I was feeling invincible. The SCDiet has a way of doing that. You start to feel wonderful and then you start to experiment. I believe that because the amount of healing SCDiet brings, when you start to experiment, you actually do ok. Your body handles it alright for a little while. Your digestive system stays unusually quiet, your mind clear and ignorant. You see, I’ve had quite a leap in healing over the past 6 months, maybe even more than the previous 2 years. I credit this to eating tons of nutrient dense food (liver, pastured eggs, pastured butter, oysters) and getting off the birth control pill. I’ve had months of no rashes, no stomach upsets at all, not worrying about gluten cross-contamination even. I thought maybe I never had Celiac, maybe the rash was a coincidence. That’s what I thought while I was in China. My body was doing just fine with tiny amounts of wheat in marinades, sauces, and cross-contamination. I didn’t have any stomach pain or rashes, although I did notice a bit of strange gurgling noises. It was probably just my system working a little overtime to deal with all the nasties I was eating. I felt fine. I felt great. I even felt a strange high. I kept telling my family and in-laws how great I felt, and everyone agreed I was doing well.

Our second day in Xian we were combining lunch and dinner because of an evening train ride to Hong’s hometown, Changzhou. We decided to eat at a famous dumpling place to sample the last of the 4 local dishes. Since we were there in between lunch and dinner time they didn’t have as much selection as they normally do. My selection for SCD-legal fare was quite limited but doable. I got a plate of shrimp with cucumbers, a plate of greens and some broad beans (not even sure if those are legal). I was starving. I ate every shrimp but knew that was not nearly enough food to last me a 14 hour train ride. I filled up on some veggies but those don’t provide much energy either. Rather than order more shrimp, I decided to try the dumplings. I had this great plan to bite them once, then eat the middle, so I was only getting a mouthful of wheat per dumpling. Somehow at the time this seemed like a great idea. I had no pressure from anyone to eat these. I had enough cheese and Larabars with me to last the train ride. I just felt invincible.

I ate two dumplings. Then more plates of dumplings came through to our table. Hong actually dropped one plate and they spilled onto the table top. I avoided those dumplings, thinking I’d better be safe and not get food poisoning from something that fell on a dirty table top. I ate two more ‘safe’ dumplings. They were pretty good, but honestly I thought as I was eating them that I really didn’t miss not eating food like this. I would have traded them for bacon or SCD yogurt any day.

The pain started within about 45 minutes. It was upper GI pain, just above the belly button, deep inside. Last time I had pain like that was when I was eating wheat constantly (and sick constantly), so this time all I was thinking was that I would be sick right away. But the sickness didn’t hit. The stomach pain continued. We went to the City Wall in Xian before heading to the train station. I didn’t even realize I was bloated until I reviewed my pictures. Here I am 1 hour after the dumplings. It got worse later.

The massive headache started on the train. I took Gravol to try and sleep. I woke up every hour anyway. A strange old symptom I had forgotten about came back; I had to pee a lot and felt awful trying to hold it. By this time I was just hoping for the sickness to hit knowing it would relieve me of the pain. I didn’t care if I was sick on a train, I just wanted it to be over with. The train ride was 14 hours. I slept fitfully for most of it. I ate one little package of cheese, a banana and drank water in that time, I just couldn’t bring myself to eat anything else. No sickness yet. The Rash was starting to appear.

We arrived in Hong’s hometown and I was so relieved. Finally access to home cooked food. I was still not sick yet and still in pain. Hong’s aunt made us breakfast with congee, eggs and pickled veggies. I knew the congee and eggs would be a bad idea but was starving so I ate it. I would later find out I didn’t digest any of that.. (tmi? sorry haha) Rash started getting itchier and spread across my entire chest.

Here’s where things get a little fuzzy. I know we all got a chance to shower after the late breakfast. I know we went for lunch, and dinner, and I think I had a nap in between? I think I went to bed early while others looked at pictures? We took family pictures at some point too (proof below). Hong’s aunt did laundry and I remember bringing her a bag of my clothes. I remember complaining the mattress was too hard and getting a blanket to fold up and sleep on. Or was that the next night? When did the sickness hit? I think it was that night, about 24 hours since the dumplings. Why is my memory of this so fuzzy? I can remember every detail of the first week, and the last few days, but not the sickness in between. I could ask my family, but I think I’ll leave this as a reminder. <-This is your brain on gluten.

