Telling Your Story

If you are newly diagnosed with celiac disease, or maybe something else, I hope that you will read at least the first paragraph of my story. Before I wrote this, I was brought to tears many times while reading about celiac disease, or sitting in a support group meeting listening to information about it. I didn’t cry because I was upset that I had the disease. I wasn’t really sure why I was crying, but I do know that writing out my story was the solution. I didn’t cry again, and I haven’t actually shown this to anyone until now. You don’t need to read my story, but it’s likely that you do need to tell yours. Maybe writing it out will be enough for you, or maybe you need to find someone who will listen to all of it. I’d be happy to read your story if you would like to email it to me.

My Celiac Story (as written in 2001)

In her book Against the Grain, Jax Peters Lowell says, “You must tell your story, as I have told you mine, over and over again until you no longer need to tell it. Unfortunately, that may take a little longer than the time allotted to you by others.”

I know I still have a need to tell my story because I have been telling it in my dreams. Out of a desire to not bore people or sound self-absorbed, I don’t tell my story, or I abbreviate it. But in my dreams I tell all the details. It doesn’t matter who I’m telling it to, I’m just telling it to whoever happens to be in my dream. Today my hope is that writing out my story in detail will be more satisfying. I don’t care if anyone reads it, though I hope that some day my children might be interested in it.

September 30, 1999:

My dear mother in law died in the early morning hours of a cancer called soft tissue sarcoma. It was a difficult, ugly battle.

My cousin’s wife, died in the early morning hours of lung cancer. She left a husband and two daughters around the ages of 11 and 15. I was not close to her, but such an early death is always a sad thing.

Both deaths were expected, but that does not make them any less sad. What I did not expect was that they would die within hours of each other and that I would have to deal with the blow of the news back to back. I believe that the grief and emotional stress of that day was the trigger for my celiac disease.

October 1999 – June 2000:

Sometime in October I committed myself to more regular exercise and eating less sugar (in part because I was lacking energy). So, it didn’t surprise me too much when I quickly lost five pounds. My weight stayed the same until about January. Then during the next six months I gradually lost about another 4 pounds.

July 2000:

Early in the month we went to a church conference. It was held on a college campus and we ate in the cafeteria, which is always a challenge in self-control. There were way too many food choices. I was determined not to overeat, but still ate more than I usually would. Sometime in the week following that conference I distinctly remember getting on the scale and seeing that I had dropped another pound. Immediately I knew something was wrong. My weight had not been this low since I got married. I was 35 years old, had three kids, and although I had continued to exercise regularly, I was only exercising moderately. I realized that the weight loss I had been enjoying was a cause for concern. Soon after that I realized I was losing half a pound a week no matter what I ate or whether I exercised or not. I made an appointment with my doctor.

At this point I began giving thought to what else was going on with my body. I realized that in the past six months I had frequently been running a low fever. I was thirsty all the time and never left the house without taking water with me. I began searching for answers while waiting to see the doctor. I became convinced that I was diabetic. I had had trouble with blood sugar during one and probably two pregnancies. It would explain the weight loss and the thirst. My doctor agreed except that I had no sugar in my urine and it was dilute, not concentrated. He had two blood tests done–one the day I saw him and, and a second a few days later–a fasting blood test which is considered the standard for diagnosis. Both came out normal. He also had blood tests done to check thyroid function and a few other things. They all came out normal. I was relieved, but knew that something was still wrong. The doctor wanted to wait another month and see what happened. He said to keep exercising.

August 2000

I was not satisfied with my doctor’s response and had my primary care physician changed to an internist who was recommended by a friend. I couldn’t get an appointment until late in August. Several days before my appointment, I became very weak. It was hard for me to stand for very long. The day of my appointment my mind seemed very fuzzy and I didn’t feel I should drive. Steve took me to the doctor who listened, took notes, and agreed that something was wrong. He thought it was most likely a digestive problem such as colitis. This surprised me, because I had not noticed anything to make me think it was digestive. I was sure it had to do with the endocrine system. At that point I mentioned one symptom which I had so far overlooked. For some months I had been having trouble with constipation. A problem which I seldom had before.
The doctor said that colitis would involve unpleasant and invasive tests. He wanted to do less invasive tests first to rule out other possibilities. That day I had more blood work done, repeating what the first doctor had done plus more. A few days later I had chest, abdomen, and pelvic CT scans done. I then had a small bowel x-ray which caused me intense pain for hours afterwards as my digestive system tried to pass through it the stuff I had to drink.

