It never occurred to me that I had an issue with gluten- other than I LOVE GLUTEN. I was a donut hole junkie. Looking back now, I see the signs. I wasn't diagnosed until I was 51. I think partly because at 38 I was diagnosed with Lupus, so any ill feeling was attributed to that. Once that got under control, I remember asking my rheumatologist- does this medicine make you gassy?
His answer was a quizzicle "no?"
​(Is quizzicle a word?) Lets use it anyway. ​

Swollen feet - I had that a lot. I chalked it up to just being the type to retain water. Fast forward to 2014. I was going to physical therapy for nagging foot pain I blamed on my daily running routine.  About that same time,  I noticed that whenever I ate, it felt like my food would get stuck.  I remember telling my husband- I must be eating too fast. Shortly after that, I was eating carrots at my desk at work- and it felt like a piece got stuck going down.  Not in a choking way- just an uncomfortable pain in the esophagus. 

The pain continued for over a week before I visited the doctor. She suggested the test I dreaded the most. Endoscopy. Fearing the worst- I went. Their initial diagnosis? Celiac. The blood test later also confirmed. The gastroenterologist said that by changing my diet I will feel
better in more ways than just the esophagus pain. He was right, No more physical therapy needed, no more swollen feet, no more gassy belly.

It's taken a while, but I'm learning how to be more aware. Eating out can be a challenge! I get a little sad sometimes- but there are a lot worse things out there.  I can surely deal with this.

Thank you so much Marlaine, for sharing your story.
​
If you would like me to share your story, please email me at dsimpson@dsimpsonbooks.com.
You won't have to actually write it, as Marlaine did (although you are welcome to).
​ I will send you a questionnaire to complete and I can put it all together.

*It is common for other autoimmune diseases to be diagnosed prior to a celiac diagnosis (and what these autoimmune diseases are, depends on a person's genetics--as they often seem to run in families.) Does this happen more frequently when celiac diagnosis is left undiagnosed and untreated? I have heard this, but of course I don't have the true answer. I have seen (often) that those who suffer an autoimmune disease are frequently 'blessed' with more than just one. But I do often wonder how many (or even if) these other autoimmune diseases could be prevented by a proper celiac diagnosis and proper gluten free diet in a timely manner.
I am not a doctor, nor do I play one on TV. These are just my thoughts (and my wishes for routine celiac testing). 

(For a personalized chalkboard like this one, please check out the Celiac Awareness page.)

Another story of someone who experienced symptoms as a child, yet wasn't diagnosed until an adult. ​Christina suffered from severe migraines, constipation, and stomach aches as a child. Of course, as with anyone diagnosed with celiac as an adult, it can’t be proven that these childhood issues were caused by gluten (but gluten is highly suspected).

After several years of symptoms, Christina was tested for celiac in 2007. The blood test was negative, but she had the gene, had been experiencing symptoms for the ten years prior, and had a sibling who tested positive for celiac. For those reasons, her doctor diagnosed her with celiac. She had been so sick prior to testing that her diet had been limited to bananas, mashed potatoes and applesauce. And, of course, a person needs to be consuming gluten for accurate testing.

The list of issues so many learn to “live with” prior to going gluten free always amazes (and saddens) me.  During the ten years before learning that she needed to be gluten free, Christina suffered from: ocular migraines, diarrhea, vomiting (several times a week!), hospitalization to prevent premature births (twice), rashes, joint pain, dental problems (tooth loss), vitamin deficiencies, GERD, dizziness, bloating (to the point that she was asked if she was pregnant) and she was underweight.​ Since going gluten free, these symptoms are a thing of the past (unless she's glutened). 

Christine was also diagnosed with Sjorgens about five years before she was diagnosed with celiac--and, besides having celiac, she is also allergic to wheat, requiring her to carry an epipen. (Celiac is an intolerance, not an allergy; these are two separate issues.)

Even though she wishes she'd been diagnosed years earlier, naturally, preventing all she went through, Christina is grateful f​or the answers she now has---even though it requires a strict gluten free diet.  

​I’m not unique in having lived decades with undiagnosed celiac. Sara experienced symptoms for approximately 33 years before discovering that gluten was behind her issues. She remembers getting sick after meals as a child----frequently! Her parents and sister thought she was just trying to get out of doing the dishes because she made her exit to the bathroom while others cleaned up. (Boy does this sound familiar!) 

During the year that Sara turned 26, pain sent her to the ER three times. They told her the pain was due to gas (at first) but when pain required a third visit in just two days, she was admitted. The year prior, surgery was required after a burst appendix; now they told her her gallbladder needed to be removed. She was told she had the gallbladder of an 87 year old. After surgery, she was sent home with the prescription to follow a BRAT diet: bananas, rice, applesauce and TOAST! She still got sick after eating, even though she was limiting herself mainly to rice, applesauce and her favorite food, artichokes.

​(For a personalized chalkboard like this one, please check out the Celiac Awareness page.)

​Six months after surgery, and all “healed,”Sara was told she could follow a normal diet. Working on a cruise ship had her wanting some of that yummy tropical food they served, but she continued to experience diarrhea after eating (as her meals often included breaded items like coconut shrimp, garlic bread, and more.  (For those of us who have lived this, by now it seems obvious what the culprit was, but how many of us made that connection while we lived it?
I know I NEVER made the connection between wheat and my symptoms. Ever!)

(If you would like a personalized chalkboard like the one here, please
​check out my Celiac/Coeliac Awareness page. Sized for  FB profile picture.)

​
​Undiagnosed celiac and non-celiac gluten sensitivity can look very different from person to person. Sometimes gluten free seems to be THE answer; sometimes it’s just a piece of a person's health puzzle, as is the case with Caitlin.

