No popular authors found.

Categories

No categories found.


Join Celiac.com's forum / message board and get your questions answered! Our forum has nearly 1 MILLION POSTS, and over 62,000 MEMBERS just waiting to help you with any questions about celiac disease and the gluten-free diet. We'll see you there!






Follow / Share


  FOLLOW US:
Twitter Facebook Google Plus RSS Podcast Email  Get Email Alerts

SHARE:

Popular Articles

No popular articles found.
Celiac.com Sponsors:

I Dream of Bagels: A Personal Narrative about Being Diagnosed with Celiac Disease

This article appeared in the Winter 2008 edition of Celiac.com's Scott-Free Newsletter.

Celiac.com 07/19/2008 - When I was 6 years old, I lived in Dallas, Texas, and I had a best friend named Judy. It was at her house that I first ate a bagel. I fell in love with its chewy, crusty texture. I didn’t know much at that age, but I knew that I loved eating those bagels – I couldn’t get enough.

I also knew, from a very young age, that something was wrong with me. Something that they would one day discover and name after me. I had stomachaches all the time. I can’t remember a time when my stomach didn’t hurt at least a little bit.

“You were so healthy when you were young,” my mother is fond of saying. Painfully shy and uncomplaining–yes. Healthy, no. We were just blissfully unaware of what lay in wait for future doctors to discover.

In high school, I was anemic, and experienced several bouts of tachycardia that were written off to anxiety. And then after I was married, I twice struggled with infertility. Later, the “stomachaches” returned and worsened and doctors removed my gallbladder thinking that stones were to blame and then my uterus thinking it might be hormones causing my symptoms.

Along the way, in trying to diagnose me, doctors discovered insulin-dependent diabetes, low thyroid and high cholesterol. I also have bipolar disorder. I take a combination of 13 medications a day for my health maintenance, and I’ve been to the hospital at least 18 times in the past year. But still, I felt that they hadn’t hit upon that one thing that was really wrong, that was causing my stomach to hurt so badly.

Then, two years ago, I had added “severe bone pain” to my ever-growing list of symptoms and went to see a rheumatologist. He refused to believe it was a simple case of arthritis and tested me for malnutrition. I had no Vitamin D in my blood – a tell tale sign that something was wrong with my gut. Next came the antibody test and then a biopsy that proved that the tiny villi that lined my intestines were indeed “flattened.” We had a diagnosis after only 10 years of actively seeking one. I had celiac disease, an auto-immune disease where you can’t digest wheat or gluten, the wheat protein.

 “What? I can’t eat bread? I can’t have bagels?”

I was sure I would starve to death when I heard that this removal of all glutens from the diet was the only treatment for the disease whereby the lining of a person’s intestines is badly damaged. If left untreated, it can lead to things like malnutrition, brain ataxia, osteopenia, and eventually a cancer called lymphoma.

More specifically, what was happening was the lining of my intestines was shriveling, shrinking in reaction to the gluten in the bread or other products made with wheat. The damaged intestines repair themselves with the removal of gluten from the diet, but it must be strictly adhered to for life. Even the smallest taste of wheat or gluten would immediately return my villi that line the intestines to a flattened mass. 

At first I was afraid to eat anything. All day long, gluten loomed at me from dark corners. At night I dreamt of bagels and pizza.

The problem is that gluten is hidden in many foods. Obviously it is in bread, bagels, pizza, pasta, most fried foods (all wheat flour-based products) but it also is in many processed foods like canned soups and salad dressings, ice creams, foods made with caramel color, malt, barley, rye, HVP, spelt, and the list goes on. It also means that I must use separate utensils to butter my gluten-free bread, separate pots and pans to cook my food and separate colanders to drain my corn or rice-based pastas. Even certain toothpastes and lipsticks are suspect.

To have celiac disease means that you no longer can rely on that convenience factor of ordering take-out or eating fast-food. It means that you have to be prepared each and every time you eat, bringing with you sauces and dressings, buns and breads.

You learn, too, that part of the reason bread is bread is because of the gluten. It is what holds it together and gives it its chewy texture. Breads made from rice and corn and the like are mealy and fall apart. They must be kept frozen and then toasted, and even then are just not the same.

