So, here's a big symptom I had for several years before finding out I had celiac. Ice Chewing! I thought it was one of those horrible habits. No matter how hard I tried, I CRAVED the darn stuff. That ice that sat in the cup, partially melted from a glass of finished ice tea. Crunch, crunch, crunch. And if someone dumped it down the sink in the process of clearing the table after dinner . . . NO!!!! That was MY ice! I wanted that ice. I NEEDED that ice!!
It was odd - Once gluten free (not long - maybe a couple months? a few weeks?) - I realized, no crunching. Could care less for that ice. I discovered (through discussions with others) that ice chewing is a sign of anemia. And as many of us know, anemia is a symptom of undiagnosed celiac.
Another weird thing - I also craved the smells of lighter fluid, oil based paints, gasoline. Ya, I know, not good. But signs of "something is wrong here."
Years and years of subtle - and not so subtle - symptoms. Symptoms that can be avoided with awareness and correct diagnosis.
Know an ice chewer? Tell them to get their iron checked. Anemic? Tell them to get tested for celiac.
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.
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