Being Gluten-Free isn’t easy. Sure, its gotten easier, and I happen to live in an area of the country that’s very ‘hip’ to a gluten free lifestyle, however it isn’t a walk in the park….by any stretch. My journey has been long. Filled with lots of pain (literally), lots of tears, thousands of dollars in medical bills the insurance company refused to pay and numerous doctors telling me they have ‘no idea’ what’s wrong with me.
A few weeks ago I read an article in NY Magazine about actress Jennifer Esposito and her struggle with this as well. Yesterday I went on her website and read her story. I was almost in tears. SOMEONE gets it!!!! Jennifer went through a lot of the same symptoms as I did – and was finally diagnosed with Celiac Disease. Unfortunately, my journey has not been as cut and dry…..
Ever since I can remember, I have had stomach problems. In elementary school my parents used to poke fun at me for always ‘hanging out’ with the school nurse. While there was a part of me that was SO bored with school and didn’t want to sit in class, about 70% of the time I was actually having stomach pains.
I went through high school and college with much of the same pain, but there didn’t seem to be a solution….so I considered it to be a normal part of my life. After graduating from college I started working in NYC. A year or two into my career I found myself in a job that was extremely stressful, high pressure and I was always waiting around to get screamed at for no reason. I stayed almost 4 months and mentally broke down. I quit and decided to take the summer off. After this, my symptoms went downhill fast. Not only did I have stomach pains, but dizziness, fatigue, severe bloating, depression, terrible anxiety and constant random body pains.
That summer my neighbor had lost her nanny. She had 3 little girls (who I had babysat as infants) and were now around the ages of 10,11 and 12. She approached me and asked if I would watch her girls for the summer and basically sit by the pool. Of course I would. On our first sit down, she explained to me that her middle child had Celiac disease and was on a strict gluten-free diet. We went over exactly how to prepare her food, what she could / could not eat and cross contamination issues in the kitchen. After a while, I got into a routine with her and it was easy as pie. As I became closer to her, I began to ask her what her symptoms were. It seemed I had alot more in common with this 11 year old than I originally thought. I made the decision to try her diet myself, since I was already preparing her food anyway. After following her diet that summer….I never went back to gluten again.
Let me say on record, I am kicking myself for self diagnosing. After I went gluten free (for many months) I decided to see if I could get a real diagnosis. I wanted to know if I actually had Celiac Disease (an auto immune disease) or if it was just gluten intolerance. I had multiple blood tests done as well as an upper endoscopy, allergy tests and a genetic test. The blood tests came back inconclusive and the upper endoscopy came back clean (typically someone with celiac will have lesions). The allergy tests proved I was allergic to other things and the genetic test proved I carried the gene for Celiac. However, since I had stopped eating gluten – there was no damage to my system. I had healed….for the most part.
Over the last 5 years….I have been fighting the medical system to get an accurate diagnosis. I want to point out, not a single one of my doctors over the years I have been treated for pain / symptoms ever thought to test me for Celiac disease. I was the one to bring this to their attention, and not a single one of them could offer any help. In fact, my gastro actually said to me ‘it seems your much more knowledgeable about this than I am’. Needless to say, I left his office hysterically crying feeling hopeless and defeated.
Most recently, I was told by both my gastro and a Celiac Center in my area that if I wanted a definite diagnosis, I would have to eat gluten 4 times a day for a month and then have another upper endoscopy. This would in fact damage my system, causing lesions which would then prove I have Celiac. I have severe attacks after accidentally eating any gluten. Eating it 4 times a day for a month would literally put me in the hospital. No thanks doc.
I have heard many different reasons about why there isn’t more progress in the American medical community when it comes to Celiac Disease. The reason that makes the most sense is…..there is no pill to treat this. I have been told not all, but a lot of medical research in this country is funded by the pharmaceutical companies. Since our medical system is in bed with the pharmaceutical companies and there isn’t a pill to treat this…..there isn’t a ton of research or education. The only way to heal from Celiac is to stay on a strict Gluten Free diet, forever. I will note that throughout my journey, I was pushed MANY pills. I was given several different pills for bloating, IBS, anxiety and even acid reflux. None of which helped, but only masked what I thought was really going on all along.
So I continue onward. I may never know if I really have Celiac, but I continue to eat a gluten free diet. I try and stay positive although I still have a lot of dizziness, some stomach pains and unresolved body aches. I will admit I should be more careful about my gluten intake in terms of sauces and seasonings – otherwise I am stringent. Its embarrassing to have to explain to a server or restaurant manager all the things they need to be careful of when I dine at their establishment, but I am getting over that embarrassment more and more. Some restaurants have gluten free menu’s and are educated in cross contamination but most are not. I praise everyone who has tried to being more attention to this issue. Most of us are suffering in silence because we are told our symptoms are ‘in your head’. The hope is….more will start to take notice and start making a change.
Below are a list of resources that continue to inspire, educate, and help me navigate my little gluten free world.
Blogs:www.thehealthyapple.comwww.glutenfreegirl.comwww.jennifersway.orgwww.elanaspantry.comwww.gfinthecity.comwww.celiacchicks.com
Message Boards:http://www.celiac.com/gluten-free/
iPhone App’s:Gluten FreedGluten Free NYCIs That Gluten FreeIs That Gluten Free, Eating Out Eating Out G-Free (Elisabeth Hasselbeck’s App)
Books:The G Free Diet: A Gluten Free Survival Guide By: Elizabeth Hasselbeck
Gluten Free Girl: How I Found The Food That Loves Me Back….AndHow You Can TooBy: Shauna James Ahern
