I started this blog a few weeks ago with one purpose in mind. Life can change in an instant, however, and focus has shifted to what is the only thing that is important right now - my son's recovery. Michael was in a very serious car accident early last Sunday morning - and I am asking for prayers. Some of you may know him from his gluten challenge that I followed on 'Adam's' facebook page this summer. Some of you may know him through this blog. Some of you may have seen him at our annual GF picnics in St. Louis. Most of you don't know him at all - but I can assure you - you'd like him as soon as you met him.
He has been on many prayer lists through family and friends this week - and those prayers are why he not only miraculously survived the accident, but will make a full recovery. On Sunday I know the doctors didn't believe me when I kept telling them he will be o.k. But now they do - and are amazed - because it is just about the time now - as he will recover. He is, as one nurse said "a miracle child". He's progressed SO MUCH this week - and nothing's broken that can't be fixed.
Thank you for keeping my son in your prayers.
As I posted before, when finally tested in 2000 through a Celiac/Osteo study
, my tests we (very!) positive. But at what point in my younger life would the tests have come back positive? While I had many health issues throughout my life, none were consistent all the way through. Illnesses / diseases / symptoms came and went.
Asthma (A very possible symptom!) I had my first asthma attack at the age of 2 weeks. 2 weeks! This came down from stories my mom shared; that her stress resulted in me having an asthma attack. And from my own earliest memories, I can remember several attacks a year. And asthma had me missing lots of school. Lots. I remember so many times lying propped up on the sofa, arms instinctively reached over my head holding onto whatever was above me, just to help me breathe! Struggling, struggling, struggling just to breathe! My mom shared how I almost died a couple times. Yes – it was severe! Family camping trips attempted, but resulting with me waking up with an asthma attack and cutting the trip short. Guilt felt (at whatever young age I was). Yup – absolutely, I felt guilty for “messing up” family things. Four times a year is what that pattern seemed to be. The change of the seasons. And each episode left me sick for 2 weeks.
Skinny, skinny, skinny. (A definite symptom!) I remember being put on ‘diets’ to gain weight. And tall – I was always at the ‘top’ of my class in height. Jealousy – at a young age – of other kids’ ‘roundness’. Honestly, I remember in our pool in the backyard looking at my friends’ stomachs and being envious of the way the water rolled off their skin. An odd thing to remember, I know, – but I was aware of my weight ever since I can remember. My brothers would consistently call me “spider arms” or “monkey arms” – lovingly and in good humor, of course, but, none-the-less, it impacted me. No one wants to be different.
My stomach. (A definite symptom!) I could push it out (on my ‘skinny’ frame) – far! I’d make people laugh at how far my stomach could go, making me look ‘nine months pregnant’.
Chronic constipation through childhood (A definite symptom!). My mom was always trying new foods to relieve this issue.
Pain in my side. (A very probable symptom). I walked to school every day, and 2 memories stand out about these walks: walking on the snow ‘mountains’ from the plowed snow on the edges of the street and having a frequent pain in my side ‘from walking’. I also had a constant raw spot on the right side of my stomach that I scratched so much from an itch that felt like it came from the inside. I always seemed to have a round scab about the size of my fist on my side. This familiar ‘itch’ came back to me and brought a flood of memories a couple times after I went gluten free! Not an eczema thing. It made me wonder if it was an internal intestinal ‘healing’ thing ??? or from accidental exposure after healing (after being gluten free.) ????
SHY!! (A very possible symptom) – I was painfully
shy! Look at me wrong and I’d cry. I remember a family gathering - I was hiding behind my dad. He tried to encourage me to sit on his lap (at the kitchen table where everyone always was). I do remember that feeling of being ‘paralyzed’ . My much older cousin (who I discovered as an adult had a heart of gold) just boomed in laughter at me. I can still hear that bellowing laugh. It was good natured, but did leave an imprint (and helped me to realize the impact our words and gestures, as innocent and fun-loving they might be) can have. My last memory from that little incident was of me hiding under the table.