The doctor was not available that week for a follow-up visit so I saw another doctor who was new to the practice and just out of medical school. He reviewed the results of all the tests which showed nothing of concern except slight anemia. I was still feeling very weak and was becoming desperate for answers. This young doctor angered me to the point of tears. He dismissed my symptoms and suggested it was due to depression. I requested the referral that the other doctor specifically wrote him directions to give me if nothing else showed up. He indicated that the referral was unnecessary since my symptoms were not that of colitis, but if I “wanted to have a tube stuck up my butt,” he’d give it to me. I had to wait at least a couple of weeks to get that referral.

Around this time I told my parents what was going on. I had not wanted to cause them worry, but they were coming for a visit and would see how weak I was. When I spoke to my mom, she told me that her brother had celiac disease. I had never heard of it before and dismissed the idea quickly when the descriptions of the disease in my medical books did not sound like what I had.

September 2000

I continued to search for answers and using the Internet I looked into colitis and Crohn’s disease. My constipation simply did not fit. Everything I read and people I talked to indicated there would be diarrhea. Finally I returned to celiac disease (CD). What I found on the Internet was different than what my medical books said. In more than one place I came across the symptom diarrhea (most common) OR constipation. Many other symptoms fit and, learning that it was an inherited disease, I began to become convinced that I had CD.

It was early September when I began to eat a gluten-free diet. It wasn’t completely gluten-free because I had yet to learn about all the foods and additives that contain gluten, but the amount of gluten entering my body was certainly greatly reduced. This was just in time for our beach vacation the week of September 10. Some days I had to stay in and rest because of elevated temperature and being too weak to walk through the sand to the water’s edge. I was very grateful for our ocean front condo which enabled me to watch Steve and the boys from our bedroom. But other days I was able to join the family on the beach or in other activities. Within a week of eating gluten free, I was regaining some strength and stopped losing weight.

On September 21 I saw a gastroenterologist. He was compassionate and concerned. He did not think my symptoms indicated CD, but was more than willing to have a simple blood test done to check for gluten antibodies. After examining me he decided to wait for the results of the test. It came back positive. It was the first thing to give me an answer and confirmation of my strong suspicion. I talked to the doctor on the phone and he said that there was very little besides CD that would cause a positive result on that test. But he still felt that my symptoms, particularly the low fevers, did not go along with that diagnosis. He wanted to send me to a Dr. at John’s Hopkins. I requested to go ahead and have a small bowel biopsy done because I felt strongly that it was CD. When he learned that my insurance would not cover seeing the other doctor, he agreed. Because I had been gluten free for almost a month, he instructed me to return to a normal diet and the biopsy would be done in two weeks.

October 2000

I saw those two weeks as an opportunity to eat all the gluten filled foods that I loved most. I ate lunch with Steve at 3 Brothers and had my favorite spinach calzone. I ate Auntie Ann’s pretzels at the farmer’s market with my kids, and many other foods. The enjoyment was greatly lessened, though, by the increasing pain in my stomach. The last few days before my biopsy I had an almost constant burning, gnawing pain. I remember lying in bed trying to fall asleep just wanting the days to pass so I could stop eating gluten.

On October 18 I had a small bowel biopsy done at a local hospital. When the procedure was done, the doctor said he did see evidence of CD. He gave me pictures of the inside of my intestines and showed me where the duodenum and jejunum were abnormal. He fully expected that the biopsies, which had to go to a lab to be examined, would return a diagnosis of CD. The following week on the phone, he said to me, “You diagnosed yourself. I should return your money.” The biopsies indicated clearly that there was villous atrophy and I indeed had celiac disease.

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  1. glutenfreeislife says

    Wow…what a story!!! Good for you for sticking with it and realizing that something wasn’t right!

