Gluten free diet is one thing, a celiac self-diagnosis is another. It is a start, testing is a good idea. Here is a personal anecdote about celiac self-diagnosis.
The following was contributed by Agnes Mouroulis as a comment. It is so long and detailed, that I thought I’d publish it as an article. This may be a very late reply to this email, but it might be useful for others reading the comments.
I don’t know for sure whether I have celiac disease or gluten allergy or even both. I diagnosed myself after a lot of daily misery and taking 8 kinds of medication to alleviate my various symptoms.
I did notice that in the morning after my stomach was empty for 10-12 hours I would feel well, but as the day progressed I would feel worse and worse, and by the evening I was is agony: bloating, sweating, sour stomach, acid reflux, swollen feet and hands, rapid heart beat (pulse of 200 while sitting), tingling in hands and feet, blood pressure going up and down, and feeling like I just got a huge injection of adrenaline.
I realized that the one ingredient which I knew was a constant was wheat or some form of gluten in each of my meals. I also remembered that I felt much better on the Atkins diet and on a Candida diet years earlier. So, I went on a gluten free diet and now that I made a very serious effort to be gluten free, I am finding my way back to my old self.
I am more emotionally stable, I have more energy, my brain fog is gone and I am loosing weight. But most importantly, the point I wanted to respond to is your question about emotional response to gluten. I can tell you, my earliest warning sign that I had accidentally ingested gluten (most often in a restaurant meal) is my emotional response. I am like some angel/devil creature and sometimes those around me don’t know which personality is going to pop up next.
I become unbearable, if I say so myself. I would have never believed this myself if I was not living through this. And worse, I know I am being snappy and short and bitchy, I can’t stop myself. Of course, later I have the other horrible symptoms coming along too, but my emotions are my first indicator for something worse to follow.
I have to say, that I have been on this diet for over a year, but only since I became very serious and vigilant about being gluten free, had I seen the true rewards of my hard work.
Gluten Free Diet – Stick With It for Longer
And a word to all those who want to “try gluten free for a week or two”, you have to have a more committed attitude to feel better, because I you don’t approach this problem very seriously, you might conclude that your problem is caused by something else, and discard gluten as the critical factor that is making you sick.
Will Your Doctor Help with your Gluten Free Diet/Gluten Allergy/Celiac Disease?
Your doctor does not have the time, the inclination or the training to sit down with you and work out a solution. You might think that should be so, but it is not. You can get divided up by specialists who will look at a narrow field of your body and say, “Yes, I see you have a problem with your digestion”, or “Yes, you have a problem with becoming borderline diabetic”, but nobody, not even your Family Doctor will put the puzzle together for you. You would think that the person who has all the information from the various specialist would look to see what it all means. But they won’t!
As I said, I was very sick, but now, I am down to 2 medications, no more anemia, better blood sugar control, no more repeated sinus infections, no irritable bowel or irritable bladder problems, no more dandruff (a big plus), etc.
Steps to Becoming Gluten-Free
What I had to do: I bought my own dedicated toaster (no more sharing), I bought my own kitchen implements, my own colander, my own cutting board, knife, I designated my own gluten free butter, mayonnaise, jam, put a notice on the yeast packet to remind anyone using it to use only a clean measuring spoon, otherwise it will become contaminated.
I thoroughly scrub, and wipe and wash everything I have to share with gluten eaters. If I am not sure of how clean something is, I was it again. My husband cuts his crusty bread by the sink, and before I do anything else I clean the counters of bread crumbs. Bread crumbs are very insidious, they get into coffee cups, cracks, etc.
Sorry, my answer went on for so long. We all want to contribute to others, and this is one of the best human traits we have. I consider this my contribution to fellow sufferers.