I was diagnosed with Eosinophilic Esophagitis (EoE) months ago, from a biopsy taken during my endoscopy. I thought it was nothing serious. But it can be. And I have a complicated case.
For months I was only able to eat pureed food. And even that became hard to swallow. My esophagus was dilated during the endoscopy, and I was able to eat again. But that was about six months ago and symptoms are returning.
So I saw the allergist/immunologist yesterday and she basically said nothing adds up about my case.
She said my Eosinophilic Esophagitis must be severe, for me to have needed my esophagus dilated already. And for my symptoms to be returning so soon. She treats severe cases with prednisone, because the eosinophils that infiltrate the esophagus are extremely sensitive to prednisone. Therefore prednisone usually resolves all the symptoms. Quickly.
But I have been on higher doses of prednisone than she usually prescribes, for the entire time that I have had these symptoms. Therefore prednisone is NOT resolving the problem in my case. She hasn’t seen this before. She pretty much said it’s not possible.
Her interpretation of this is that the allergy is severe. Or I have multiple allergies. Usually Eosinophilic Esophagitis is food related. An allergy to a particular food, or many foods. Rarely, it’s caused by environmental allergens. Things like pollen, or other inhaled substances. And in those cases, it’s very hard to treat. And when I ran through how I have been feeling, she told me that, in severe cases, these allergies can indeed make a person feel that terrible.
She also went through my entire autoimmune history. Asking me lots of questions, which I know relate to mostly lupus. The Raynaud’s, rashes, eye inflammation, skin diseases. Chest pain, history of pneumonia, pleurisy, pericarditis, I can’t even remember what else. It was clear she was building a theory, but she wouldn’t be drawn on her thoughts yet. Instead she said she was going to request all my records from my rheumatologist, and go back through all my blood work and get a better picture of my history, and what treatments and labs have been done.
She said nothing about me added up to her. Eosinophilic Esophagitis is rare, and she said while it was possible I have all these co-existing diagnoses, she wants to go through everything and try to figure out WHY I have EoE. Because I shouldn’t have it.
I asked if there was any doubt about the diagnosis, and she said no. Biopsy is conclusive. So there is no doubt. But with all the prednisone I have been on for many years, it just shouldn’t be there.
She also questioned why my rheumatologist keeps me on all of these drugs when they are clearly ineffective. And said that perhaps I have an allergy to one or more of my medications. She said naprosyn is the most likely suspect, and told me to stop it. Forever.
Naprosyn is the only thing that helps with my lower back pain, so I’m not thrilled. But I agreed. She also said with the gastritis found during the endoscopy I shouldn’t be taking it anyway. So it’s gone for good.
She’s intrigued. Which is often a very good thing. She’s going to go through my case with a fine tooth comb, and see if she can find the missing piece.
Which is wonderful.
I’ve had this happen before. A doctor goes all ‘Dr House’ because I’m fascinating, and they love a good puzzle and they love a challenge. Over time, the answer isn’t forthcoming, and I get sicker and they get dejected. And they ultimately throw up their hands, and make no further appointments.
So I can’t get too invested. But I am grateful that she’s so interested, and hopeful that she will find something to explain why I am so much sicker than I should be. Why, even with all this prednisone, I am still exhausted and weak. Why I can’t keep food down. Why my muscles have no strength. Why I have a constant headache. Why I have a constant low grade fever. Why I can’t concentrate on anything. Why I am dizzy all the time. Why the moment I sit down, I struggle to keep my eyes open. Why I now need to lie down most of the day. Why I sleep so much.
I’ve been in denial about how bad things are. Talking through everything with her brought home how lousy my life is. Even in the context of a chronic patient. Even in the context of severe Rheumatoid Arthritis and Mixed Connective Tissue Disease.
No one knows, because no one spends much time with me. I live alone. I look fine for the 30 minutes I’m riding a spin bike at the gym. No one can see that the resistance is set to next to nothing. I go there to have some face to face human contact. Apart from that I don’t leave the house. I don’t see anyone. Unless they run into me at the grocery store. And they don’t know that I have to sleep for two hours to recover from grocery shopping. And that it’s the only thing I’ll do that day. And if people DO come and visit they see the mess my house is and go with the lazy assumption. Not the ‘too sick to get up’ assumption.
I have one friend in the healthy world. One kind, supportive person who cares.
But all of that is beside the point. I’m rambling again. Treatment.
