So I wanted to write a narrative of my experience with Chronic Idiopathic Urticaria that would help my readers empathize with the trauma constant itching can cause. But I couldnāt, because I was too traumatized.
So, let me just show you how I came to be a Gluten-Free Eater.
Ā Ā
In mid-February of 2013, my skin startedĀ erupting in patchy red spots. At first, they would only appear at night and on my thighs. Until the end of February, they were a mere curiosity. Cropping up at the end of a long day at work, the hives werenāt all that itchy and hardly merited more than a change in laundry detergent. They consistently appeared only on my legs (easily hidden by one of my many pairs of oh-so-fashionable skinny jeans) and simply posed anĀ inconvenienceĀ rather than a crisis.
But then they went buck wild, crept up my torso,Ā inflamedĀ my left eye and puffed up my lips until IĀ resembledĀ aĀ caricatureĀ of Courtney Love.
The pictures above were taken on a day that I almost went to the hospital. I slept on the floor of the bathroom, thinking that some allergen in the carpeting around the rest of the apartment might be causing these flare ups.
I went to the doctor, who prescribed a boatload of medication.Ā To give you perspective, I was on 45 mg of Prednisone, 300 mg of Rantdadine, 1 chochizine, 6 Zyrtec, 150 mg hydroxizine, and 1 Xyzal every day. Every. Day. The prednisone was the only thing that kept me from becoming a miserable red mess, and even on dangerous levels of Prednisone the hives still broke through considerably.
As this condition worsened, I poured hours and hours into educating myself on hives and what caused them. Guess what? Everything causes hives. Even the medication to treat hives causes hives. No seriously, Iām not kidding. Itās like asking the internet, āHey, internet? Where did the first LOLCat come from?ā Causes ranging from Lupus to Cold Temperature obscured my search for a solution as my sanity wavered and layer after layer of skin was torn from my raging flesh.
Nevertheless, IĀ persevered. I would not be daunted by online anecdotes that detailed decades of constant hives with no relief (OK, I was daunted, but I kept Googling anyway). Ā I spent 50+ hours in a matter of days educating myself. I was reading articled from the National Institute of Health and stealing my boyfriendās college logon information to access PubMedās Research Articles. In the end,Ā this research made all the difference.
After learning about antibody IgE, B-Cells, Mast Cells, and countless other biochemical details in an effort to understand the underlying cause of what was happening to me, I stumbled into an article that drew a link between Chronic Idiopathic Urticaria and Digestive Distress (another fun medical adventure that Iād been dealing with for about a year and a half leading up to the first outbreak of the hives). From there I explored, and I found a handful of anecdotal reports that indicated a gluten-free diet was (for some people) a magic bullet for hives.
Switching to a gluten-free diet seemed like the easiest thing in the world (compared to taking toxic amounts of Prednisone!), so I tested it out. After about a week of half-assing this life style change (Panda Express was just too difficult to give up), my resolve crumbled completely at a bowling alley fundraising event. I was literally surrounded by cookies and pizza (as in, I was sitting in the middle of stacks of pizza and cookies while our guests chugged beer and split pins). After a week of a reduced gluten diet (although not entirely gluten free) and much milder symptoms, the pizza and cookies sent my hives into over drive. I woke up the next morning with a considerable break out. My levels of medication had remained constant through this entire period, so I decided that the only factor to have changed (and likely to have caused the flare up) was my poor diet the day before. That day I booked it straight to Whole Foods and stocked up on Glutino Pop-Tarts, Lentil Crackers, and Gluten-Free Blueberry Muffins.
By Monday, my hives were dramatically reduced. By Tuesday they were gone completely. Same for Wednesday. The turn around was drastic, rapid, and miraculous.
