Out, Damned Spot!

Celiac.com 12/22/2018 - “Out I say. One, two, why then `tis time to do`t - Hell is murky!” Never considered myself Lady Macbeth, but I have had blood on my hands and sometimes screamed, ``Out all you damned itchy spots` in pure frustration. My story of being a celiac with dermatitis herpetiformis is one that nightmares are made of. Sit tight and you will see what I mean!

My medical journey has been full of misadventures. My brother has often jokingly said, “M.D. does not stand for “Medical Divinity” and he is so right. I was misdiagnosed in my twenties as having irritable bowel disease after a busy specialist undertook to do a colonoscopy for me in between his regular patients and during my lunch hour working as a nurse. I took his word for it and rid myself of irritating foods like steaks and corn and cruciferous vegetables. I was preparing barbecues for my family, eliminating the meat and eating the hamburger bun.

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I was a busy nurse and active jogger. I loved hiking and canoeing. The medication I was given for my so called ‘irritable bowel’ was not working. One physician told me that when a physician does not know what is wrong with a patient’s gastro-intestinal bowel problems the all encompassing term ‘irritable bowel’ is often used. If the patient comes back again and again the label ‘depression’ is tacked onto her chart. Not all physicians are as blasé as the ones I have had to deal with, but I do warn you to be careful and check everything. I am writing this from the other side, and I have seen so many things that would ‘knock your socks off!’

Throughout my thirties I jogged early in the morning before my shift; often jogging off into the bushes, Kleenex in hand, hoping and praying no-one was around to see me taking a bathroom break. Those of you suffering from loose bowels because of ingesting gluten know only too well what I am talking about! We went out to our favourite Chinese Restaurant, time and time again only to make a “pit stop” at the nearby soccer pitch so I could retch up our dollars on the turf. I still received the same diagnosis, the same medication. Normally I weighed 100 pounds in those days and on a five foot one and a half frame my weight was not bad. (Heavy on the ½ inch!)   Slowly my weight declined. Stress I was told - yet another diagnosis. 

Slowly I was limiting my foods to yogurts and sandwiches. Throughout my forties my problems exacerbated until the November before my daughter’s wedding. Like an explosion I had spots all over the back of my head, upper arms and thighs. Oh I itched, but when I scratched the tops off the sores they stung and hurt. It was hard to work as a nurse scratching your head. I am surprised that someone did not whisper a word to a doctor to have me checked for fleas. Fleas I thought and bought a bottle of Kwellada and dosed not only myself but my husband with it! The bedding was almost boiled, our nails soaked in Pinesol. All was to no avail. I was referred to an allergist whose nurse dealt with me more than he did. He rushed into the room, did not check my sores at all but suggested bed bugs. Agghh! Being a neat freak everything had to go except my husband! 

The November prior to my daughter’s wedding, and near the end of my forties, I was an itching bleeding mess. Of course I had a sandwich every day for lunch and found that I itched far more in the afternoon. My white nurse’s stockings were covered in blood at the back and on the way home from work my therapy was scraping a comb through my scalp and tearing all the spots apart. 

Immediately I arrived home my husband knew I would rush upstairs and grab a cool shower for the second time that day. The last Saturday in November after itching my way through trying on wedding dresses; can you imagine? Beautiful shop and conceited sales clerks looking askance at my legs. I had reached the end of my itching rope. 

The other physician in the two physician practice I attended was on Saturday call and I walked in. He examined my spots, actually looked at my scalp, asked me some very relevant questions about my condition, exited the examining room  and came back with his Dorland’s Medical Dictionary, the guidebook for all doctors. Dermatitis herpetiformis, he shouted. “I am almost convinced of it.” He prescribed two to four Atarax for the itch, and four Prednisone - along with the specific instruction that I follow up with my family physician, his partner, on the following Tuesday. 

To be sure I was in that office immediately after work on Tuesday, scratching my head and rubbing my legs together as if to start a fire right there in his office! I indicated that I had seen his partner on Saturday, spouting my instructions. “Stress” he said. He didn’t seem to have even read the notes written by his partner. I was prescribed Loxapine, four Atarax, six Prednisone, and instructions to follow-up in one week. 

