September 4, 2008


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.


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

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.
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 can totally miss someone who has an intolerance to gluten, even if they are very ill.
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...
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.

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