A Little History

It was Labor Day 2002 when my husband and I took a mini vacation and my parents watched Matthew. We returned and Matthew started having diarrhea. We chalked it up to an intestinal virus and moved on. Days turned into weeks and Matthew was still having episodes of diarrhea. Mind you, this isn’t just plain old diarrhea. This is the worst diapers you could imagine – worse than rotavirus!! We were changing him several times a day and sometimes in the middle of the night. His mood was altered and every day was a battle.

I was calling the doctor’s office time and time again. They would prescribe a non-dairy diet and after a week of no change I would call again. Yes, the overacting mother trying to figure out what is wrong with her son.

Call after call........

“Are you sticking with a non-dairy diet?”

“Yes.”

“Just keep it up.”

After weeks of this I finally requested.....no.....demanded to be seen. Yes, throughout this whole ordeal we were never seen just dealing with phone conversations over and over again. Our doctor gave us a referral to Chicago’s Childrens Memorial Hospital with an I’m-sure-they-won’t-find-anything-wrong attitude. I knew Matthew was not right, but my thoughts would contradict:

“Golly, what if I am overreacting? What if this isn’t as serious as I am making it out to be?”

Until we were seen in Chicago, Matthew got progressively worse. He was losing a substantial amount of weight. You could see his collarbone and more!!! His belly was sticking out like a malnourished child and I grieved over his health daily. I had a sense of what parents go through when dealing with a sick child. It’s tortures the family and soul.

After seeing the gastroenterologist at Children’s, we were told to have Matthew’s antibody count screened, allergy tested, and then see what came of that.

His antibody levels were through the roof!!! His body was fighting something, but what? His allergen tests came back negative down the board. What next?

An intestinal biopsy. Ugh, what a hard day that was! I choose to forget that day.

Those results came back positive for CELIAC DISEASE – a lifelong autoimmune disorder that affects the digestive system of the small intestine. When Matthew consumes gluten, a protein found in wheat, rye and barley, his body responds by attacking the small intestine and inhibiting the absorption of nutrients into the body.

Finally...an answer!!! However, it was not accepted with joy. Knowing our son will never eat regular cake with his friends or enjoy restaurant pizza parties forced us to experience a new kind of grief. We left angry and hopeless.

The next day we started Matthew on a gluten free diet. Talk about trial and error!! It took many different products and baked goods to find out what worked with Matthew’s taste buds. Each day got easier and before we knew it, Matthew was gaining weight and acting like any other kid would – bowels and all!!! (sorry) We learned the gluten free diet isn’t as bad as we thought. We felt teaching Matthew to be responsible for his diet was important and to this day he is very good at knowing what not to eat. Takes a load off Steve and I!!!

The Lord helped tremendously. What would I do without the love and guidance of Jesus? There were days when I was down looking at all the foods Matthew could not have, but I look at how healthy Matthew is and I am more thankful that a simple diet change is all it took. He wasn’t battling cancer, paralysis, or a heart defect. He just cannot eat gluten. What’s the big deal??? I haven’t complained since!

Matthew has been gluten free for over five years now. He enjoys many pizza parties with his own pizza provided by me. He attends many birthday parties eating a gluten free cupcake I keep in the freezer. I never make him feel different and I am grateful his friends’ parents do the same. He is involved in normal kids things. Why was I so worried?

Symptoms of celiac disease:

• Recurring abdominal bloating and pain
• Chronic diarrhea/constipation
• Weight loss
• Pale, foul-smelling stool
• Iron-deficiency anemia that does not respond to iron therapy
• Fatigue
• Failure to thrive or short stature
• Pain in the joints
• Tingling numbness in the legs
• Pale sores inside the mouth
• A skin rash called dermatitis herpetiformis (DH)
• Tooth discoloration or loss of enamel
• Unexplained infertility, recurrent miscarriage
• Osteopenia (mild) or osteoporosis (more serious bone density problem)

Obviously I am not saying if you have any of the above symptoms you have celiac disease, but if you do it doesn’t hurt to have an blood screening. Celiac disease affects 1 in 133 Americans and often goes undiagnosed because it is masks itself as another disorder.

Since then we have changed Matthew’s pediatrician and thank God for that since his present doctors will screen Mark every year. It is good to know my doctor is on top of things and on MY side. Is there anything better?

Lesson: Be a proactive parent! Listen to your instincts! If you sense something is wrong, go with your gut no matter what!