L.B.
Hi,
Both my 15 year old son and I have celiac disease. I was diagnosed first and I then recognized that he had similar symptoms.
It took over 10 years of pain and discomfort and feeling unwell before I finally got diagnosed. Both my son and I were diagnosed through blood work and small intestine biopsy.
Before diagnosis I went from doctor to doctor to doctor to doctor. I was given all kinds of crazy diagnosis (none of which felt right to me), I was told that I was crazy, depressed, stressed out. One doctor diagnosed me with sero negative rheumatoid arthritis and I ended up taking medication for that - of course it did not help.
My symptoms were severe but vague: I had daily migraines, brain fog, a general feeling of being unwell, I had swollen, achy hands and fingers, my joints were achy, the fatigue was so bad I don't know how I made through the day. I would wake up exhausted, achy and feeling very run down. I had only minor stomach issues which included bloating, gas and occasional epigastric pain. I was also iron deficient anemia and deficient in vit B 12.
My son had trouble with constipation since he was an infant, since age 2 he complained of generalized aches and pains which the doctor did not have an explanation for, he also had migraines, he was always anemic and we could not figure out why, as a pre - teen he was always exhausted and achy. He continued to suffer from constipation and had large bulky stools. When I took him to the doctor and requested that he get tested for Celiac, I had to demand the testing because the doctor said that his symptoms were not consistent with Celiac. Doctor ordered blood test that came back highly positive - he called me with an apology and scheduled a biopsy for confirmation - My son's biopsy came back positive as I new it would.
The diet is very difficult - I wouldn't be on it if I didn't have to, the food is expensive. But, my son and I will never eat anything with gluten in it again, we both felt so lousy before diagnosis and if we get it by accident we feel lousy. if you think you have celiac please have your doctor do a blood test as a first line screening (be aware that the blood test can have false negatives) the only definitive test for celiac is a biopsy.
