My Gluten-Free Story

For most of my adult life I’d had some symptoms of GI distress, but for the most part they were mild and easy to ignore. Some acid reflux (for which I began taking nightly acid reducers around 1997), occasional bouts of stomach bloating and diarrhea, nothing too unusual. My memory was getting less and less sharp, which I attributed to simply getting older and more busy.

But after getting pregnant with our son late in 2003, I started getting respiratory illnesses quite often. Little colds lead to bigger ones and soon I was having bronchitis and walking pneumonia several times a year. Year after year I became increasingly more tired and unwell. It got to the point where I would get sick every other month. Antibiotics and steroids were a bi-monthly staple in my medical routine. In mid 2009 it finally culminated into many awful months of severe, debilitating sickness that went beyond the usual respiratory infections. But doctor after doctor, expensive test after test, no one could figure out why. Time and again they said “We can’t find anything wrong… You’re fine” and sent me off with a new prescription to mask my symptoms.

The worse I felt, the less energy I had, the more I ate comfort foods. And what foods comforted me most? Bread and cheese… pasta… cake or cookies…. Little did I know at the time that I was just perpetuating the vicious cycle.

Around October ’09, things got WAY worse and I thought I had something very, very wrong with me. Perhaps terminally wrong. I went through every test known to western medicine: blood work, CAT Scans, MRIs, Colonoscopies…. You name it, I had the test. But the doctors couldn’t really find anything wrong with me. Until one day I saw the Nurse Practitioner instead of the doctor. She looked my medical history over, actually LISTENED to my story and sat back. She quietly tapped her finger on her chin and then said the words that would forever change the way I eat: “It sounds like you have Celiac Disease.” What? A disease of some kind? Oh no! What does it mean?! “Just that you can’t eat gluten,” she responded. I was a total blank.

What’s gluten???

So she ordered some tests, including blood work to check for antibodies (anti-gliadin IgG and IgA). When they came back elevated, she nodded like she knew she was on the right path and ordered an endoscopy.  She told me that looking for blunted villi via an endoscopy is “the gold standard of diagnosing Celiac.” (Below is the great diagram from the Mayo Clinic to help you visualize the many different ways Celiac can be discovered. Click on the image to view larger.) 

So an endoscopy it was.

But after all this, after finally thinking there was hope of an answer on the horizon, I came face to face with an ugly truth: until relatively recently, it seems most doctors were taught in medical school – and fully believed! – that they’d never see a case of Celiac Disease because it was so uncommon. (A friend of the family who’s an allergist confirmed that his class was taught not only is it rare, but that there was no way they’d see a case in their lifetime. None!) But I didn’t know this going into the endoscopy. I thought I was about to get The Answer.

So when the GI doctor settled me on the operating table and was about to have his anesthesiologist put me under, I was ill-prepared for what was about to come. The doctor blithely checked his chart, double checked it and dismissively said “Celiac Sprue? That’s why we’re doing this?! You don’t have Celiac Sprue.” What? Why not? “Nobody has Celiac Sprue. Unless you live in the tropics. But, hey, you’re here, so let’s do it anyway.” And away I went.

So this lovely GI doctor quickly took only ONE biopsy instead of the several recommended at multiple locations throughout the intestine. (Check out the University of Chicago’s Celiac Disease Center for an explanation of Endoscopy for Celiac diagnosis) But luckily that single biopsy report was positive and showed I had blunted villi. And since I’d been told that an endoscopy that shows blunted villi was a positive diagnosis of Celiac, I was relieved. So, yes, this test proves I have Celiac. Yay! Mystery solved!

