OK, first a bit of history as I don’t believe I’ve blogged about this. Thinking back, I don’t think I have ever blogged this because when it happens it’s so unbearable I can’t be bothered to sit down and type. Then when it’s over it’s somehow so forgettable! It started the day after I started SCD, January 29th 2008. I got a wicked awful rash. I was completely caught off guard and bewildered. What the heck was this, die off? This soon? I posted questions on message boards but most people hadn’t had that reaction. Of course I first noticed this Friday evening. Great, doctor is not available. By Sunday the rash was all across my chest, on my neck, a bit on my back and my scalp. I went to the after hours clinic.
“Oh, yep, you have scabies” Um, what? Scabies? Seriously? (Scabies is a bug that burrows in your skin, causing an allergic hives-like reaction)
Ok.. so I went to the pharmacy and got some toxic cream and slathered myself up and down. I did 5 million loads of laundry, vaccuumed the entire house and slept on the floor for 3 weeks to make sure my matress didn’t have bugs. Throughout this my bf (sharing a bed) and parents didn’t get a single bite. Hmmm.. Rash itched like mad, but went away after about 4 days. I repeated the toxic cream and frantic house cleaning a second time at the advice of the pharmacist and the instructions on the tube of cream.
That was January, fast forward to summer 2008. I get another rash, this time mostly on my neck and back. I went to the after hours clinic again, because again this happened on a Friday evening and became unbearable by Sunday. This time I was told it was heat rash causing hives and to apply an ice pack, stay out of the sun, and have cold showers. Fine, done. Rash still itched like mad, but went away after about 4 days.
October 2008 comes around and I notice a few little red bumps on my chest. Panic ensues, and with good reason. The next day I’m in full blown rash mode. Scalp, neck, chest and most of my back. Of course, what day is it? Friday. I call my doctor, they can’t see me today. PLEASE I pleaded with them, but nope they can’t fit me in until Tuesday next week. FINE. I called my naturopath, at this point crying. They gave me an appointment that afternoon. I went in and she just looked at me like I was an alien. What the heck is this rash? She said she’d never seen a thing like it. Great. She said that sometimes parasites can cause weird rashes, or liver problems too. She sent me home with a list of tests to ask for from my doctor. Tuesday rolls around, and of course the rash is on its way out. Stupid me didn’t take pictures of it at its worst, so my doctor thinks I’m a lunatic, a rash can’t be that bad, it’s probably just from using a weird soap. I demand the tests anyway and she agrees. She really is a good doctor once you get in to see her, and if I suspect anything she’s always thorough to figure it out. I’m sent away with a parasite stool test, blood test, liver function test and an abdominal ultrasound (2 months wait).
3 weeks later, another rash. Oh it was awful, to get it so soon again. Since I was still waiting for test results, I didn’t go see the doctor. Still being stupid, I didn’t take pictures. Mistakes.
Test results showed nothing except for a slightly elevated eosinophils. Doctor thinks I have some form of colitis in the upper GI tract that is causing irritation. She decides to book me an appointment with a GI doctor. Oh, umm, that GI doctor she sent me to last? Doesn’t want to see me again. He thought I was crazy for thinking I had Celiac disease and told me to find a new doctor when I didn’t believe him. Great. So she books me an appointment with a GI doctor she knows is good, but the waiting time is average 1 year. I made a face I guess because she looked at me with sympathy and said “Well, you’re still here right (as in alive, not dead) so that’s good! Wow, how comforting, I have no idea whats wrong with me but I’m alive, yay. Naturopath thinks it’s parasites. She puts me on an herbal cleanse. (For the record, the herbal cleanse helped tremendously, but did not cure the rashes!).
January 2009 I go to Mexico with my bf, excited to get away and forget about my troubles. I stick to SCD as much as I can, having lots of plain meat, steamed veggies, eggs, bananas, and papaya. Day 2, I get the rash. I called the doctor for the hotel in and he starts talking about allergies to foods. He recommends no pork, seafood, strawberries, chocolate or nuts. Ok, I had been having lots of seafood so I stopped that. Also did the cold ice packs and cold showers in case it was heat related. Rash itched like mad but cleared up after 4 days.
May 2 2009, the day I moved into my new house, I notice spots. Panic. It’s Saturday, so of course I can’t see my doctor. I wait patiently until Monday and call the doctor, pleading with them. They book me for Tuesday morning. My doctor cannot believe what she sees and almost started crying for me. Finally I have her taking it a bit more seriously. She actually admits she has no idea what it is and asks me to stay, she’ll be right back. She went flipping through her medical books until she saw it. Dermatitis Herpetiformis. Celiac rash. There was no doubt in her mind it looked identical. That coupled with the digestive history I have, she was convinced. So she did a skin biopsy right then which she guaranteed me would tell us if I had it. If I did have it, then it meant I did have Celiac disease. This didn’t have much of an implication for me as I was already on SCD, but one thing I hadn’t been careful of is handling wheat containing food. I still cut up bread and served pasta to my family, touching it and probably (accidentaly) ingesting it. My doctor recommends absolutely staying away from all gluten so I do.
2 weeks of the longest wait ever. I’m not sure if I was nervous and scared for having such a disease, or excited to finally have answers. Either way my heart jumped at every phone call. I finally talked to the doctor. UN-freaking-believable. The test was inconclusive. Turns out she had to take a biopsy of normal unaffected skin too but didn’t know. She swears to me I have Celiac disease and recommends I follow the proper diet for my lifetime. If I happen to get the rash again, we’ll do the biopsy properly. I felt a bit down, but decided to just think of it as a diagnosis and let it be. I now tell people I have Celiac. Technically on my health records, I don’t have Celiac. My previous GI had done a blood test that returned negative, but I wasn’t eating much wheat then so no wonder it did. All the times I had the rashes I can relate to having had gluten: the day before I started SCD I ate barley soup, the rash in the summer was after a bbq with burgers and buns on the same grill, October/November I tried eating a restaurants, January I ate buffet food in Mexico, and when I moved into my house we ordered take out burgers for everyone (I served everyone, then ate my own food with my hands without washing).
That brings me to now. I have not touched gluten since early May. I threw out my hair products and soaps (all contained gluten, I have replaced everything with one natural bar soap). I have not had a rash, a pimple, anything on my skin. It’s pretty unbelievable how clear it has been actually. I really hope this means it was just the gluten. I’m happy on this diet and don’t care if I’m on it my whole life. I’m less focused now on finding the ‘culprit’ and more on healing my (probably) damaged gut. I just can’t believe it took this many years to finally conclude that I probably have Celiac disease. Looking at the list of symptoms, I had so many: weight loss, iron anemia, unexplained low B12 and folate, abnormal appetite (feeling extremely hungry after meals), fatigue, weakness, hypoglycemia, missed menstrual periods, heaving bleeding and cramping during periods, mouth ulcers, scalp sores, unexplained acne (onset after teen years), abdominal cramping, diarrhea, pale bulky foul-smelling stools, abdominal distention, muscle
cramping, tooth enamel defects, tingling in the hands and feet, and finally Dermatitis Herpetiformis.
Kat thank you SO much for sharing this. I practically started crying while reading this.
The mad itching is enough drive you to depression, it screws with your whole life and almost makes it impossible to live. I found out 2 weeks ago that it is gluten causing my pain, and I am SO thankful to read stories like yours while I heal. The important thing is that healing is possible. Thank you for documenting your journey.