But, ahhhh…. By age 12, no more asthma attacks (although still some asthma symptoms) – and gradually, I started to come out of my shell more and more. Oh – and something else ended – that had its own issue - Bedwetting. Yes – I was a bed wetter. Until about age 14!! Spending the night at a friends’ – Having friends spend the night – of course – was a problem. And now, looking back (and through much reading) I do see that this could have easily been an avoidable symptom.
But, finally, by high school – ahhhhhh – no real health problems! Is there such thing as a “hormonal remission”?? But I do know – that finally, my weight became comfortable to me. By age 17 or 18 I reached 135 pounds at 5’10”. Whooo-Hoo!!
And then came college and an old “pain in the side” returned – which brought me to the doctor – which found – nothing! Of course. And this is when the “IBS” started - slowly and gradually - in my early 20’s. I remember struggling to hold onto weight again at this time (before and then again after my first baby was born). It always happened (for years, actually) that I’d get back to my then normal weight of 125 and then boom – an “IBS” episode that would last several days, leaving me craving Kentucky Fried Chicken, and easing my systems with oatmeal. Oh – I was so so so in the dark. Misled, misguided – mess! The “IBS” seemed to hit like the asthma attacks of my childhood. Have an episode, be weak and tired, climb back up until I felt “good” and then BAM, get knocked back down.
Sicker and sicker – the symptoms of malabsorbtion take its toll, for sure! But oddly - I didn't look at myself as "sick". I just "was". Finally, in my early thirties, it was a struggle to get to 120 pounds. I remember standing on the scale and reading 114, my lowest point in weight. Not good when you are 5'10".
I could go on and on – but – after years of this (and ‘stress management’ pills, and anti-diarrhea pills, and even having accidents in my sleep, – even this (the diarrhea) eventually went away….
And then I was diagnosed with osteoporosis – which is what I wrote about in a previous post of how I finally got tested and diagnosed – at age 40!! – after a lifetime of issues.While I expressed that it was a "waste of years" - would I be who I am had I been healthy? NO! This passion, this drive to help others avoid what I went through is an absolute blessing. And if I make a difference in the life of one person, its worth it. Yes, it is worth it to hear and to see the difference made in another.
I had my third (and last) child in 1989 - a boy after 2 girls. As I mentioned in a previous post, I felt my healthiest during my late teens and my first two pregnancies, making me wonder if there is some sort of hormonal something-er-other that interferes with the celiac symptoms (temporarily). Looking back, by the time I got pregnant with my son, my body was pretty nutritionally deprived. I didn't look as healthy as I did with the other 2; pictures showing dark circles under my eyes. Lots of fatigue.
I had a feeling something was wrong with him. It wasn’t a feeling that kept me up all night or made me extremely fearful. It was just a feeling. A little voice. The only person I told about the feeling I had about this baby, was my mom. I was afraid to talk about it; afraid that if I said the words out loud it might come true.
He was born with all his fingers and toes, and all the sweetness a mother could ask for.
We had an appointment with his pediatritian three days after he was born. I remember noticing a flash of something different about his left eye the day before his doctor’s appointment. The thought entered my brain, then seemed to evaporate. I realized later that I knew there was a problem before I was even told. The doctor seemed to be examining his eyes for a long period of time before she said she couldn’t detect a red reflex in his left eye.
I asked her what this meant, as I couldn’t help but to notice a bit of concern on her face. She made it clear that she was not an eye doctor and that it was important for him to be seen by a pediatric opthamologist. The fact that she made the appointment with the specialist before we left the office, frightened me. I sensed an urgency.
I found out later how fortunate I was that she didn’t tell me what else it could be - that she feared retnoblastoma.
Once at the pediatric opthamologist, with eyes dialated, it was obvious there was a problem with his left eye. Basically, he had a cataract, (actually, a bit more than a cataract. It was called PHPV and involved the blood vessels in the eye and scarring, ....)
He needed surgery and would then be fitted with a contact lens. I was scared. I was depressed. And oh was I tired. Its true; sleep is an escape, and that’s all I wanted to do. Imperfections are now easier for me to handle; not only in my children, but just every day living. You do the best you can to make something the best you can, and when it can’t be changed any more, accept it.