But wait, this isn’t REALLY what I wanted: No more gluten? No more bread? No more pasta? Oh no! This test proves I have Celiac! Boo…! Mystery solved <sob>

Yet, the roller coaster ride that was the beginning of a contentious relationship with gluten continued! At the follow up appointment this same GI doctor said “Well, it all looks good.  You’re fine.” Again, I do a double take. Wait – what? I inquired about the endoscopy results he once again dismissed: “nobody has Celiac Sprue.” “But,” I spluttered, “you just said I have had blunted villi!” “That doesn’t mean you have Sprue. Here. You just need to take this prescription three times a day for the discomfort you say you’re feeling and this one to help you heal and this one… ” Wait, that I SAY I’m feeling?! Why do I need to heal if I’m just fine?Disheartened and still sick, I left with my three new prescriptions and continued my quest for an answer.

Over the next few months other doctors called it all kinds things: Irritable Bowl Syndrome (IBS), stress, fibromyalgia, depression, possibly Crohn’s Disease…. They prescribed all kinds of medications to mask the growing list of symptoms which now included a heart murmur and irregular heart beat. I tried about a dozen different primary care, allergy, GI, Urology and Cardiology doctors in just under a year. No one knew what the causes of my distresses were, but they sure did like to give me prescriptions! They just kept adding more and more medication until I was taking 8 different medications, up to three times a day, both day and night. It seemed like all they wanted to do was give me prescriptions and a dictate to return if I felt it was needed. They honestly didn’t seem to care what the root cause of these problems were – they just wanted to give me pills.

Little did I know that I’d already heard the answer, in the form of positive blood test results and the positive blunted villi Endoscopy. I just didn’t realize at the time that doctors could look at these results and not know that they signal Celiac. (Yeah… had the awesome Mayo Clinic diagram above been around at the time I may have been saved from the rest of this story. But it wasn’t.)

So I kept looking a new doctor who could help me. At one New Patient visit I optimistically began telling the GP about my medical history. He madly wrote in his chart, not looking up at me, just nodding and writing. That is until I got to “and I think maybe I have some kind of gluten intolerance.” He stopped writing, looked up at me and closed his chart. He listened for a minute more, then got up and actually started backing out the door, my chart against his chest like a shield, his arms crossed in front it. By the time I got to “blunted villi” in the story he was literally in the hallway outside the exam room, done with me but still nodding and only halfway pretending to listen. My husband (who’d come with my that day to be my memory of the timeline of events – because my Brain Fog was getting EXTREME) was shaking his head and kind of laughing at the extreme reaction of this man. Upon hearing “gluten,” this medical professional had literally left the room within a matter of minutes, rejecting my idea of intolerance with a dismissive scoff.

My husband looked at me, amazed at what he’d just witnessed. I had told him that previous doctors had been dismissive and sometimes downright rude when I brought up the idea of Gluten Intolerance or Celiac. But he couldn’t believe this doctor actually physically recoiled at the idea of food being the cause of my issues.

Anyway. On with the story. After all the doctors and all the medications and tests, it was that same nurse practitioner – who, I came to find out, had recently seen something on TV about Celiac Disease – that put me on the road to Celiac and, ultimately, to recovery. She said with a shrug, “well, go ahead and try a gluten-free diet and see if it helps.” She handed me a single page on gluten that she copied from a book and wished me luck.

So on December 3, 2009 I went gluten-free. And it has been the best thing I’ve ever done for myself. One of the more difficult things I’ve done, but one of the best.

When I gave up gluten that rainy morning in December, I stood in the kitchen and cried. Partly because I believed this was the reason for my sickness and I could soon be well. Partly because if this “gluten thing” was truly the problem, I thought I could never eat some of my favorite foods (bread, pasta and cake) again.

But I did it anyway. I had to try. I didn’t do much research and NO planning prior to beginning my GF Diet (a BIG mistake!!). I just jumped right into the deep end and went cold turkey. And I tell you, the first three days were just AWFUL. I guess it was some kind of withdrawal from the gluten, but during those first days I felt way worse: migraines, aches, sweats, mental confusion…. Under my arms hurt SO badly I had myself convinced I had some awful lymph node disease… or worse!

