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30 May 2005

diagnosed with celiac

From 10th of May 2005:

I've been gone a long time.

For the past few months, I’ve been in lousy pain. Again. The injuries from the car accident (last December 12th) carried on, and I continued to be crushingly tired at times. Most of the time. But along with that, every cold and flu that came along seemed to glom onto me and keep me on the couch. Most of the fall I was limping along, with a resurgence of back pain and a perpetually stuffed-up nose. Headaches invaded my head every day, every day. Not a day without one, and most of them were pounding by 4 pm. I returned to acupuncture and massage and the doctor’s, hoping for relief. In January, I was laid low with the horrible flu everyone else around me had too: bad sore throat, lethargy, achy joints. That lasted a month. And then in early March, I was suddenly struck with a fever, acute sore throat, and utter exhaustion. For two weeks, I thought the virus had returned. A doctor gave me antibiotics and a mono test. The first one made me feel worse, the second one came back negative.

And then came the abdominal pain, the nausea, the feeling of perpetual fullness, the growing revulsion toward food, the flattened energy, the sleeping 18 hours a day and still feeling tired. The lousy time. I couldn’t eat more than a half cup of food at a time. I didn’t eat a full meal in over six weeks. I was down to eating baby food for a week and a half.

There was a trip to the emergency room. Multiple visits to multiple doctor’s offices. Two ultrasounds. Two cat scans. Chest x-rays. A colonoscopy and endoscopy (on the same day). More blood drawn than I can count. The possibility of kidney stones, colon cancer, stomach ulcers, endometriosis, adhesions from my surgery two years ago, ovarian cancer. And every test, every possibility came back negative. We don’t know what the hell is wrong with you, the doctors seemed to say, over and over.

I was starting to think I would never feel well.

Notice that sentence is in the past tense. Because now, I know. And now, I feel much, much better. Gloriously better. Finally.

I have a diagnosis: celiac disease.

What the hell? I'd never heard of it before two weeks ago, but it seems I've had it all my life. And apparently, so do a lot of people, since everyone I know seems to know someone with it. The only reason I heard about it is because two friends of mine separately heard a report about it on NPR a few weeks ago, this mysterious disease with my symptoms that’s terribly underdiagnosed in the US. Both friends heard it and thought of me. And then I asked a doctor about it, and she did a blood test for it. And now I know all about it.

What is it? It's a genetic intolerance for gluten, and it has apparently been damaging my small intestine for years. Silently. Or at least in language I didn’t know how to recognize. For various genetic reasons, my body reads gluten as a toxin, and attacks it. And then the gluten attacks my small intestine, which means that I don't absorb all the vitamins and nutrients I should. Leaving me with a perpetual exhaustion and dragged-out injuries from a car accident and daily headaches, as well as a dozen other small ailments that all make sense now. Everything makes sense now. They think now that the surgery I had two years ago woke it up. The car accident set it babbling in my body. And the virus I caught this year finally made it scream at me in the form of horrid pain/lack ofappetite/weakness/exhaustion/brain fog. But no longer. Never again.

As soon as I had my blood drawn, ten days ago, I cut gluten out of my diet. And that’s really fricking hard, it turns out. Gluten is the elastic protein in wheat, rye, barley, triticale, spelt, and possibly oats. So that means bread, cookies, pies, cereal, cinnamon rolls, pasta, and oatmeal. That’s hard enough. But it also turns out that gluten hides insidiously in almost every processed food, disguised as modified food starch, distilled vinegar (they pour the vinegar through wheat), hydrolized vegetable oil, caramel color, dextrin, and even natural flavors. I have to read every box, decipher every food, ponder every bite I eat.

[2007 addendum: everything shifts in this gluten-free world, and all for the better, as awareness increases. Distilled vinegar is fine. That's an old myth, it turns out. But when I was first diagnosed, all the standard literature said to avoid it. Caramel color made in the US is fine. But when it's made outside the US, beward. Again, we have to be careful.]