His first surgery was when he was just one month - and it lasted three very long hours. Oh how tiny he looked in that great big metal crib with the I.V. boarded to his little arm and the heart and breathing monitor pads on his chest. Half his face seemed to be covered with thick gauze and tape. I wasn’t prepared to see him look this way. Now I know there are, and always will be, far worse things for parents to have to face. But until this time in my life, this was definitely the hardest for me.
One month later he was fitted with his contact lens. That afternoon we brought home a two month old baby who needed to have this contact lens removed for cleaning on a weekly basis. So I just became the ‘Little Engine that Could’. “I know I can. I know I can. I know I can.” If something is worth having than it’s certainly worth fighting for. I made a promise to him that I would make it as easy as a diaper change, and I must admit, I got pretty darn good at it.
The contact lens changes were one thing. Patching was another. In order to get his left eye to work, we had to put a patch on his good eye. To start with, we were told to do this for an hour each day. Of course it only counts if he was awake and looking around. But he’d fall asleep, or sometimes just cry. He wasn’t seeing anything, and we knew it deep down.
By the time he reached four months of age, we were told that a membrane had grown back in his eye, explaining just why he wasn’t seeing. Back to surgery. This time a portion of his iris, the colored part, was also removed in order to remove the entire attached damaged lens. This left him with what looks like a very large pupil. It never closes in bright light, so he was, and always will be, quite sensitive to sunlight. Sunglasses became a part of his life at a very early age.
His vision improved - yay - but patching time increased with each visit with the opthamologist - ugh!
By the time he was crawling, patching was hell. He would constantly pull it off if he wasn’t kept busy. I couldn’t just put him on the floor or in his playpen with some toys to play with. He needed to be entertained continuously. Since we were up to two to three hours of patching a day, this became very tedious. I’m sure it was hot. I’m sure it got itchy. And he wanted to see as well as he knew he could see out of that right eye. How could I get mad at him.
But I had to be stern. If I would soften up about it one day, the next would be even harder. I had to do this. I felt responsible for his vision. I’d sternly tell him “no” every time he’d rip that patch off, then, when the dam couldn’t hold it any more, I’d go into the bathroom and cry.
Of course patching wasn’t the only problem. Babies tend to rub their eyes at times. Plus, they never seem to stay in one place. It didn’t take me long to be able to detect whether or not the lens was in just by looking at him. I had to be aware always. If I couldn’t see it, I’d first search his eye, hoping it was just stuck up on top. If not, well.........the alarm went off and the search was on.
Here’s where that little voice came to our rescue again and again. If you’ve ever lost a contact lens, you know just how difficult it can be to find it. And most times we didn’t even know what room it was in.
A couple more surgeries - including strabismus (muscle).
One day (when he was about four) he was riding his big wheel bike (with the patch on) and ran into a smaller child. A relative of that child yelled at my son asking “why did you do that!”. I just wanted to scream “because he can’t see, damn it!” He would beg for me not to put that patch on. It became so emotionally difficult that I started to let days go by without using that awful phrase, ‘patch time’. Of course, when my strength fell short, and the patch was left on the shelf, the guilt set in. It was a no win situation for my emotional health.
Then, again - back to surgery when he was about five - and we were forced to give up the fight. Once again he was kept in the operating room longer than expected. His opthamologist came out to tell us the contact lens would no longer help. He told us not to patch any more because it would be ‘cruel’. I heard the words ‘scar tissue’, ‘retina’, ‘folding’. WOW. So this was it. All those hours and hours of patching, all those tears, all that hope. And this was it. I mourned almost as if there was a death.
But could I change things? No. Unfortunately it was no longer something I could even fight for. He was now happy. No more patch. I have to believe there was some reason for all this. Who knows what research will bring. He’s had vision in that eye. The connection was made. Maybe this will prove important to some future surgery. But since he was five, he's had very minimal vision out of that eye. Very minimal.
And I can't help to wonder sometimes if this was all due to the fact that I was undernourished while I was pregnant with him. I wonder - but will never know. Maybe it had nothing to do with it.... But if it did - so avoidable. And how many unborn babies are affected by needlessly undernourished moms due to undiagnosed celiac? So please share what you know. Reaching one person makes a difference for that one person and all those connected to that single affected person.