This is where I should tell you about Loxapine. It is a drug, often given to sedate the elderly in nursing homes. Very few hospitals prescribe it anymore because of its dangerous side effects. Most medical manuals will warn against prescribing it to peri-menopausal women of low weight, and a lot even warn against giving it to women at all. It also indicates not to prescribe it for longer than three months and to monitor it closely for signs of tardive dyskinesia. (I probably now know as much about this horrible side effect as any medical physician). One thing that the Medico-Legal Handbook of the Canadian Physicians states is that when prescribing a drug not designed for the condition it is being used to treat, the physician must list all the possible side effects of that drug. I can say with all honesty that if I had known of the possible long term side effect of tardive dyskinesia I would have asked if there were any other drugs for “itchy spots” without the significant risk of not only a disfiguring condition on the outside of my body but what it could do to my internal physiology. Don’t forget, I had not yet been referred to a dermatologist who would take the time to take a biopsy of these spots! Consider that I was driving thirty-miles a day to work on this sedating drug, along with the Atarax and Prednisone. I am amazed that I did not add to this cocktail of drugs a drink or two of my own, but thankfully not being a drinking person I persisted staying awake, scratching during the night and keeping my husband awake!

The wedding in January went off without a hitch. This is surprising since my daughter seemed to think I was the wedding planner extraordinaire. At our March visit my husband came in with me, both gun barrels loaded. “Why hasn’t my wife been referred to a dermatologist? Why is her mouth turning and her speech slurred, her hands trembling and her head turning?”   

I had “DH” without the “D”. 

My physician seemed to wake up.”‘Whoa, how long has she been twisting her mouth like that? She has to go off Loxapine right away. That is one of the side effects of that drug.” 

I saw the dermatologist the next week! He asked a barrel of questions but told me that since I was now up to ten Prednisone a day. I would have to wait two months in order to be weaned off that drug so he could biopsy the dreadful spots which seemed to have a life of their own. They marched in a line like soldiers and I was scarred where healed spots had been. My weight was now 89 pounds and my stomach muscles were as tired as I was from retching into any available toilet.

After the three months were up biopsies were taken and I received a lesson about IgA deposits. I was told that in the ‘olden days’ one way of telling if a person had dermatitis herpetiformis was to put a few drops of Iodine close to an area of the lesions. Within a few days some more spots would appear, because apparently these DH spots are present under the skin and show their ugly itchy selves with Iodine. Did I try it? Of course I did!   My test results were positive, silly person that I was, but thankfully the hospital laboratory results were also positive. 

To be thorough the dermatologist wanted me to have a bowel biopsy. Unfortunately the first gastroenterologist failed to biopsy the Jejunum part of the bowel. I had by this time searched the Internet for myself. (Oh why hadn’t I done it sooner with the Loxapine?!!) I knew about flattened villi and had started following a semi-gluten free diet. 

Somewhat deflated and now struggling with patients being unable to understand my speech, not being able to draw up a needle or even, when assigned to a corner to write up charts my once beautiful writing was illegible. I am surprised I was not breathalysed. Thankfully my work ethic was such that I was more to be pitied. I was referred to another gastroenterologist who did biopsy the jejunum part of the bowel and the results came back positive for celiac disease. Anyone of you who has undergone these tests knows that they are exceedingly unpleasant. Yet I was happy because I was vindicated. 

The dermatologist placed me on the drug Dapsone - four a day for the first week with follow-up in one week. I arrived back at his office with flowers, not in my head, in a bunch in my hands; I was ecstatic! The spots were almost gone, just some residual spots at the back of my head. I was immediately put on a gluten free diet. I was officially a celiac with dermatitis herpetiformis. The dermatologist told me that I had a severe case and it was unlikely that I would ever be able to go off Dapsone. It would be my partner for life. 

But I did not know how difficult the diet can be when you are a novice. He referred me to one of the top internists in B.C. who, of course, agreed with his diagnosis but also told me how to rid myself of residual stubborn “spots” at the back of my scalp. ‘Do the 5-4-3-2-1- regime with Prednisone and Dapsone and this should clear up the rest of the spots. {**You can also do this with outbreaks I was told**} Read that sentence in brackets with stars, hold the thought but ignore the instructions.