So many people have said to me, "Oh, my god, I'm sorry to hear you have this." But not me. I take this as a challenge, an adventure. And it forces me to do more fully what I already started this year: eat organic food, close to the ground, whole and nourishing. Oh darn. I’ll be even healthier because of this.

Here’s the amazing part. As soon as I cut gluten out of my diet, the same day, I started feeling better. The pain diminished. I started to eat a bit more food at one time. I started to feel more clear. Every day that passed convinced me more. On the third day without gluten, I looked up and realized I was clear. It was as though I had been wearing smudgy contacts for years, and someone had just cleaned them for me. I’ve been in a brain fog for years. Years. And now, I feel clear.

And now, ten days out, I feel infinitely better, not only from the past three months, but more mentally clear and energetic than I have in YEARS.

And now, I’m eating normal portions. The physical feeling of hunger returned five days after cutting gluten out, and it came roaring back. I was HUNGRY! Now, I’m hungry all the time, eating a little bit of food every three hours. Last night, I roasted an organic yam, which I mashed up with walnuts and golden raisins. It tasted so good just now. God, I love food. I'm happy to have it back.

And for a year and a half, after the car accident, I had a crushing headache every day. Every day for a year and a half, except three. But now? Now I haven't had a headache in ten days. Hallelujah.

By the time the blood tests came back positive, on Friday, I already knew what was wrong with me. The science confirmed what my body told me, clearly. And it’s such a relief to finally just know what has been going wrong. And not just these past few months, but for years.

It’s going to be a few more months before the damage to my intestines is repaired fully. I’m still in a bit of pain, but low, grumbly. Everything’s sensitive, and I’m still being careful. But even now, I have more energy, clarity, and enthusiasm for life than I have in years. The doctors say that within a year, my intestines will completely repair themselves, if I don’t eat any gluten at all. If I feel this good after ten days, what am I going to feel like in a year? It’s possible that I have never really met myself.

I feel reborn this spring.

So this means I won’t be able to eat a pain au chocolate in Paris. Sunday cinnamon rolls in Sitka. A crusty loaf of whole wheat cider bread from Macrina Bakery. A chocolate cake for my birthday. A Top Pot doughnut. Or a bowl of oatmeal. Ever again. I’ll have to be vigilant about my food, always. Eating out will be nigh well impossible in most places. Bummer. But if it means I'll never have this pain or lethargy or brain fog again? No problem.

Much love and a loaf of gluten-free bread,
Shauna

31 Comments:

At 6:11 AM, Anonymous Anonymous said...

I am experiencing a similar journey now. My symptoms aren't as severe as yours, but it is still invigorating to feel 100% better after only a few gluten free days. I'm getting tested soon. I'm not sure what to hope for, but at least I found a way to take back control of my life.

I've enjoyed reading your blog. Your recipes and photography are fabulous. Thanks.

 
At 5:37 PM, Anonymous tracey said...

Shauna, thanks so much for being so open with what you went through. I'm struggling a bit with food intolerances and allergies, and reading this makes me feel like I can get through it. It's inspiring to read through your journal and get advice like this :)

 
At 6:53 PM, Anonymous Kristine Baerlin said...

I'm experiencing the same as you did, and the previous anonymous. I still need to get a blood test done, but with all my own personal research I feel like my entire life has been explained to me. The mystery is solved. It's as though I always needed glasses but never knew it, and am seeing clearly for the first time.

I will continue to consult your energetic and inspiring blog. Thank you!
Kristine

 
At 1:47 PM, Blogger Fabricated Goddess said...

GFG: I just found your blog and I'm, um, is it weird to say I think I might have this?? The constant full feeling? Check. The lack of appetite and energy? Check. The 'brain fog' that verges on dizziness and makes me think maybe I'm going crazy? Check!

What makes me curious even more is that I've been on a no wheat, no dairy, no sugar diet for 4 weeks in an attempt to clear up a rather persistent facial excema and in the mean time, all those other symptons have disappeared. Also gone: food cravings and low blood sugar crashes and the almost daily headache.

