Confessions of a Celiac "NERD"

Celiac.com 03/23/2018 - I should probably add severe dermatitis herpetiformis to that title. It was numerous doctors' guessing games, a medical misadventure, and years of improper eating that led to my arrival at "severe". I often wonder why 'misadventure' was the legal term they used to describe a doctor giving me a neuroleptic drug for "spots". After all, there was no adventure in what occurred and the only thing that was 'missed' was the correct diagnosis. But my tale is one of a beginner's trials. I described my medical 'misadventure' in a previous issue. Perhaps this article could be called "The Perils of Pauline" if my name was Pauline.

When I was diagnosed with celiac disease and severe dermatitis herpetiformis (DH) I was told that the diet was very difficult to follow and I would have to be vigilant or Dapsone might not stand in the gap as my savior from the itching, I was told that I would suffer abdominal pain, outbreaks of sores, anemia, and, (big swallow) horrible bowel disorders.

Celiac.com Sponsor (A12):
About ten years ago I submitted an article about celiac disease and DH to a magazine. I was told that nobody wants to hear about 'bowels'. Thank goodness times have changed and we now have our own magazine. I can use terms like "flattened villi", "flatulence" and "stools", and know that you understand the need to discuss these issues.

Early in this process, I left my dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, my arms, and thighs, and a slip of paper directing me to see the dietitian at our local hospital. I was told to avoid "wheat", which meant avoiding bread and bread products. "Duh!" I went home, had a bowl of Campbell's Mushroom Soup and thought "I can do this. I am a nurse after all. It won't be long before these sores have cleared up, I can gain weight, my nails will grow again, and I will stop this blessed itching" (Why do we say "blessed" when we mean a swear word?)

I was on such high doses of Dapsone and the sores cleared up but what a price my body paid! We continued using the same toaster. (Goodness what is a crumb after all?) The more I traversed this "adventure" the more I found flour, or to be precise GLUTEN in almost everything I ate, liked, or touched.

I visited the dietitian at our hospital after weeks of waiting, and she was curious to see the sores on my scalp, never having seen dermatitis herpetiformis before! Her file on celiac disease was smaller than the one that I had started to develop. I am embarrassed to say, as a nurse and writer, that I did not search the Internet for help during those first months. The dietitian was my only resource. I did not know anyone with celiac disease. And dermatitis herpetiformis was something I did not want to tell anyone about. It sounded contagious to me.

Some of the 'shockers' to me, the person who thought the gluten free diet was going to be a piece of cake were simple things and stupid things. Some of the words I was frequently saying were "I just did not think gluten would be in that!" and "I did not think to read that!" and, "Who would have thought?" Certainly not me!

That first Christmas someone bought us a bottle of Irish Cream Liqueur, a thing we seldom imbibe. Again, not thinking, I used it in coffee for a drink after Christmas dinner and "wondered" why I had diarrhea the next day and why DH spots appeared on my scalp.

Food surprises: Oh my, such a lot of them. McDonald's French fries are not French fries. They are reconstituted flours, lard and "some" incidental potato products. My favorite, Costco fries, were hardly fries at all. They contained a lot of flour, which I suppose gave them the crunchy texture that I loved and paid dearly for afterward. I found out that most sausages contained toasted bread crumbs, as did sausage meat. Processed hamburger patties, big surprise, also contained toasted bread crumbs. I finally found that one can get sausages labeled gluten free, with that wonderful little "Wheat Sign" that I was learning to look for. Milk shakes? Oh, come on! Milk and ice cream... right? Not necessarily because not all ice creams are the same, some actually contain wheat germ or other grains used as fillers. This is similar to the way they use fillers in our medications, not only our pills but our liquid medications, our cough syrups, and pain liquids. Some indicate that they are made on machines that use wheat products and are not carefully cleaned before they begin another batch of medications. It is the same with those lovely sour lemon candies I love. They are coated with this lovely lemony powder. I can eat a bag of them without much thought. That is, thought was suspended until I was awake all night with abdominal pain and suffered the next day with diarrhea, and the next week with DH spots and the itch. Oh boy the itch! It is not a normal itch you know. It is not one that you just scratch for a bit and forget it. You HAVE to scratch it until it draws blood, and then scratch the scab until you have a burning pain like no other. Thankfully we found a Corticosteroid liquid called "Scalpacin". It is an over the counter liquid.

I was forced to get serious about this search for traces of gluten, but why do they make the product analysis writing so small? Picture me pulling things out of the freezer department of the supermarket and trying to read the product analysis. I cannot leave the door open because the hairs in my nose will freeze and I'm afraid that the department manager will become annoyed, so I end up opening the freezer doors again and again, searching for something I can eat.

