MY HISTORY Updated 11-06
In 1984 at the age of 21 I started having gut aches, nausea, bloating and cramps. I had ultrasound, and upper GI, and was put on many drugs (donatol, bentl, compazine) and nothing helped. I began to develope panic attacks and anxiety. It was decided that what I had was stress. I was sent to therapy and given xanax (a tranquilizer). During this period of about 6 months I lost 20 lbs and now weighed 142 lbs.
Over the next few years the Stomach aches would come and go and I grew to live with it. The anxiety was only present when the stomach aches came. The doctors saw it the other way. Unfortunately in late 1988 the condition worsened and by the end of 1989 I was hating every minute of life, I always felt sick. (I did not vomit or get diarhea as many people do)
At this time I underwent an endoscopy. I was diagnosed with IRRITABLE BOWEL SYNDROME which I never believed. They also failed to take any tissue samples from my gut, this would later turn out to be the mistake that cost me a year.
In sept of 1990 I was worse. I went to another doctor for a second endoscopy. A few days later I was informed I had Allergic Eosinophilic Gastroenteritis and that it was treatable. This was the happiest day for me in years.
I spent 3 months on a tapering dose of prednisone while taking gastrocrom (300mg 4x daily) at the same time. From january 1991 thru sept I was symptom free and when the gut aches stopped so did the anxiety. I also gained 20 lbs. Unfortunately the gastrocrom stopped having positive effects and I stopped taking it. During 1992 I would take a tapering dose of prednisone every few months.
I saw an article on the treatment of EG with KETOTIFEN and I got some from mexico. The only effects I had over 8 months on this drug were drowsiness and weight gain (I got up to 180 lbs).
A 1996 endoscopy showed that my condition has spread to my esophagus (eosinophilic esophagitis) so I was now getting pain in swollowing. I was now on prednisone all the time although not on the same dose all the time. I tried whenever possible to take it every other day.
June 30 1997. After a trip to washington DC and the National Institute of Health (my doctor submitted my name and they wanted to get my statistics in their database) I was given a new medicine to try. It is called "ACCOLATE". It is an asthma prevention medication that may stop the eosinophils from doing their thing to my gut.
To make a long story short, I had now taken prednisone for almost 10 years. The alterative day treatment no longer works on me. I still taper off until the gut aches return. I have taken as much a 70mg per day for a week.
There is a good book about prednisone called COPING WITH PREDNISONE it just came out in 1997.
( I have also tried acupunture, herb teas and chinese medicine.)
In the fall of 1998 I saw an MD who is also a nutritionist in Ashland Oregon. I was tested for food sensetivities and candida infestation. The food sensetivity test was not an allergy skin pric test but and extensive blood test done at the GREAT SMOKIES DIAGNOSTIC LABS. My results showed very low "good bacteria" in my digestive tract and high candida. My food sensetivities were as follows: High reactions to wheat, corn, gluten, grapes, eggs, barley, oats, plums, peaches, pineapple and many more.
In response to many questions I have been asked I have no sensetivities to dairy, meat, soy, or most vegetables.
Remember that when I say corn that includes corn starch and corn syrup (and dextrose and fructose) modified food starch, maltodextrin, sorbitol. now just try to avoid all of that. (I recently discovered the USA is an over user of corn products. Other countries, like Australia and others, don't ever use corn syrup.)
When I avoid those foods I do not get the severe stomach aches but have not been able to get off prednisone without getting slowly worse.
For 9 months starting in the fall of 1999 on a recommendation of a visitor to this site I have undergone NAMBUDRIPADS ALLERGY ELIMINATION TECHNIQUE. This is a technique of accupunture in which you systematically treat the body for all possible allergens and supposedly set your bodys energy flow (I forget what they call it in accupunture) back to being correct. You can read more about it on the NAET web site. I have also put links up to some books related to the subject on the treatments page. The treatment is not quick, it takes months. Let's all hope its not a scam. I have heard it worked for some. It did not work for me.
I have also taken Methotrexate, a chemotherapy drug, to try to get off prednisone. I had definately decreased my prednisone (which was usually around 40mg) to about 10 or so. Sadly it's not the solution I hoped for.
As of january 26 2002 I was in a study at the NIH for 9 months getting the new anti-IL-5 medication. I hear the results to this study were being released this march (2004) but I have never seen them. I had to have 3 bone marrow draws, 3 endoscopies and a lot of blood tests. I had to fly to DC once per month for 9 months to recieve the IV of the medication. My Eosinophil levels would drop to zero with the drug. However I still had the reactions to foods.
I discovered I could treat the pain in swallowing with FLOVENT. Rather than inhale it, I swallow it. Two puffs into the mouth without inhaling and then swallowing. I do this twice per day when I have a problem. It goes away for a few weeks.
In the summer of 2002 I had a trip to the ER, I couldn't swallow for 16 hours. I had developed and esophageal ring. Probably from the increased acid in my stomach from prednisone. The ring went into spasm. I had been having trouble swallowing for a few years. Upon the ER endoscopy they did a ballooning of my esophagus. I now have no trouble swallowing.
Between the 2002 study and the present I would take 70mg of prednisone for about 10 days and then go cold turkey for 2 weeks and repeat. It seems to work and I get to live off prednisone for a while. I don't suffer withdrawal.
In 2004 I was asked to participate in the ANTI-IGE (Xoliar) Omalizumab study at the NIH. The study was 16 weeks. During the study my eosinophil count dropped and my symptoms were nonexistent but I was still on 25mg of prednisone every other day as well as DHEA 20mg every day and Prilosec 20mg every day. At the conclusion of the study my symptoms returned while not on Xolair for a few months. So in June 05 I returned to Xolair (at $500 Per Injection) and within 30 days my symptoms were gone. Since then I have received a prescription from my local allergist for Xolair and now get an injection once per every 3 weeks (150mg). I am now down to 10mg of prednisone every other day, with an occasional increase for a week or so. I am almost completely symptom free. I rarely worry about what I am going to eat and feel much better on lower dosages of prednisone. I still take Nexium for a reflux issue and Xantac 300 at bedtime. I also now take Iron and DHEA as prescribed by my doctor.
Here are the related links
Feel free to email me your discoveries or questions but please don't ask questions that have been addressed on this site.
I don't get around to reading the forum like I should so if anyone thinks there is anything new I should know about please pass it on, and I thank you all for finding the site usefull and participating.
Be Well