Thank you for documenting this. I was wondering about making this temporary diet change permanent. Thanks for sharing your journey. I now have at least some idea what to research as opposed to before when I might just have been googling "I feel crappy". Blog on, girlie!

Michelle

 
At 7:55 PM, Blogger inmemoryofdoritos said...

I am not a blogger, in fact, this is my first post, ever. So, please feel free to correct any gaffes.

My sign in name says more about me than anything than I can say here. Nearly 40 and just diagnosed with Celiac (sp) disease. I am have always been fairly thin and have always been a carb lover along with a bit of a junk food habit. However, after being diagnosed four days ago and being "gluten free" since, I have to say, that I feel better and am using the inspirational words found on this site to look at this as an "adventure". I write mostly to say thank you for the fun and informational site.

 
At 12:21 PM, Blogger Lindsay said...

I know this post was from a long time ago, but it encourages me to know that I, too, might start feeling better soon. EGD results are still pending, but when I read what you've gone through, I saw myself. Clear as day. How did I never know? How did it take years and years of worsening symptoms, to the point where I thought I was a lunatic? As of tomorrow, my mom is going to come help me go through my cupboards, come up with a plan, and most importantly lend some much-needed support. Thanks for your encouragement and sharing your story. I only hope that I, too, can start living again.

 
At 5:41 PM, Blogger Tray7 said...

I haven't even been tested yet, but I am positive that I have Celiac. I just found out that my cousin's son got diagnosed with this recently. I started asking her about it and told her that I have similar symptoms. She asked me how I felt overall and when I told her all my issues she was shocked. She told me to get my butt into see a doctor right away because most of what I was telling her related to Celiac. Turns out that my grandmother and an aunt had it as well. I am excited and scared at the same time about this. If I do have it, it means I can feel better over all... but I love bread, pasta... you name it. I was diagnosed with degenerative disc deterioration in my lower spine a couple months ago and I am only 24. I have a sneeking suspicion that CD has something to do with it.
Anyway, thank you so much for this site, it helps us all out a lot.

 
At 3:45 PM, Anonymous Wanda said...

Hello Shauna,

I am wondering too if I might have this disease. I am so sick, here is just a short list of my ailments.

Extremely bloated stomach immediately after eating, back pain, side pain, insomnia, headaches, brain fog, feeling sick all the time, tired, irritable, depressed often, which isn't like me at all, severe constipation, etc.

I fell out back in January, broke my nose and almost killed myself falling and getting back up trying to help myself and falling again, I looked as if I had been in a bad car wreck. I was told back then that I had a very high white blood cell count and that I had blood in my urine. I went to get up that night, sweating, and passed out, my stomach when I looked in the mirror was hugh needless to say, and I vomited.

Well, I was kept in the hopsital, for a few days and then sent home, I was told they didn't know what happened, but only the diagnosis mentioned above, the elevated white blood cell count and blood in the urine.

Well, now four weeks ago I fell out again, this time I was sweating seriously, sick to my stomach, and had severe pain on the right side. Went to the hospital, had all kinds of tests, they checked me for kidney stones because I was in such terrible pain, right side and all along the front. Again, elevated white blood cell count, trace of blood in the urine, but nothing else they said.

Well, I lost my father suddenly a few months back, and I have really been sick with the bloating after meals, I don't mean just a little bloat, I am so blown up after eating, which has suddenly gotten worse. I personally think that the death of my father woke this slightly sleeping beast up, this Celiac think I mean. And now it is working against me fulltime, everyday. I just happened to find information about Celiac on the internet and from your accounts and others I feel like it could also be my problem.

I would love to hear back from you and find out your thoughts.

Respectfully, Wanda

 
At 6:52 PM, Anonymous Anonymous said...