And then, on day 4, I started feeling slightly better. Just slightly. On day 5, hum… the aches were getting a little milder…. Within two weeks, I felt SOOO much better! For the first time in a very long time, I wasn’t weak, shaky and tired (well, no more than an active mom to a five year old would have been). There were no cold sweats, no GI distress (I could tell you some stories that would turn your stomach! Pun intended. :) ). No aches in my joints (particularly my hips) or back.

No extreme mood swings, no quick anger… no off-the-charts anxiety. I used to lie awake at night, unable to sleep, vaguely thinking “Oh no… something’s wrong, something’s wrong, something’s wrong!” I’d keep my poor husband awake late into the night, having him reassure me that “it’s all okay. Everything’s fine.” But within two weeks of going gluten-free, that anxiety was gone. It just … left! My mind was calm, and things felt… okay, good, maybe even a little positive… for the first time in a long, LONG time. And now after more than 6 years of being gluten-free, I know a new normal: calm, easy and, well, even content. No more mind racing. No more horribly anxious thoughts. It’s just totally gone. Amazing.

The swelling of my hands, feet and face, that started when I was pregnant, 6 years before going gluten-free, all went away. I lost FIVE INCHES in my waist within the first two days of being gluten-free. (And two weeks later when I did a little test, I put all 5 inches back on in an hour and a half when I ate one tiny little bite of an unleavened, dairy-free wheat wrap. I went from my new size 12 back up to my old usual 16 because I ate one bite of wheat bread!) My wedding ring, which had gotten so tight I couldn’t take it off, was now loose. I lost an entire shoe size in a month from the swelling going down. I saw wrist bones for the first time in my adult life! Even when I was a super tiny size as a young twenty-something, I was always so puffy that I never saw them. And I couldn’t wear my shoes – feet too swollen in a matter of hours. All this stuff that I’d learned to live with over time had slowly melted away. I’d felt like I was experiencing a minor miracle and with one bite of wheat it was all back.

Who knew that just NOT doing something could make you well?! By *just avoiding gluten, I’m feeling better than I have in years. (*I know it’s not a “just” as in easy thing to do… but “just” as in after all those questions, quests and horrible “I must be dying!” days, it was actually something that was in my control.) By simply eating what my body wants and consciously avoiding what my body was rejecting, I did what no amount of medication could: make me truly well.

But I know it can all return: to this day if I accidentally get glutened so many symptoms come back. And fast! Within an hour I gain those 5-6 inches. And that super-amped anxiety will return that night – with a vengeance! – and I can’t sleep for days. And it takes nearly a week for the really bad stuff to subside and a few weeks to totally go away. But it eventually disappears again. The body is an amazing thing.

After I’d been GF for several months I started noticing that I’d have trouble whenever I would have my mid-morning Chai Latte.… But I checked and there wasn’t any gluten in that. So I decided to go back to my allergist and had to force him run a full panel of scratch tests on foods. And I found out I’m actually ALLERGIC to Casein (the protein in milk) along with several other things. Allergic to milk?! Yikes! When did that happen?! How could I not know about food allergies like this? Adding Casein/Dairy to my already daunting list of foods I must avoid was pretty hard. (Especially since I LOVE CHEESE!! Boo hoo.) It was all very intimidating and more than a bit overwhelming.

After a few months struggling with finding gluten-free foods (back in 2009 there were FAR fewer options than now!) I started seeing a Nutritionist for several months which has greatly helped. In my first appointment with her, I was skeptical because of all the other doctors who couldn’t listen, unable to believe food was the root of my issues. But this wonderful woman listened carefully for nearly three hours as I chronicled my food/medical history. She knew what I was talking about, recognized many symptoms and told me many great things. For one thing, she hypothesized that I’ve probably had this all my life but it’s just escalated since the pregnancy, which can exacerbate Celiac and allergies. Another is that I should never have been taking the acid reducing medication for those many, many. The acid reflux was most likely being caused by my body rejecting the foods to which I was sensitive. And by taking the medication to alleviate the symptom instead of getting to the root of the cause, I was simply masking the problem while it grew worse and worse.

