My Story

I'm putting my story here not because I like to dwell on being ill (I don't!!), but in the hopes that it may help people with similar problems find a direction in which to start going.  And please use it as a guidepost, not a manual.  I have a good science background and medical professionals in my family but I am NOT a doctor.  Check out any self-diagnoses with your doctors.  If they don't want to listen to you, find new doctors.  It's your body, your health, and your life - don't entrust yourself to anyone who doesn't take this seriously.

I was diagnosed with celiac disease in 1994 after heading toward a diagnosis of Irritable Bowel Syndrome.  Within days of beginning to eat completely gluten free, I felt like a new person.  Within weeks, the only symptom I had left was lactose intolerance.  This disappeared within the first year or two.  I had developed what seemed to be severe allergies (gastrointestinal and mouth sore symptoms) to squashes, melons, and walnuts a couple of years before my diagnosis, but was told allergy testing was not necessary as long as I planned on avoiding those foods.  No problem - I thought.  I've had respiratory allergies since my teenage years, had always been a "rashy," sensitive skin person, and had mild migraine headaches preceded by flashing auras since college.  I discovered that if I took an antihistamine when the auras first appeared, the migraine didn't happen, so everything seemed fine.

Jump forward to 2009.  Obviously, I continued to get older!  After my 50th birthday a few years before, I began to notice more and more GI and skin problems.  My doctor confirmed that this was to be expected as one ages - just keep an eye on whether or not things got worse.  That summer I had the worst problems with hay fever I'd yet had.  My eyes were constantly red, my skin itched continuously, and I was always congested.  I took antihistamines when I could, but they all tend to either hype me up horribly or put me to sleep and make me sick, so most of the time I just dealt with it.  I began to notice more and more foods that seemed to be bothering me and the list I avoided grew longer.  Then in October, I had H1N1 influenza.  I was pretty sick, but nothing out of the ordinary for a strong flu.  I had two courses of strong antibiotics for a chest infection that hung around.  By Christmas, I was still dragging myself to work and through the day.  By spring, I suspected I must be eating gluten in something - the GI symptoms and lack of energy were very familiar.  I began going through everything I ate with a fine tooth comb, calling manufacturers, and trying to figure out what the gluten I must be eating was in.  I did find that an antacid I was eating for calcium had been recalled the previous fall for undeclared wheat in one of the ingredients - I'd never heard of the recall and was still using them from the big stash I'd ordered (the flavor I loved was only available on the East Coast).  Cutting them out helped, but not much.  I began elimination diets to try and figure out if I'd developed new allergies.

I discovered I felt better when I avoided some foods, but not all the time.  By summer I was very confused, losing weight, and back at the doctor's office.  I managed to get a referral for allergy testing but only if I went to a GI doctor first.  It's lucky for me I couldn't work the appointments out in that order!  The allergist should have been my first stop years ago - out of the 42 foods I was skin tested for, I showed absolutely no reaction to 4 of them.  Most were in the range where they need to be challenged for confirmation, but many were in the severe reaction range.  I also tested extremely high for several respiratory allergens.  I was sent home with a follow-up appointment, list of foods to avoid (it may have been easier to list the foods I could eat at that point!), an itchy back, and a handful of prescriptions - including one for two epi-pens, which I was told to keep with me at all times.

The first problem arose when I filled the prescriptions.  One of my most severe allergies is to corn - any of you with a corn allergy know where I'm going!  I was told that every one of the medications I'd gotten a prescription for contained corn or a corn derived ingredient and that I would need to go to a compounding pharmacist.  Luckily, through a medical professional relative, I found a great one with a pharmacist who was gladly willing to help me figure out what to do.  It also turned out that once I cut out my allergen filled food, I hardly needed medication.

I continued to improve over the next few months, but also continued to lose weight.  As I conducted my elimination diets and was tested for additional foods, I began to notice that the foods I tested negative to for allergies but that still caused GI problems and allergic reactions had something in common - they were all high histamine foods.  Hmmm.  After much research and learning that this is a new area of medicine, I decided to cut out all high and medium histamine foods and see what happened.  Pretty much a miracle is what happened!  I felt almost completely normal - and I realized that my GI system was probably pretty shot still and would take time to recover.  After another month, I cut out high oxalate foods as they can make histamine problems worse and can also be hard to digest.  Another big jump back toward normal.  If you think histamines may be causing you problems, look at my histamine page for more information.  If you've been allergy tested and have negatives on foods that cause you GI tract, respiratory problems, skin issues or hives you might want to investigate this.  Especially if, as was the case with me, everyone in the allergist's office comments on how huge your reaction to the histamine control skin prick is.

As of this writing, it's been 9 months (UPDATE - over 8 years, my GI tract has healed, and I can eat moderately containing histamine foods) since that first allergist visit and i feel great.  I can eat, I have energy, and I haven't felt like this in years .... and years!  I've had two migraines since my allergist visit - both happened the day after the two times I accidentally ate corn products.  I've gained back enough of the weight I lost that I feel I have a little cushion for emergencies.  I have no skin problems.  What about that GI doctor visit?  It was a disaster - I was told no one could have that many allergies and that I needed to be in surgery the next week.  I have several new doctors.  And learned several very important things through this adventure:

1.  If your doctor won't listen to you, get a new doctor.

2.  If you think you have a food allergy, get a battery of food allergy testing done.  Don't leave out top allergen foods that you think you're fine with - I am very allergic to several things I did not suspect.  And most likely have been for years, resulting in years and years of inflammation.

3.  If you are celiac, be careful with corn.  Research from the 70's and early 80's found over half of celiacs have antibodies to corn.  Other research found corn damages the intestines of these celiacs in much the same as gluten does. 

4.  If you are celiac, be careful with modified starches and proteins.  Recent research questions whether they might also be harmful to celiacs since they have been modified to have structures very like the structure of gluten.  I know .... all those great bread products coming out in the last few years are great because of them.  Especially if you have a nagging suspicion you might be getting gluten from somewhere, you might want to test out what life is like without them.

5.  If you have food allergies or are celiac, subscribe to FAAN's allergy recall alert - the link's on their front page under Alerts and News.  You'll receive email each time a food product anywhere in the country is recalled for mislabeling or undeclared food ingredients.

6.  Don't stop eating.  To some of you, this will sound like duh.  But when everything you eat makes you sick, eating sounds more and more "unappetizing."  Try a low histamine approach with foods you know you're not allergic to.  You'll probably still feel sick for awhile - especially if you have GI tract damage.  But it will get better.

7.  Once you find food you can eat, get as many Vitamin A and Vitamin C containing vegetables (cooked soft) and fruits in as you can.  You need these to heal.  Take Vitamin D drops.  Take a bone vitamin/mineral supplement - see my food lists for what worked for me when nothing else did.  Use magnesium lotion or soak your feet in Epsom salts - your GI tract needs these vitamins/minerals and gets worse as you can't absorb them.  It becomes a vicious cycle.

8.  Laugh, smile, do things that make you feel good!  Look up the research on how this helps healing and put on your funniest movies!  Look at funny pictures.  Things will get much, much better.  :)

UPDATE:  Also, I had my DNA run through 23 and Me and with the help of Genetic Genie found I have several methylation defects that predispose me to histamine problems, gut problems, and more but are easily treatable with non-synthetic vitamins.  I highly recommend Dr. Ben Lynch's website here if you're wondering if this might also help you.