Now I had another monster to deal with, far more ferocious than the DH. I was referred to the Movement Disorder Clinic at U.B.C., a Clinic I still attend to this day. I sat with Parkinson patients as well as multiple sclerosis patients and was quite terrified about my prognosis. I was assessed by the very head of the clinic who was quite angry that a “young woman” of my age was administered Loxapine for “spots” when there are so many other medications on the market one can be given for itchy spots, and before a referral to a dermatologist. It was suggested I be placed on Tetrabenazine, a drug not even approved in the United States, and a drug with a possible list of side effects that petrified me. I walked out with a compilation of literature on the drug, but without a prescription, saying I would think about it and be back in two weeks. 

We read every article we could get our hands on about this drug.  I was not going to risk going on any neuroleptic drug. I loved my job and had to say a very tearful good-bye to it fifteen years earlier than planned. Having tardive dyskinesia I was clutzy, falling down stairs, not lifting my leg high enough to rise to the sidewalk, having my head turn to the left while sitting at a stop sign and having to wait until it returned voluntarily to full frontal position. 

I thank God that I had a medical insurance package in place which I had been paying into for years. I became a poster woman for medical insurance policies and instructed everyone I knew to become fully knowledgeable about any drug they were taking, to ask questions before popping any pill into their mouth. I returned in two weeks. It was not only hard for me to look in the mirror to see my facial gesticulations it drove my husband to tears watching me.   Tests had shown that the drug damage had attacked me primarily on my right side, my right lung, oesophagus, and right hand more than left. Both eyebrows seemed to move up and down of their own volition though, as did my forehead. Speaking of head, my head was like one of these wooden dolls that are worked from inside. It turned to the left when it wanted to. 

My TMJ (temporomandibular joints) grabbed like a snapping turtle, and my dentist had a very difficult time even assessing my teeth for splints. I eventually cracked a lot of my teeth and eventually had to be assessed by an ENT (ear/nose and throat specialist) who injected Botox into my oesophagus to ease the oesophageal stricture so that I could swallow foods. 

I fell, down a particularly steep slope at our trailer at Birch Bay, landing right on my head and breaking three ribs. I struggled with pain in my right forehead, right neck and right shoulder. My physician taught my husband to administer Lidocaine injections into the back of my neck at the hairline and into my shoulder muscle. This actually stopped the pain for a while, but why could they not figure out what was causing it? 

I made trips to an acupuncturist, a kinesiologist, and a physiotherapist. They were all convinced they had the answer. People at the pain clinic at St. Paul’s Hospital convinced me that it was connected to the brain and the tardive dyskinesia damage but all they had to offer me was drugs and even marijuana cookies. It is hard to make marijuana cookies without flour and they really stink up your kitchen. Since my husband made them for me he ended up getting high and did not enjoy the experience. Come to think of it, neither did I.

People at the U.B.C. Movement Disorder Clinic convinced me that I had dystonia on the upper right part of my body. An impairment of the muscular tonus I was told, and “wow” there was a specialist at the Vancouver Hospital who was doing wonders with this problem. It involved drilling two holes in the top of the head, while you are awake, but with freezing around the area, inserting leads down into a box placed in the stomach. To say this was unpleasant puts it mildly. When my husband saw me prior to surgery with this helmet screwed to my forehead he cried. 

When they turned the machine on I received electric shocks down my arms. We tried this numerous times. Both the doctor and his assistant thought I was just saying this because I did not like the appearance of the holes in my head or the leads down my chest or the box in my stomach. We did blind studies where my husband would not tell me when he turned the “box” on. To no avail! I would have done anything to rid myself of yet another dreaded pain! I needed to see an internist and two psychiatrists in order to have the box and leads removed from my body. I passed the psychiatric tests to my amazement and the box and I parted company.

I was then seen by another pain clinic specialist who felt I had a trapped nerve from the fall. When you fall on your head, a heavy object, it can trap a nerve in the neck, particularly at the C1/2 level. His test proved positive and he referred me to one of only two anaesthesiologists in B.C. who do the procedure called radio frequency lesioning. I had the first surgery last September. Because of my weight, which was now only 82 pounds, he felt he should not turn the machine up to the highest setting.  They call this pulse radio frequency lesioning. Now aren’t you learning a lot from this article about celiac disease and dermatitis herpetiformis?  