The next morning the pain was all gone and I was left with some pretty intense stomach upset. I ate congee and fresh eggs for breakfast. I tried to drink enough water as we toured around the city that day. We visited Hong’s great aunt and then went to Dinosaur Land. By then I was just looking for a bathroom. I wanted to go back to the house but decided to go to lunch anyway. I ordered chicken soup but it’s obvious they had put something in it since it didn’t taste like homemade. I didn’t really care as I was so dehydrated and weak from being sick. I drank/ate 5 small bowls of it. I was sick at the restaurant too and decided that going home for the afternoon was best. I went straight to bed.

I missed dinner that night and was home alone. I almost passed out from dehydration/weakness but managed to crawl downstairs and get a banana and some water. I felt better enough to sit up at the computer but had trouble getting to sites and downloading files (so much of the Internet is blocked in China, and trying to open attachments/documents on Chinese Windows proved impossible). I turned to the BTVC-SCD and GAPShelp Yahoo groups and got some great advice including the electrolyte drink recipe. *HUGE* thank you to everyone on the boards, I tried to reply to all and hope I didn’t miss any! A bunch of people also mentioned activated charcoal and said you could make it usually by burning some kind of starch. I would try this once well enough. Turns out I missed the nicest dinner of the trip at a restaurant in a park. A local news team was there and wanted Hong’s family to be on TV. The park was beautiful and they all took wonderful pictures. They came home and told me this. I broke down sobbing. I knew I was going to miss the last leg of the trip, 4 days touring around the most beautiful cities and a mountain. I did get a chance to visit most of these places on my last trip to China, so I wasn’t too upset about it. The down feeling just seems to always accompany the stomach upset.

Hong’s mother stayed with me at his aunt’s house since she had to work during the day. The last half day or so of sickness Min took me to a Chinese Traditional doctor. I was very excited and hoping Chinese doctors were more helpful than Western doctors. At the very least it was an interesting experience. Let’s just say Chinese hospitals are a scene of organized chaos. I’ve never had an appointment with a doctor with about 20 other people in the room! They were talking all excitedly and I hoped that meant they knew exactly what to do. Turns out, both the nurse and doctor had never heard of Celiac disease, couldn’t even begin to comprehend why I would not be able to eat wheat, and spent most of the time asking Min about it. Well, the doctor was somewhat helpful in that he prescribed a bunch of herbs and charcoal mix that you make into a tea. I only tried one dose though and it made me feel funny. The doctor also said to only eat homemade food (hurrah!) so I used that as an excuse the rest of the trip to not eat anything in restaurants. I made banana pancakes (eggs and banana) and burnt some bits on purpose. The burnt pieces did taste like charcoal so hopefully I did it right. It seemed to work quite well, either that or by then my system was done with the gluten attack. I made chicken soup and ox tail soup and homemade SCD yogurt for the rest of the week. SCD intro in China, it can be done! It had been 3 days of pain then sickness, but once over I was recovering quickly.

Finally I was feeling better and I even got to experience daily life in China. I went to supermarkets, fresh markets, clothes shopping, visited Hong’s grandparents and got to nap like 4 hours a day. It was wonderful! I’ll cover all that with pics in another post, it was really fun. Unfortunately the rash I got was really bad and stuck around for a good 6 days, but at least my stomach, head and energy were doing well. I’m not happy I got sick on my trip, but it happened, could have been worse, and definitely taught me some very valuable lessons.

I do have Celiac disease. And Dermatitis Herpetiformis. I am not invincible. I will never eat gluten again. I will do my best to prevent cross-contamination in my daily life, just in case. I will stay grain-free (no the congee didn’t help!) and as close to SCD as I have to. I will experiment only with food that might contribute to good health – raw milk, sweet potatoes, chocolate (mental health counts, right?). SCD heals me, that I am sure. SCD intro helped me recover from the glutening faster than I have ever recovered from a severe digestive upset. And next time I go to China – there will be a next time – I will not eat the dumplings.

