I came down with a horrendous case of chronic urticaria in September, 2008. Over the course of 13 months I saw 5 specialists, had countless blood tests done and was on 17 different drugs (all in the same day) at one point - all to no avail. But there was a light at the end of the tunnel (so far), I have been able to control my hives and have been basically hive-free for the past 2 months. I spent thousands of hours on-line looking for information, cures, trying to find anything I could that would help since I was getting nowhere with my doctors. Eventually (after months of research) I started to see results. I learned so much from other peoples stories that I swore if i ever found anything that helped I'd let others know - it was by far the most miserable, depressing time of my life - and every day I still wake up afraid to look in the mirror incase they've come back, but hopefully some of what I've tried will help even one other person.
Of the 3 allergists I saw, all three agreed that the urticaria was most likely triggered by a post-partum sepsis infection I suffered after the birth of my son in May, 2008. They all agreed that the serious blood infection (due to a piece of retained placenta) would've been the straw that broke the camels back and set the auto-immune ball rolling down its disasterous course.
Onset of Symptoms
I suddenly woke up one Thursday morning with hives on my arms and legs. I had no real previous experience with hives before this and thought I must have ate something the night before that caused me to errupt in hives. Looking back though - a few weeks after the birth of my son I had isolated incidents of hives on my wrist here and there - nothing serious and a benadryl at 3:00 a.m. while I was feeding my newborn took care of the hives and I didn't give them a second thought. Unlike some people, my hives didn't gradually build - I woke up one morning with hives all over my body, probably 80% coverage - and that was the begging of the end!
September through to December I was seen by my GP who prescribed prednisone for 2 weeks in hopes it would eliminate the hives permanently (no such luck) as well as accupuncture as she insisted it was stress related. After a number of costly accupuncture treatments I had no relief of symptoms (and the hives came back with a vengance after the 2-week round of prednisone) so I insisted I be referred to an allergist.
The first allergist I met with insisted that they would "burn out" eventually and that they would have to run their course. She had no real interest in determining why they occurred in the first place and when I asked if it could be something in my diet she insisted that chronic urticaria is not food or diet related. She prescribed more prednisone, prescription strength Reactine (20 mg) and Zantac (ant-acid). I had no real relief and was having serious issues sleeping - the itching was unbearable and kept me up at night (but if you're reading this I'm sure you know what I mean).
I read that there was sometimes a connection between hypothyroidism and urticaria. I pushed my GP to test my thyroid (even though he doubted the claim) and we eventually discovered that I was slightly hypothyroid. I was prescribed eltroxin and I saw a very mild improvement for only a few weeks. Increased dosage of eltroxin did not achieve any additional relief, and at one point I thought maybe it was making the hives worse.
After 6 months of agony and misery (I was off on maternity leave and spent most of my days bawling and scratching myself raw) I was so frustrated. I had purchased a few items from online (Oxy Hives spray - didn't work, homeopathic remedies - didn't work either) to no avail.
I started having very frequent episodes of angioedema where my eyelids would swell as would my lips in addition to my daily bout of hives that eventually covered 90% of my body. The hives would sometimes take 2 days to disappear, so I'd go to bed with day-old hives and wake up with not only my old hives, but 100's of new ones as well. The swelling of my lips was almost a regular occurence and the swelling of my eyelids and bridge of my nose became more and more frequent.
In the spring of 2009 I requested I be sent to a new allergist. My doctors were chalking it up to stress but I was persistant and hounded one of the best allergists in the Region until eventually his receptionist agreed to make me an appointment (I wasn't above crying my eyes out on the phone to her!). The second allergist I saw wasn't overly helpful and again insisted that there would be no point at all in testing for food allergies as I couldn't possibly ingest the same thing day after day. He did a battery of blood tests, including the CU Index that I had to travel to the US to do. My blood work came back as having a number of auto-immune conditions including hypothyroidism, low B12, low Vitamin K, malnourishment and liver issues. I was devestated - I was always healthy! At this point I was on about 12 different prescription drugs including Plaquenil.
I continued my daily drug routine which consisted of:
- 2 (20 mg) Reactine as needed (sometimes 3 times a day, up to 6 20mg pills a day)
- 160 mg of Allegra (up to twice a day)
- 1 Zantac twice a day
- 1 Plaquenil twice a day
- Effexor (for the depression that came with the freaking hives)
- Eltroxin (300 mcg once a day)
and a handful of other drugs that I had to start taking to counter the reactions of the other drugs.