(This family is from South Africa, where celiac is spelled “coeliac,” which is how I will spell it here, as I retell Caitlin’s story):

As a toddler, Caitlin suffered with pneumonia, bronchitis, sinusitis, ear infections, and throat infections. This led to the removal of her tonsils and adenoids when she was just 3 years old. Mom had been hearing good things about "gluten free." They decided to eliminate gluten, but mom admits  they weren't strict. (She was not diagnosed with celiac.) ​

​By the time she was 5, Caitlin was diagnosed with CVID (common variable immune deficiency). I had to look this up, as I'd never heard of it before. It basically means that she is highly susceptible to infection due to an impaired immune system. They continued to follow a (not so strict) gluten (and dairy) free diet.

​When a child is sick, all a parent wants is for her to be better.  Katlynn came down with the flu in the middle of December, 2012. She was just two and a half years old. Even though the worst of the flu seemed to be over after a week, she continued to vomit once a day. A trip to the ER resulted in anti-nausea meds and a diagnosis: “virus.”

​The "virus" didn't go away; the anti nausea meds weren't effective. This poor sweet girl continued to vomit daily for 2 months, losing a total of four pounds. Now, four pounds may not sound like a lot, but let’s put it into perspective.  Remember, she was just a toddler. She was only twenty four pounds before getting sick. Now that four pounds sounds like a lot, doesn’t it?!​

Needing answers, Katlynn’s  primary care physician directed her parents to a pediatric gastroenterologist. With a family history of celiac disease, the pediatric GI ordered a celiac panel, ​followed by a biopsy of her small intestine, confirming celiac disease. Once gluten free, the vomiting stopped and Katlynn started gaining weight again. Within two months, she was back to her pre-sick weight.

My original objective with this blog was to connect all the dots in my life to undiagnosed (and then diagnosed) celiac. I hope to accomplish that this year, along with some recipes and other fun things thrown in. Thanks for following my journey.

I think I was glutened again the other day. ugh! Crabby and angry yesterday. Achy and  reflective today.  Maybe I'm overthinking - but probably not.  I usually feel very blessed to have been diagnosed with celiac.  I feel that having lived undiagnosed for a lifetime (40 years) and then experiencing the power of the change in my physical and mental health gave me the passion and the drive that hasn’t diminished in the thirteen years since my diagnosis. But sometimes I wonder what life would have been like had gluten not ever affected me.  And more, I wonder what life would have been like had gluten not affected those in my life who we never knew and may never know have been (or possibly are now) being affected by gluten.

A person doesn’t have to be obviously ill to be affected by gluten. If I visited the doctor today and described what I feel , “achy all over”  and  “like I have a bit of a hangover” even though I  didn’t drink yesterday, or the day before, or the day before that.  And then if I proceeded to tell the doctor that I felt angry and hateful yesterday and a sense of overall crabbiness, he’d just tell me to rest or to exercise or to take this pill or that.  What I feel with gluten is not something that sounds like “sick” – it is just “less than well.”  But it affects my body and my mind in the way that a shoe that is one size too small affects the person wearing it, minute by minute, hour by hour, day by day.  And I lived this way, minute by minute, hour by hour, day by day – and year by year – for forty years!

I made other people’s life miserable. I could be oh-so-nice. I was oh-so-shy. I was often oh-so-sick (asthma as a kid, IBS as an adult) – but not all the time.  And I could be such-a-bitch!  And I wonder what my impact with loved ones would be if I wasn’t that crabby person, if I wasn’t that person who got into such heavy arguments with my mom, with my sister, with my first husband, with my kids.  And I wonder how emotions and an underlying sense of “not feeling the best” affected other family members.  Because honestly, what I feel was something I often thought was “normal.”  A person can’t know there are colors if they live a life in black and white. So how many other family members were living (are living) with that constant thorn in their side?  I do believe both my parents were gluten intolerant at a minimum. My mom didn’t live long enough to see me diagnosed properly with celiac.  My dad did go gluten free eventually and benefitted positively for a short period of time.

Ahhhh…. I feel so much sadness when I think about the family I have but miss terribly. I miss the bond I thought we once had. I feel “not worth their effort” all too often, and certainly much more strongly when I am under the influence (meaning “glutened”, lol).   You see, it doesn’t matter how old a person gets  - family is family, and family is missed when they aren’t around. 

I was the first in my family to be diagnosed with celiac. I've often felt others don't want to dare to think they have “it.” My son is gluten intolerant,  and I thank God I discovered this while he was young enough and under my “control” for him to discover what it feels like to be gluten free.  My dad was gluten intolerant.  My sister is gluten intolerant, and gluten free, as is one niece. And more recently another niece diagnosed with celiac.  So how many others in my immediate or extended family are now, or will be in the future, affected by gluten?  I have 3 other siblings and 2 other children and a multitude of other relatives.  But unfortunately, too often, if a doctor doesn't diagnose something (celiac) it (gluten) isn't thought to be an issue.  Some (or maybe many) might have learned to live with that thorn in their side, when a change in diet could make that sun shine oh-so-much brighter on their lives too.  Maybe I’m wrong.  Maybe no one else is under the “influence of gluten” – but . . . ????   Who knows.

Our lives and our choices don’t stay isolated within ourselves.  I am just blessed to have had that experience of knowing the difference in how I used to impact others and how I can impact others now. But it is so damn discouraging sometimes to know that others in this world are living under a cloud that could so easily be removed.  Because when one person lives under a cloud, those they live with, those that are around them, can't help but to get rained on.
(Over 80% with celiac are still not yet diagnosed!) 

To those I rained on (and still rain on from time to time) – I am sorry.

And more---to those who are helped through my words and through my gluten clouds---I am grateful for that rain.