She ultimately helped me realize that this untreated autoimmune disorder had ravaged my system and left me with many allergies and sensitivities. She suggested I take an ALCAT Food Sensitivity panel, which I did. Sixty three food sensitivities showed up to add to my allergies and Celiac. Finding things to eat became more difficult, yet when I avoided everything I was supposed to, I just started to feel SOOOOO great. I mean, greater than I ever thought I could again! I joined a gym again (it had probably been 9 or more years since I felt I had enough energy to “spare” so as to want to expend it on exercise). And I finally had enough energy to keep up with our active son! (There were many times when I laid at home wondering how ANYONE could keep up with kids!)

And now that I’ve been gluten-free for many years, other symptoms that I’d formerly just lived with or dismissed (deeming them “not important enough” to spend the money to diagnose) keep popping up as Celiac related. Like the bump on my skull that started growing about 10 or 12 years ago. After many tests, the doctors said it was “just a calcium deposit” and that it was nothing to be worried about. But it kept growing and growing (it’s the size of a silver dollar) but they didn’t know why. And since going gluten free, it just stopped growing. After a bunch of research, I now know that calcium deposits can be a side effect (symptom?) of Celiac. And having my gallbladder removed at 30? Probably due to gluten and all the stress it was causing. And kidney stones at 35? A bit early! But since going gluten and dairy free, I rarely, if ever, get them. Hum…. Coincidence? Not so sure….

After several years of being gluten-free on my own, I finally found a doctor who looked at my test results (blunted villi and elevated antibodies) and basically said “of COURSE you have Celiac!” He started checking my vitamin and mineral levels (which is SO important to stay on top of!) and periodically checking to see if the antibodies go up (signaling hidden gluten may have snuck into my diet – which I would know anyway since I’m super sensitive and blow up like a balloon in an hour!)

Eventually, I was taken off all my medications. And to this day I don’t any prescriptions, just supplements (vitamins and probiotics). As long as I stay on top of my nutrition levels and focus on eating good, whole foods, I feel great!

Now, after doing so much research and trial and error and talking with fellow gluten-freers, I’ve started not one but two gluten-free support groups. One down in Florida where we used to live and one up in New England where we currently live. We have monthly meetings and talk and chat and generally go on and on about gluten-free ANYTHING. It’s so great to have a support group to lean on when you need it. I highly recommend it! Because if something you’ve been through, suffered through – like this (very long!) story – can help someone else, then all the better.

Phew! That got long, huh? But hopefully this story or my site can help you discover some new things to make your gluten-free life easier! Let me know if there’s anything that I can post to help….

Best of luck on your gluten-free adventure!

😉 Noi
Click Here to Read More About Me

10 Responses to “My Gluten-Free Story”

  1. Guest 06/14/2014 at 2:29 PM #

    Christine,
    Have you looked into duodenal Chrohn’s disease? I am looking for answers myself and your symptoms sound like it could could be (hopefully not). Your miscarriages could be related to tour inability to absorb folate since your small intestine is damaged. Good luck.

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  2. Amy 09/12/2013 at 12:12 PM #

    Thank you for sharing your story! I know how frustrating it can be to KNOW something is wrong and not have anyone know what to do with you–or take you seriously. I’m facing my own battle now and simply googled “gluten free stories” because I just wanted to read what others are going through. I am self-diagnosed as gluten sensitive at the least. I was off of gluten all this year but went on a “binge” a month ago and have not recovered yet, which seems extreme. I was searching online to see if others had similar stories when I came across your blog. I loved reading your story! It was well written and brought tears to my eyes.

    If I may ask, which lab did your genetic testing? I am considering getting it done for a couple of different reasons.