Eating out is risky. You must carefully research a restaurant before you go, finding out if they offer any gluten-free foods and usually speaking to the manager and the chef. I usually go to one of two restaurants that I know to have gluten-free menus. Even then you risk cross-contamination or accidents. The other day, I found a crouton in the bottom of my salad bowl. This can be disastrous to a person with celiac disease.

It signaled all things dark and dastardly, and sure enough, later that night, it started: a gnawing, a clawing from the inside out. Something akin to severe hunger but more raw than that. Then it settled in the pit of my stomach and churned into a piece of broken glass. A reaction to gluten can feel as though every time you move you’re stabbed by a shard of glass until you’re bleeding from the inside out. This can result in severe projectile vomiting and other gastrointestinal symptoms that are mostly unmentionable.

The Other Celiacs
There are those people who have celiac who are really upbeat about it all – perky even. There are also celiac patients who have mild or no symptoms of the disease. I’m not one of them. They will tell you that we are among the lucky ones, the ones who know they have the illness, the ones who have been diagnosed and now have all this healthy good-for-you food at our disposal. They laud the nature of the illness whereby the only treatment is dietary and does not require surgery or other invasive means. But if you ask me, I would much rather have one surgical procedure that would “cure” me and be able to digest wheat the rest of my life than to have to make such a lifestyle overhaul. To have celiac is to be socially awkward at best and to be in constant pain at worst. It is not something one wishes to have.

The worst part is no one (other than another celiac sufferer) understands, from the family member who wants you to try “just one bite” of her homemade streusel to the restaurateur who mistakes white flour for a non-gluten product because it has been “bleached” to the medical professional who thinks it’s a simple allergy rather than an auto-immune disease. The lack of awareness of celiac is astounding given that nearly two million Americans are said to suffer from it.   The problem is it is widely under-diagnosed. One in 133 Americans are said to have celiac disease but only one in 2000 knows they have it.

Lack of Awareness
When we are little kids, we are taught that doctors are there to help us. I have very few doctors who actually help me. I had one doctor -- an endocrinologist – say that they would figure it all out at the autopsy. To have a chronic illness is to realize that there is no cure. You will not be cured. You will learn to live with some amount of pain and illness.

This lack of awareness of the disease and its effects even among medical professionals is unnerving. I’ve shown up at hospitals vomiting blood, writhing in pain with blood pressure so low I should be crawling yet I’ve been told nothing was wrong with me, that all of my blood work was “perfectly normal” and therefore I should just go home and rest.

Of course if they had checked my gluten antibodies, they would have found that they were twice as high as was normal, pointing to an accidental ingestion of gluten, which sent my body into a tailspin of auto-immune hell. Yet there is no “auto-immunologist” to which I can turn for help.

What’s even more frustrating is that celiac disease is not a rare illness – it is estimated that it could even affect three million Americans!

Lessons Learned
I dream of bagels that I can digest that taste good. I dream of hospitals where treatment comes without scrutiny and care comes with respect.

 And I dream of a place I can go and be welcomed where “everybody knows the name” of celiac sprue. A place where people understand that it is not a simple thing to just “eliminate gluten” from one’s diet as gluten – the wheat protein – is in many, many foods, some obvious, yes, but many hidden, too.

In the meantime, I’m learning to eat to live and not the other way around. And I’m enjoying the simple things in life – the friends who will drive far enough to find a gluten-free restaurant; the same friends who won’t devour the bread basket in front of you!

Celiac.com welcomes your comments below (registration is NOT required).



Related Articles




Spread The Word





43 Responses:

 
Lisa
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
25 Jul 2008 2:32:06 PM PST
I really enjoyed your article! I feel exactly the same.

 
mary casey
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
27 Jul 2008 5:12:22 PM PST
Your article described me and my twin sister perfectly , so much that it has given us hope. I just found out that I have celiac disease due to some major problems this past year. So she and I have been researching the symptoms, Now I am convinced that she does also. she has always had severe problems with her bowels since we were children more so than me. Today she is malnourished, anemic with thyroid problems. She is terribly underweight and her stomach is bloated daily with constipation. But the most interesting thing in your article was the severe bone pain. She has had 4 surgeries to correct her neck shoulder and elbow but it seems like nothing helps. She is and has been in extreme bone and nerve pain everyday now for about 3 years now. Please let us know if being gluten free helped relieve the bone pain and if so how long did it take?