Stay tuned for some fun pictures of my time living SCD in Hong’s hometown.

BTW Thank you to Terry from who I stole the title for this post

Ok, so I just had another test done in trying to figure out the rash episodes. For a history of that see Post 1, Post 2 and Post 3. I haven’t had it since October but went through with the visits to the Dermatologist anyway. I didn’t expect to get anything from this test since every single test I have had for anything has always come up as negative (nothing) or inconclusive. That includes tests for Celiac, Dermatitis Herpetiformis, inflammatory markers, abdominal ultrasound, liver enzyme tests, thyroid tests, hormonal tests, cortisol tests, etc etc. So the test I had done was called a Skin Patch Test. They stick strips of tape onto your back with a bunch of little circles of allergens on them. You leave that on for over 48 hours (no showering) then remove the tape. Another 24 hours later you have a look to see which (if any) caused reactions. I initially didn’t have any reactions when the nurse took the tape off, but she assured me this meant nothing. She said once the skin is exposed to oxygen the reactions can appear. One girl she saw had no reactions at first but the next day showed 21 of 30 something allergens reacting.

I went home and didn’t think anything would happen. Later that night I felt a crazy itchy spot and sure enough there were 3 spots of red on my back. The next morning I went in to see the Dermatologist and he told me which allergens they were. One was topical antibiotics, but we could rule that out as being the cause of the rash because I haven’t used any. One was dyes he said mostly dark blues and blacks. This could be interesting. I normally wear white tank tops or t shirts under my shirts but also have some blue or black ones. This could be a cause for sure, since it is an infrequent habit. The other was fragrances including cinnamon and cloves. I eat cinnamon very infrequently and he said it’s also in commercial toothpaste which I use infrequently. I will be cutting this out for a while to see if it helps. I will also be figuring out a homemade toothpaste to avoid these kinds of problems. I’m also going to look for a fragrance-free natural sunscreen. I don’t have any other sources of fragrances since I only use basic soap, coconut oil, baking soda, yogurt, apple cider vinegar, or an egg for cleaning my hair and body. See my post on How to Clean (SCD Legally) in the Tips and Tricks section.

So I’m kinda glad I did this test and it’s really the first time I have something constructive to work with. Should be neat to see if this makes a difference at all. I’m also hoping this is completely unrelated to Dermatitis Herpetiformis and that I don’t have Celiac Disease. Who knows, time will tell I guess.

Oh, and I didn’t shower for almost 3 days in order to complete this test. Did I smell? Nope, I used coconut oil and baking soda as a deodorant and that worked ridiculously well. Thanks to Sarah for that tip!

I mentioned in the posts on my rash that I have been on the birth control pill and wish to go off. Well I will be doing just that in 1 week. Here’s a bit of back story:

I was 13 when I started having pain with my menstrual cycle. It was always heavy, 4-5 heavy days, following by another 3 or 4 light days. I would be in pain for about 4 days, with 2 days of such intense cramping I did not go to school. I would be constipated before getting it, for at least 3 days, then diarrhea for 3 days during it. BMs were quite painful as they passed too. I had nausea and mostly did not eat for the 2 worst days.

Advil helped a bit but I had to overdose on it for it to work. My doctor tried different pain meds but none worked. Most gave me heartburn that was intolerable. Finally she prescribed Tylenol 3 with codeine, which helped, and sent me to a gynecologist. The gyn said she suspected endometriosis based on my symptoms and the fact that my mother and both grandmothers had it. She didn’t want to do surgery on me to diagnosis it properly because she thought I was too “skinny” for it. So she put me on the pill at 16 years old, full time. I have not had a period since. 10 years.

The past few years I have become much more aware of treating health conditions naturally. For two years now, I have felt absolutely horrible that I’m on the pill. Every night I grudgingly swallow a little pill and swear to myself it will end soon. I know at this point that it’s hampering my healing and I need to at least try going off it. At this point I am not counting on the pill for contraceptive purposes, my partner and I will gladly use other methods. I’m actually hoping going off the pill helps with low libido and pain during intercourse, among other things.

