Celiac.com 01/16/2020 - So, I've been thinking about this for a while. There are stages to the diagnosis of Celiac disease just like there are stages to grief or healing from alcoholism. Here's how I see it.
The First Stage is Relief
Relief that I finally have a name to go with all of the crazy symptoms that have been happening. Relief that this beast finally has a name. Now I know what has been causing the diarrhea and/or constipation, constant fatigue, and brain fog. Even the doctors know that I'm not crazy now - I was really sick. Ha, ha, sweet revenge. I kept telling them I was sick, but they wouldn't listen. Relief that now there is an enemy to fight and that enemy is gluten!!
The Second Stage is Panic
The Third Stage is Overboard
Now, I've figured out what I can eat and I'm going to be hyper vigilant about being gluten free. Nothing can ever be in the vicinity of my gluten free food.
People eating at the same table as me cannot possibly have bread on the table otherwise I might get sick. I cannot possibly go to a gluten filled bakery. I will die, literally die! I'm also going to tell everyone I'm gluten free and have celiac and cannot possibly ever come to their house because I will die, literally die!
I have to take a bottle of water to a restaurant because I cannot trust them to wash the dishes. If someone had a gluten drink in that glass and they washed it, how can I be sure they got the gluten off. What if they washed it with gluten items? OMG, I will die, literally die if I drink from that glass. I will bring my own bottled water to the restaurant and just sit quietly while you enjoy your plates of gluten filled poison.
The Fourth Stage is Acceptance
I've got this awful disease. I'm going to do the very best I can at a gluten free diet. I will make mistakes, but it will be ok. For the most part, I'm healthy and I have a good grasp of what to do in most social situations. I know where I can eat safely and can
I no longer have to look up every single item I'm buying at the grocery store because I've looked it up 100 times before. I know the item is safe.
I'm confident in my ability to order a gluten free meal at a restaurant and be okay. I know to say that I have a gluten allergy or celiac disease and it is not a choice. I know not to order fried chicken and expect the kitchen to be able to provide me gluten free fried chicken unless it is explicitly marked.
I know for the most part this disease sucks. I know what my body can handle and what it can't. I never purposefully ingest gluten but realize we live in a gluten covered world and I will get glutened. I can calmly and rationally get through the temporary pain to get to the other side. I know that the double edged sword of the gluten free fad diet is temporary. I am grateful that the diet has brought awareness to the disease, but deeply saddened that the need for gluten free food has been cheapened by the fad dieters. I am grateful for spring with the gluten free bonanza of Passover and Aldi in May.
The last stage is Hope. Hope that there is a cure around the corner. Hope that our Celiac children don't have to endure the lack of treatment for Celiac. Hope that we will have a way
shortly to alleviate the symptoms of a minor and maybe major glutening and trust that we aren't doing long term damage to our systems. Or even, the ability to eat freely again without worrying about every morsel of food we put in our mouths. Hope that another generation doesn't have to endure the long and painful process of being diagnosed with Celiac. When the doctors dismiss every symptom as depression or IBS without really looking at me as a whole.
The Really, Final Stage is the "GOOP" Stage
This is where I mistakenly believe, like Gwyneth Paltrow, I invented Celiac disease.
This is a little tongue in cheek! I hope everyone can get to the Hope stage of this disease and not get stuck along the way.