I discovered, like most serious long-term celiacs, that quick, pre-made dinners are something you might as well ignore when shopping. And those wonderful rotisserie chickens - so nice and warm and "fatty" - have to be taken out of the warmer and the label has to be read because most of them seem to contain MSG and other unknowns. Acronyms - initials that scared me because I could not remember which ones were on my "Danger List". Eventually I printed off and laminated a sheet of "OKAY TO GO" and 'DANGER LIST" and took it with me when we shopped. (These lists are available at www.celiac.com.) Spices contain flour to prevent them from sticking, and who knew that baking powder would contain flour, and icing sugar? I was giving away most of my baking products cupboard to my grown daughters. Of course they did not mind and my husband was slowly learning to eat gluten free. Really, he was better for it. I kept telling him that. I seldom made cakes and pies in the beginning. Then, I had so many gluten free baking disasters because I was so used to baking with a "dash of this, and a dash of that", and you cannot do that with celiac baking or you will have a flop. I dug so many cakes out of the pan and threw them in the garbage. The first loaf of bread I tried to make in our break maker, the loaf actually went down instead of rising, and my husband ended up digging it out of the pan with a screw driver!

We rarely went to restaurants. I was embarrassed at having to give the waiter the third degree about the menu. And so many of the chain restaurants have large tins of pre-made products and the waiters, so time oriented out of necessity, cannot read every label. I now find, to their credit, that a lot of these chain restaurants have a book listing ingredients of each of their menu items. They are great, IF waiters will take the time to read them. A waiter in Hawaii, after grilling him (not the steak) about the "au jus" in the dish, finally came back to our table with my meal. My husband asked him again if he had checked that the meal was gluten free. Although he said it was safe, it became clear that he had not checked. It was that little hesitation that should have "clued us". I would not have spent the next three days of my holiday dastardly sick if I had handled it differently.

My family physician has told me to emphasize that gluten "is poison to me, and I get very ill from it". He went on to say, "That will scare them because they will be thinking you will be rolling on the floor in the restaurant". Eventually we found one restaurant in our area, a small family owned business where everything was made by the chef/owner, that was safe for me to eat. The chef even came out to see if everything was okay. I was so delighted I wrote an article in our local newspaper about the restaurant and sent information to the Vancouver Chapter of the Canadian Celiac Association because they welcome new information about restaurants and new bakeries offering gluten free baked goods, new information regarding retail grocery stores offering new gluten free products, etc.

I have learned to avoid caramel because even though I'm told it is not made with flour, it often has other forms of gluten in it that manufacturers are sneaky and not listing, like malt! A big shocker for me was the John Frieda shampoos. I just loved it when the hair lightener products by John Frieda came out.. They had blonde hair lighteners, burgundy hair colors, caramel, and chocolate brown. Oh my, the colors were endless and lovely. I bought the blonde hair products, the anti-frizz, the shine products and sprays. My cupboard was full of John Frieda blonde hair products for the wonderfully expensive streaks in my hair. Why oh why was my hair itching so badly? And the sores, and the blood! Why it was Wheat Germ Oil! And my scalp was alive once again.

But I had a bigger problem. By this time, my wonderful Dapsone was becoming a danger to me. I had always been told by my dermatologist to assist the DH to dry up by going {5-4-3-2-1 with the Dapsone pills. And if that did not work, doing it again along with yet another prescription pill Prednisone! Out came his trusty prescription pad for Prednisone, {5-4-3-2-1 of Dapsone and Prednisone.

I was not told however, of the potential side effects of Prednisone, like aching joints and mood swings. But Dapsone is one of the drugs that can cause methemaglobinemia, a blood disorder where the oxygen is taken out of the blood and your oxygen saturation can drop dangerously into the low 80's. I learned this after two hospital admissions into the ICU this year. They used Methane Blue (a potentially lethal mixture if not used correctly) to clean my blood. The oxygen is hidden behind a door somewhere and the Methane Blue helps open those trap doors and releases the oxygen into the blood again. That is how the internist described it to my husband who was sitting terrified in the other room. I had an infusion of two units of whole blood and a four day stay to monitor my oxygen saturation levels and was told I could never use Dapsone again.

What??!! Dapsone was my life-line; I could never live without Dapsone! Three days without that "stuff" and the dreaded spots were back. I was referred again to a dermatologist, now fifteen years after my diagnosis, and he prescribed Cimetidine, a medication used for stomach disorders. Who would have known? But it works - three times a day that is. Another dratted pill! We purchased a SAT machine (It measures the oxygen saturation of hemoglobin) online from the U.S.A. for $38.00. It is a very good deal. Twice a week we check my SAT levels and if they are 92-93 I consider it okay to continue my Dapsone.

I have been told if my SAT levels drop below 89 I should go to the Emergency Department because these small machines are not totally accurate. But this little guy has checked out with my physician's SAT machine and the hospital's machine every time; It's a real winner, and a life saver for me! IF you are afflicted with dermatitis herpetiformis and have to take Dapsone regularly you may want to consider purchasing one of these machines. A few shots of Zylocaine for pain, coupled with the Dapsone, and you could be in trouble. Zylocaine, in combination with a few other drugs, can cause Methemaglobinemia.

I have just listed "some" of the things that surprised (shocked) me when I was a new gluten checker. I am sure you can write in and tell us your "shocking" stories.