I have not been officially diagnosed with Celiac disease. I stopped eating gluten before I could get a blood test but I am getting a DNA test that will confirm it. What a journey through the unknown! It is like travelling to a beautiful foreign country and losing a close friend at the same time.

I have litte snaffoos every once and a while that confirm that I have CD. In the beginning (all of a couple weeks ago) I had a french fry. Oh my gosh, my vision went first and then I couldn't get off the couch, and then my mood changed dramatically. All over two french fries!!

Thank you so much for this wonderful resource. I can't wait for your cookbook to come out.

Kyndale

 
At 7:31 PM, Anonymous Jeanne said...

Thank you. I sobbed when I read "the diagnosis" post. I am too emotionally raw to write much at the moment. After dragging myself to ER to demand some tests immediately because I was too exhausted to remain on a normal diet for another day. I am awaiting the blood test results. Meanwhile eating like there was no tomorrow, I feel so relieved and scared at the same time. It is daunting to think of my life changing at 47 but I have been searching for this for over 15 years(30?) and I am so emotional to be getting my energy back! It's like having a long lost friend that you'd all but given up on step back into your life; You kind of don't know where to begin! So much catching up to do!!!
Peace

 
At 10:35 PM, Anonymous Sturdy Blonde said...

I'm a 27 year old woman... one of these vibrantly healthy, absurdly strong rosy-cheeked Norwegian gals. Just by the shape of me people always think I'm happy and healthy.

This seemed true to me up until recently...although now that I think of it I've always been moody, and sometimes quite depressed... and had a real struggle with food in my life. I'm a comfort eater but also a bit of a binge-eater and have had bouts of mild bulimia.

For a long time it was this seeming addiction and addictive behavior that worried me. Now that I've read "Dangerous Grains" it seems like this behavior can be directly explained by the drug-like response my sensitive system has to gluten grains.

But at age 24 I got a bad cold that snowballed (after far too many round of antibiotics) into a year and a half long illness. Healthy athletic me, after several months of this, was too weak to even take a short bike ride. I was literally so fatigued I had to wave down a passing truck to take me home. This continued for months with severe headaches... full body hives and itching, total closure of my sinuses, among other symptoms. Myriads of tests and doctors were of no help. The best they could come up with is to recommend sinus surgery.

Long story short I started to recover going on the candida diet and eliminating wheat, anything containing sugar, yeast products etc. I had quite a full recovery.

Thinking that I had resolved my "yeast" problem I slowly reintroduced sugar and wheat into my diet.

A year and a half later I find myself moody, gassy, a little itchy, with a bloated stomach and loose, urgent stools.

I'm traveling the world for 12 months and find it a bit confusing and intimidating in terms of what tests to get. Also without a diagnosis, though it should be obvious to me, it is hard for me to really be strong and cut these things out of my diet.

Do you know any resources that will help me with a specific list of tests to ask for. I'm not sure how good the Guatemalan health care system is... so if I get tested here I really want to know exactly what to ask for.

Thanks for your blog, love for food, and enthusiasm for life. Way to go!

 
At 4:22 PM, Anonymous Anonymous said...

loving this blog and this post. i was diagnosed 3 weeks ago tomorrow. was BEYOND thankful to have been diagnosed as it would explain the last 4 years of tired/nauseasness. still feeling awful though but at least i know that know its not all in my head! hooray! and i know that not everyone feels better right away and i am trying to be REALLY patient as my screwed up insides get well soon. i.can.not.wait.
twill be amazing. thank you for the inspiration...

 
At 11:15 PM, Anonymous Laura Martinez said...

Shauna, I have NEVER written a blog before. I was diagnosed almost 20 years ago, when no one had even heard of celiac disease. I had to argue and bring my findings into my gastroenterologist's office before he would even test me. At that time, there was nothing you could purchase in any store that was called "gluten-free."