Family – Probably the largest link in any of our personal ‘chain link fences’. As I mentioned in a past post, something as simple as a word or statement can impact a person for a lifetime. Words / lack of words, actions / lack of actions – family – the impact is daily.
Family – genetics – Celiac is very genetic (as are many other autoimmune diseases). Hypothyroidism is – genetic.
So, as I posted earlier, I was diagnosed with hypothyroidism in 1984. My mom, as I knew her at this time in my life, was fearful of driving. She was that passenger whose foot was on her own invisible brake pedal when my dad drove as her hand gripped the door tightly – often. At the time my first child was born (in 1983), I know my mom was still driving, as I remember some wonderful fun visits when she and my sister would make that drive from northern to southern Illinois to visit. She wasn’t always afraid of driving. Stories of her younger years were of a person very active in the community. But her own driving gradually slowed down until she no longer drove at all.
As I posted previously, my mom passed away in July 1997. It wasn’t long prior to this when I was finally able to convince her to have her thyroid tested. She had so many symptoms of hypothyroidism. (I had absolutely no knowledge of celiac at this time.) She also had a fear of doctors and seldom went. But she finally did, and it was discovered that - yes – she too had hypothyroidism. And she too was put on synthroid. During my stay with my cousin during those days when my mom passed away, my cousin stated that she was absolutely flabbergasted to open her door just a couple weeks previously - to my mom - who visited on her own. After years of being too fearful to drive on her own – she did it! – happily and excitedly! Was that fear and all that went with it (not to mention several other symptoms) all due to hyporthyroidism? (reading up on the disease indicated that yes, very likely - yes.) A picture my cousin took over the Fourth of July when my parents visited for a Bar-B-Que, was of my mom looking healthier than I had seen in a long time. And so happy! Wow! Waste – more waste of years of decreased health connected to simple tests and simple answers. And yet, I will always wonder and never know if the addition of thyroid medication at full required dose instead of a gradual increase contributed to her heart attack. She was a heavy smoker – her entire adult life – so certainly, this was a major (if not entire) contributor. And I will always wonder if, as a person with hypothyroidism (an autoimmune disease often connected to celiac / undiagnosed celiac) – and many other symptoms I can look back and see that she had - I will always wonder – did she too live with undiagnosed celiac disease? How would things have been different had the proper tests and diet been included in her life? Would she have been able to watch her grandchildren grow up? Would she have been there for me to share my life experiences with? Would increased energy lead her down different paths of her own? Would she still be here now, for me to call on the phone and say “I love you mom”. ?
And - Do I believe my mom was the only genetic link to my own celiac? No. I truly believe both my parents had it. My dad lived long enough to see me diagnosed and get healthy. He too went gluten free for a period of time, and did notice health improvements. His stories of his own health also indicated connections to undiagnosed celiac. And I will always wonder for him too, if . . .
I started this blog as an outlet to describe ‘links’ in my life that are (or that I believe are) connected to years of lack of diagnosis (of celiac), to finally getting diagnosed (with celiac), and to the gluten free diet itself – thus – the creation of my personal ‘Celiac Chain Link Fence’. The more I write, the more thoughts and memories surface – and the more I find a need to write.
As so many of us know, the longer a person goes without diagnosis and a gluten free diet, the more likely he/she is to develop other autoimmune diseases. I was born in 1960 – diagnosed in 2000 – and had many many issues along the way that I connect to undiagnosed celiac. One of those ‘red flags’ (with information currently available to the medical community), was hypothyroidism, which I was finally diagnosed with in 1984 – and who knows how long I suffered with symptoms of hypothyroidism before even that was diagnosed properly.
