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It’s Story Time Day #15 Bryan’s Story

Posted May 15 2012 10:00am

This story was written last fall .  It was written at the time to share with you about sometimes you have to go a step further than the gluten free diet to get your healing.  This time I am posting it to share with you Bryan's gluten free  story.  Today is a special, and very important day for Bryan.  He is starting chemotherapy as he is preparing for a bone marrow transplant to treat PNP, or "bubble boy disease."  Please join with me in praying for this special little boy.  His mom and I got to know each other really well while planning the Gluten Free Expo in Birmingham.  This family is amazing.  He had his central line placed yesterday and starts chemo today.  This is a long, scary, unknown road for this family.  Please lift them all up in the next coming weeks. 

I wanted to also share with you a link where you can bless this family financially.  There medical bills are expected to reach over $100,000.  You can follow Bryan's journey here as well as donate. 

There will be a Baron's Baseball Game  on Tuesday, May 29, 2012 at 7:00pm. at Regions Park in Birmingham, where proceeds will go toward Bryan's medical expenses.  You can get 5 tickets for $25.00.  You must purchase them in advance and can do so by contacting me .  I will send you the contact information in a private email. 

This is actually my first post about my son, Bryan. Our 3 year journey with him is filled with so much…blessings, heartbreaks, trials and triumphs, worry and hope…I most often have a hard time processing it all and the thought of having to dredge all this up brings me to tears nearly every time. However, on September 9th, I knew the time had come for me to speak out. While shopping for birthday party items for my eldest son’s party, Bryan literally laid down on the grocery store’s floors, four times, telling me he hurt too much to walk. Determined, as always, to “do it myself,” Bryan insisted on walking and refused to be seated in the cart. “Why is this happening, God?” “I am trying to do everything right!” He did not cry but looked at me with that sense of pleading in his eyes, asking me to make his pain go away. I hit my breaking point.

Just two months prior to this, my husband and I thought we finally found the holy grail for Bryan. After years of neurologists, therapists, and many other doctors’ visits, I decided to have him tested for gluten intolerance. BINGO. Two weeks later, living gluten free, Bryan’s improvement was remarkable. His tremors stopped. His pupils were equal again. His stools were normal for the first time in his life. We were able to start weaning him off of the Prilosec. His color improved and the dark circles under his eyes diminished. His energy levels remained steady. He had a growth spurt!  His low tone did continue and he still had problems with balance, but we were just grateful for the improvements we did see thus far.

What happened between June and September?

In mid July, Bryan developed an ear infection from some pool water. Within one day of oral antibiotics, all of his old symptoms returned and gradually got worse. I thought I made sure his medication was gluten free, so at first I suspected he had an accidental ingestion from contaminated food. As the symptoms worsened, there were only two days left in the antibiotics, so I decided to finish it out. Within one full day of completing the medicine, Bryan improved noticeably. Unfortunately, the improvement never met the same level of health as before. His neurological symptoms were better but not the gastrointestinal symptoms. The reflux returned with a vengeance as well as the smelly, loose diapers (Bryan is not yet potty trained because he is too weak at this point). His newly gained healthy glow was also lost.

I knew that healing from the onslaught of the antibiotic on his gut would take time, so I faithfully led our home into the joys of gluten free eating. I relished the challenge of coming up with the best gluten free bread, and we all enjoyed the variety of gluten free foods I made or purchased. But, Bryan still did not get better.

On September 6th,  I accidentally damaged Bryan’s healing gut even further. In order to give Bryan a gluten free and high protein meal, I cooked him red lentils with brown rice. I did not know I was supposed to soak the lentils overnight and then rinse them before cooking. The lectins in the lentils literally made Bryan so sick, he woke up in the middle of the night with vomitting, diarrhea and complaints of pain. The diarrhea, which was thick with mucus, continued for almost 2 weeks. On September 9th, as described above, Bryan started to have severe pain in his legs and joints. We worked so hard to see him finally walk, and now I felt as if I had destroyed it. The guilt was overwhelming for me but I knew I could not stay in that place. So, what does God often lead me to do when I am in despair over Bryan’s health? I research.

For now, I will summarize for you what this research taught me in the past couple of months. I came across an article about how doctors in the early 20th century CURED Celiac disease in children with something called the Banana Diet.  This discovery then led me to the Specific Carbohydrate Diet and then, it’s modern twist, The GAPS Diet, which Bryan is on right now.

We are living beyond gluten free right now. In fact, we are grain-free, lactose-free, refined sugar-free. As Bryan’s gut heals, there will be a day when we can actually move back up to a gluten free lifestyle. This time, however, I will be more careful with the amount of grains we consume. Starches are hard on digestion, and careful digestive health is paramount for anyone with gluten sensitivity. I never thought I would become so enthusiastic about making my own yogurt, cream cheese, whey, sauerkraut, and ghee butter! I am now passionate about probiotics, enzymes, and homemade soups.

 

This story was written by Christine, owner of Birmingham Kids and Family Magazine

If you have a story you would like to share about your journey gluten free and how it could help others, please contact me.

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