On top of (or maybe because of?) the endo and digestive problems, I seem to have problems with my pelvic floor muscles. They are constantly clenched and tight, which makes using tampons and intercourse very painful. I have been seeing a pelvic support physiotherapist and it has helped tremendously. Basically we exercise the pelvic floor muscles and stretch them (yes manually..) and just force the body to re-learn that stuff in there does not mean pain! It has helped and I’m hoping that with more general health healing that finally I will be pain-free.

I’m really hoping that dealing with all my gastro problems will in turn help my menstrual problems. Many women with endo say that eliminating wheat and dairy has been very helpful. I have eliminated grains for almost 2 years now and only had SCD yogurt. I hope going off the pill will finally help me get rid of all Candida-like symptoms. I still have oral thrush, even after trying many things to make it go away.

I went to my naturopath who suggested a plan for me:
1. Stop the yogurt, at least temporarily. I do think I have some small problems with the SCD yogurt as I have had pale stools related to it. Pale stools can mean my liver is not producing enough bile, and you want a fully working liver to deal with endo, so bye to yogurt for now! I will attempt to reintroduce once I can gauge if it’s affecting symptoms or not.
2. Continue on my current supplements: multi-mineral, 2g vitamin C, 150mg Magnesium, B complex, fermented cod liver oil
3. Add fish oil, with more EPA than DHA, increase Mag to 600mg during painful menstrual days
4. Yoga, exercises, to relax my abdominal and pelvic floor
5. After one week (in order to give the fish oil a chance to work) I will go off the pill. I’m to keep a diary of any symptoms
6. Read the “Infertility Cure” in order to better understand what the heck is happening down there. This book is supposed to be a wonderful guide to all problems related to women’s reproductive health.

I have no idea what to expect, whether I’ll be in a lot of pain or not. I just know this is the next step in my health. Also after having that darn rash again, I really have to try something. Really, what’s the worse that can happen? I am in too much pain and go back on the pill?

We had friends over last weekend for hotpot. Most of my friends know I am on a very strict diet and we made sure to explain the “rules” before we ate. Basically we had a pot that is divided in two. I put my broth in one side and I was the only one cooking meat and veggies in it. The other side people could put noodles, tofu etc… We did a test to make sure nothing leaked from one side to the other and it was all fine.

Well it turns out that one of our friends put some dumplings (wheat flour coated) in my side by accident and they quickly took it out. I did cook my stuff in that side and may have gotten gluten contamination from it. Anyone know if a 6 day latency period can happen with Dermatitis Herpetiformis?

Thanks everyone so much for all the input. I have never received so much help before, it’s so great!

I did see my doctor today and she still thinks it’s Dermatitis Herpetiformis (DH) the Celiac rash. After doing more research she found that it does take anywhere from 2 to 10 years for the rash to get better once gluten is eliminated. I have been gluten-free for 2 years, but didn’t start looking at body care products until 6 months ago. My doctor did another skin biopsy this time to finally get a real diagnosis. She did one last time as well, but it was inconclusive – she had biopsied a spot, while it should have been of unaffected skin beside a spot. She also did a viral swab and bacterial swab just in case, although we don’t think anything will show.

Some of the comments people have left me have been so helpful. The main trend seemed to be about laundry and body care products. As of last week I was using a natural laundry soap with no corn, soy, gluten, or any other known allergens. Just to be safe though I have already switched to soap nuts and re-washed everything I wear and my sheets/blankets. I use dryer balls now instead of sheets. I do not use soap or hair care products so that was easy. I continue to use apple cider vinegar and baking soda for my hair, and coconut oil as needed for dry skin. I really really really hope that these changes help!
–Edit: Also wanted to add that I got a shower filter as well.

Some other comments have been about mineral or vitamin deficiencies. I do currently take a B complex with 1g B12, 2g vitamin C with bioflavonoids, a multi-mineral without iron, extra magnesium citrate, and fermented cod liver oil with no preservatives. All supplements are gluten, corn, soy free and SCD compliant. My B12, folate and iron levels are in the mid normal level. I haven’t had mineral levels tested. I am now thinking of switching to a liquid mineral supplement to see if that is better absorbed. At this point I won’t bother testing mineral levels, and just assume I’m low.