I want celiacs to know, too, that everything that is labelled "gluten-free" does not necessarily mean "gluten-free." I found this after drinking 'gluten-free' onion soup and becoming very ill. I contacted the company and was told that gluten-free guidelines allow for a certain limit of gluten to be included in products labelled 'gluten-free'! PLEASE still read ingredients, even if food is labelled 'gluten-free'!

 
At 1:14 AM, Anonymous Bree said...

I am so excited to have stumbled upon your page. I have been having some 'celiac' symptoms, which I believe were woken by a surgery I had 2 years ago. I have yet to be officially diagnosed. Still awaiting some blood tests this week, but it is nice to have something like this to read to make me more aware of what celiac disease is. If I am diagnosed, I will definitely be getting your book!

 
At 11:51 AM, Anonymous Danelle said...

Hi
I took the same journey two years ago. I suffered the symptoms for about six years before i got the right diagnisis. I was always halfay ill, i went to innumerable doctors, i was in and out of hospitals a whole lot. but i'm all better now! I'm 18 and i can live a normal life(without gluten. I am busy putting up a website with a few recipes. i hope i'm not violatig any terms by doing this but the website is www.freewebs.com/support4coeliacs the recipes are free an you can save them if you want to. I'm glad to know that i'm not the only one who went through this ordeal. good luck to everybody else out there.

 
At 8:18 AM, Anonymous Anonymous said...

Kathy said...

I was diagnosed with celiac 6 months ago. I stopped eating bread, pasta, soy sauce, but my systems are back even worse. Daily headaches, and mood swings, that come every few days, stomach problems, and tired. Is there a Natural path that anyone would recommend?


Frustrated!!!

 
At 4:14 PM, Blogger The Carpenters said...

WOW! I am so glad I found your site (I was ordering your book on Amazon.com). Your situation sounds similar to mine.

For over two years I have been in excruciating pain and in and out of the hospital with one test after another - kidney stones, gall bladder, fibroid tumors, cancer, etc. until they finally gave up and said here are your pain pills - we don't know what's wrong with you (why didn't they ever do the gluten blood test?!? Or even think of looking into it?!?).

Finally I went to see a nutritionist/chiropractor and after listening to my story, reviewing my diet he felt that I had Celiac Disease or Gluten Intolerance. After cutting gluten out of my diet I have been pain free for over 7 months!!!

I am still looking into all the causes and effects of the disease and figuring out what food I can and can't eat and what to cook (I love to eat, but hate to make it) so I love your pictures on your site and I'm working on improving my kitchen skills! Kudos to you!

 
At 12:12 AM, Blogger Alena said...

I am sooooooooo confused! :( For the past ten years, starting at puberty, I have had nothing but overwhelming physical symptoms of SOMETHING. Two years ago my cousin's sister-in-law told me about celiacs disease (she has it), and suggested that I might have it. I didn't get tested at the time because I didn't have insurance, and by the time I did, I had forgotten about it. Last month I was diagnosed with polycystic ovarian syndrome and hypothyroidism. I have multiple cysts on both ovaries, and though I have been off of birth control for ten month, I have not conceived (married). This diagnosis followed five months of increasingly severe symptoms that eventually cost me my job and my social life because I was in so much pain and so exhausted all of the time! Last spring, I had a severe case of influenza - we think that might have caused the symptoms to become so bad, instead of continuing to just be moderate and annoying, but not life ending though limiting (did that make sense?). Anyway, I stumbled across your blog and thought I'd pass it on to that girl I mentioned (she's always looking for new ways to live, if you know waht I mean), but I continued to read because I was intrigued by your style of writing. When I found this post I almost died - this is ME! So, next week when I get my thyroid rechecked I am going to ask my doctor to check me for celiacs disease. I was wondering though, have you heard of polycystic ovarian syndrome and/or hypthyroidism in conjuntion with celiacs? Any info you can give me would be VERY appriciated. I feel extremely lost and alone in all of this. All I really know for sure is that I want to enjoy food, feel better, and have children. I feel like all of that is threatened or gone right now.

 
At 7:05 AM, Blogger Ariel said...