I had no improvement and continuously got worse. The angioedema was getting more severe and I started requiring a shot of an Epi-Pen when the swelling got bad as it started to lead to my throat and caused tightness in my chest. Yet the allergist insisted I was okay and the hives had to run their course. he said it could take 1 month, could take 20 years - talk about depressing.
In June I had a sever anaphalactic reaction to an advil (I had never been allergic to advil or NSAIDS prior to getting hives). I ended up in the hospital with significant swelling of my face, nose, lips, eyelids, tounge - if it was a mucus membrane, it was swollen. I didn't initially respond to the first dose of epinepherine so I had a second dose. I ended up in ICU case because my heart wasn't tolerating the two doses of adrenaline well.
The day I got discharged I took every prescription I had and put it in a ziploc bag and threw it on top of the fridge. Two days later (once the prednisone I was give by IV at the hospital was wearing off), low and behold, my hives were better than they had ever been before. As the week progressed my hives got less and less. I was convinced that something in one of those medications was making them worse.
Although the hives did not disappear, they did significantly reduce in number and size the longer I was off all medications. I took benadryl to make myself sleep through the itch, but otherwise I was drug-free.
One night I came across an article where a woman noted that she thought her CU was caused by Celiac Disease. I did some further research and started to see a number of links between Celiac Disease and Gluten Intolerance to Chronic Hives in adults and Children.
That week I booked an appt. with a Nautropath. Looking back, I should've booked that appointment in September 2008 instead of suffering and waiting until July of 2009 to make that call.
The nautropath immediately tested me for food allergies and put me on a hypo-allergenic diet. While waiting for the food allergy results I started the Medi-Clear diet by Thorne. It was a shake that I mixed up in the morning while following an allergy-reduced diet.
The diet was tough, especially during week 2 where I had no meat protein - I had to cut out everything and go back to basics, raw whole foods and water. She supplemented me with Ester-C (Vitamin C), Stinging Nettle Flower (tincture) and an Immune Boosting complex called Deep Immune (by St. Francis). By the second week of following the Medi-Clear diet I was almost hive free. After completing the 3-week cleansing diet I was about 95% hive free and would only wake up with a handful of hives on my inner thighs in the morning. They responded to one benadryl and would be gone within an hour.
I eventually got my food results back and although I didn't test positive for Celiac Disease - I did test positive for gluten sensitivity, as well as a sensitivity to a number of other foods - the #1 trigger for me (and this is a common trigger for CU) was the food additive FD&C Yellow #5 (aka Tartrazine).
I can't stress this enough - FD&C Yellow #5 mimics a compound in Asprin (NSAID) and is a common trigger for CU. When I started looking into what was used in my prescriptions (remember I had always insisted that I could be something I was eating every day), I found that this dye was in Effexor (colour of the capsuel), my dosage of Eltroxin (100mcg is coloured yellow - 2 50's are equivilant and have no colour) as well as my birth control pills. Not only was I ingesting FD&C Yellow #5 in a number of foods (it is seriously in EVERYTHING, yellow or not - tartrazine is in so many foods it's unreal), I was ingesting it on a daily basis just by taking the pills that were prescribed to me to control the very hives it was triggering.
It's now November 2009 and I've been completely hive-free since early October. It was a lot of work and I've had to modify my diet - I now look at the back of every can to see if yellow or colour is listed, and I have greatly restricted gluten from my diet (although I do cheat from time to time). Raw and whole foods that aren't processed are "safe" because there is less chance of having food colouring or preservatives in them - so it restricts what I eat, but the hard work was so worth it.
If I mistakenly eat something with yellow (i.e. French Vanilla Ice Cream - it contains FD&C #5, yet Plain Vanilla doesn't), I will quickly get a few hives. For the most part I can avoid the hives all together by limiting gluten and avoiding the food dye like the plague.
I'd encourage anyone going through this to please look at the research between FD&C Yellow #5 (Tartrazine) and Chronic Idiopathic Urticaria, as well as the Gluten connection - and consider looking into the Medi-Clear program. In my opinion it saved my life.
**follow-up blood work since I've been in remission has indicated that all of my levels have returned to normal**.
I hope my experience can help someone else out there - this was the most miserable year of my life, I wouldn't wish it on my worse enemy.