I was wrapped in ice for two months but sadly the procedure failed. I was told that it needed to be turned to the highest setting.  January 4th the procedure was repeated. The insertion of a needle into the spine while one is awake is also unpleasant needless to say, but I was desperate. I was again packed in ice until February when life began to look pretty good. Wow! Clothes did not fit me and there was a whole world of shopping out there to do! I had become slothful with my celiac diet, licking envelopes when I knew the glue contained flour, baking goodies for my family and sifting flour of all things. 

To counteract the appearance of DH spots in my scalp, horrid armies of them, I did the 5-4-3-2-1 treatment. However, I had been using Lidocaine injections for the pain in my neck. I found I could not climb stairs without becoming breathless.  I was confused and weak.  “Likely from two surgeries” I told myself. 

My husband commented that my skin was grey and my lips blue. I attended my general physician - another one. Oh my, I dread even telling you this! He thought I might have sleep apnoea. My husband picked up the machine for the test for two days. He dropped it off at 10:15 A.M. and by noon hour the oxygen people were back at our house with an oxygen tank. I was told my GP was going to refer me urgently to an internist. I dragged the lead of this oxygen tank around with me for a week until my husband became angry. He went himself to see my GP who went “next door” in his building to the Internist who saw me the next day, Saturday. 

Upon taking my history she suspected that I had Methemoglobinemia and suggested we both walk over to the hospital next door right away. 

I was put in the I.C.U. and given oxygen. After numerous blood tests were taken my Methemoglobinemia results came back at 26.5. Death occurs at 40 which could have been within a week to ten days. I was given methylene blue. It was flushed through my veins and it burned like a hot iron! I was given two units of packed red cells. 

For you celiacs with dermatitis herpetiformis, methemoglobinemia is when the blood is converted to another chemical that cannot deliver oxygen to tissues, called Methemoglobin. It was explained to me that it was like all the oxygen in my blood was put in a closet with the door locked. They took me off my beloved Dapsone but after three days the spots were back and as bad as when I was first diagnosed, all over my arms and legs, scalp and even face. 

So I was put back on the Dapsone with strict instructions not to use Lidocaine, and given a list of other drugs and foods that can cause Methemoglobinemia, like Benzocaine and Prilocaine, and even some cold cuts with nitrates in them.

Upon discharge we were fearful that this would happen again so my husband purchased a mini SAT (oxygen saturation) machine from a medical store that sells on the Internet. It is the cutest little machine! You stick your finger into its jaw and it tells your SAT level as well as your pulse rate. For just $39.99 you cannot beat it.

March was our anniversary and our children felt we needed to celebrate. They bought one of these mid-week packages to the Harrison Hot Springs Hotel, with dinners included. We do not go out for meals because I am embarrassed at the inquisition I have to give the waitress each time. We were reassured the first night that there was no gluten in my meal - none whatsoever. Ha! I was up all night! You know the drill. By noon hour the next day I was so sick and my SAT levels kept dropping. A normal SAT level should be about 98, mine is normally 92, but it went from 92, to 87 to 83 until my husband said, “Let’s go”.  

We drove home to our hospital. Doctors there are now familiar with my problem. But this time I had pneumonia and other abnormal blood levels. It turned out that I had the type of pneumonia that is caused by swallowing food into the lungs. That was from all the vomiting I had done the previous night of course. I was admitted to hospital for eight days this time. That ended in April.

I am now able to take Dapsone, but in conjunction with Cimetidine, which is actually a drug for gastritis or ulcers. I still check my SAT level weekly and have been told if it drops below 90 I am to go to the hospital for testing. I am fearful of restaurants because so much of their food products come in large tins and they don’t know what ingredients are in them. When I find a restaurant I can trust, I telephone the Vancouver chapter of the Canadian Celiac Association and tell them. 

There are two stores I know that sell gluten free foods and even a bakery in Vancouver close to where my daughter works, but mostly I make my own gluten free recipes. The hospital dietician had so little information on celiac disease and recipes she asked me to fax her some of my information and recipes. I have become the “Betty Crocker” of celiac food and the “know” person for DH, trapped nerves and a barrage of diseases and problems that I did not have.

Health nightmares? I have had enough and want to get back to my garden and my love of writing. I deserve it!