I wanted to thank you for this post. My mom told me to look at this blog when I was first diagnosed a couple of months ago but I was so annoyed and frustrated with the thought of what my life would start to look like that I refused. Looking at this now, though, it helps so much to know that what I went through is common. I am the only person in my immediate world that has the disease so it helps so much to read about others dealing with it.

It's funny. All of those symptoms and tests you described were exactly what I had and went through. I was even asked about 17 times if I was pregnant. Thankfully this is becoming more common so it only really took 2 months for me to get diagnosed after my severe symptoms started. It really is inspiring to read what you have to say.

Thank you

 
At 6:53 PM, Anonymous Anonymous said...

I was diagnosed with Celiac in 1961 as an infant. Growing up my condition and eating habits were always greeted with amazement. I can only say that to anyone who feels really frustrated, the understanding and acceptance of various conditions (and the options now available for the Celiac diet in particular) are so vast now that from where I came from, it hardly seems like a problem at all anymore. I do appreciate that your site seems to have a good upbeat tone, unlike some "celiac" sites and clubs that I have run across online that try to make people feel like poor suffering victims who NEED some self proclaimed expert to guide them (usually for a fee, of course). Actually I haven't run across anyone older than me who has lived with this literally all of their lives. Anyone out there been living with celiac for 47 years?

 
At 8:20 PM, Blogger Shen said...

That sounds so familiar--the boon of energy within days, the spring back, the surety that THIS, THIS is how you are supposed to feel all the time, not dragging and lethargic!

I was diagnosed with bona fide clinical depression before my diagnosis, something I was predisposed to from my mom. Celiac comes from my dad. All my celiac tests were negative save the genetic. My wonderful doctor saw studies correlating depression and celiac.

Thanks for writing. :)

PS: I just added Celiac to Firefox's spell check!

 
At 5:03 PM, Blogger Cyndi said...

I love your blog. I started reading a month ago, someone to silently commiserate with. Not for myself but my 3 darling boys and husband, who between them, are allergic to everything. Gluten, chicken eggs, dairy, soy, petroleum (yeah, I know its not a food, but tell that to the food processors and manufacturers) peanuts, cashews, red dyes, so far.
I decided to start at your beginning because you inspire me. I was a foodie until I thought I couldn't be any longer. I've spent countless hours and money "experimenting" with alternative flours trying to bake up legal treats for my little boys. Thank you for your time and efforts.

 
At 8:19 PM, Blogger Sashia said...

I want to respond to Allena. I don't know if I have Celiac disease. It sure sounds like it. Starting at age 15 I used to have severe stomach pains followed by diarrhea. By 20 I was having joint aching and general aching episodes that were severe. I had a lot of tests done and was told I was crazy. At 22 I started having ovarian cysts. Polycystic, eventually causing a hysterectomy by age 27. At age 45, I had sudden and unexplained hyperthyroid episode which resolved itself without treatment. For the past 40 years I've suffered with bloating and gastric reflux, intermittent diarrhea and constipation. Lately, if I eat at all I feel like I'm 9 months pregnant. I have a daughter and granddaughter,that have had very similar symptoms.
I have no idea how I stumbled onto you blog but I'm quite grateful.
I'm sending a link to my daughter.

 
At 8:28 AM, Anonymous geri said...

I have several friends with celiac and it is possible to get through it. Hang in there! One thing that they all seem to have developed is a love for Chinese food :) (most items in authentic Chinese cuisine do not contain glutten)

 
At 12:29 PM, Anonymous Anonymous said...

I so understand the journey you have been on. I was not diagnosed for 2 years. In the meantime I became sicker and sicker. The diagnosis was depression...I was not depressed, I was sick! I was loosing weight, unable to eat, lost a ton of my hair, developed osteoperosis and teeth problems and literally thought I would die!

I am a RN and refused to accept the diagnosis of depression and began to perform my own research, sent a hair sample off for analysis. The results all pointed toward Celiac disease and low and behold, that is what I had developed.