I’m also going to look more seriously into liver health. The liver aids in detoxing which maybe could help this condition? I’m drinking some lemon water in the morning, hoping to encourage stomach acid and bile output. Also I’m eating lots of veggies including broccoli, cauliflower, cabbage (sauerkraut), onions and garlic. I tolerate eggs well and will continue eating those. My naturopath wants to start me on Chinese herbs for (possible) endometriosis and that should also help my liver. The herbs are Bupleurum and Tang Kuei. I plan to go off the pill and hope that helps my liver health as well, not having to deal with excess hormones.

Some interesting things I learned about DH:

1. Iodine can exacerbate it. The reaction in the skin requires iodine to cause the itching blisters, so it’s advised not to take extra iodine. My multi-mineral had iodine, I will look for one without.

2. Contraceptive pills have been shown to exacerbate it. I have been on the pill way too long now. I want to go off it, and thinking this was the last little push I needed to go off completely. I do suffer from suspected endometriosis, which is why I was put on the pill in the first place. I’m now working with my naturopath to try Chinese medicine and herbs and such to help me get off the pill and deal with it. I may just speed that process up a little.

3. The rash is caused by IgA antibodies present in the blood circulating and depositing in the skin. This is different from allergies where IgE antibodies cause hives, which will respond to anti-histamines. The DH rash will not respond to any anti-histamines, which I found out since it doesn’t respond at all to Benadryl.

4. The levels of IgA antibodies can take a long time to normalize, up to as long as 10 years even when gluten-free. I am hoping that with SCD and healing on that, maybe it won’t take quite that long!

I also just wanted to post what I know this rash is not (based on doctor’s diagnosis and what I have tried):
• Eczema, Psoriasis, Urticaria, Lupus: all possibilities like this were eliminated my first visit to the doctor, who consulted with a dermatologist, did a skin biopsy etc

• Shingles: no pain at all with my rash, and it covers such a large area and reoccurs

• Poison Ivy: first time I got the rash was in January, dead of winter, when everything was covered in about a foot of snow/ice.

• Acute stress: A couple of the rashes may have been provoked by stress but the overwhelming majority of them have come on during periods of relative calm and happiness. I realize long-term stress can certainly affect health in any way and I continue to work on that. I feel much less stressed these days, so that’s the good news!

• Scabies: first clinic visit the doc thought it was scabies. I coated myself in toxic cream to no avail!

Thank you again to everyone. I probably won’t have time to respond to each individually, that’s how many were so helpful! I will figure this out, and feel now like I have some ideas to stay focused on and a plan of action to follow. Oh and I do have a dermatologist appointment, but it’s not for another few months. Hoping to figure it out before then.

—Edit to answer more questions:
I do have 2 cats, they are on gluten-free, grain-free food.

I have gotten a rash a number of times since January 2008. This picture is from my bout last May, which I documented in pictures thoroughly. This picture was the clearest and most PG that I could share. The rash off and on has been going on almost 2 years and I am still getting it. I thought it was related to gluten exposure but now I’m not so sure as I have been super careful the past 6 months to not even have it in my house. I mean really, unless someone is going around the Health Food Store sprinkling flour on all the produce, there’s no way I’m being exposed.

Doctors and naturopaths look at me like I’m an alien. None of them have ever seen it or have any explanation. It does not seem triggered by any food. It does not seem triggered by stress. It does not seem triggered by a change in my lifestyle in any way. Basically after 2 years I’m as dumbfounded as the first time I got it. I just have no idea.

I thought the last time I got it that taking vitamin C in large doses was helping. This time it is not so it was probably a coincidence. Nothing helps, not even Benadryl. I sleep (barely) with ice packs, shifting them and shifting my position every hour. It’s miserable.

The “rash” starts out on my chest, always. It sometimes covers as much as my entire chest from neck down to bottom of the rib cage, up the back of my neck covering my scalp, and all the way down my back to my tailbone. I sometimes get some random spots at the bend in my leg at the hip.

If anyone has ever seen this or have any advice for me PLEASE contact me or comment or anything!

See my previous post on Celiac Disease for a full history of the rash.