April 29th, 2012
How do you treat eosinophilic esophagitis?
We all are seeing this disease more often than in the past. Whereas the diagnostic criteria now seem firmly entrenched, the optimal treatment strategy remains to be determined. Treatments have included food avoidance, anti-secretory drugs, topical steroids, immunomodulators, and combinations of these approaches.
So I am interested in how you treat eosinophilic esophagitis.
What is your first line therapy?
Do you put every patient on a PPI?
Do you use food avoidance, and, if so, is it directed empirically or by allergy testing?
Which topical steroid do you use?
Do you treat before dilating?
How long do you treat, or do you maintain patients on therapy?
Let’s get the conversation rolling!
My son has only needed nutritional balance to settle his digestive system. We now have no need for meds, etc., that created as many undesirable issues as they solved. There are always the reminders if we temporarily lose our discipline, where we are rewarded as soon as we get ‘back on task.’
EE is caused by both a type I hypersensitivity and also a type IV delayed type sensitivity. (cell mediated). I have found that using food sensitivity testing that identifies type IV reactions, like Mediator Release Testing, in conjunction with food allergy testing, helps me identify safe foods to use when placing my patients on an elimination diet and I see significant reduction in symptoms as a result. In addition, since vitamin D is so important for immune system modulation, I also request that my EE patients have their vitamin D levels tested.
Susan
If a PPI is not effective, I use 3mg budesonide tablets TID. Patients are instructed to open the capsule and pour the contents into applesauce. I am pleasantly surprised with the positive results-much better than aersolized topical steroids. So far referals to allergists have not been very efficacious. I use budesonide at the 9 mg dose for 3 months and then taper off or to the lowest possible necessary dose. I work in a hospital without a thoracic surgeon, so I refer these patients to a colleague where this service is availabe if dilatation is necessary.
In my limited experience, abstinence from gluten, because I have patients with Coeliac disease whose close family members have eosinophilic oesophagitis. My other suggestion is doxepin or cyproheptadine.
Nearly, I hear about this disease but I wonder how to diagnose it. Do we make biopsy for anapathology.
In my opinion, we should consult it like dyspepsia. Try to find the causes then treat. Why don’t we check parasite for patient?
first line: PPI and swallowed fluoticazone.
Yes everybody on a PPI may improve symptoms.
No food avoidance intially will refer the patient to allergist if severe symptoms for that.
Fluoticazone.
usually not but I dilate very carefully and if not on a PPI will start it right after dilation.
3 months of so for swallowed steroids and may keep them on a PPI for longer
I am sure this page if for doctors only but I really hope some doctors here will read this. I am an adult with EoE. I am in an online support group of over 100 adults that have also been diagnosed. We are all very frustrated over what we feel is poor treatment options. We understand that the doctors are still in a learning curve with this as well. Our main questions seems to be this: Why in a child do the GI docs take away all foods, insert a feeding tube (sometimes) and then slowly add back foods and keep scoping to see how those foods are affecting the body, but in an adult this never takes place!!! Most of us are ready to be done with food and allergy testing is so inaccurate for us!! Please start taking this into consideration for us!
Sondra,
I agree! I am 40 and was diagnosed 8 years ago. I’m in a major flare up right now, and often fantasize about not having to go through the pain and torment of this disease anymore. I can’t tolerate steroids well. There are NO specialists where I live. Some days, I wish I were dead. Sorry to say that, but I am very ill, and in so much pain…I need help! I need this to be taken just as seriously for me as if I were a child. I can’t tolerate ANY protein powders, eggs, dairy, oats, quinua, grains at all, gluten, corn, rice, chicken, fish, shell fish, pork (except bacon), most raw veggies, vitamins, and so much more. I’ve also developed a SEVERE case of PVC’s, and feel this is somehow related. If there was at least one blessing to come of this, and most people have it, adn that’s weight loss, but NO, I don’t have that…I have weight gain!! I don’t even know what to eat anymore!
My daughter has been sick for over a year. Having all the symptoms of eoe. Doctors thought it might be Mastocytosis. But now they don’t think so. She has lost 100 lbs. Has swelling, itching, off and on a rash. Can only eat a few foods. In constant abdominal pain. Evlevated tryptase level. On a feeding tube, that she does not tolerate very well. Problem is…doctors don’t seem to listen, or care. I think its because they really don’t know much about this disease. Does anyone have a compassionate doctor that listens? We need help soon. I am watching my daughter starve to death!!! She has a 7 year old daughter to raise. Can anyone help…Please!
I have two daughter plus my husband who all have EoE. I have studied this a lot online, as no one seems to know the answers.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3816102/
The above link will take you to a manuscript discussing EoE. I believe our next course of action, at our house, is going to be to eliminate the 8 foods spoken of in the study. With a 75% success rate, I feel it is worth a try. Just wanted to post this here for others who are as desperate for answers as we are. The 8 foods they suggest eliminating are: Milk, Soy, Tree Nuts, Peanuts, Eggs, Wheat, Fish and Shellfish. This is a drastic diet change, but after being off all these foods for a period, you slowly introduce them again, one at a time. There is a lot of success with the food elimination choice. Good luck to you all!
I have had EE since I was a child, diagnosed later as a teen. I am now 28 and have flare ups on and off. I see a specialist at a children’s hospital because many doctors are not comfortable treating this disease. I am still trying to find my food triggers, mainly because I have never been compliant with my food eliminations. Currently about to start a dairy elimination for 8 weeks followed by a biopsy. I agree it is very frustrating! My doctors are amazing and are doing constant research, such as recently I had a dexa scan because of new research that finds osteoporosis in several EE patients, and found out I have osteopenia. Find a specialist even if it’s at a children’s hospital!!!