Overjoyed with the marked turn around in my health, I exclaimed upon the rooftops āGood Citizens of the Tampa Bay Area, I have a gluten intolerance!!ā. Birds twittered amongst the blooming Bourganvillia trees,Ā carryingĀ buckwheat and millet flour in their beaks as the clouds parted and the heavens smiled down upon my gluten free Quinoa Casserole! Ā New products like Xanthum Gum, Potato Starch, and Rice Flour mysteriously appeared in supermarkets across the city, hidden from my consciousness for all of this time. I would literally (literally) giggle with delight (loudly I might add) upon discovering Whole Foodsā Freezers of Gluten Free goodies (Chocolate Cupcakes, Gluten-Free Pita Bread, Lemon Poppy Seed Muffins, etc.), attracting the attention of fellow patrons who had not yet discovered these gluten-free delights.
Iāve created this blog to share my happiness with others who might just be discovering a gluten intolerance. I sincerely hope this page in particular helps someone researching some mysterious ailment. To that reader, I encourage you to not give up on your search, and to not let your doctors deter you in your research unless they give good cause. I made the decision to go gluten-free based on my own research and with only lukewarm endorsement from two separate doctors, and itās changed my life (I think). Know your rights,Ā persevere, and look out for yourself.Ā Ā In the business of medicine, knowledge is power. In the case of gluten sensitivity, you have to know that no body knows anything about it unless your symptoms are severe and start at a young age (in other words, they know a lot about Celiacās Disease). But Celiacās sufferers account for only one half (or about 1.8 million) Americans. The other half of Americans who suffer from gluten-related ailments exhibit sensitivities to gluten in patterns that are dissimilar from a Celiacās pathology. That means that there are currently 1.5 million Americans who are kind of just winging it. Very little research has been done on later-in-life development of gluten intolerance. In short, if you suspect you have a gluten intolerance, you must keep reminding yourself that any opinions you gather are suspect and likely founded on incomplete data.
As for everyone else, this blog is going to be my hub forĀ recipes,Ā price lists, funny stories, product reviews, things to avoid, opinions, and anything else that comes up as I stumble my way through learning to be gluten free. The big theme of this blog is this: I feelĀ privilegedĀ to be a member of the gluten-free community! It is not a curse or something to regret, but a new lease on life! Iām thankful for (most likely) having discovered the solution to my health problems so quickly (people regularly go years with Chronic Idiopathic Urticaria without knowing how to solve the problem. I went about 7 weeks), and I canāt wait to expand my cooking and baking skills to adapt to this new challenge.
So, read on to find out how I buck wheat.
UPDATE:Ā So, after Iād finally worked my way off all medication, I was mostly hive free for 10 whole, blissful days. And then, they returned. Find out how I eliminated them (once again!) with absolutely no medication below:
5/2/13 Post:
So, about a week after the hives RAGED back into my life, theyāre just about gone again. I wanted to take this opportunity to tell you about how I managed to recover (mostly) within a week for others who might be struggling with multiple allergies.
So, as many of you know, I arrived at a gluten-free lifestyle not because of theĀ diarrhea, bloating, brain fog, stomach pain,Ā porousĀ weak finger nails, and poor balance that I had been experiencing for two years, but because of daily, horrific outbreaks of itchy hives. (Iād seen 6 doctors for the aforementioned symptoms over those 2 years, none of which mentioned anything about trying something as simple as a gluten-free diet). So, after pouring about 60 hours of my own time into researching āchronic idiopathic urticaria,ā I found some links between my other symptoms and the hives that led me to a gluten-free diet. So, with the consent of my doctor, I tested the diet out. I was cooking mostly whole foods at home (many of which Iāve posted about in this blog), and my hives and digestive woes cleared up. I got so healthy that I could probably pass a sobriety test when sober, a feat I couldnāt have accomplished with ābrain fogā and balance problems.
As I continued to grow into my new life style, I enthusiastically tried new brands of gluten-free cookies and breads. As I began to add these processed foods into my diet more and more, the hives came creeping back. I simply figured that I wasĀ extremelyĀ sensitive to gluten, and that some of the products that Iād been eating hadĀ minusculeĀ amounts of gluten despite the companyās best efforts to eliminate the protein. Well, I was wrong. As time went by and I continued to add these products to my diet, the hives got worse and worse. After having a few Udiās breadĀ sandwichesĀ and tortillas, I made the connection, and cut all processed products from my diet once again. This is when I began to suspect a second allergen. Even with the 100% gluten-free diet and the significant (and persistant) improvement to my digestive woes, the hives came roaring back. After a few days, it dawned on me to look through all of the processed foods that Iād been eating in the days leading up to the revenge of the hives. And what did they have in common? Corn. Corn starch, corn syrup (damn you, Udiās!), corn meal, and corn. I googled something like āgluten and corn,ā and one of the first articles I came upon made the claim that gluten and corn proteins are very similar (according to lab testing), and it would not be unlikely that celiacs might have poor reactions to corn.