  2. to-obey-is-better says

    Your story sounds so typical of what we’ve heard happens in the States.

    Our oldest had the same main symptom you did; constipation.

    From the time she started eating solid foods this was a problem. By the time she reached six years of age she was having severe tummy aches and looked like a malnourished child.

    We saw a gastro pediatrician doctor in Bangkok, Thailand who had trained in the States. He did a biopsy on her, thinking that maybe she had a bacterial infection….nope, he called a few days later and told us it was Celiac. He was also surprised.

    None of our daughter’s blood tests ever came up positive for Celiac. We followed up two months later in the States (and getting THAT appointment is a whole nother story….waiting and waiting and…well you get the picture). Anyway, a second biopsy showed the same thing. Celiac. She’s been gluten free for four years now and is doing great!

    I’m glad for your blog site! I’m liking the recipes!


  3. TheGlutenFreeHomemaker says

    Jennifer, I’m glad your daughter is doing well. I think children usually get diagnosed more quickly, but constipation can really throw the doctors off track.

  4. His Tender Mercies says

    I had a blood test, colonoscopies, & endonoscopy done, the Dr. even did a biopsy on my small intestines, so he said. I asked him to do it just as I was going in to have the endo. & colo. done……nothing ever showed Celiac Disease.

    I met a woman through a food coop I belonged to who was very ill with colitis, her blood test came back negative for CD. She told me about a Dr. Kenneth Fine who offers non-invasive testing to check for gluten intolerance. He diagnosed her. I took the test….I tested positive for gluten intolerance.

    The problem with standard testing for CD is that it detects gluten sensitivity in the late stages, when the damage is already done to the villi, when you have CD……it can totally miss someone who has an intolerance to gluten, even if they are very ill.

  5. Retro Homemaker says

    I also used Dr. Kenneth Fine's gene and stool testing after my Celiac Blood Panel came back negative. My Dr. told me after my bloodwork came back negative, to go out and have a bagel to celebrate. I did NOT take his advice….LOL
    My sister has Celiac Disease, she only had constipation as a symptom, she never lost weight and was even a bit overweight. Her Doctor told her "you can't have Celiac you are too fat!" Unbelievable how much Dr.s don't know !!!! After diagnosis, she found out she has a severe case of osteoporosis at only age 52.
    I was not going to take any chances knowing that I had the very same chronic constipation issues as my sister…Sure enough, the results of Dr. Fines testing showed I had elevated stool ttg, malabsorption and had inherited 2 Celiac Genes from my parents.
    That was enough to convince me!
    I went Gluten Free in Oct. 09 and my symptoms have totally vanished!
    I do feel that there is still much research to be done regarding Celiac Disease and I believe that today's current diagnostic methods will be considered antiquated many years from now…

  6. Alexis says

    I also diagnosed myself. I had constant numbness in my feet. Went to the doctor and they tested me for B12 deficiency. While waiting for the test results, I looked up reasons for B12 deficiency, one of which can be CD, which my aunt also has. My doctors office was going to just teach me how to give myself B12 shots and send me on my way. I had to ask them to test me for CD. My blood work was so positive, the GI doctor I went to see told me I didn't need to have a biopsy.
    Thanks for telling your story.

  7. Heidi Wegner says

    After reading your story and those that have posted I want to cry. I have lived a lie for 8+yrs. of being told I have crohns and just living with it. I have spent 12+yrs. being a mom with what might possibly not be a truly special needs child who I finally got diagnosed with slight autism / ADD just this passed year (for the autism part).

    Apples don’t fall far from trees, my father and sister and I share several things like the crohns diagnosis, fibromyalgia, depression (varying degrees)…

    Many of you are catching on to where I am going here, after pestering the pediatrician for the past three years and putting my son through the 360 test (I call the endo/colon test) and several other wonderful drinks & scans I finally pushed her to do the blood test. The blood test came back with a phone call about 5wks ago saying allergic to: wheat/soy/oat/peanut & walnut. After going the next whole week free of those allergens clouds began to move away from me and I was seeing some sparks from my son and we met with an actual allergist for the skin prick tests.

