I am new to this, finally being diagnosed about a month ago. In retrospect I know now that I had a lot of the symptoms most of my life, just needed to get someone to listen to me.
As a child I would not eat bread (guess kids are smarter than grown ups)- growing up on a farm this was a challenge. My mom used to make me salads everyday for lunch using the leftovers from the night before – just throw in some meat, potatoes and miracle whip and I would be good to go. My whole family has allergies to something or other and when I was a teenager I went in for my first allergy tests because I was tired all the time. The test came back with the usual allergies – environmental, grains, yeast etc. Because my parents did not believe in the allergy shots we went home and I took an allergy pill whenever I thought it was necessary. Spent the next twenty years or so having my family, dealing with the tiredness etc.
In my early twenties I was diagnosed with high cholesterol and followed the diet along with the Weight Watchers diet and felt better (wasn’t eating any bread and cooking from scratch) but as with all diets this went out the window and back to the usual stuff. In 1993 I went through a divorce and in 1995 I quit having my period. I went in 1996 and had my tubes tied – this where everything started to go downhill after my surgery I never had another period – the doctor wanted to know what I was complaining about – switched doctors.
Then I started having menopausal symptoms at 32 years old and started the rounds with the specialists. Over the years they started a variety of estrogen replacement therapies and did a number of tests for MS, Lupus etc. Everything always came back negative. So I was diagnosed with Fibromyalgia. My body was not absorbing the estrogen they were giving me – at one time I was on two different estrogen pills as well as an estrogen patch. The doc decided that I must be totally stressed out and needed time off work – I was off for 3 months and proceeded to use that time to bake cookies, bread, buns etc. Nothing improved while I was off – do you think it could have been all the gluten I was eating? During this period in my life I also developed symptoms of bloating, gas, achiness, unexplained weight gain etc. The doctors didn’t want to deal with this – they said once they got my estrogen under control everything would be fine. In 2001 my sister had a baby – this baby was not thriving and they thought she may have Celiacs – my sister phoned and said I think you have Celiac disease. Off to my doctor I went – she said you probably don’t have Celiac disease but I will send you to a specialist. Off again – waited months for the appointment and then hours in the office – to walk in and be told “you can not possibly have Celiac disease” go home (I was by now 40lbs over my normal weight).
In 2003 I had surgery again, hysterectomy, bladder repair and a posterior repair – needed because of the lack of estrogen and chronic constipation. Around this time I also went for allergy tests again – this time they came back with environmental and multiple food allergies. When I asked what I could eat – they said that I needed the shots because there weren’t enough foods I could eat. I would have thought at that time that the allergist would have thought of Celiac Disease. I took the shots for a couple of years – went back to another allergist and was told they couldn’t test for food allergies – from one extreme to another. I quit taking the shots and started taking an allergy pill everyday. Still eating anything I wanted.
This brings me to now – I quit taking the pills this summer because I had enough and phoned a dietician. I had also started to have diarrhea which was definitely not usual for me having struggled with chronic constipation for all of my life. I asked the dietician for an elimination diet because I couldn’t tell what was bothering me…. gave her my symptoms and she said you have Celiac’s Disease. Back to the doctor, explained the situation again. She still said you couldn’t possibly have Celiac’s disease but I begged for the blood test. The blood test she explained can give false negatives but if it comes back positive it is positive. Had the blood test in August and was called back to the office a few weeks later. “You have full blown Celiac’s Disease”.
I have now been following a gluten free diet for a month and have started to feel better. The first thing I noticed was that I could bend my knees again without pain. Although I have lived with symptoms for my whole life after being gluten free for a few weeks I accidentally ate a hamburger with bread crumbs in it and became very sick and was up all night. I guess now that my body is getting clean it is going to bother me more when I have gluten – which is good. I am now 45 and looking forward to the rest of my gluten free life and I am sure that within the next year or so most of my symptoms are going to disappear and I will feel much better. I am now trying to determine what other foods I have an allergy to…. I know that in addition to have Celiac’s I also am allergic to grains – when people talk about having alcohol and it being okay – years ago I quit drinking rum and rye as they made be bloated etc. The occasional vodka or amaretto, wine seem to be fine. I also know I am allergic to tree nuts and now am wondering about the other top allergies.
I wanted to share my story as it took so long to get diagnosed and that there is hope for us all. I have lost 5 pounds this month and I am looking forward to shedding the rest in the next year. At this point I am keeping my cooking simple – trying not to replace my gluten foods with anything else so that the weight will come off. Eating lots of fruit, vegetables and grilled meats. My children are all going in for the Celiac tests as well as my sister and her children. I would be interested in talking to other Celiacs from the prairie provinces – especially the rural areas.