Coeliac for two weeks
I have been ill for the last month and a half. It all started when I was on my way back from Murcia. Halfway through, I started feeling bad. My neck, ie my lower throat, was slowly beginning to close. If it shuts, then you cannot swallow. It is pretty obvious. So I went to hospital once I got to BCN (which I managed largely thanks to my aunt who is a nurse). It took seven or eight doctors and four hospitals for them to give me a short term solution: methylprednisolone, a weird-sounding name but a very common medicine if allergy is suspected.
But of course, that was only when I had started retching because my throat was so shut I could not even swallow saliva.
I went to a specialist doctor a few days after this, and I was told an endoscopy would be needed. For those of you who don't know, it consists on introducing a couple of cables down your mouth and throat, in my case until the duodenum, which is the beginning of the thin bowel. I am told I retched a lot, but I have no idea because luckily the first thing they did was give me some anesthesia. They did not start till I was in sleep mode and finished long before I woke up thirty minutes later, so How could I remember?
Long story short, when I got the results of the biopsies they took, I learned three things:
First, I do not have cancer. Which is both a relief and as good as it gets.
Second, I have been diagnosed a severe eosinophilic oesophagitis (EO or EE in countries using American spelling). It is much easier to explain what it is than to correctly pronounce its name. In a nutshell, my body has an excess of eoshinophils because I suffer from allefgy. These eosinophils, little white cells coming from the immune system, decide to make of my oesophagus a new home. Which would be fine for me if this did not in turn mean that my oesophagus inflames, and so the hole through which food and drink go to the stomach becomes ever smaller. 'Can it be healed?' 'No can do, sir, sorry.' I need to learn to live with this. At the moment I am taking a treatment I was prescripted at A&E ten days ago when I had another attack, and it is sort of working for me, but there are no guarantees, and sometimes surgery is needed. Oh, and lots of care, of course. To eat, to drink, to go out, to do pretty much anything.
And third (yeah, this was a list!), I have a mild chronic duodenitis. I was told by the pathologist this was most probably because I suffered from coeliac disease as well. Coeliac disease consists in a gluten intolerance, and the only known effective way to tackle it is leading a gluten free diet. Waiting for the results of further tests, and because it could do me no harm, I started leading a gluten free diet some three weeks ago. It was somewhat of a disappointment when last week I found out that I am NOT a coeliac. Okay, maybe I wasn't disappointed. But I was presented with two major questions:
Firstly, what on earth is causing the chronic duodenitis?
And secondly, how the hell can I feel better when I eat and especially when I am digesting food, like a coeliac person would experience, if I am not intolerant to gluten?
These are still unanswered, in case you may wonder. I am seeing a specialist later this week to try and answer the first question. As for the second one, I talked to my doctor about it, and he was very clear about it: "if you feel better, why should not you continue?". So I will still lead a gluten free diet for a few weeks, presumably until November, when I will reintroduce gluten in my diet, and I'll see what happens. Depending on how my body reacts, these months will become a happy anecdote, or I will become an honorary coeliac. We'll see.
For the time being, I need to learn to live with EE, which I can assure you is not easy, and try to find long term solutions for both problems. If I can, losing* half my summer will have been worth it.
*I'd rather say 'losing experiences I could have lived', as a sort of opportunity cost, than think I've wasted half of my summer in bed.
PS: This is the first entry I've written in full in my iPod. Quite an experience, not being used to touchpad keyboards.
But of course, that was only when I had started retching because my throat was so shut I could not even swallow saliva.
I went to a specialist doctor a few days after this, and I was told an endoscopy would be needed. For those of you who don't know, it consists on introducing a couple of cables down your mouth and throat, in my case until the duodenum, which is the beginning of the thin bowel. I am told I retched a lot, but I have no idea because luckily the first thing they did was give me some anesthesia. They did not start till I was in sleep mode and finished long before I woke up thirty minutes later, so How could I remember?
Long story short, when I got the results of the biopsies they took, I learned three things:
First, I do not have cancer. Which is both a relief and as good as it gets.