The first step will be to do a very strict elimination diet for Eosinophilic Esophagitis. She warned me it will be tough. And needs to be done under the supervision of a dietician. No wheat, gluten, grains, dairy, meat, seafood, soy or nuts for starters. Much more than that, but she said she will leave that to the dietician. But be prepared. It will be restrictive. It will be hard to stick to. And it will be slow going. I won’t be able to eat very much at all.
I’m not eating much now. So bring it on. But it won’t be pleasant. And it won’t be easy. Once I’m starting to feel better – if I start to feel better – foods will be introduced carefully. One at a time. With repeat endoscopies in between. To see what state my esophagus is in.
And if I don’t improve, we’ll look at environmental triggers. But we start with food. Because we don’t want it to be environmental, because she reiterated that it’s very hard to treat.
So she arranged an emergency consult with a dietician who has a special interest in EoE. I see her tomorrow morning. I’m looking forward to it.
And today I’m eating Maltezers. And drinking wine. And I don’t know what else.
But I’m looking forward to the diet. This doctor gives me hope. Which is something that I had run out of.
There is no food that I wouldn’t give up to feel better than this. I’d give up all food and be tube fed if it meant that I could feel a little bit normal again. And yes, I know that being tube fed sux. I’m not being flippant. I DO feel that bad. I would do anything.
Right now my life is, for all effective purposes, over. I spend 90% of my time sleeping or resting. It’s not living.
I will do anything.
I do so hope that this helps you, that you are able to isolate a food or two that trigger your issues, and eliminate them and be done with this, and feel well. One theory I think is that people with autoimmune issues have ‘leaky gut’, which causes allergies to foods. So if the gut can be healed, those foods could perhaps be re-introduced later. I’m not sure that I believe in leaky gut, but I do know many people that are helped by changing their diets drastically.
Please do talk to your dietician about your eating disorder. Restricting at all can trigger an eating disorder, as you so well know, so you will need to be careful with this. Careful to be sure to get enough calories somehow, which seems difficult when on such a restricted diet. But if you were to lose too much weight, that can cause a lot of disordered thinking, too.
I am glad that you’re finding hope. Do hang in there. There is a solution out there for you somewhere, I know it. I hope this is it, and that it’s managable for you.
I hope you get an answer, but who will I send cupcake too? Sending whole germ rice cakes with seaweed topping won’t be as nice!! Xx
The really ‘funny’ thing is I’m actually gaining weight. And I know I’m getting 1200-1500 calories a day. Which seems impossible, but there it is. And GAINING weight is really messing with my head!
Please let us know how you go with all this.
This is just one more thing that you (well no-one)did not need.
I can certainly understand the weight gain despite low calorie intake messing with your head. I barely ate at all over winter (was a reaction to a diabetes med called byetta) and I still put on weight. How the hell does that happen?! The worst part was the reaction of the so called health professionals………disbelief………they don’t outright say it but their questioning disbelief is calling a person a liar. I hate that because they cant find the answer their first reaction is disbelief.
Anyway Im off track again.
I hope your doctor and dietician can find some answers for you.
Take care luv
And I do mean it ………..call, email, text anytime.
Thanks Sue. I’m sorry I didn’t reply much sooner. All these comments on teh blog I didn’t get notifications. I know you do understand – and its beyond rude when doctors all but call you a flat out liar when you tell them what you are eating. Some medications change your metabolism. I have no doubt, even if the doctors don’t believe it. It’s just about a year since I stoppped biologicals and weight is slowly starting to go down or me. Very, very slowly, but I can feel a little bit of looseness in my jeans. Thanks for kind thoughts xxx
Arthritic Chick, I feel for you, as I have probably had EoE for 20 years (give or take) but was only officially Dxed 7 years ago with a series of 4 endoscopies. In addition, I was born with 2 esophageal strictures, both 1/4″ in diameter (also Dxed through endoscopies). I am also no stranger to hypothyroid, hypoglycemia & adrenal fatigue.
Bottom line, I had a food impaction incident at age 10, have eaten very slowly my entire life, and tend to graze my way through the day. Yeah, sometimes the only way to eat enough food is through pureeing / liquids. My Vitamix high speed blender is my kitchen best friend.
In 2018 I was also Dxed with seronegative RA. Like you, I seem to be getting depressed from the MTX. I guess where it rains, it can pour 🙁
I sincerely hope your swallowing and weight gain issues have resolved in the 3 years since you wrote this post. Having all these Dx is not a fun club to be a member of, is it?
Hi Barbara, sorry for the slow response. No, its not fun at all. Things are no better for me, I hope you’ve had some improvement? If not, I’m sorry. I do understand. Its so hard to get people to understand how much of an impact these diseases have. And methotrexate works wonders, but not without a price. Take care xx