 
Barbara
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
31 Jul 2008 6:59:39 PM PST
I am so sorry that you are having to deal with desire of bagels. I too, loved bread. I loved homemade bread, hot from the oven and butter waiting. It was a passion. My daughter and my granddaughter have Celiac as well. My granddaughter (age 9) remembers just how yummy pizza was, but she knows that she does not want the belly pain. Thank you for sharing. Barbara

 
Diane
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
31 Jul 2008 7:42:37 PM PST
Bummer, but it was diagnosed. Now deal with it and move on. It's not cancer.

 
Roberta Wall
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
31 Jul 2008 11:00:07 PM PST
I identify completely with your frustration that gluten is hidden everywhere. I miss being able to eat anywhere and to eat everything. I hate being a 'pain in the neck' every time I enter a restaurant, and since I've never really learned to cook, I hate being forced to eat my own cooking just to be safe! We lose the ability to be spontaneous -- everything has to be planned in advance. I, too, long for the day when all restaurants and markets offer safe selections for us!!

 
Stevie Krut
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
01 Aug 2008 4:15:40 AM PST
I understand how frustrating the lack of awareness by the medical profession can be and how difficult doing without a favorite food is, especially when it involves either family traditions or childhood memories. My Sunday mornings were given back to me by a gluten-free backing company. The bagels I remembered are the bagels they sell. You can't tell the difference between them and the wheat bagels except you don't have to go out to get them on Sunday morning.You just put them in the oven I hope you can satisfy your own bagel dreams again.

 
DEB
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 6:31:00 AM PST
Thank you for this article. I thought I was reading my autobiography. I experienced so much of the same symptoms.

 
Bill Kay
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 6:31:30 AM PST
31 years of incorrect diagnoses (IBS, colitis, etc.) and then a fine doctor ordered an endoscopy when I demonstrated some anemia at a blood drive. Voila`. Celiac. My angel wife immediately bought a Gluten-Free cookbook and I have never been deprived of any of the joys of fine cuisine. Her English Muffins would make old man Thomas blush with shame. BTW, maltodextrin, if made in this country, is Gluten-Free according to the FDA.
Good luck! It doesn't have to be a problem anymore!

 
Roxanna
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 6:49:45 AM PST
I have severe pain in my bones and muscle when I eat gluten. I do better when I do NOT eat gluten. I have a lot of problems now that won't go away. If at all possible you need to get off of gluten to stop the problems before it is too late. I suffered a long time. Even seizures. I was told I was faking them and sent to a psychiatric ward twice to see what was wrong with me. I wasn't treated well in any hospital I lived in. I missed a lot of holidays and birthdays. You have to stop it before it gets too late. It is a nightmare to live. If one doctor won't help you, go to another.

 
Cathy
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
01 Aug 2008 6:57:23 AM PST
While I don't suffer from celiac disease, I am highly allergic to gluten, potentially fatal. I feel for you about eating out, reading the ingredients on whatever you buy to eat, and especially, the ignorance of people. People who tell you that you are so strong not to eat whatever. I don't have a choice, my life is a stake. Just yesterday I stood in a shop looking at all the pies, rolls, tarts, etc, thinking that I would never eat that again in my life. However, time has taught me to be grateful that I can lead a normal life, I can walk, I can see, I can work. Eating becomes of secondary importance, as long as I am healthy and alive. Good luck to you - I hope you stay healthy and pain-free.

