Today I am truly horrified and so very sad. I find myself in a bit of shock as I read rants and tirades written today about how those of us who are not Celiac, yet must eat gluten free, are faking it. They are saying we are making the lives of those around us unnecessarily miserable. That we are causing undue work and frustration for people. That we are imagining things and just taking part in a “fad”, as part of our “fake” issues. All of this is based on one single study.
Despite what some are proclaiming as “scientific proof” that there is no such thing as gluten intolerance, I can absolutely assure you that there are people, like me, who are not imagining their agony and pain. Nor are they imagining the positive results experienced by simply removing just gluten from their lives… even if they do NOT test positive for Celiac disease.
I am deeply saddened and disappointed that there are people who, because of one study, are now laughing, pointing fingers, ridiculing and criticizing those of us who have had no choice but to cut gluten (and possibly many other things) out of our lives.
I was miserable, I was in constant agonizing pain that completely affected every single day of my life, and my ability to even do the most basic of things to care for my family. There are many things, in addition to gluten, that have contributed to my various problems, each symptom has now been linked to a fairly specific, distinguishably separate, cause.
The fact of the matter is, gluten was the first thing I removed and cutting that one thing alone out of my diet changed my life. It is the one thing that has been responsible for my stomach and gut pain, swelling, and bloating to a severity few have any clue about. By eliminating gluten, I was able to function again and the pain and bloating lessened within a few weeks.
It’s simple, if I don’t eat gluten, I get to live a normal, relatively pain-free life. If I do eat gluten – even a little bit – I will pay for it, and pay severely.
I do not rant. I do not ever do anything in life to try to draw attention to myself or create conflict, which is why this post is likely to shock anyone who knows me. But I am tired of feeling like I am this horrid person who, by doing what is necessary to be able to function and actually live my life without pain and agony, somehow should feel guilty.
The Reality – Fighting for Answers
I thought there were no answers. I thought I would never ever find out what was wrong with me. I thought I was a freak and would never feel better. I wouldn’t wish that kind of life on anyone… ever! But it was real and it was painful. I have nothing to prove, those who know me well are the only ones who understand and know for a fact what I went through, and I hid as much as I could even from them.
I could not eat. For months I ate hardly anything, and had to force myself to choke down what I could, then endure agonizing pain afterward. At the worst point, I couldn’t even stand to drink anything because I was in so much pain, and adding even liquid just made it worse.
I don’t expect anyone to understand what I went through. I can’t say I even expect people to care. But it was real and I am so tired of feeling like I should feel guilty for that fact, or that people think it’s impossible so I must have been imagining it. Like I should be ashamed and how dare I talk about it.
I know I’m not alone, I just really want to encourage any of you who are struggling and fighting to find answers and no one believes you or has any idea what to say or do, to keep going. It’s a discouraging process to find the source of any issue that doesn’t fit into the select boxes that whatever various doctors happen to understand. It requires time, patience, frustration and totally thinking outside and sometimes completely leaving the box.
I want to encourage you not to give up, don’t give in to the voices that make you feel ashamed, unworthy and unfixable. It makes me so sad that the reality of people’s pain and physical distress is shrugged off, despite obviously seeing that that their every day lives are so completely affected.
My Final Apology
I apologize to anyone that may feel offended by my need to eat gluten free despite not being Celiac. But I will never apologize again because frankly it does NOT affect your life.
You did not live through my pain, you did not endure the emotional agony of not being able to be as present as I would like for all my sons during the worst parts of this. You do not know what I go through to find anything to eat during the day because it is so difficult to make such a huge change when it is NOT by choice.
I do not eat out often. When I do, I order things without the bun or that do not need to be modified at all because I am terrified that I would ever, in a million years, be perceived as needy or high maintenance.
So, to those who feel it necessary to criticize and outright accuse those of us who are gluten free without Celiac… I will ask you to please keep your self-righteous indignation to yourself and stop judging us, or assuming whatever stereotype you possess in your mind about those of us who eat Gluten Free. It would serve you well to understand that we are all different and that one person’s pain may not always be obvious or understandable but it is NO less real.