I wrote a book about my journey, "A Journey Through Shifting Sands".

I am so glad to find your web site and your delicious recipes. I am glad you are improved and have the guts to stand up!

Mary

 
At 5:48 AM, Anonymous GlutenFreeMommy said...

I too have had many of your symptoms over the years. Along with a mysterious anemia, migraines, and blacking out when I was 3 which recurred during my 1st and 3rd pregnancies (When I was 3 I was diagnosed with lukemia which mysterously went away). A year before my third child was born I had migraines daily, terrible pelvic pain and ovarian cysts. I had one overy removed and was told I had poly-cystic ovarian disease, a pituitary micro-adenoma, and was treated for pre-diabetes. I became pregnant a few months later while on Metformin and just after being told I'd never have children again. My migraines and symptoms eased up till after the baby's birth but may have been masked by the other symptoms of pregnancy. After having my baby girl I had constant recurring infections and was diagnosed with PID and a prolapsed uterus. When my baby was just 9 months old I had a hysterectomy at just 28 yrs. old. That was when everything started to compound on me. I had terrible stomach pain. Sometimes so bad that it left me in the fetal position on the floor. The doctors then diagnosed me with surgical adhesions and told me to live with it. Then the mood swings started and the gas and bloating. Next I started having problems with dizzieness and blacking out (which I had problems with during childhood). I started catching every cold, virus, and infection that came near me, and was having trouble breathing and diagnosed with asthma caused by allergens in the air. I began to think I was a hypochondriac, and my doctors kept treating the symptoms and saying things were normal. I finally decided to get a second opinion. My new doctor diagnosed me with Lactose Intolerance, IBS, and a possible immune disorder that he thought might be lupus but tested negative. (My lymph nodes have been swelling up on and off for almost 3 years now, and become so swollen in my neck that I can't swallow and under my arms that I can't lay my arms down against my sides.) It wasn't until November when I came back to the office with a terrible stomach virus and migraines daily again that I came in contact with a doctor who was filling in for my primary care doc. She sugested trying a blood pressure medicine and creating a migraine diary. I came back in to see her for a follow up in December, and when we reviewed my diary we realized that the migraines had cut themselves in half and there was a pattern to when I would get them. It turned out that about 30 mins after eating any type of bread I would get one. My doctor suggested pigging out on whatever I wanted on Christmas day, and then no wheat or gluten after. She told me that it sounded like all of the symptoms could be a wheat allergy or celiac disease. I did as she said, and pigged out on Christmas day to get my cravings out as I love my carbs, and then stopped cold turkey. After Christmas dinner my stomach was so bloated I looked like I was 9 months pregnant, none of my clothes fit for several days, and I had horrible gas and diarhea. Needless to say I barely ate anything for a couple of days, but immediatly noticed that my migraines went away. After the stomach symptoms went away, they haven't come back at all. It's been 16 days wheat free and gluten free, and I've had just one migraine that appears to be from missing my blood pressure medicine the day before, and went away 15 mins after taking my med. My stomach problems have went away, my bloating and swelling have started to go away, and my complexion has started to clear up. The feeling of total exhaustion has went away, and I feel happy and have energy for the first time in over 4 years. I am now embracing the challenge of making gluten free breads, cakes, and cookies as well as pasta. I've even made a GF pound cake which I am so proud of. Although I haven't had the blood tests yet, I am pretty confident that it is celiac disease that has been rearing its head over and over again for my whole life and has been such a monster to me for the past 4 years. I have my energy back, and feel like I've been given a new lease on life. It is such a blessing to know I can control this with my diet, and that its not something far worse. I am working to make my whole family gluten free and cut wheat out in my childrens' diets. My son and all 4 of my nephews have severe ADHD, and I have shared all of the info I have found on the net about linking ADHD to Celiac disease. I am going to request the test for my son at his next check up as well. I am excited at the possiblity that changing his diet could aleviate the ADHD issues and possibly give us a route without having to take Ritalin. (He has been on it since he was 4 years old, and can barely function without it.) Thank you to everyone on this site for posting your stories. They just help to confirm to me what I am waiting to hear officially from my doctor at the end of January. Until then I'll be wheat free and gluten free.