 
Laura Hatfield
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 9:45:09 AM PST
A very well written, if negative article. I understand it comes from your heart and I do know how difficult the whole lifestyle change thing is. (I shed a husband who was NOT helpful) however, you do not speak of the absolute relief that being Gluten-Free brings (you may not have been Gluten-Free long enough to experience it). It is hard for me as a single woman, but I find that the people I meet who are truly caring folk step up to the plate (pun intended) for me. So in a way it is a great litmus test to see who your true friends are!
Best of luck to all of us as we move forward...the good news is that even main stream grocery stores are marketing Gluten-Free foods...so hope is just around the corner :-)

 
Jennifer
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 11:25:19 AM PST
Hi,
There is a product out there called 'Glutagenics' by a company, Metagenics. It contains glutamine, licorice root, and aloe and aids in restoring the intestinal lining which would hopefully minimize those bleeds you write about. I have wasted hundreds of dollars on useless supplements, but this stuff truly helps improve absorption and overall health on the gluten free diet. You can Google it, or get it through a local chiropractic physician (they may only sell to health care providers). I get mine from my chiropractor.
I hope this helps,
Jennifer

 
Kerri Wartnik
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 12:01:50 PM PST
After years of tears and painful adapting, the celiac disease in our family has become a blessing. My three daughters have it, along with my husband and perhaps myself. My daughter and I suffered from terrible bone pain for years, and we discovered it was not the celiac (although it may be the original cause), but a corn allergy (my daughter) and corn intolerance (myself). Already one daughter has a severe dairy allergy. On top of celiac, these realizations were devastating.... However, we have come to embrace our gift. For it is a gift. I was suffering from depression and bipolar tendencies (never diagnosed), and saw my children following suit. But with our change in diet, now that we are free of gluten and even corn, we are rejoicing everyday with health and real Happiness. The kitchen is an outlet for our creativity, and although we must say no to so much our society indulges in, we are very glad of it now. We are more than content. We feel free and at peace. We are more busy than many, but we are so rewarded. We would not go back to our old lifestyle for anything... even if it didn't include the results of celiac! It is good and right to grieve the losses and face the pain, but coming to acceptance is the goal. This lifestyle is more wonderful than I could have ever imagined. Pizza and bagels are a small exchange for what we've discovered in the world of eating well. God has been sweet to us as we've submitted to His strange plans.

 
Jay Rood
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 12:11:17 PM PST
Great article! You write well.

 
Angela
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 12:15:36 PM PST
I can relate! I am one of the 'silent' celiacs who doesn't have the classic symptoms. For one thing, I'm overweight - and couldn't lose for anything! I also have had severe trouble with anemia, bone and nerve pain, thyroid disease, infertility, and low blood pressure. (Not so silent after all, huh?) But because I didn't fit the image of an underweight celiac patient, I wasn't diagnosed until age 35. After living Gluten-Free for two months, I've lost 15 lbs. The lumps on the back of my neck (swollen lymph nodes) are gone. My bone pain has disappeared. My anemia is tons better - I've gone from needing transfusions to actually giving blood!

Thanks for writing an informative article that raises awareness, and thanks for sharing your story. It is nice to know that I'm not the only one out there.

 
valerie behrens
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 12:24:36 PM PST
I related to your article and found it very interesting that we celiacs have so many problems with our health care providers, when is the medical community going to start learning about the symptoms of celiac? It took me 4 very long painful years before I was diagnosed.

 
Alisa
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 12:54:39 PM PST
Excellent article! I was ill for quite awhile before finding out that I had celiac disease. This disease was bad enough for me, as I loved making homemade breads for my family, friends and co-workers, but I found out I am also allergic to eggs, milk and a few other foods. The first time I went to the grocery store after finding out about my allergies was a nightmare and very depressing.
I can relate to your experience of the medical profession and the lack of awareness of this disease. I too, along with I'm sure many others, have experienced this also unfortunately. It felt like I was on that show 'Mystery Diagnosis' on Discovery Health Channel. What a horrible feeling it is. One no one should ever experience.

 
margot
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
01 Aug 2008 2:46:31 PM PST
Great article !! Good to hear the truth about this tricky disease. Also I feel less 'lonely' hearing other patient's experiences. Sometimes, I am quite upbeat, too and then, I can become a bit despondent. I feel a social group like people online , here, is very very helpful and psychologically healthy. I'm 60 yrs old and diagnosed 6 years ago, after tackling it seriously for about 6 years. Best of luck to everyone and thanks for sharing !