I had my first child in 1983. Some with undiagnosed celiac have trouble getting pregnant. Not me! We had been married for 9 months when that pregnancy test came back positive - and my husband was in law school – so was the timing the best? Wellll….as my father-in-law put it, “If all babies were planned, there wouldn’t be too many.” (I doubt he ever knew just how much those words meant to me.) As a person who wanted to be a mommy since my earliest memory – (although we were poor, poor, poor) I LOVED it! And the odd thing was – the “IBS” that I had recently developed over the few years prior, disappeared. My energy and overall well being improved greatly. Years later, when looking back, I had 4 very clear times in my life when this kind of sense of ‘well-being’ (and weight) increased to a more appropriate level: my late teens, my first 2 pregnancies, and when I was diagnosed with celiac and went gluten free. I have wondered if there is some sort of “hormonal remission” of sorts (for a lack of my own medical answers or definitions).
Hmmm…. Talk about a long way of getting to the whole “thyroid” connection, lol. Anyway, I breastfed my new baby for nearly the first year. For months after quitting, however, the milk continued. Then came examples of the incredible waste of time, money and unnecessary fears that come with tests to find ‘simple’ answers. I’m sure there were other symptoms I had, but …. that was a lonnng time ago. I do know I also struggled with anemia as far back as this. Blood tests for a pituitary tumor – or was it scans? Or was it both? I honestly can’t remember. But it did take some time and tests until ‘they’ tested my thyroid and discovered I had hypothyroidism. A daily pill to level things – and the milk production stopped – and other things improved – as I remember, most connected hormonally.
Comments from doctors along the way suggested it ‘odd’ that I was so thin, as most with hypothyroidism have difficulty losing weight. But…I had many ‘odd’ medical things over the years. And of course, again – all brought to that link labeled “undiagnosed celiac”.
As the years passed and other health issues arose, and the “IBS” returned with a vengeance,(which of course wasn't really IBS) occasional tests of my thyroid continued to gradually call for an increase in my daily synthroid (thyroid medication). It was the handful of years prior to finally discovering celiac, when the osteoporosis was also a continued battle and concern, that my thyroid med had finally reached the maximum dosage – and I asked again, “Could it be because I’m not absorbing it properly?” And again - blank stares. Between the thyroid concerns and the osteoporosis, yes, the whole “brain tumor” connection surfaced again – and yes, I went through more tests, scans and fears as I had been put through several years before. The time – the incredible waste of time – when just one simple blood test (followed by a simple upper endoscopy for an intestinal biopsy) would have provided the answers.
Guess what happened once I went gluten free? Not only did I amaze the doctors by gaining nearly 15% bone density in the first year, but my thyroid medication continuously needed to be decreased until finally cut in half – and now – even less than that. Was I not absorbing the medication? Was my “little voice” correct? Hell yes it was!
Celiac. “Simple” test. Gluten Free diet – Simple “cure”. And yet – through the years (and years) of lack of proper tests and diet, 2 autoimmune diseases remain because they are not completely reversible: Osteoporosis and Hypothyroidism. And I hope – one day – to blog that these continue to improve.
A few years ago, my husband and I and all our kids got hooked on the series “Lost”. It was truly addicting with all its 'fast forwards' and 'flash backs'. Very creative writing. (and no - I won't try to suggest that my writing can come even close to that kind of creativity, lol) But I guess if you have the story in your head, you can do that; jump around from future to past to present. And that’s what I’m going to do here, a bit. (This is my life I'm sharing, after all, as it pertains to how my paths were created by lack of proper diagnsois and then finally finding that I had celiac.) While there have been many valleys along my journey, it’s those peaks that give a person a chance to breathe in deeply and say ‘ahhhh’ life can be good today – and increases the strength to build on what will come tomorrow. This post is about one of those peaks: My Wedding (Its kinda ironic that as I’m writing about my newfound love, he's in the other room cussing at his computer, lol – But – the excitement of ‘new love’ does fall into that steady comfort of ‘married couple’ kind of thing. lol - Should it be any other way?