Well, as luck would have it, by the time I read that article Iād had (delicious) cornmeal crusted Mahi Mahi for dinner, cornmeal for breakfast the following day, and corn chips and hummus for lunch. Fast forward 1 day, and my skin had errupted in large, itchy welts that covered all of my thighs and spread up to my neck.
The next day was even worse. Iād already cut corn out for a few days at this point, and I was really unsure of how quickly I would recover. In an effort to speed things up as much as possible, I googled a few ways to recover from food allergy reactions. In research leading up to this point, Iād learned that itās common for people with gluten-intolerances to have multiple food allergies. So, after googing āantigenic diets,ā I found myself on the oglioantigenic diet (which is for fairly extreme cases). In this diet, you may eat from a gormet menu that includes:
Apples/Bananas/Pears (at first, you get to pick only 1)
Chicken and/or Lamb (but really, I could never eat lamb)
Potatoes (I cut these out in fear of a nightshade intolerance)
and Rice (I also cut this out in fear of an intolerance).
And that is all. That is 100% of the menu. And I wonāt say I was super successful in sticking to it exclusively, but I did a decent job. And a week later, Iām nearly recovered.
I just wanted to share the experience with those of you who may feel discouraged for not finding a cure-all in the gluten-free lifestyle. Keep investigating your foods! Itās amazing how what we eat creates who we areĀ
Update #2 5/10/13:Ā Iād like to expand upon Update #1 a bit, since my inability to stick to such a limited diet provoked the hives once again. Below is a post from earlier today, in which I give my understanding of whatās actually happening inside of my gut, and how Iāve been treating it.
Hello Readers,
Well, my relapse proved to be a little more stubborn than my last post might suggest. This past Sunday, the hives were once again back. They were different this time; painful, not itchy. Raised, smaller, and more red, these were a new brand of hives. Iām not quite sure if they were worse than the original (I think they were, simply because of the pain), but they were definitely different. So that set me to thinking: why would they be so different?
First thought: These hives are the result of a different food allergy.
I tallied my list of food allergies: Gluten, corn, andā¦ ?
Second thought: Why in the hell do I randomly have so many food allergies?
Third thought: Damnit, it Iām never going to be able to eat anything again.
Fourth thought: There must be something systemic wrong with my digestive system.
It was this fourth thought that brought me to the deduction that inspired this post. Pulling from my shallow well of general knowledge, I remembered that allergies develop when the body is exposed to the allergen, then learns a specific response to that allergen. After that point, the body will react to the allergen in the same way each time it is exposed. So, logically, if my body is randomly developing all of these food allergies, it must be exposed to a greater degree than ever before. How?
My hypothesis was that, somehow, food was escaping from my digestive tract into places it shouldnāt go and wreaking havoc. After googling āhealing the digestive tract after going gluten-free,ā I came across the term āLeaky Gut.ā If you havenāt heard of that term before, and you suffer from IBD-range symptoms and diseases, google it immediately. If youāre a stickler for medically-backed science, here:
Long Version:Ā http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856071/
Short Version:Ā http://www.ncbi.nlm.nih.gov/pubmed/15355472
Leaky gut is a condition that occurs when the lining of the small intestine becomes too thin to properly function. In my case, this likely happened because of ongoing exposure to gluten despite having a gluten intolerance. However, it can happen to anyone who eats a poor diet for an extended period of time. As the wall of your small intestine thins, food begins to leak out of your digestive tract. Your body is finely-tuned to prevent this from happening: only particles that have gone through a rigorous selection process make it into your bloodstream (things like glucose, amino-acids, etc). So if food is just leaking into your blood stream willy-nilly, things are likely to go poorly for you. Your immune-system launches into over drive, causing inflammation all over the place. If your digestive tract is chronically leaking unfiltered particles into your blood stream, your inflammation will become more severe. In me, that started out as significant digestive distress, and ended up as hives.