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  3. Karen Wilson 07/24/2013 at 7:08 PM #

    It has taken me 10 years to figure out that I have celiac – and when I say that I figured it out it, I really mean this literally. As a child, I remember getting diarrhea after eating pancakes. I never liked sandwiches and was one of the few kids who picked her bun off of a BigMac. In my twenties, I ended up diagnosed with IBS, which was treated with medication. I moved to Germany where I lived for many years. After my son was born in 2000, I began a long odyssey of symptoms – pain in my feet, exhaustion, chronic headaches, chronic stomach aches, gas, bloating, depression – for which I was treated by a myriad of doctors to no avail. When I moved back to the U.S. I was so depleted of energy that I could barely climb a small hill near our house. One day I had such severe cramping that I could barely stand, but dragged myself to my internist. I saw a young doctor who ordered a MRI the same day. The results showed a near entire blockage in my small intestines and I was scheduled for surgery two days later. They removed 7 inches of my intestine and attributed the problem to “inflamed polyps.” For about 6 years, I returned to a “normal” state of being – one that included stomach difficulties, extreme food sensitivities (a glass of wine resulted in immediate headaches and a feeling of discomfort) and recurring bouts of UTI and peeling skin on two fingers. I thought this was my normal since I could no longer remember what it had felt like otherwise.

    Several months ago, I began getting new symptoms – a case of sudden onset of vertigo, heart palpitations, pain under my right rib cage and chronic flu symptoms. A brain MRI came up negative, a full cardiac make up came up negative, and after my insistence, an abdominal cat scan came up positive – I had both elevated liver counts and damage to my small intestine. My internist asked me whether there was any instance of celiac in my family – the first time anyone had ever used this term in connection with my symptoms. I left her office on a mission to learn as much as I could. I made the decision to begin a gluten free diet. In less than 48 hours, all symptoms had disappeared. I didn’t need naps in the afternoon, I no longer ached, my feet didn’t cramp up, my sleep improved, and I felt my spirits lift.

    Although I have a colonoscopy scheduled for August, I don’t care to wait for the doctors diagnosis to determine what action I take. It is incumbent upon each of us to be our own advocate in this medical minefield (and I really mean minefield) we call modern medicine.

    Without over dramatizing, it has brought me to tears thinking about the pain my family has gone through with me over this issue. This is the first time I have ever contributed a personal story to any forum and I am doing so because I believe it is time for more voices to be heard. If this gives anyone courage to take their healthcare into their own hands, then the effort has been worth it.

    Well-loved. Like or Dislike: Thumb up 10 Thumb down 0

    • Amy 09/12/2013 at 12:16 PM #

      Karen, thank you for sharing! I love this line: It is incumbent upon each of us to be our own advocate in this medical minefield (and I really mean minefield) we call modern medicine.

      Good for you for taking your health into your own hands!

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  4. Sid Muessig 04/10/2013 at 9:34 AM #

    If you often have acid reflux, avoid drinking during your meals. A glass of water will add to the volume of food in your stomach and make digestion harder. You should wait until you are done digesting to drink and avoid drinking just before having a meal or a snack.

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  5. Terry Dos Santos 06/06/2012 at 12:04 AM #

    I agree with April go gluten-free within 4-5 days you will see a difference and you have many of the symptoms it seems to be. All your deficiencies coincide with Celiac Disease, you have nothing to lose to eat gluten free and you will know within a few days if this is your problem. I won’t lie and tell you it’s easy, I got diagnosed two days before Christmas and I had no choice but to listen to the Dr. I got lucky and got diagnosed within three weeks but i felt way better within three days of eating GF. Be strong and do it, it will not hurt you. Good luck!

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  6. terri 06/05/2012 at 9:03 PM #

    Anyone with bad GI distress should look into the FODmap diet. I spent 2 years of hell until a specialist at U of M suggested this diet. It is an elimination diet geared toward how sugar/carbs are digested. In short, the sugars are not fully digested in the small intestine and pass to the large intestine where they ferment. The book is called IBS free at last. About $15 on Amazon.

    Also the only probiotic to make a difference is VSL #3. Quite pricey but my espohageal backup was drastically reduced when I started these.

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  7. Ryan 07/23/2011 at 9:29 PM #

    Noi,

    I love your website! Interestingly enough, my history with gluten and other health problems is very similar to yours. Regarding lactose-intolerance, I believe this is the one food more than any others that induces intolerance.

