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My Long Road to a Diagnosis of Celiac Disease

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Despite awakening awareness of this common genetically-linked autoimmune disease, the majority of sufferers, like Julie, are still belatedly or never diagnosed.

I’ve had significant digestive problems my entire life. In fact, when I was an infant, my parents lovingly called me “diarrhea-baby.”

By the time I was in kindergarten, my mom was tired of my complaining about having a stomachache every day, so she finally took me to see the doctor, who diagnosed me with lactose intolerance and completely cut out dairy from my diet.

So throughout elementary school, the stomachaches were less severe, but still there.

In middle school and high school, I remember not being involved with too many social activities, since I always had to make sure I was within 10 feet of a bathroom. My friends thought I was strange and something of a hermit, and they rarely invited me to go anywhere with them. Besides, I was just embarrassed to be around people and hated that I was always in a lot of pain.

No one understood what I was going through, and they all thought I was exaggerating and feeling sorry for myself.

And honestly, I didn’t know exactly what was wrong with me. All I knew was, I barely got any sleep and the toilet became my constant companion.

In college, I continued having pain and diarrhea, but finally got to see an actual gastroenterologist when I was 20. (My mom never took me to a gastroenterologist when I was younger because we couldn’t afford it.)

Maybe GERD or Irritable Bowel Syndrome?

The doctor did a colonoscopy and endoscopy on me, and told me that my digestive system and its problems were equal to what he sees in the average 70-year-old. That doctor diagnosed me with GERD and IBS.

In my early to mid 20’s, I still suffered from a lot of pain. I should’ve bought stock in Imodium, Phayzyme, Tums, and Pepto Bismol, I took so much of those types of medicine. My entire life seemed to revolve around pain, nausea, and diarrhea.

But by the time I was 26 years old, my health took a definite and sudden turn for the worse.

I could barely get out of bed every morning and take care of my 2-year-old son. New symptoms flared up severely, and they included:

• Severe dizziness
• Joint pain,
• And also muscle pain/tingling, jolts (spasms) of my whole body,
• Hot flashes,
• Cold sweats,
• Severe abdominal pain where I could barely breathe,
• Major motion sickness in the car,
• Anxiety and panic attacks,
• And depression.

I lost a significant amount of weight in a matter of 3 months, though I was trying to eat anything that would stay down. By this time, I was down to 105 pounds. (At my sickest point, I was 97 pounds, and I am 5′ 5” tall!)  I was literally spending 5 to 7 hours in the bathroom in a 24-hour period.

I kept going back to the gastroenterologist, in desperate need for help. He ran about 15 tests on me, including another colonoscopy/endoscopy, barium enema (one of the most painful tests they ever did!), small bowel series, CT scans, ultrasounds, X-rays, blood work, you name it!

The most frustrating thing was that every test came back completely normal.

Except the small bowel series, which did indicate flattening of the villi that would indicate only Celiac Disease [see sidebar below] so the doctor ordered the Celiac blood test, and did a biopsy of my small bowel (during the colonoscopy).

Both tests came back negative! So of course he didn’t further investigate the Celiac aspect.

Finally the doctor admitted that he was truly puzzled about my case, so then he recommended that I see a neurologist, who wanted to test me for Meniere’s Disease (chronic vertigo) or even a brain tumor. I underwent two MRIs of the brain, both showing that yes, I had a brain (thank goodness!), and yes, it was healthy.

But the doctors were still at a loss as to why I was so sick. All the gastroenterologist could do was prescribe Phenergan for the nausea, Imodium for the diarrhea, and Wellbutrin for the anxiety/depression.

And all I could do was pray for a miracle.

I had been eating the bland BRAT diet (Bananas, Rice, Applesauce, and Toast) to try to stop the diarrhea. I had also been eating plain bagels, graham crackers, saltines, anything to alleviate my stomach pains (unknowingly I was poisoning myself even more!), and yet I was in the bathroom constantly.

At this point, I picked up the Yellow Pages and looked up dietitians in the area.

Unfortunately most of the dietitians I called would not even see me, since at the time I was on Medicaid. But finally, I found a wonderful dietitian who talked to me on the phone for a few minutes, and decided she would see me even though she didn’t take my insurance. She was determined to help me.

After some discussion, the dietitian asked me whether I had gotten tested for Celiac Disease because I did have flattened villi in my small intestine. I told her yes, but the tests came back negative.

She said that the Celiac tests tend to be only 70% accurate.

Therefore, she wanted me to start the gluten-free diet right away, regardless of the fact that Celiac had been ruled out by the doctor. Then she said to call her in a week or so, and let her know how I was doing. I had no idea what “gluten-free” meant, so she gave me some information on it, plus I had to do some research on my own.

I didn’t even think this insane diet was going to work, but I was at the end of my wits and was willing to try anything!

The next day, I started the gluten-free diet, and within a few days, I started feeling TONS better!

The diarrhea and the abdominal pain diminished, and I stopped feeling so dizzy. I called the dietitian back the following week, and thanked her for saving my life, in both the mental and the physical sense.

In the following months, I regained about 8 pounds. I felt so relieved that the worst part of my suffering was finally over, and there WAS an answer to my problem. I wasn’t crazy after all! The gluten free diet was a complete miracle for me, and the exact answer to my prayers.

I called my gastroenterologist and told him the news.

So he reviewed my long-term symptoms, put two and two together, and officially diagnosed me with Celiac Disease, an auto-immune digestive disease. I will have to follow a strict gluten free diet for the rest of my life.

