Today on BeBetsy.com, SunnyB’s Living With Celiac series features Brian, the East Bay Celiac. Brian has been living with celiac disease for a number of years, showing symptoms as long as 13 years ago, although he was only properly diagnosed a few months ago in January, 2012.
If you are interested in having your story shared, please contact SunnyB by using her contact form and mentioning your own/your loved ones diagnosis.
Brian suffered with GI issues for several years before a friend suggested that he might be lactose intolerant. This made sense to him as eating an ice cream with a waffle cone, sandwiches with cheese, yogurt with granola and many other milk based desserts or meals set off his GI issues. Living a dairy free lifestyle seemed to help, but his GI issues never fully subsided and his lifestyle was beginning to suffer.
It took a dear friend opening up about his own digestion problems, speaking about how a gluten-free lifestyle helped him heal, for Brian to dig deeper. After several weeks on a gluten-free diet, Brian felt better and so he sought more information and a proper diagnosis from his primary care physician. When his blood antibodies test came back negative, Brian’s doctor told him he was in the clear. But his GI issued did not go away.
Convinced he needed more tests, Brian pushed forward until he was able to meet with a gastroenterologist who quickly confirmed that he may have received a false negative. 29% of the people who have a false-negative in an IgA blood test actually have celiac disease. This percentage is greatly increased when the patient has been living a gluten-free lifestyle for an extended period of time prior to testing.
So while Brian’s proactive change to a gluten-free life expedited his healing process, it hindered his ability to receive the proper diagnosis.
Even so, do not let this fact hold you back from eliminating gluten from your diet. Realizing how much better we felt without gluten is what lead both Brian and me to seek further diagnosis; it may work for you as well.
Brian says the most memorable portion of his diagnosis is the relief of knowing what was wrong. Having been on the fence, wondering if he was gluten-intolerant or actually suffering from Celiac Disease, it was a relief knowing how he had to live his life.
The initial tale tale symptoms of his prognosis included diarrhea, cramps and bloating. Following his diagnosis and adhering to a gluten-free lifestyle has allowed Brian to see that he also suffered from a rash, bloated stomach, chronic fatigue and foggy brain.
Amazingly these are just a few of the more than 300 symptoms of celiac disease .
The most surprising discovery Brian has made about celiac disease? How supportive the online community is (I completely agree). Brian does have the luxury of a local support group in his area, but unfortunately does not have time to attend their meetings. In turn, Brian has made the online community his support group of sorts and truly appreciates the many friends he has made.
Brian finished our interview with the following statement:
“…daunting as it seems, (gluten-free) is not that hard of a lifestyle to live, if you know what you are doing. Having a close-knit support group is also key…educate yourself as much as possible with the right information and then educate your support group.
Being an advocate for yourself is your best line of defense.
I have read online that those with celiac disease would do anything not to have celiac disease. My opinion is that if you are educated, know the right questions to ask and what you are eating, it’s not that difficult. Yes, there is a lot of prep work (to living gluten-free), but the alternative is reason enough to do the work.”
Have a wonderful week!