So you have two options at this point: stop eating, or heal the digestive tract. One of these two options offers better odds for long term improvements in your health.
Irony aside, I actually did more or less stop eating for a few days. I wouldnāt recommend this because, well, itās not very healthy. However, it did kickstart the detox portion of changing my diet (yet again!). After some more research, I arrived upon two diets that claimed to ameliorate and even cure a Leaky Gut: the Paleolithic āPaleoā Diet and the Specific Carbohydrate Diet (SCD). The Paleo Diet has become pretty popular in the last few years, producing dozens of popular cookbooks and blogs. The SCD Diet is less well known (and frankly a little sketchy in its presentation), although it has been clinically tested and has been used to treat patients with IBD-spectrum diseases. Hereās a secret: the two diets are nearly 95% similar.
I have books on both, but Iāve selected the āPaleoā moniker for my diet (simply because of the wider variety of recipe books). Basically, the Paleo Diet is one of the more extreme of the restricted diets (the SCD is even more extreme because of its specific design in healing those with IBD-symptoms. If you have more severe symptoms, consider this diet over the Paleo diet to start.) The Paleo Diet is designed around the assumption that humans, as a species, evolved to eat a certain diet. This diet exclusively included only veggies, fruits, meants, and nuts. No dairy, no grains at all.
As a foodie, I believe I can anticipate your reaction: āBut I love cheese!ā I do too. I really really love cheese. But, as Iāve said before, hives are a good motivator for getting through restrictive diets!
One day after starting this diet, my hives were once again gone (now, this one day came after nearly 5 days of an otherwise very restricted diet. Itās unlikely that one day alone would be enough for most people). Iām feeling great (although admittedly a little hungry), and for the first time Iām nearly 100% confident that this is the final solution. Everything about this chain of thought makes sense to me and is backed by science.
Some very important things to know about a Leaky Gut tailored Paleo Diet
1) Paleos are all about acquiring all nutrients from foods. While this might be ideal, when healing it seems inefficient. So, donāt be deterred from taking probiotic supplements rather than eating fermented veggies.
2) Nutrients vital to healing the Leaky Gut: Probiots, L-Glutamine, Zinc, Vitamin D (stand around in the sun!). Ā You canāt begin to heal without these things. I wonāt go into the details of the diet here, but do some research and youāll find the guidelines. Here are the two resources Iāve found most helpful:
Practical Paleo (http://www.amazon.com/Practical-Paleo-Customized-Whole-Foods-Lifestyle/dp/1936608758): Half text-book, half recipe book, Practical Paleo offers a 30 day meal plan specifically designed for healing digestive disorders. It offers really great, easily understandable explanations of the science behind leaky gut and the nutrients needed to heal it. Iād say this is a vital resource for anyone hoping to heal a leaky gut.
SCD Lifestyle: (http://scdlifestyle.com/2012/03/is-celiac-disease-reversible/) This website IS trying to sell something, and it DOES look sketchy. However, its explanations are in sync with some NIH articles Iāve read and with the Practical Paleo book linked above (the forward to which was written by an MD). Just read through the page linked above and some other of those pages. You can get most of the valuable info from the site without buying the book (trust me, I bought the book. Itās underwhelming).
Again, Iām sharing this with you in the hope you it helps either you or someone you know. The good news is, once the gut is healed (which is possible), you can reintroduce formerly offensive food in moderationĀ Ā So unlike eliminating gluten, I may one day be able to add cheese, ice cream, and quinoa back into my diet! huzzah!
As you can see, treating hives with diet changes isnāt particularly easy, and it certainly isnāt instant. Each time you fail, you begin to doubt whether or not your diet has anything to do with it! Just keep reminding yourself that if you can cure this problem without remaining on toxic medications for your entire life, itāll all be worth it. The misery you experience from your physical ailments should give you ample motivation to stick to these restricted diets. Just keep on keeping on!