baby step progression up until his diet change, he then floored his therapist with what he could do. Within weeks, the therapist finally told us not to come back, because there was nothing wrong with him anymore. It was a joyous day, and I made sure the therapist knew it was because we eliminated gluten, casein, and soy from his diet. My older one started seeing a child psychologist right after the diet change and within a couple of months, made enough progress to stop taking the prozac and has been able to cope with his anxiety issues so much better, another happy day!

Because of my realization to my intolerance to gluten and casein, my boys can live healthy fulfilled lives. But not only them. Since we started our diets, my sister and one of her daughters have gone gluten-free and dairy-free and have seen huge changes. I also started a blog (http://freelifeglutenfree.blogspot.com) and have become quite passionate about cooking. Yes, this is a life-changing disease, but it isn’t the end of your life. For me, it’s just the beginning, I can actually enjoy life now, and so can my boys!


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Comments

  1. Mandy Griffith says:

    Thanks for sharing your story. There are a lot of similarities to myself and my story. It is always encouraging to know you are not alone!

  2. Oh gosh, I had to stop when I got to the part about nursing. My 2 boys are both gluten intolerant and I’m nursing my 7 week old twins. All of them have been cranky babies, but today has been a day from hell. And last night I had pasta for dinner and then cereal before bed, and toast this morning with not a whole lot else to cut it.
    My oldest didn’t star being really fussy until he was 10 days old… when my mother-in-law brought me a big pan of bran muffins and I ate them every night as a midnight nursing snack. After a week we learned bran is on the no-no list while nursing, but now I wonder if it wasn’t gluten too.
    As of this moment I am not going to eat any more gluten for a week….
    At least I’ve been on this road with my boys for 6 months so I have some ideas as to what I can eat…

    • Krista,

      Where both of your boys are sensitive and there is gluten issues in your husband’s family, there is definitely a good chance that your girls are having issues, too. It’s definitely worth a shot cutting out the gluten. Good luck!

    • Andrea says:

      Krista,
      I’ll be interested in knowing how things go in the next few days…praying for you!

  3. Thanks so much for sharing your story Paula. I am so sorry that you and your boys had to suffer for so long. I am so glad that you are all doing much better! I hope that these stories can save others from suffering as we did.

  4. Can testing like you did (fecal) provide accurate diagnosis when the child is gkuten free? I fiund cyrex labs and was going to send blood. We are already gluten free though…. thank you for sharing your story!

    • Heather, we chose Enterolab because the fecal test did not require you to be on a gluten-filled diet. The antibodies stay the longest in the digestive system, so we felt it would be accurate enough for us to go that route. There definitely was no way I was going to give my son gluten again, so this route was the route that made the most sense to us. It wasn’t covered by insurance, but it was worth every penny.

  5. It brought tears to my eyes when you talked about
    Your pain, as I always wondered what my daughter
    Was going through- its awful what the doctors
    Will assume- and medicate without being sure
    First! And then more damage is done.
    It took years to find out the ‘whys?’ Why she
    Was going downhill so fast!!!
    Thanks for sharing your story- looking back I ate
    So much fibre, pasta&breads while nursing
    …something I wish I knew then!

  6. stephanie says:

    Curious about the lab testing too. I wonder if our primary doc can do any of this testing or how easily insurance with cover this. Anybody have any advice out there or know what a regular doctor or allergist can do?

    • Stephanie,

      For us our regular doctor was only willing to do a blood test, I was desperate for some real answers and didn’t want to cause anymore harm to my son, so we went with Enterolab and fecal testing because I didn’t have to put him back on a gluten diet to get accurate results. Our testing wasn’t covered by insurance, but it’s something that could be discussed with your doctor or allergist, they may be able to work with you better than mine did.

  7. Kristin says:

    What a beautiful family you have! Thank-you for sharing your story. Such a long, long road to get to where you are today. It brought tears to my eyes, largely because I am able to relate to many of your experiences. I’m certain many others are, as well, and it gives us hope. Thank-you again.

  8. We did Enterolab testing too. Our insurance wouldn’t cover it because it isn’t “peer reviewed”. The gastroenterologist wouldn’t even consider it for the same reason. But it was worth it to me because I knew my son could not have milk or gluten but he still had so many problems and we just couldn’t figure it out. Enterolab testing showed us that he was also sensitive to soy and eggs, and as soon as we pulled those from his diet he was a whole new kid. He went from borderline Asperger’s to perfectly normal. So peer reviewed or not, those results were dead-on!

    That was almost 5 years ago though, so they may have been peer reviewed now, and insurance companies have likely had more requests. If your doctor won’t order it I would just order it and try to get reimbursed, if you have the money for it.

    I’m also looking into other stool testing options for my baby.

  9. I’m so thankful for the Dr. that I have. Since he believes in nutritional healing, he gets right to the heart of the matter from the beginning. On my first visit with him, he ordered a stool test. It picked up so many different things, but most importantly showed the gluten intolerance.

    What a life changing thing it was to go off of the gluten. I was so fatigued and in pain every time I ate before that.

    Now I am trying to figure out which of my 5 children may also have it.

  10. Jennifer Page says:

    Thank you for sharing! I am amazed at the parallels between your story and what my daughter (10) has been going through. We pulled her off gluten and dairy last April but she has still been struggling. We just completed a fructose test and she is fructose intolerant too. After removing fructose too she is remarkably better. Does anyone in your family struggle with fructose? I am trying to discern if she is actually gluten intolerant (we do carry a gluten intolerance gene) or if it is the fructose in the wheat products that is the problem. Do you have any insights? Thank you again for your story!

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