Tuesday, February 20, 2018

How We Found Out Gluten is the Devil

I was a skinny kid, who has since filled out – mostly in the rear (thank you Kim Kardashian for making that fashionable). Matt also is a skinny man, the skinniest, like has to force a pint of Ben and Jerry’s down his throat to gain weight. I’m a saint for listening to his weight-gain troubles. A saint. Because of our own body shapes, for years doctors told us Lexi was just small because we were small. It made sense.


Flash forward to moving back to RI and going to see a new pediatrician. From our first visit the new doc seemed overly concerned with Lexi’s weight. So much so that I actually complained to my mom that she was too focused on it and was going to damage my bright, confident, strong daughter’s self esteem. I’m always very careful not to complain about my body in front of her and stress the importance of being healthy, not skinny and not curvy, because health looks different on everyone (high-five for being PC). I didn’t want her ever to look at herself and see her body as anything but the perfect vessel to carry her on life’s adventures.


But she was getting stomach aches (which she’s always had on and off) and would lay in her bed crying that she couldn’t go to school that day only to make a miraculous recovery two hours later; so I brought her into the doctor. The doc ordered some blood work and me, in my infinite role as Mother of the Year, thought “Good! A couple tubes of blood will cure her of her phantom stomach aches!” and we went over to the lab to have her blood drawn. Later that day her ped called us with the results, she had crazy high immunoglobulin levels in her tTG-IgA (test that measures antibodies that respond gluten) blood work and was testing positive for celiac disease.


Now, for years we rolled our eyes at everything going gluten-free everywhere. We had a few friends who had legit autoimmune issues and had to follow incredibly restrictive diets to weed out potential allergens. I would not wish that frustrating process on anyone, but in a lot of other cases people were jumping on the Gluten-is-the-Devil bandwagon and I was sitting there gnawing on my loaf of french bread wondering why anyone would give it up voluntarily. Karma truly is a biiiotch.


After the initial blood test confirmation we had to go see a pediatric gastroenterologist for further tests and were told NOT to cut gluten from her diet.This was the limbo period. Both the ped and the GI ped were convinced she had celiac because her blood test numbers were sky high but they needed the results from an endoscopy and intestinal biopsy to confirm.


We spent a couple months in limbo before her procedures during which we became gluten gluttons. We ate EVERYTHING and justified it by saying, this may be the last time we can eat cake/pizza/bread/crescent rolls/muffins/donuts/bagels/etc. Let me tell you, this did not help with losing the baby weight but it was soooo good.


We went to Hasbro Children’s Hospital for the procedures and our little girl was such a champ. Not a tear, although she was a little loopy in recovery. Don’t worry we took plenty of pics of her googley eyes, as good parents should. A few days later the results came back and she got the official Celiac diagnosis. Luckily, the GI said her inflammation was not as bad as he expected considering her high blood work numbers so her case isn’t terrible. We still need to avoid all gluten, though.

We’ve had workshops with nutritionists, done a ton of research online and talked to friends who have Celiac Disease. We’ve learned a lot about it, like the fact that Celiac is an autoimmune disease, not a food allergy. That was a new one for us. Also, it’s not just wheat. We have to be on the lookout for other foods also. Lex can no longer have anything with malt, regular oatmeal, barley, soy sauce as well as stuff I’ve never heard of that I now have to check ingredients lists for, like bulgur and seitan.


We’re still learning but there’s a lot to be said for it being such a “trendy” allergy. You can get almost anything gluten-free. We’re now thanking all those people we used to subtly roll our eyes at who claim gluten sensitivity. They’ve pushed the demand for gluten-free products. Pancakes, cookies and pretzels are not a thing of the past like we feared.

Lex is still getting used to not being able to eat the things other kids get to at parties or on field trips but for the most part she’s been a trooper through it all. She knows what to look for on an ingredients list and always lets wait staff know she has Celiac Disease as soon as she sits down at a restaurant. Matt and I have also gone gluten-free in part to support Lex and in part because it is a hereditary condition and neither of us wanted to go through the testing to see who passed it on to Lex (in my opinion, it was Matt and his partners-in-crime, Ben and Jerry).


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