 
John
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
01 Aug 2008 3:22:05 PM PST
Thanks for sharing your story. Like you, I've suffered from poor digestion and stomach discomfort most of my life. In my adult life I've also suffered from osteoarthritis and loose bowels. I'm now in mid-50's, chronically underweight, with low blood pressure and constant fatigue. But I've been experimenting with diet for 11 months and I've found that by avoiding wheat, barley/malt, rye, oats, soy and corn I can maintain better digestion, virtually eliminate arthritic pain and bowel problems, and marginally improve my energy levels. I now eat lots of buckwheat, rice and millet products, plus meat, fish, eggs, veges and fruit. My health is gradually improving and I'm positive about the future. Good luck to all who're struggling against Nature's little imperfections!

 
Holly
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 3:37:27 PM PST
I hear you. I'm struggling with keeping myself and my 5 year old on a gluten free diet. It's not easy. I had to talk him out of a pretzel the other day. He wanted it so badly, but I reminded him of how bad it would make him feel if he ate it. I really felt bad for him. Eventually and reluctantly, he gave up the pretzel and settled for some gluten free raisin bread.

 
alison hedlund
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 5:11:05 PM PST
Most excellent article. My son recovered from the most severe effects of celiac disease after 8 to 9 months. For him it was asthma.

 
Joanne
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 8:20:20 PM PST
What the author went through before being diagnosed was typical of many celiacs. I was almost 60 and was fortunate to have the first 'red flag' from the Red Cross when I became persistently anemic. Then, in spite of taking calcium supplements for over 20 years, showed signs of osteopenia. Fortunately my new GP had a wife with celiac disease and started the testing process. And yes, my mother remembered me as a healthy kid - one with aches and pains from infancy on.
Anyway I'd rather live with my celiac restrictions than have any of the diseases I might get from ignoring it!

 
stella
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2008 9:46:09 PM PST
Reading this I could see my daughter--she has celiac and we just recently found out after 4 years she was very low on vitamin D. Her thyroid doctor put her on vitamin D for 6 weeks now she said she feels a lot better with the joint pains her GI doctor never tested her for this. she gets low on potassium and a lot dehydrated even though she probably drinks 20 bottles of water a day all she drinks now. she found a gluten free bagel that she warms in the microwave and eats it for breakfast or uses it as a sandwich bread. She loves them. good luck with your progress in the future.

 
Rachel
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
02 Aug 2008 12:32:47 PM PST
Wow, your article was really good. I know what you're going through when it comes to having to eat gluten-free. It is a real challenge, and it feels like the rewarding non-sick moments don't come as often as you'd like them to.

 
Barbara Vivian
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
02 Aug 2008 8:09:26 PM PST
Another celiac who lives your life! I was diagnosed with celiac about 3 years ago at age 43. I had no symptoms. A yearly physical showed a zero level of iron and my nurse practitioner (not doctor) put me on iron pills. When the levels did not change she sent me to a hematologist. They suspected lupus or celiac. I had never heard of celiac and didn't think much of it. I sat once a week in an oncology unit getting iron transfusions for two months. After an endoscopy, biopsy, etc., I was diagnosed. I did not adjust well to this new diet and my doctor's reply was 'I guess you will have to change your diet'. I considered him a moron. This diet changes your life. It effects your family, friends and your everyday existence. I probably would have been grateful for this diagnosis if I had severe pain, diarrhea, constipation, vomiting, etc., but I had nothing. I wasn't sick. It has been three years and I hate this diet just as much today than I did when I got it. I don't like the constant explanation when I go out to eat. I hate that it dictates where I go to eat with my friends. That I have to continue cooking for my family the things that I would love to eat. Let's face it, not having a bagel, a bowl of Honey Bunches of Oats w/Almonds, pancakes, or an English muffin for breakfast sucks. Having your family cook a turkey with no stuffing inside and having them all suffer because you can't have it sucks. Not having the chocolate cream pie after, none of this is good. Yes I am grateful I do not have cancer, that I am not blind, etc., but boy I sure do feel ripped off. Luckily my children have not tested positive for this disease that literally came out of nowhere. I only hope it does not pass on beyond me. All of this negativity and hatred from me, and I am medicated. Some days are better than others. Hopefully, someday soon, all canned and boxed products that are gluten free will be listed with a readable label stating the same. I hope some day I come to peace with this thing, but it ain't today!