At the time I was diagnosed with celiac in September of 2000, I had been married for over 18 years (and things had been going down hill). 2 years into the gluten free life, and much increase in physical and emotional health, I found myself separated - And - by that following summer I was officially single. But that’s another story. This is about that climb back up. I met Steve in 2005. I had been on some of those dating websites for over a year(ish). At first it was ‘for my kids’. They told me, “Dad’s engaged and you haven’t even started dating!” haha I wanted to show them that I could move on. So I did something that was incredibly uncomfortable for me – but increasingly fun. And I went on many ‘first dates’ – and a few that lasted a bit longer than that. My girlfriends teased that I was too picky. But – I was NOT going to force something that didn’t feel right. I was fine on my own. I didn’t need a boyfriend. But of course, sharing my life with someone else would be nice.
I had been on course to finally finish something I started over 20 years earlier - getting my teaching certificate. My general education classes were complete and I was getting ready to start my 2 years in the Early Childhood program. I had to quit my job as a teacher’s aide – and my contract was about to expire on the dating website I was on, so I was going to let that go for a while too and just focus on school. But then I got an email from Steve. So ‘unenthusiastically’ I agreed to meet him. The chemistry wasn’t immediate, but it sure was there by the end of the date. And we’ve been together ever since (except for that time when I broke up with him – for about 4 hours, haha).
I was hesitant to commitment – and avoided any talk about long term – but – it was obvious we were in it for the long haul.
He proposed on New Year’s Eve 2006 (or actually after we rang in 2007). And of course, I said “yes” …. But…….
I wanted to finish my education; was facing a semester of student teaching before graduating that May. And – I wanted to get a job – and settled into it – which I did – yay me! That all fell into place nicely (for a few years, anyway – until the whole state budget issues, blah blah blah – but that’s a valley and this is about a peak!).
And on September 27, 2008, we got married!
My son walked me down the aisle. Such pride, I cannot even explain!
Steve and his son practiced a dance to surprise me with - "Shake a Tail Feather" - that they then taught my son the night before the wedding - when he came home from school. It was GREAT! I laughed so hard! Steve even did a cartwheel!
We made the invitations, did all the decorating (thank you to all the kids for all their help!), the flowers (which I couldn’t have done without my daughter), the cake (o.k… so we made the topper a bit too big, but I’m not a cake decorator or florist), Steve's son was the D.J. – We did it all!
So touching to have such love and support from my girls
Toasting in our new life together, with speeches from our 4 kids who have been nothing less than supportive and accepting.
Our 2 boys - Very funny in their overly dramatized speech. We all got a good laugh.
And I made all the food! - Completely gluten free, of course! Tons of mini french bread rolls, baked and then frozen, ready to pop in the oven. Texas potato casseroles premade and frozen. Several pounds of thinly slice ham (o,k... I didn't have to 'make' that, :) The chicken came frozen from Sam's - bags and bags of frozen precooked wings - EASY and yummy! Mini cheesecakes of all sorts and mini brownie bites, all made ahead and frozen with crusts from crumbled gf cookies (K-Toos, vanilla and chocolate). Cake layers, both white and chocolate.
Food for almost 100.
And we partied - and danced - for hours!
And thank goodness for girlfriends!! - Who heated and served the food while I was busy getting married - and then cleared it, bagged it all up, and even clean up when everyone was done! Amazing!
Just some homemade cakes all dressed up. My daughter came over the night before so we could figure out the flowers - which all turned out nicely!
Ham, chicken, potato casseroles, green beans, frenchbread rolls and salad.
Gotta say - I was pretty proud of how these turned out! Between these and the bread rolls, my mini muffin pans got a real work out over the weeks before the wedding.
Life is a series of chain reactions. It is not, however a single chain where one event loops through another. Each event, spoken word, smile, look or even lack of response loops together to create not just a long chain but a chain link fence. There are several links in my fence of life that come under the label of ‘celiac’: lack of diagnosis, post diagnosis, the gluten free diet. And many many more links are connected to those above. ‘Lack of Diagnosis’ link: either myself before I discovered I had celiac, those affected by me before I went gluten free, family members who were never diagnosed, and many who have been connected to my life in some way along the path whose own lives were affected by undiagnosed celiac. ‘Post diagnosis’ link: renewed health, divorce, new career, new love. My oh my has my life changed since I went gluten free. The chain reaction has been profound! A rollercoaster of events, actually. Peaks and valleys. Oh so so many. And then there are those impacted by these events since their own birth – three incredibly influential people have impacted many of my own decisions – my children. But as I go through my story, I will refrain from discussing their own private stories out of respect for their privacy – as it is my choosing to discuss my link fence, not theirs. That ‘gluten free’ link has so many other connections: support groups, new friends, a strength and assertive side of myself that I didn’t know existed.
