It’s been a while since I’ve penned an article about Celiac Disease &/or gluten sensitivity. I’ve been consumed with things of the writerly tweet-erly ilk. However, I am still completely devoted to a gluten free diet.
I go online and check candy companies to ensure that I don’t ‘accidently’ imbibe gluten with a thoughtless sweet treat. I ignore every single craving for Junior’s cheesecake. And believe me, there have been quite a few this week! I use GF sauces, seasonings, and flours. I limit my eating out to Mexican, Chinese (with LOTS of questions asked!), Indian and Thai (again, with a ton of questions). If the responses I receive back are in any way iffy, I decline and move on to another safe eating establishment, or go home and cook.
I’m still hopelessly bored with food. I cannot seem to shake the ennui and as a result eat the same things over and over because I want to ensure that I don’t become ill. Is this some kind of stage in the process of accepting issues with gluten?! If so, how long does it last? I’m going into my second year of knowing I have a deep-rooted issue with gluten.
Does the confusion/boredom begin to go away once you have a firm diagnosis? I’m still on the road to one. I am right now preparing for a second opinion/consultation with an expert on all things digestive/gluten/Celiac. This new doctor is affiliated with Columbia University’s Celiac Research program.
While I am thankful to my previous doctor for doing the blood work (over and over!) and getting the upper endoscopy done as well as a host of other tests I am glad to go to the next step. I have heard and read about other people’s journeys to their diagnosis and some of them sound horrific. Such as the one where a woman had to do over a dozen endoscopies to get to her diagnosis of Celiac Disease! That is totally inconceivable to me!! However, it shows this woman’s tenacity and determination in getting a diagnosis nailed down securely.
In part, I wonder if my ethnicity has something to do with my particular journey. After reading a peer-reviewed article by the Celiac Disease Center at Columbia University, I see that Celiac in African-Americans can present differently. Additionally, this article showed that diagnosis in African Americans came much later on in life. There is also the matter of the limited amount of biopsiesdone in the United States. Biopsies (done via upper endoscopies) are the ‘final’ factor in the diagnosis of Celiac Disease.
I’m rambling to try and clear my mind but it’s so hard. For years I’ve eaten gluten and for years I’ve had extremely bad allergies, bad digestion, my nutrient levels were all quite low and when I was younger a very bad rash on my extremities. It sounds like Celiac to me. But, it could be something else. However, if not Celiac, then why when I remove gluten my allergies go back to normal where I only need Singular at the height of the season and a box of tissue lasts way more than 2 weeks? (I used to go through a box of tissue practically every day!)
I’ll leave it alone for now and let the new doctor pick up this tangled puzzle. Hopefully, he can help sort through it all and find a reason, and come up with coping mechanisms. Why? Because a ‘cure’ what whatever ails me is way too much for me to hope for!