 
At 12:28 PM, Blogger Swiss said...

I just went back and decided to start reading more because I can not get enough. I am almost all the way through your book which I do not want to end. I am learning so much and I am not that young- but like I think you said in your book, I never want to stop learning. I want to go on and on and tell you so much but for now I am just happy- happy and joyful I met you through your blog and book.

A couple weeks back I wrote on your blog and told you I want ot give you eggs- not sure how that will happen - I do live on Vashon.
Maybe someday it will happen - I can give you something back for all you have given/are giving me.

Charr

 
At 8:49 PM, Anonymous Anonymous said...

I am quite recently diagnosed and a first time visitor who's thrilled to have found your site. My CD comes as a suspected "trade down" of a 10-year-old diagnosis of multiple sclerosis. How I wish I had heard of celiac before last month... So I'm making the transition, reading everything in site, and randomly cursing the Food Network and all those things I'll never eat again... On the other side of the coin, a GF life is better than waiting for the MS shoe to drop me into a wheelchair. So I've lost cinnamon rolls but I've found quinoa. And kudos to the fine folks at the Austin Whole Foods flagship store for giving me better care than my diagnosing MD.

Wonderful site. I look forward to joining your lovely club.

 
At 5:10 PM, Anonymous Anonymous said...

Hi Shauna,

Liz recommended that I read your site and I'm so glad she did. I'm waiting for test results for gluten and dairy intolerance, but suspect gluten. I've been off of it for a week and actually slept through the night last night for the first time in a year. I believe that my pregnancy and c-section may have brought this on; needless to say it has been a long and very hazy year. I look forward to reading more on your site and thank you for so many helpful links.

Brynne

 
At 8:08 PM, Anonymous Carolyn said...

Thanks so much for sharing your experiences and your journey pre- and post-diagnosis. My journey was similar in that I was so relieved to have a name for the many symptoms and health problems I'd had for years. Like you, the stress of certain life events (divorce, work stress, intense marathon training) finally seemed to trigger a health crisis that I could no longer ignore. I was 32 when I finally learned I had celiac disease. Interestingly, one of my 3 sisters was diagnosed at 40 after a difficult pregnancy. On a brighter note, today I am able to help others with celiac disease in my work as a nutritionist and wellness coach. Celiac disease is the only condition where nutrition is both the cause and the only cure. I've devoted a page on my website to nutritional healing for celiacs http://bewellcoaching.com/be_well_for_celiacs so I can reach out to others both personally and professionally. Keep up your great work!

 
At 8:43 PM, Blogger Debra said...

Shauna, thanks for your wonderful blog! I tell everyone with "vague" symptoms to try a gluten free diet-it transformed my life!
I had been sick for over 30 years-fibromyalgia, severe allergies, severe depression, hypothyroid, perforated ulcer, constant pain, lack of energy, brain fog-you name it I seemed to have it-except no one could really diagnose my problem except for the fibromyalgia. I often wondered if I should just take the advice of well meaning people and "just get on with it"-Sure, as soon as I get some energy I'll get off the couch and go for it. My children grew up seeing a mother who was too sick to participate in much of their life, hurt too much to be touched and was a crazy woman much of the time.
My daughter called me one day and said "Mom, I think this is what's wrong with you. In fact, I think this is what's wrong with the whole family". She has severe thyroid problems.
A year and half later and I feel like I have a new lease on life. All those problems I listed? Gone!! Like they never happened. I have gotten more done in the last year than in the last 10 years! I can think again! I'm off my thyroid meds-simply not needed anymore. Ulcer is healing and so am I.
I am living my life for the first time and am really grateful for a wonderful blog like yours! Thanks so much!

 

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