Well, I have not read everyone's story here on this site yet, but the one's I did are nothing like mine. All my friends in the celiac community tell me I need to share.
I was finally diagnosed about 10 years ago at age 32 after taking matters into my own hands. I followed up on one part of the Lupus test package that was highly positive but disregarded by my neurologist--I had classic neurological symptoms of celiac by this time.
I worked in healthcare and was a researcher by nature. Sick and tired of being ill, I searched and found journal articles linking anti-reticulan antibodies to celiac disease. I had stomach issues my whole life, so my primary care doctor agreed it was worth checking out. She found me a new neurologist.
At my appointment, I showed the doctor my previous blood work and the journal article. He confirmed that my neurological symptoms were the ones found in celiac. He immediately took me across the hall to a gastroenterologist and explained the situation. He took the celiac disease blood panel, and it was extremely high. My biopsy was the worst he had ever seen. My villi were completely flattened.
That was the good part of my story. The rest is not so great. I always had stomach issues as a child. The doctor said I was a “nervous child." In high school, I never really ate around friends very often, unless it was something I knew would not make me ill. One boyfriend in high school nicknamed me "bird" because I never ate much. I just never ate with him. I did not even know this was the case until I looked back over my life once I was finally diagnosed. I also never liked sandwiches, bagels, pizza, etc.--foods that were full of gluten. My friends thought I was odd.
When I went away to college, I got sick every time I ate at the dining hall and I had little money so I only could eat there. I lost about 20 lbs. in 1 month. I did not have any extra weight to lose prior to that. I went to the health center, and they said I must be anorexic and just looking for attention. Eventually, I could not even stand the smell of the dining halls. My body was trying to protect me. I became extremely depressed and left that college and never lived on a college campus again.
By the time I was in my early 20s, I was diagnosed with ulcers. No tests, no scopes, just take these meds and eat plain chicken and rice. The diet was gluten-free, so I did start to feel better after a few months. I would go back to my normal diet and be sick again a month later. Then back on the diet and pills for another 3-4 months, and so the cycle went for years. At one point, I was so exhausted I had very limited activity and did not work. I was diagnosed with severe anemia, but iron did not help. That year was the last year of my marriage.
When I tried to get a better diagnosis in my late 20s, I had a colonoscopy, but no endoscopy and was diagnosed w/IBS and said I just need to learn to live with the pain and bathroom issues the rest of my life.
Then, when I was 32, I woke up and I could not move without intense effort and I was having electrical shocks all through my body. My muscles were so severely spastic that it took about 6 months of physical therapy to get full use of one arm and one leg back. I spent much of my time in bed. I walked w/a cane with difficulty and a great deal of pain.
This time, I went to neurologists who ran a bunch of blood work. I was told that it could be a migraine and that I should see a psychiatrist. Thankfully, my primary care docs knew me well for 5 or 6 years and saw the dramatic decline in my health and knew it was physical, not mental. It was their support that gave me the courage to question the neurologists. Six months passed from the day I woke up with intense pain and muscle spasticity to the day I finally got my celiac disease diagnosis.
Unfortunately for me, my disease progressed too far and triggered another autoimmune disease, chronic inflammatory demylinating polyneuropathy (CIDP). CIDP is a very rare disease and took a few more years and a trip to NYC to get diagnosed. I have met a few other CIDP and celiac blessed individuals online.
Despite all the problems on my way to diagnosis and the additional diagnosis of CIDP, there is some wonderful news too. My son was diagnosed within a month or two of my diagnosis at age 6. After going gluten-free, both my and my son's asthma became so controlled that we were both able to discontinue daily controller medications in less than a year. We still have emergency medications for occasional attacks of maybe 4-5 times per year and steroid inhalers when we have a respiratory illness.
The blessings continued. My father was diagnosed in his 50s. My sister and her children we all diagnosed too. My sister's kids were "failure to thrive" and had other classic infant celiac disease symptoms, but they were never tested until their mom fought with their doctor. My years of illness have saved five other family members from the multitude of complications they could have developed from lifelong consumption of gluten, never knowing that they had celiac disease.