Second, I have been diagnosed a severe eosinophilic oesophagitis (EO or EE in countries using American spelling). It is much easier to explain what it is than to correctly pronounce its name. In a nutshell, my body has an excess of eoshinophils because I suffer from allefgy. These eosinophils, little white cells coming from the immune system, decide to make of my oesophagus a new home. Which would be fine for me if this did not in turn mean that my oesophagus inflames, and so the hole through which food and drink go to the stomach becomes ever smaller. 'Can it be healed?' 'No can do, sir, sorry.' I need to learn to live with this. At the moment I am taking a treatment I was prescripted at A&E ten days ago when I had another attack, and it is sort of working for me, but there are no guarantees, and sometimes surgery is needed. Oh, and lots of care, of course. To eat, to drink, to go out, to do pretty much anything.
And third (yeah, this was a list!), I have a mild chronic duodenitis. I was told by the pathologist this was most probably because I suffered from coeliac disease as well. Coeliac disease consists in a gluten intolerance, and the only known effective way to tackle it is leading a gluten free diet. Waiting for the results of further tests, and because it could do me no harm, I started leading a gluten free diet some three weeks ago. It was somewhat of a disappointment when last week I found out that I am NOT a coeliac. Okay, maybe I wasn't disappointed. But I was presented with two major questions:
Firstly, what on earth is causing the chronic duodenitis?
And secondly, how the hell can I feel better when I eat and especially when I am digesting food, like a coeliac person would experience, if I am not intolerant to gluten?
These are still unanswered, in case you may wonder. I am seeing a specialist later this week to try and answer the first question. As for the second one, I talked to my doctor about it, and he was very clear about it: "if you feel better, why should not you continue?". So I will still lead a gluten free diet for a few weeks, presumably until November, when I will reintroduce gluten in my diet, and I'll see what happens. Depending on how my body reacts, these months will become a happy anecdote, or I will become an honorary coeliac. We'll see.
For the time being, I need to learn to live with EE, which I can assure you is not easy, and try to find long term solutions for both problems. If I can, losing* half my summer will have been worth it.
*I'd rather say 'losing experiences I could have lived', as a sort of opportunity cost, than think I've wasted half of my summer in bed.
PS: This is the first entry I've written in full in my iPod. Quite an experience, not being used to touchpad keyboards.
Tengas lo que tengas que te mejores. A mi me diagnosticaron colitis ulcerosa cuando tenia 18 años, exactamente la mitad de los que tengo ahora. Lo que te puedo asegurar que mejor funciona para mejorar cualquier trastorno digestivo son tres cosas: no leche, no gluten y tomar probiotics. La leche, quizas por la lactosa entre otras razones. El gluten es muy dificil de digerir, especialmente cuando hay un trastorno digestivo. Y los probioticos (en capsula o powder, no en yogur) de calidad, ayudan a repoblar la flora intestinal. A mi tambien me diagnosticaron duodenitis y mas cosas, y llevo años sin tomar ninguna medicina. Si pruebas a reducir el nivel de ansiedad y ademas haces esos cambios en la dieta, estoy seguro que te vas a encontrar mucho mejor. Pero para probar necesitas probarlo con mucha disciplina y al 100%. Hoy en dia hay tanta gente celiaca que es muy facil comer sin gluten. Otra cosa a tener en cuenta son los azucares e intentar evitar la comida procesada.
ReplyDeleteSiento meterme en esto, pero es un tema que me interesa y bueno, solo queria aportar mi experiencia si puede ayudarte en algo. Un saludo y que te mejores!
Intento apenas tomar leche. Me han hecho un lactotest, para tema de alergias, y ha dado negativo, pero aún así intento ser bastante parco con lácteos (exceptuando queso).
DeleteNo sé lo que son los probióticos, pero puedo intentar encontrarlos.
A mí el tema de las medicinas no me lo quita ni el tato. Lo del esófago, es algo autoimmune, y el esófago se me cierra cuando le da la gana. No es agradable. De hecho, ahora llevo tres días en cama con un ataque, y aunque sé que no me voy a morir por esto me impide hacer absolutamente nada. Tengo que ir cambiando de tratamiento porque nada parece hacer efecto. La enfermedad es tan nueva que es todo experimental, no se sabe qué la causa o cómo quitar a los eosinófilos del esófago.
Y estoy harto.
Luego el tema de la comida, ahora tengo que ir con cuidado para los gases y el reflujo, para las alergias, con el tema del gluten, y con el tema de las cosas que tengo controladas que me cuesta tragar y me provocan ataques.
Resultado: puedo comer hamburguesas de ternera y/o pollo previamente picado, huevos, algún zumo natural y algo de pollo braseado/jamón dulce (si no lleva gluten). Y queso.
Lo que decía, estoy bastante harto.