 
Clint
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
02 Aug 2008 8:30:30 PM PST
Amen sister!

 
Dr. Eydi Bauer
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
02 Aug 2008 9:41:32 PM PST
You are not alone! I am a doctor with celiac disease (diagnosed 4 years ago) and I am dedicating my practice to uncovering the other 2.8 million sadly misdiagnosed celiacs.
I enjoyed your article, you write well. I am about to publish my first book on the subject of gluten intolerance. The awareness is growing and you will be healthier from here on in.
Dr. Eydi Bauer

 
Elaine
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
03 Aug 2008 7:09:30 AM PST
I was diagnosed with celiac 2-1/2 years ago after years of severe anemia. I did not have any other symptoms--no stomach aches, etc. I loved whole wheat products. I received my diagnosis, cried all the way home and went cold turkey on a gluten free diet three days later. It was right before my birthday, thanksgiving and Christmas. I gained 15 lbs. in the next few months because my homemade fudge was gluten-free....while all the other holiday goodies were not. I now have a row of gluten free cookbooks. No one eating dinner at my house would suspect a problem. My daughter prefers my gluten-free pizza to the one I have always made. I make ciabatta buns to take on trips for sandwiches and burgers. Life goes on!

 
Esther Harder
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
03 Aug 2008 9:04:47 AM PST
Very interesting article and I sympathize completely. I was diagnosed with 'gluten intolerance' over 30 years ago after growing up with 'stomach aches', or as my mother's diary's state 'E is sick with that mysterious illness again'! Included wth the stomach aches was severe joint (knees) pain. As I got older most doctors suggested that I visit a 'head doctor' since there was nothing wrong with me. It took a teaching doctor in Albuquerque to diagnose my situation, and I immediately removed all known gluten from my diet and wonder of wonders, started getting better immediately. (Of course, for the first year I was afraid to fix anything, since then I have gotten very creative with foods!) All of that to say, there is light at the end of the tunnel.
It has just been in the last 5 to 10 years when there has been gluten free products on the market that are edible. Interesting, while traveling in South America and Europe over the last 20 years, it has been easier to eat gluten free there than in the US!
One thing for me is that I cannot go into bakeries, and I studiously avoid the bread and bakery area in grocery stores, also I avoid the high baking times in grocery stores, all of this to avoid the symptoms of celiac. I have discovered that eventually the desire for wheat products disappears, but it isn't easy.
Hang in there, living 'gluten free' does get easier with time. We eat out, eat with friends, I always carry 'emergency rations' wherever I go and friends are very understanding, most consider cooking 'gluten free' a fun challenge!

 
Janet
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
03 Aug 2008 7:38:26 PM PST
Thanks to everyone who has written me and posted here! There have been so many responses I can't even answer them all. I have been humbled by all who have written, by all who struggle with celiac and gluten intolerance. I no longer feel alone! I also have recently moved more toward acceptance of my illness... please keep writing!

 
Marilyn Brookes
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
04 Aug 2008 2:04:01 PM PST
It disturbs me that you sound so depressed. Finding out I am celiac and what to do about it has given me a whole new lease on life. I don't hurt, I can stray more than a few feet from the bathroom, I have more energy than in years... I could go on and on about how good I feel.

The funny part is that I am a real foodie. Eating is my hobby. So how do I handle it? At home is no problem. I can make most of the things my family & I enjoy without gluten. Eating out is a bit difficult, but I have found, with very few exceptions, restaurants will really strive not to make you sick. (Can you say lawyer?) So, I go anywhere, within reason, and eat well.

Try to look at the bright side. Maybe your bipolar medication needs adjusting.