    Dr. V, I will call her asked why on earth we were referred to her because the blood work was hardly worthy in her numbers opinion of further testing. I was adamant at that point about how good we felt and that I was even doing it with him and my crohns while not completely symptom free was at least 50% better if not more and my son’s trips into the bathroom were decreased and he seemed to look/feel better.

    I don’t exactly know how skin prick tests work but she re-did the tests that showed up on the blood work along with my other two requests (hazelnut & coconut… some of his favorites). The only one that popped anything up was soy. Dr. V, my son and I discussed remaining off all that we had been off of for another week + and then adding one of the items in and seeing how that went, pulling it out and putting in another item. We are to see her in about 2mon. from now.

    It struck me as extremely odd why GI’s & Allergist don’t work hand in hand? I’m not a dr. but lets face it…what you put in is going to come out. If there are health issues what you’re putting in is probably a problem/ thee problem or a contributing factor!

    I want to cry because I’m looking at all the different things allergies to food can cause; and I’m happy I’ve come to this gluten free life, I’m sad because it took so long…my poor son, I’m mad at the doctors our health is why they make money, I’m hurt from feeling like a pest and pissed because I wasn’t a bigger pest….

    What’s more, my husband who is a dream thinks I’m a food Nazi because I was ready to cry at Walmart trying to buy a bit of Easter candy and I didn’t want to get StarBurst Jelly Beans because I didn’t know what Titanium Dioxide was. Yes, he’s still in a bit of denial and thinks everything is okay in moderation. Tonight at Easter I brought up Titanium Dioxide and his cousins wife said it is used in white paint to help keep the white from being see through. By the way it is the last ingredient on the StarBurst Jelly Beans and on Colgate Toothpaste.

    There will be a few more viewers on your website as there are a few people I know who need to see your story and those who have braved posting also! Thank you for your story and the rest of you too :)

    • says

      Heidi, thanks for sharing your story with us. Dealing with doctors can be very aggravating. I’m glad you finally found some answers and that you and your son are seeing improvement. Keep in mind that intolerances such as to gluten or casein (a milk protein) won’t necessarily show up on an allergy test.

      I can tell from your comments on my recipes that you are already jumping in and embracing the diet. You are not shy about experimenting with recipes and ingredients and that it terrific. You will soon come up with recipes that are just right for your family.

      Since you are new to this and still adjusting (and I can tell it’s been an emotional process) you might be interested in reading this blog post also:
      Special Diet Grief.

  8. Heidi Wegner says

    I should have added that both of us are going for more allergy tests but remain gluten/soy free as much as possible…still learning the things that trip me up on that. Like when you go out to eat and they spray the grills with soy lecithin/soy oil to stop the sticking, use flour to make gravies instead of corn starch…. My son seems to be coming out of a shell and is wanting to integrate more socially. I can see him noticing things about people and getting better at social cues.

    I hope I don’t sound like a crazy women, but many of you know after 30+ yrs. of cooking one way this is like a foreign language immersion for the rest of your life. In the beginning that’s a lot to chew…pardon the pun :)

  9. jenjusjen says

    my story starts at the age of ten months, my mother fed me barely baby cereal and I started to have severe diareah and dehydration. Very shortly after that I was admitted into the hospital and I stayed there until I was over a year old. In the early seventies they did not have a fast type of test to diagnose. It got so bad that I had an I.v ran into my ankle and my kidneys shut down. My parents prayed and then were advised to call in their priest for last rites, they’re little girl wasn’t going to make it! Self control with this has been an issue my whole life with this disease. Now I am forty, I have experienced anemia and reduced thyroid function. I pay very close attention these last few years, as far as what my foods are made of. I mill grind my own flours, I do not eat things that have an ingredient list as long as my arm, and I avoid processed foods. One of the best flours I have discovered lately is corn flour, I love it!