Gluten is a wheat protein, and it has many derivatives that I also have to avoid. Finding foods that do not contain gluten is a challenge, but I would rather deal with that than what I have dealt with for the majority of my life – excruciating pain! I have found a few health food stores in the area that carry foods I can eat, and have been broadening my food spectrum whenever I can.

I have learned to be very open-minded and adventurous eater when it comes to my diet. I eat a lot of tofu, brown rice, potatoes, vegetables, and fruit, and make sure I take my vitamins every day, especially Vitamin B-12.
My prayers, answered.

I have been gluten free for 7 years, and have gained almost all my healthy weight back, so I’m about 114 pounds now, and feeling the best I have ever felt in my life.

Yes I still do have my bad days, but overall I can say my health has improved 3,000%! It was a complete miracle that I came across the dietitian who was willing to help me even though she didn’t accept my insurance.

If she hadn’t been so generous and willing to help me, I have no idea where I would be right now. I sometimes think back to what I went through, and wonder how I endured such pain. Sometimes I even get teary-eyed, because I am so thankful that I have my life back. I am a new person!

My wish is to become an educator and spokesperson on Celiac Disease and also an advocate for Celiac Awareness.

I want to provide help and support for those who are suffering like I had suffered. Sometimes diseases and tests do not follow the “rules” of the book, and so that’s what makes Celiac disease so tricky.

I have already helped two friends discover they have Celiac. After they both told me how they were feeling physically, I suggested that they ask their doctors to test them for Celiac, and sure enough, their tests came back positive. They are both feeling much better on the gluten free diet.

Now I want to help many more people! That is why I wrote this article, and also I have started writing a book about Celiac Disease, which I’m hoping to publish by the end of the year. It’s important to me to help teach the public about this under-diagnosed autoimmune digestive disease that is not widely known throughout the world.

Julie Wendell
* Julie Wendell describes herself as person with Celiac Disease diagnosed with Fibromyalgia in February, 2008. She writes: “I was born in Milwaukee, Wisconsin and grew up in Naples, Florida. I am a single divorced mother of 2 sons who are 9 and 5 yrs old and work as an office manager/dispatcher for an A/C company. I enjoy singing, reading, watching movies, playing outside with my kids, and learning something new every day. My goal is to be an advocate of Fibromyalgia and Celiac Disease awareness.”

* * * *


Celiac (see-lee-ak) Disease
is an autoimmune disorder affecting about 1 in 100 people that involves a severe reaction to foods containing gluten – a protein found in barley, rye, and wheat. When a celiac patient eats gluten the immune system attacks and damages (blunts) the tiny finger-like nutrient absorbing villi in the small intestine and can cause gut permeability ‘leaky gut’ as well as malnutrition. Still, only a small percentage of the millions of people with Celiac Disease are ever diagnosed.

Poor Vitamin B-12 Absorption and the resulting symptoms are particularly important in Celiac patients. For example, the body needs Vitamin B-12 to make healthy oxygen-carrying red blood cells and keep the nervous system working properly.

Non-Celiac Gluten Sensitivity. It is now also known that millions of other people have ‘non-celiac’ gluten sensitivity, which involves symptoms caused by a different kind of immune response that doesn’t ravage the intestinal lining.

Gluten Reaction. And some people with other conditions (fibromyalgia, Diabetes 1, Crohn’s disease, ulcerative colitis, and Rheumatoid Arthritis, for example) may experience a ‘gluten reaction’ that improves when gluten is removed from the diet. People with IBS are advised to at least try going gluten free.

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3 thoughts on “My Long Road to a Diagnosis of Celiac Disease”

  1. FAN says:

    Julie and ProHealth: Thank you for sharing. I run a nonprofit organization for people with fibromyalgia/CFS/ME and we are seeing more and more people who have these illnesses AND celiac disease. Keep up the good work! Yvonne Keeny, founder & executive director, Fibromyalgia Coalition International

  2. shmooda says:

    I have had Crohn’s Disease for 44 years. No medications helped no matter how long or which drug I took. 1 1/2 years ago I started a clinical study with a new infusion. Thinking of seeing 2 GI’s sounded like a waste of time. I transferred to the doctor doing the study. Being his new patient he did a routine colonoscopy and endoscopy. He immediately found out I also had Celiac Disease also. All those years of pain and suffering was alleviated by switching to a gluten free diet. My Crohn’s pain was cut in half!! I am sure now that it wasn’t all pain from the Crohns. I can now do things like go shopping at the mall or o to the movies! I was told I had bi-polar disorder, depression and panic disorder. That has even subsided!! Having Celiac Disease actually saved my life!

  3. jenunsa says:

    I was finally diagnosed with CD when I was 34 in 2004. My blood tests for the auto-antibodies all were positive. I had no real symptoms of CD. Just IBS constipation, migraines, several other autoimmune diseases (Graves’ Disease, Hashimoto’s syndrome, alopecia)and CFS. I’ve been on a strict gluten free diet for the past 7 years and I don’t feel any different at all. Nothing has improved and I continue to actually get slightly sicker each passing year. My CD antibodies are all near zero (normal) which proves I’m not eating foods that contain hidden gluten.

    After I was diagnosed, I found out my grandmother had been diagnosed with CD, and then my brother and mother got tested and were also diagnosed with CD. But I am the only one who is so disabled. My brother and mother didn’t feel any different on the GF diet, either.
    My grandmother was diagnosed in her 80s which was when she finally developed clear CD symptoms. I figure that myself, my brother and my mother would all have ended up like her if we hadn’t gotten diagnosed when we did.

    Celiac Disease is genetic. It runs in families. If anyone in your family is diagnosed with it, all members of the family who are blood relatives then need to be tested.

    And, the moral of my story is that you can have it without having obvious symptoms.

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