    I lost 60 pounds in just a couple months when I started reacting to gluten 8 years ago. I had a different problem where I would have diarrhea several times a day and couldn’t keep anything in my body.

    Regarding your post, I have a couple questions. How have you kept your job(s) while dealing with these problems? I know that some of my jobs have been affected by my poor health.

    Acid reducers. I just started taking these 3-4 months ago. Like you, I worry about what this is doing to my body. Soon I am going to see the doctor about possibly getting surgery done to fix my GERDS. And since I have sleeping problems also, I feel like I really need coffee some days to keep me awake.

    I have seen a couple nutritionists, but they have not been too helpful. Have you heard of SIBO (Small Intestinal Bacterial Overgrowth)? I am almost sure that is what I have, based on symptoms. What do you eat now? I have been gluten-free for almost five years. But due to ridiculous food reactions, I have currently limited my foods to: tilapia, cod, tuna, salmon, beef, organic chicken, green leafy vegetables, mushrooms, acorn and butternut squash, roasted almonds, olive oil, salt, garlic, cinnamon, and mustard powder. I want to eat more variety and quantity because I still weigh less than my body size and previous weight 8 years ago. But I don’t want to repeat the symptoms.

    Finally, can you recommend some doctors that actually know alot about Celiac disease and proper diet? I have also been tested for CD and received negative results. But I was diagnosed Gluten Intolerant by an independent health research org. And IBS by many GI doctors.

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  8. Christine Smith 06/23/2011 at 12:09 PM #

    Hi, Iv just read all about your history. It’s unbelievable and very like myself.

    I have had problems with sickness, nausea, constipation and diahorrea since I was 4 years of age. I recall all my childhood having very regular bouts of stomach bloating, severe pain, sickness and diahorea. My mum always had me at the doctor, they eventually at the age of 11 because they could find nothing else wrong with me diagnosed me with abdominal migraine. I have always also been prone to headaches. My sister has coeliac disease but at that time they insisted it wasn’t hereditory therefore ignored my mums request to have me tested. All thru my teens i was lethargic, had headaches and the usual tummy pains etc. In my 20s i started to become depressed and suffer from anxiety which i still have today. I also began to get severe pains in my bones to the point i was sure i had bone cancer. They couldnt find anything wrong with me and sent me away with painkillers. Iv just learned to live with these bone pains which i still have to this day. Over the last 6 years my stomach bloating, pain etc has become much worse and i now also have gastric reflux. I also get palpitations and chest pain but have been told its panic and anxiety. I have over the last year seen a cardiologist, nothing found, urologist, stretched my bladder i think to keep me happy, and now a gastroenterologist who insists as my blood test was negative i do not have coeliac disease. I got a biopsy six weeks ago and have just been told that i have blunted villi and chronic duodenum inflammation but there is no histological evidence of coeliac disease. My sister contacted coeliac UK as she is a lifetime member, they say if i have blunted villi then i have coeliac disease. My doctor will not listen to this. I am so upset as once again am being left in limbo and made to feel like a hypochondriac. Im sure my husband is getting fed up with my unwellness too. I have also got deficiency in iron, calcium, Vit B12 and folate. Why can they not recognise and put together all these thing and diagnose me with coeliac. Especially as my sister, uncle (dads side) gran (mums side) all had or have coeliac. AAAAAARRRGGH.

    Sorry for this long email. It just gave me some hope to see someone similar to myself.
    I have diagnosed with diverticular disease, IBS, hiatus hernia, Gastro Intestinal Reflux and Anxiety and Panic Disorder. Oh and they think i have endometriosis as I have very painful heavy periods but they didnt investigate this. Iv also had two very early miscarriages that I know of but I think more than this.

    Christine x

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    • April 09/15/2011 at 6:06 AM #

      Do not wait for their go-ahead. Go gluten-free NOW and prove it to yourself. That’s your only option at this point. Commit to 2 wks for you starting point.

      Like or Dislike: Thumb up 5 Thumb down 2

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