Nancy’s Story

Hi Peter,

I was diagnosed with celiac disease in June 2005. I had the blood test come up positive for gluten antibodies and then I had an upper GI done and the biopsy done was positive or “suggestive” for celiac disease.


I guess I should start at the beginning. In the fall of 2004, I was very ill. I kept having problems with my asthma and bronchitis, rashes, headaches, menstrual problems, and I started have swelling and pain in my legs, although I did not realize it until later. I also had a lot of GI symptoms, but most of my adult life I had what was thought to be irritable bowel and acid reflux disease.

I also have always had sinus and allergy symptoms nearly all of my life, developing asthma as an adult after having pneumonia. I was a mess. I started to have many anaphylactic symptoms as well that fall, but I thought I was allergic to medication I was given for acid reflux and other antibiotics I was using to treat bronchitis.

Anyway, I could not find out what was wrong with me. I seemed to be in a health crisis, and things were very stressful at work at that time.

Time went on, and then in the Spring of 2005, my abdomen swelled unbelievably large. We could not figure out what was wrong with me, I was having GI symptoms, headaches and all of this swelling.

I wound up having angioedema, swelling nearly everywhere in my body, but my regular doctor ran every test and basically thought “it was all in my head” or “signs of depression” because nothing could be found to be wrong with me.

I was put on water pills by the regular doctor and told to go on a low sodium diet. I found out I was allergic to the water pills, and could not take them.

When I went to the allergist, I told him that something was wrong, I was having heart palpitations from all of the swelling in my body, and I was nauseous all the time. I even thought I was pregnant or that I had an ovarian cyst from the swelling, but the gynecologist ruled all of that out, even though I did have a history of ovarian cysts.

The allergist asked me to try to keep a record of what bothered my stomach, and he put me on steroids for the swelling and antihistamine to stop the angioedema. There were times that I felt my throat was swelling, that I could not breathe, and I was really depressed.

In May 2005, after months (actually many years, I now know) of being sick, I went to see the allergist again and I told him that I felt really sick after eating oatmeal, and I was wondering if I was allergic to gluten.

I had been using high gluten bread flour to make my own bread because of all the swelling and trying to avoid salt, and I told him I felt sick after eating the bread.

I had been looking up my symptoms on the Internet, and somehow I found the gluten intolerance possibility, never realizing fully what gluten was or what even celiac disease was.

He had blood drawn for an antibody test for gluten, and I found out two weeks later that it was positive, but the allergist wanted me to continue my regular diet until I could see a gastroenterologist.

I saw my new doctor a few weeks later, and she told me about the gluten free diet and I saw a nutritionist. The upper GI was scheduled then, too, and about two weeks after that the truth really started to settle in.

I started to do a little better, but like all Celiac’s, I made a lot of mistakes and still was sick.

I gave up most dairy, but I had a lot of intestinal problems. I had a lower GI in July 2005, and I was diagnosed with an intestinal infection and ulcerative colitis. I was on steroids again.

I started to do a little better, but then in December, I started baking GF cookies and used butter, thinking I could just use Lactaid and I would be fine. I wasn’t. I was really sick nearly all over again, but this time I had malabsorption because of the colitis and milk intolerance. I even started losing my hair! My GI doctor told me I had to give up all milk in my diet, and I now felt I been given a double blow, no gluten, no milk! I was going through depression again!

I struggled for a while, but then in Spring 2006, I figured out that some of my GI symptoms were also caused from eggs. I gave up eggs, and now

I only occasionally have eggs, but they bother me so much, I think I will have to stay away from them.

I got the first real clean bill of health that summer of 2006, and I started to lose some weight. I have been overweight my entire life! I still have a lot of weight to lose, probably at least another 20 lbs, but I feel better. I refuse to go on steroids again, trying to handle my conditions with diet restrictions and avoidance of triggers to my colitis.

It has been a challenge, but through my own self education, help from my doctor, and help from websites like this one, celiac.com, Living Without Magazine, and many books and cookbooks, I am feeling better.

I am still frequently ill with every virus that comes around, it seems my immune system is still messed up, but my asthma is better.

I can sing again, and voice is better than it ever was! I got a new job in Fall 2006, and we moved to a new town. Life is good, and I feel I have a fresh start on life, and I have hope!

I still worry about my kids, who so far are antibody free, but who have some of the same struggles I had most of my life with health and weight. I could not have made it this far without my faith in God, and I know that he is the reason I found out what was wrong with me. Life is very good.

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If you would like to share your own story with us, please use the comments box below or contact me at: support@glutenreview.com