So this is Sunday, August 5, a little less than one week before my son’s wedding. Since I am so sensitive to gluten due to celiac disease my husband and I agreed that to be safe, and to feel the best that I can feel for the different events that are coming up revolving around the wedding, we decided no eating out at all until the wedding. It’s challenging, because we have a fair taking place in town and you know that fairs always have food. Very tempting. But can’t afford to be sick. And I do enjoy a little wine here and there. But to be safe, I’m avoiding places of temptation so that I can be the best that I can be for the wedding. All I have to do is get a little cross-contamination, and I feel weak ,I end up with diarrhea, I get all achy and tired, it effects my vision, and brain as well. There are so many symptoms you have to deal with when you get what I call gluttonized. It simply is just not worth it, I do want to enjoy the wedding, and be there for my son and daughter-in law. So, even when I get into a little bit of gluten, it flares up the other autoimmune problems. The Sjogren’s disease for example makes my eyes get all red, bloodshot dry and blurry. And by getting into gluten it makes that disease worse. What happens with that disease alone, when I get into gluten, is that it actually does damage to my eyes. All that dryness from the Sjogren’s disease causes scarring on my corneas, and while there is medication to help both with eyedrops that I take, along with diet, the moment I get into gluten it flares up my eyes and the Sjogren’s disease. The disease can also can effect your teeth and gums because of the dryness it causes in your mouth. It does damage there too. I’ve lost teeth because of it. I wonder how many people don’t realize, just how dangerous it is for a celiac, the disease can be. For me it is also caused another condition, another autoimmune disease called Hashimoto’s disease which is a thyroid condition where the body has attacked the thyroid. Also caused from getting into gluten. I can’t emphasize enough how dangerous celiac disease is. I had two cousins that died from it, because they couldn’t keep up with the strictness and the autoimmune problems that came along with it as a result of not avoiding gluten. And it wasn’t the avoidance of gluten they struggled with, it was the strictness of the cross-contamination. It’s a lot of work. And you need support from family members, that which they did not have. And it’s something I am fortunate enough to have. To a true celiac gluten is poison, and it comes in so many forms! You might as will be drinking arsenic. So my point is, the more I avoid the gluten and don’t take the chance of going to restaurants and risking cross-contamination, the less challenging it will be for my body. Not to mention, when you get into gluten as a celiac, it also messes up your vitamins and minerals, which can cause all kinds of problems. Especially with your muscles, and muscle weakness, and emotional symptoms.
For example ,when I get into gluten one of the first things that happens is I get muscle weakness, along with stomach pain, and bowel upsets. And why does that happen? Because the moment I do that it causes this thing called malabsorption, which is an inability for your body to be able to absorb the nutrients and vitamins it needs to maintain health and wellness. By avoiding gluten I have no trouble processing all the magnesium that I need for the muscles and the weakness, the vitamin B’s I need to feel nice and calm and have the energy I need, the calcium, the potassium, etc. I have had trouble with potassium in the past, that also causes muscle problems and weakness and can make you feel terribly weak. But by avoiding the gluten and supplementing, also with monitoring from my doctor and nutritionist, I’m able to hold my potassium, magnesium, etc. etc. . It’s such an intricate balance, that is a daily thing for me and you.
But I have learned over a 30 year span of diagnosis, that it really is one day at a time. If I were to look at the whole picture, it would be quite overwhelming. But I’ve learned not to do that! So again, so I can be the best that I can be for this wedding, which will only come once, it’s best to avoid temptation right now. No chances are taken. Does that mean in the future I won’t go to restaurants that I know can be gluten free? No, I probably will go and be sure the restaurant understands the importance of it. Most of the restaurants I go to usually get it, or I don’t go. But keep in mind, for yourselves, each time you go there is always that chance, that somebody does not understand how strict you have to be. So while I love to go out to eat with family and friends, I have come to realize I have to limit it because each time it’s a crap shoot. And I’m the one who ends up shooting crap, no pun intended!
So if you have diagnosed celiac disease, keep your eye on the ball, because if you don’t you can end up eventually like my two cousins that passed away from it. Because as a true celiac, each time you get into gluten it does do permanent damage. Especially if it’s gone undiagnosed so long as mine originally did. And the damage was permanent! So wish me luck with the wedding, I plan to dance and have a good time, my son and daughter-in-law to be are talking with the chef to be sure that he understands how strict I have to be. And the Chef has assured me that my food would be made separate and literally kept in a plastic bubble so I don’t get sick. I gotta tell ya, it’s a challenging way to live, but thank God because I know what it is, and how to deal with it I can live a full life. And you can too! So be well my friends, and don’t get discouraged, do as I do, and take one day at a time. As Leonard Nimoy used to say, in his role as Mr. Spock on Star Trek,” live long and prosper!” And incidentally, he was a personal friend of my father’s while growing up in the Boston area back in the 1940s. He was a smart man, and my father loved him. I will post again soon! Thanks for letting me share, Iris
Gluten Intolerance SymptomsJanuary 28, 2018