  10. Grace says

    Yep, constipation really throws off the doctors! It was my son’s most remarkable symptom, and only his swim coach (a recently diagnosed celiac) thought his issues could be with gluten. After 6 mos and lots of pain, lethargy, fugues, lower grades, lower athletic function, slowed growth and the nastiest rash I finally convinced my doctor to test for celiac. His numbers were off the charts, so she didn’t order a biopsy. We went GF in Dec, and we just went to a gastro, as my doctor didn’t indicated we needed any follow up. His numbers are ALMOST in normal range. The Gastro said while he would have tested, the numbers being so astronomical pre-GF diet and virtually normal 3 mos later, he’s sure our son is celiac. It’s a tough diagnosis for a 13 year old boy – he feels like a freak when he can’t just eat at parties and such. Websites with tips and recipes are SUCH a help. I can’t thank you enough!

    • says

      That’s a tough age for a kid to make that kind of adjustment. I’m glad you got it figured out, though. Hopefully he can tell enough difference in how he feels to help him with the tough times. My recipes are all tested by teenage boys who are not gluten free, so you should find something he likes!

  11. Tricia says

    My Dr. Suggested I go off gluten for 6-8 weeks as I experience foggy feelings, weakness, extreme spacey anxiety, anxiety attacks, occas. feel like I could pass out, lightheadedness… et.. this has resulted in me feeling nervous about driving with the children (I have 6) places. We have tried other naturopath things for anxiety and my adrenal glands, but overall I have not experienced relief. I occass. have constipation and will cramp if I am very nervous. I always read that gluten intolerance results in diaherra and stomach issues? I have been freuquently sick this winter.. sinus infection, ear infection, then bronchitis. Yuck! I am 36 and before this would have considered myself very healthy. Any input is welcome.. I am most concerned about the baking and cooking from scratch, since we have such a large family and I frequently use pasta and flour right now.

    • says

      Tricia, you really should get tested for celiac disease before going gluten free. Once on a gluten free diet the tests are not accurate, and it can be helpful to know if it is celiac. Celiac/gluten intolerance does not always cause diarrhea or GI issues. For me is caused constipation along with other symptoms. It is definitely a possibility from what you describe.

  12. Michelle says

    Thank you so much for sharing. After reading, I felt like I was reading about myself. After 4 1/2 years of being extremely ill and not getting answers myself from many kinds of doctors (some even saying they have a good psychiatrist I could see), I self diagnosed. My mother is Celiac and after doing more research, I know I am Celiac also. I am on the road to feeling better and stronger. I discovered along the way that I have Hereditary Fructose Intolerance, which doesn’t leave a lot for options, but taking Gluten and Wheat out, makes a world of difference! Again, thank you for sharing and I appreciate all of the wonderful recipes!

  13. Joanne Miller says

    Linda, I admire you for pursuing to find your own diagnosis when doctors couldn’t. Your story is very similar to a client of mine who has celiac disease and was also told by her doctor that she was depressed and to go home, gain 15 pounds and start taking Prozac! Her doctor refused a test for celiac – she ended up at another doctor. I don’t have any digestive problems but have just become more and more aware of the foods that I am eating and what is good for me and not good for me. I am learning about gluten and how to cut it out of my diet and that is how I came across your website. I am very anxious to try the many recipes that you have come up with. Thank you for taking the time to share them with the rest of us!!

    • says

      Hi Joan. It is sad that doctors are like that, but thankfully many are becoming more aware of celiac disease and gluten sensitivity. Gluten can have effects other than digestive, and I wouldn’t be surprised if you find you feel better on a gluten free diet. I’m glad I can help you as you pursue that! Thanks for commenting.

  14. Pat McGrady says

    Ms. Linda,
    Thanks for sharing your recipes and stories about cd. The disease has disrupted my life, too. The neurological symptoms, the speech/dizzy/memory loss, seizures and many other symptoms kicked in before the cd was finally diagnosed for me. The5 years of “tests”, were completed in Jan. 13, and being told, not to eat gluten was all the treatment needed for celiac was pretty much a blessing and a curse. The damages caused by the disease may be non-changeable, but I am blessed to finally know it is “not all in my head” as the drs. stated from University of MD hospital. The JohnsHopkins drs. were more invasive in their tests, but not able to find a problem, the Dr.Alan Faisano (sp?) now in Boston, his former hospital ran tests and were less than helpful as I am now 60 years old and it is a pediatric hospital. My dr. decided to start at the top and go thru the drs. again to find the problem and the GI dr. did a colonoscopy, endoscopy and other tests and found Celiac.
    So, since Jan. ’13, I have tried to be totally gluten free, and now alot of other stuff, too. Milk, soy, etc… being Italian, I really miss pasta, pizza, Italian breads and cookies that my family always had. I haven’t mastered the differences yet, but God has blessed me bigtime with a husband who will try most all the foods I make…. can’t say the same for the kids, tho…
    Thank you for sharing and listening to me vent. God bless you. Pat