I hope you will find a way to be happier.

 
Dorothy
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
04 Aug 2008 11:39:03 PM PST
My experience was different; but I have learned so much from your writing about your difficulties before your diagnosis. People should also be vigilant for how teeth are affected as in my case I had calcium resorption, wherein two teeth were removed even though I was checked twice a year. It occurs below the gum line and is out of sight.
The cook book series by Betty Hagman has been valued and helped me to learn to adapt my own recipes.

 
Janet Wagner
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
05 Aug 2008 6:52:52 PM PST
I read your article and while it was very well written, I felt that it is time for you to stop complaining. I was diagnosed 4 years ago and miss many of my favorites. However, after spending ten sessions in a chemo lab getting iron infusions (due to almost no iron in my system from undiagnosed Celiac) I looked around at people getting chemo and felt that I had little to complain about. Stop moaning and realize that your glass if half full!!!

 
Claire (UK)
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
09 Aug 2008 9:55:44 AM PST
I am a nurse, and was diagnosed 3 months ago. Despite my medical training, I knew very little about Celiac Disease, and have been busy learning ever since!

I have been dreaming of biscuits (cookies) and sandwiches, and refusing them in my dreams! I never dreamed about them before I couldn't have them....

I guess it's a learning journey, and I get frustrated and annoyed at my lack of choice, but hope that in time it will become a natural thing. I hope when my energy returns 100% and my anemia is corrected it will all be worth it. Keep speaking out and lets' change the way labeling in the US and UK is done!

 
Kathleen
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
10 Aug 2008 8:20:29 AM PST
I agree with your testimony in living with celiac disease.

I suffer with Dermititis Herpetiformis and I must have gotten some cross contamination in a Wendy's baked potato that I ate last week. (Sorry, Wendy's)
I loved eating your food before my diagnosis. I have eaten baked potatoes before this week and did not suffer this reaction. I am sad knowing that now I am without anywhere that I can safely stop and eat if I am on the go.

Today, I am laying here in my bed with ice on my neck trying to rid myself of yet another migraine headache that ruins my entire day whenever I ingest gluten.

No, it's not cancer as one of the comments was clear to say. I thank God for that, but saying that to a person with celiac disease is very insensitive and rather cruel, your comparison is trying to diminish the pain and suffering that we have endured and this is certainly not fair.

If you are celiac sufferer yourself, I can hardly believe that you would say something like that to a fellow sufferer of the disease.

Saying something callous like this to someone who has a disease of any kind, no matter what it is, makes you seem very cruel and indifferent.

If you think that we are dramatic, try living with this illness for 12 years, undiagnosed, like I did, when I finally found out what I have, I was overjoyed to know the source of my affliction.

It may sound crazy to someone who has never gone through this kind of misery, but I feel liberated now that I know. I have a diagnosis and I can finally help myself to feel normal and well again.

I have good days and bad days, but I am grateful to God for giving me a way, through diet and perseverance to combat a rare skin disease and over all a very difficult medical condition to deal with. I have other health issues from this condition as well as this which complicates things

Dear Celiac Brothers and Sisters,

You are in my thoughts and prayers, stay strong and let God help you to have peace and joy even when you are having it tough.

May God Bless you!

Kathleen


So please if you are out there thinking that celiacs are just cry babies who complain too much, try walking in our shoes for a few days, let alone 11 years begging God to please show me what is wrong....

 
Dorothy
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
11 Aug 2008 4:37:55 PM PST
Stop complaining, accept it, realize all the food you can have, and move on. There is always someone worse off than you.

 
Mary
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
12 Aug 2008 4:19:54 PM PST
I agree with you! Thank you for sharing your thoughts and pain. I discovered my gluten intolerance after a relative was diagnosed. I read up on everything and noticed my symptoms were the same. One noticeable symptom was pain, mostly joint pain every single day. My doctor said I probably had arthritis. Only in my 50's, I was feeling old and tired. After going on the gluten-free diet, my joint pain stopped after only about 2 weeks. Fabulous! I hope it is the same time frame for you. With respect to the bagels, I was dying for that taste again, too. After a year of longing for bagels and that wonderful 'crunch', I discovered it in the frozen section of a store. They're frozen whole, but just defrost one in the microwave about 30 seconds, cut it in half, and toast the two parts in your clean toaster for a couple of minutes. Top with the cream cheese and jelly -- yum! Just like before! You shouldn't have any trouble finding them!

