The Celiac Girls Blog Post 1: Finding Out

Well, after 8 years of gluten free learning, it has become official. Official in the sense that I really do have to care. Not that I did not “care” about my husbands diagnosis, but he is an adult. Now I have two little girls that have a gluten allergy that I must pay extra attention to. I must find snack items that they can eat, and

that they LIKE. I must try to make them not feel like they have a “disease” or feel left out. We will call it a “lifestyle change”… not a disease!

My husband has been gluten free for about 15 years. He was diagnosed in his college years after feeling constant GI issues. When I met him, he was still eating items containing gluten. However, his symptoms got worse, and he would spend hours on the toilet with severe… I mean severe abdominal cramping, diarrhea, sweats, and pain. He eventually went gluten free, but not by choice. There are a lot of people who choose to be gluten free, because it a healthier lifestyle. However, he is gluten free because he has Celiac Disease.

Celiac Disease is a serious, genetic, autoimmune disorder. It is triggered by consuming a protein called “gluten”. When a person who has Celiac Disease eats gluten, the protein interferes with the absorption of nutrients from food. The gluten damages a part of the small intestine called “villi”. Damaged villi makes it nearly impossible for the body to absorb nutrients, which in turn can lead to malnutrition, calcium deficits, thyroid problems, and other auto immune diseases.

Fortunately, I have been dealing with a Celiac husband for a while, so I know where to get gluten free items, what to look for, what to cook, how to separate items, how to not cross contaminate, and what items are palatable.

My 9 year old daughter, Grace was having a lot of constipation issues when she was about 3 years old. So we had her tested back then. The test is bloodwork, that is often requested by the family of someone who has Celiac. Or the physician may order it, if it is suspected. The blood test in Canada is not covered by OHIP, therefore is an addition $60 fee for the lab. The Celiac disease blood test measures an antibody in your blood called Tissue Transglutaminase antibody (tTg). Grace’s blood work came back negative, and we had to change her to a high fiber diet.

We never tested the other children because they really were asymptomatic. The oldest son has a different father, so he did not have a need to be tested. My 10 year son, Jimmy, we never thought of testing. I told you about Grace, and the twins were in the 99th percentile for growth, and has never had any GI issues such as constipation.

Until one day, my husband was diagnosed with hemochromatosis. That is a whole other issue that I won’t get into. It is also a hereditary blood disorder, that is way more severe than Celiac. It was mandatory for all of the children to get tested. Since they all were going to have their blood drawn, we opted to have their blood tested for Celiac as well.

Well, everyone was negative for hemochromatosis, but the twins blood work came back positive for tTg. Lauren’s tTg antibody came back severely elevated, and Hillary had moderate elevation. So we were referred to a pediatric gastroenterologist specialist.

The emotions were mixed for me. I was happy they did not have hemochromatosis. I was “OK” with the Celiac diagnoses, because it is very common now a days. It is also a healthier lifestyle. However, I was a little heartbroken that they had to endure this lifestyle change. Mainly the fear of them being centered out, or left out… so our journey begins. The Celiac Girls.

Our referral to the GI specialist would probably take about 3-6 months. They recommended just eating a regular diet until we saw the specialist. Which was fine with me. The last few months of regular soft bread…. I know what that gluten free stuff taste like! However, I do find, and make some pretty good gluten free items! My husband loves sweets, so I make sure I make awesome desserts. In fact, we are about a 60% gluten free household.

Next up, our visit with the GI specialist, more tests, the follow up visit, and gluten free shopping we go! The girls will tell you which gluten free items are good, and which are… you know…

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