I am very upset and apologise in advance for the length and detail of this post. I live in Perth, Australia, and believe I have discovered more information on celiac.com relating to gluten health issues than any doctor has ever been able to provide.
Bit of background, I am 21 and have always suffered from hay fever, worse than anyone in my family. I get bruised easily, my right knee is totally stuffed and both knees crack when I bend them. I love to run, although my knees (and occasionally hips) set me short. My hair has always been thin and dull, and apparenly I have "big glands/lymph nodes" in my neck. I have always been thinner than my two siblings (though my BMI is normal), however I have a pot belly. We have history of diabetes, high blood pressure, vertigo, chronic migraines and mild gluten intolerance in the family. No one in my family has been for a colonoscopy, endoscopy, or thoroughly tested for celiacs.
In March 2009 I began to experience very sudden, short and uncomfortable stabbing pains in my intestines/stomach region - as if something sharp just wriggled around to 'ease through'. These pains would last for a couple of seconds, causing me to double over in pain. Occasionally they would last longer than a few seconds, like a dull cramp that eventually reached a 'stab'. Pregnancy was out of the question. I couldn't eat anything and lost 15 kg. I had diarrhea, a constant fever, cramps - the doctor put me on gastro medication and didn't give me a blood test. I woke in the middle of the night with a temperature of 42.6 C - my mother took me to a different doctor and demanded a blood test. My white blood cell count was astronomical - apparently I had been suffering appendicitis for the past month, and since the doctors were unable to locate my appendix on the scan due to accumulation of fluid/gas in my intestines, we had to assume the fever resulted after it ruptured. I had key hole surgery because the surgeons didn't know what was going on. Has anyone with celiacs experienced these symptoms???
For the majority of 2010 I didn't eat very much gluten. I was on antibiotics and painkillers. I was never hungry and after losing 15 kg I preferred to eat 'lighter' types of food, such as salads and fruit. However, I ate crumbed calamari and a variety of sauces. Life was beginning to return to normal when I experienced a very unsightly rash on the right side of my face and body. I was also experiencing depression, crying for no reason, dandruff and mild intestinal pains (doctors said it was abdominal adhesions from my operation, undetectable on ultrasounds, couple of years to form, can lead to blockages, food intolerance, stomach cancer, all that jazz). I was put on acne medication. I requested another blood test - coeliac said 'negative', however by that stage I was not consuming obvious forms of gluten (bread, pasta, pizza) because I preferred to eat light.
In 2011 I started a food diary that proved eating products containing gluten caused stomach aches, dizziness, tiredness, depression, irritability and headaches.
I decided to avoid gluten completely in 2012. I have been paleo since February and have been feeling absolutely fantastic. I became extremely fit and my appetite diminished. My hair looks very shiny, my complexion is better than usual and people think I'm on drugs because I'm so happy and glowing. I can go all night without sleep and bounce back the following day, no troubles, all I want to do is exercise.
However, after consuming corn chips/a teaspoon of unusual dip at a gluten-free restaurant, my entire face broke out in a rash - red cheeks, forehead, swollen jowels. I looked a bit like an orange hamster. Fatigue set in, and I was in an irritable and depressed mood. Just as things were returning to normal, I consumed a large amount of gluten-free cakes during a family gathering, and probably corn/dairy products. The pain in my stomach was very dull, but it was there. I was constipated. After a couple of days of mild stomach discomfort, it skyrocketed. I could feel something snaking (almost sharp and flipping, like a cut) through my intestines - very sore and tender to touch, the pain was concentrated on the right side across from my belly button and under my ribs. It slowly travelled around to the left side, then moved under my belly button. I was sweating, couldn't breathe properly, irritable, sleepy, lost motivation, wanted to eat everything I could see and puke up my guts at the same time. 3 days stuck on the toilet. I had bladder problems, urinating constantly, it felt like a combination of a UTI and thrush. I wasn't digesting anything - it just went straight through me.
That was nearly 2 weeks ago. I'm slowly returning to normal, although I feel very depressed, not chatty, irritable, mild pain is present roughly 15cm to the right of my bellybutton and my pot belly is back. I can't exercise or focus on studying for my exams. Needless to say, I'm back on paleo.
Has anyone had a similar experience?? Do I have coeliac disease or a gluten allergy? Will a colonoscopy or endoscopy show results, even if I'm off gluten?
Any help is greatly appreciated and thank you so much for taking the time to share in my journey.