  15. says

    Wow, your story is incredible. I hope you contacted that young new doctor and gave him a piece of your mind. I am shocked at how he treated you. Our family is all gluten free. My husband was first when he started having troubles. He had odd red polka dots on his legs, and then a few months later he was diagnosed with IGA nethropathy, and autoimmune kidney disease. We are fortunate his specialist had read a study linking it to possible gluten intolerance. Within 3 years of going gluten free, his autoimmune disease has gone away.

    A few years later our son, who was 8 at the time started to get stomach aches. We decided to do gluten sensitivity testing with them. Our daughter still hold Cyrex Lab’s off the charts record. Our doctor said that high of a number couldn’t just come from one parent, so I was tested next. My numbers were also very high so I joined the family and went off gluten. Within two months, I was able to go off all of my asthma medications. I would never have put two and two together.

    In hindsight, i wish we did testing for Celiac first, while we still had gluten in our system. I suspect my daughter and I both have Celiac Disease, but we get too sick eating gluten to get tested now.

    Your website is a wonderful resource for people and I look forward to staying in touch.


  16. Jackie Hannahs says

    I have had CD for 24 years. It took 6 years of terrible migraines and painful abdominal swelling and a 2nd doctor to get diagnosed. My internist was not familiar with it back then. I did not gain or lose weight. I thought I was going to starve back in the beginning because there was very little GF foods you could buy besides bread and I only did that once! TERRIBLE!!!! Now we are blessed with all kinds of GF foods and flours!! I am convinced CD affects everyone differently and nobody seems to have the same symptoms. I am sick with painful swelling, etc. for 30 days when I get gluten in me. My brother was just diagnosed with it 2 years ago and he was diagnosed because of a terrible rash. Another Celiac friend of mine is only sick overnight. I have also read that 50% of Celiacs also have diabetes which I’ve had for 51 years but they don’t know what the connection is. I personally don’t feel that a specific event or problems causes Celiac Disease but think it’s a weakness or problem in our bodies.

    • says

      I’m sorry it took you so long to get diagnosed! And I agree that gluten free bread used to be just terrible. People’s reactions when they get glutened can vary widely, but you’re seems pretty bad. I’m sure it keeps you on your toes with avoiding cross contamination. I don’t think that an event or problem (like illness) CAUSES celiac disease, but I do think it can TRIGGER it so that it becomes active. Thanks for sharing!

  17. Terri says

    I am very thankful that Linda has this website to help us with recipes and advice. For many years, I went thru being weak and tired from diarrhea and was fired from many jobs due to not being able to get there on time – food was going straight thru me and I was getting no nutrition from it, and needed a lot of sleep. After finding I had CD I also struggled with anemia and iron supplements 7days/week made the diarrhea worse and therefore made me weaker. It took a while to find it was the iron and not accidental gluten ingestion that was the problem. Taking no iron, I was weak. I finally found the solution – Praise the Lord! Many lost jobs later, it was rvealed to me – now I take a chewable iron M, W, F – 3 days/week with Emergen-C (Vitamin C tablet – dissolve in water) – as C helps iron absorb. I am feeling closer to normal than I had in many years and enjoying cooking Linda’s recipes and variations of them. I hope this helps anyone suffering from anemia s Doctors are not very helpful sometimes – sometimes we have to be detectives and experiment.

    • says

      Thanks, Terri. I’m glad I’ve been a help to you. I struggled with anemia years after my diagnosis, and I know how weakening that can be. Glad you figured it out!

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