Hmmm… am I making it sound like my whole life is linked to celiac? I think I believe that sometimes (too often, actually) – Of course there are many links in my fence unconnected to celiac (I guess?,haha) But this blog is celiac related, thus….. those are the links of discussion.
So this is what my blog is about. My Celiac Chain Link Fence. It’s my story of events connected to those ‘celiac related’ links in my life. That “What if” story (meaning what if I never had celiac or was properly diagnosed when I was first impacted by the disease as a young girl) would surely have resulted in a different life. Without doubt. But remember – Different doesn’t always mean better. And there are so many many things I’ve learned about myself along this path. This is – my journey.
I lifted something heavy and felt a slight 'pop' - It didn't hurt at first, but by late afternoon,pain, - lots of PAIN! This was in the fall of 1998. I saw a doctor - who ordered x-rays - who apparently saw something so ordered a bone density scan. I could tell by the look on the technician's face that it wasn't good, but he couldn't tell me anything; I had to wait to hear it from the doctor. I was 38 years old and discovered that I had severe osteoporosis. Specialists, tests, appointments, questions. I had always felt, and had asked a few times (even before finding out I had osteoporosis) that I wasn't absorbing nutrients. That question always got blank stares, like it was some foreign concept. My thyroid med continuously increased. (hmmm....once again, "could it be because I'm not absorbing?" - continued blank stares.) I bruised easily (very easily), had odd cravings (ice chewing, smelling gasoline and such), leg cramps, fatigue, very low cholesterol - and was thin - very thin. It was a rough time!
I did not feel well, my marriage was rocky and continued to go down hill. My health problems and questions continued to go unanswered. "You're SO thin" was something I never got used to hearing. Many think the thin person who can eat and eat and eat 'lucky'. Having been there, I can tell you - no! I did not enjoy it. I remember feeling pretty o.k. when I woke up, eating what I thought to be a "healthy" breakfast of Raisin Bran before the day went downhill as it progressed. One day, some time before noon, I was just tired of that achiness and fatigue. I just started to cry, finding myself pulling into my doctor's office (without an appt) and requesting to speak with the doctor. She insisted nothing was wrong, making me feel very foolish.
Fatigue continued to increase and bone density continued to decrease.
And then - in September 2000 - my semiannual appointment with my bone specialist found that I had lost another 4% bone density for a total of 7% loss that year. What was wrong???!!! It was so frightening, to say the least. In walked a nurse with a paper in her hand. She told me they were just given a grant to do a Celiac / Osteoporosis study. The paper listed symptoms of celiac (some of which I had, some not). "Do you want to take part in the study?" YES!!! YES!!! YES!!!!! My bone specialist told me she didn't think I had it, but to go ahead and get tested. (later she referred to me as their "poster child for celiac/osteoporosis" due to the incredible improvements. My blood test was positive (VERY positive), as was the biopsy.
I was elated to get the news that I had an answer. And actually, I was the first osteoporosis patient in the study to test positive for celiac. Whoo hoo! Ahhhh.....life became a new adventure with promises of good things to come. I was on cloud nine (with apprehensions). I did go into 'mourning' two weeks later as I started to realize how difficult eating would be - and as I started to realize all the foods I had to do without - or thought
I'd have to do without. Eating gluten free back then wasn't what it is now. But I worked hard to find recipes and learn how to shop and cook. And it was all so worth it!
Here I am, featured in this article printed in a Washington University St. Louis publication, Outlook
: A Most Brittle Hypothesis
(I was Debbie Adams at the time).
Not everyone with celiac has osteoporosis. I have heard there are 300 symptoms connected to undiagnosed celiac disease. Here are some kids and adults and their struggles before being diagnosed and the overwhelming positive benefits a gluten free diet had on their lives. Before and After Pictures and Stories