 
Kathy
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
12 Aug 2008 5:39:31 PM PST
I can identify with this. I couldn't find a doctor who would test me. I was sent to a psychologist, diagnosed with anorexia, tested for gall bladder problems, tested for fertility, diagnosed with IBS, treated for psoriasis, taken allergy shots every day for 2 years and still kept loosing weight. My husband put me on a liquid diet for a week and then started adding one thing at a time. When we got to anything with wheat/gluten I got real sick again. When I told my physician he told me I didn't need any test and to just not eat wheat. I learned how to make a good bread that is like an English muffin. Getting groceries takes longer since you have to read the whole package. Eating out is very limited. It is real hard to make people understand. It's kind of like trying to feed a diabetic candy. A diabetic would get sick and possibly die. It may take longer for us but the same goes and some people need to treat it more seriously. 'Get over it' isn't what any of us really want to hear. Thank you for your article.

 
Marilyn
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
23 Aug 2008 6:53:18 PM PST
I was lucky to be diagnosed not too long after the onset of symptoms, thanks to a nurse who recognized the symptoms. The first few months I think I lived on rice cakes and peanut butter, but gradually learned to shop carefully and through the internet found many companies that produced foods without gluten.

I'm glad you finally were diagnosed and now can enjoy life without the risks, but I must take issue with one statement at the end of your story. You don't like it when your friends 'devour the bread basket in front of you.' I used to love bread, and I miss the good breads with that marvelous texture, but it doesn't bother me at all when my dining companions enjoy the bread basket. I know the pain and other issues that follow if I were to taste the bread, and that's enough to make me stay away from it. I love smelling fresh bread, and I love that my friends enjoy dining out with me even though I have dietary restrictions. I find that going to any nice restaurant at an off hour allows me the chance to talk to the manager and the chef and they are happy to prepare foods that are safe for me. I guess I must be one of those 'upbeat' celiacs who feels that now that I know what I'm dealing with, I can deal with it, and move on to the best part of life.

 
Susan
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
09 Sep 2008 7:49:06 AM PST
You have said everything I have wanted to shout from the rooftops!!! Fortunately I had a nurse friend who diagnosed my symptoms. After ten years of the physician medical maze, and many, many, many debilitating years of my life!!! How do we get the word out sooner?

 
James
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
24 Oct 2008 8:30:18 AM PST
I think Diane's comment is a little harsh. Of course, it's not cancer but as someone who has celiac and not cancer either it's comforting to realize you're not alone. This is celiac.com not cancer.com. The pain and discomfort is real to her and she's simply expressing herself for the benefit of others. To belittle someone because they're not suffering worse is not fair. I can only assume you have neither celiac nor cancer. I hope you don't.

 
Sue
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
15 Jun 2009 10:35:09 PM PST
I too think Diane's comment is a little harsh. I have cancer and have recently been diagnosed with celiac disease. As part of my treatment for cancer I underwent multiple surgeries, 12 months of chemotherapy, 6 weeks of radiation therapy, followed by another 12 months of chemotherapy. While you can't compare the two diseases (cancer - celiac) treatment for cancer doesn't give you a choice what you get to pass through your digestive system...it all gets vomited up...with celiac disease you just have to have the willpower of steel to stick to the gluten free diet. I have always loved home baked breads, biscuits, scones, muffins etc and I too am dreaming of bagels!!!

 
Susan
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
21 Aug 2010 3:04:11 PM PST
Are you sure you "had no vitamin D in your blood"? Finding a better way to state that you had severe Vitamin D deficiency would be more effective. Similarly, I'd like to see clearer information on your hysterectomy. If you're providing medical information, specificity matters.




Rate this article and leave a comment:
Rating: * Poor Excellent
Your Name *: Email (private) *: