Aa
Thoracic vs abdominal
Is there anyway a thoracic aneurysm could be missed during an ultrasound for AAA?
I don't think it's a food intolerance, but I haven't actually ruled it out so I guess it can be thrown on the pile.
It's just really weird. So it's possible that an enlarged spleen could press into my heart and that's why I'm able to see and feel it beating like crazy now?
It's just really weird. So it's possible that an enlarged spleen could press into my heart and that's why I'm able to see and feel it beating like crazy now?
I'll respond first to your question about how my gluten intolerance was diagnosed. It was a roundabout path that led to that. I have restless leg syndrome and periodic leg movements in sleep. From a website, I became aware that these conditions are caused by systemic inflammation. (It was nothing that the sleep med doctor told me -- he just wanted me to take an anti-Parkinson's drug, which I refused to do, because those drugs tend to make the problem worse in the long run.) So I started trying to figure out a way to reduce systemic inflammation.
One of the main reasons that many people have high levels of systemic inflammation is that most of us eat a pretty crappy diet. I would have said that I was eating well, but according to the book, The Inflammation-Free Diet Plan, by Monica Reinagel, I was eating a lot of things that are inflammatory. Any kind of grain-based food is inflammatory.
So I started eating less bread, first of all. Instead of a sandwich with two pieces of bread, I would eat a fold-over sandwich with one piece of bread. After a week or two of that, I thought maybe I felt a little bit better, so I cut out bread entirely. After a week or so of that, I was pretty sure I was on the right track, so I cut out pasta also, and I felt even better. Eventually, I was reading labels to try to avoid hidden gluten, and now I don't consume gluten at all, if I can help it.
After being gluten-free for about a month, I did gene testing for celiac disease/gluten intolerance and stool testing for anti-gluten antibodies. I used enterolab.com. You don't need a doctor's referral to order tests from enterolab.com. The results were that I have a gene for celiac disease, and I have IgA antibodies in my stool (produced by the gut) to gluten, casein, soy, and yeast. That means that I should not eat those foods, because my immune system reacts to them, and I get systemic inflammation that produces various symptoms in several different organ systems.
I don't have actual celiac disease, because I don't have the gut damage that is sine qua non for celiac disease. I have nonceliac gluten intolerance, and I have multiple other food intolerances in addition to gluten intolerance. I'm still in the early stages of working through all of that, but all kinds of symptoms in addition to sleep symptoms are gradually getting better, and I'm not ever going back to the way I was eating before.
If you have gluten intolerance, it only takes a tiny amount of gluten, every once in a while, to keep the reaction going. It's not like you have to eat gluten every day or in large amounts. If you have gluten intolerance, you can easily have other food intolerances, since the original gluten intolerance gets your immune system and your digestive system all messed up.
One of the main reasons that many people have high levels of systemic inflammation is that most of us eat a pretty crappy diet. I would have said that I was eating well, but according to the book, The Inflammation-Free Diet Plan, by Monica Reinagel, I was eating a lot of things that are inflammatory. Any kind of grain-based food is inflammatory.
So I started eating less bread, first of all. Instead of a sandwich with two pieces of bread, I would eat a fold-over sandwich with one piece of bread. After a week or two of that, I thought maybe I felt a little bit better, so I cut out bread entirely. After a week or so of that, I was pretty sure I was on the right track, so I cut out pasta also, and I felt even better. Eventually, I was reading labels to try to avoid hidden gluten, and now I don't consume gluten at all, if I can help it.
After being gluten-free for about a month, I did gene testing for celiac disease/gluten intolerance and stool testing for anti-gluten antibodies. I used enterolab.com. You don't need a doctor's referral to order tests from enterolab.com. The results were that I have a gene for celiac disease, and I have IgA antibodies in my stool (produced by the gut) to gluten, casein, soy, and yeast. That means that I should not eat those foods, because my immune system reacts to them, and I get systemic inflammation that produces various symptoms in several different organ systems.
I don't have actual celiac disease, because I don't have the gut damage that is sine qua non for celiac disease. I have nonceliac gluten intolerance, and I have multiple other food intolerances in addition to gluten intolerance. I'm still in the early stages of working through all of that, but all kinds of symptoms in addition to sleep symptoms are gradually getting better, and I'm not ever going back to the way I was eating before.
If you have gluten intolerance, it only takes a tiny amount of gluten, every once in a while, to keep the reaction going. It's not like you have to eat gluten every day or in large amounts. If you have gluten intolerance, you can easily have other food intolerances, since the original gluten intolerance gets your immune system and your digestive system all messed up.
one more consideration:
My apartment is in a very old building (lead paint walls underneath the padding/paint they have put on top of it), there is a ton of dust in this place no matter what I do, and I'm not sure if there's mold in here or not. I have also mentioned this to Doctors but none have seemed to think it's related. Is there anyway to test your blood for mycotoxins? (I've done environmental allergy skin tests, very very mild reaction to mold and dust mites)
My apartment is in a very old building (lead paint walls underneath the padding/paint they have put on top of it), there is a ton of dust in this place no matter what I do, and I'm not sure if there's mold in here or not. I have also mentioned this to Doctors but none have seemed to think it's related. Is there anyway to test your blood for mycotoxins? (I've done environmental allergy skin tests, very very mild reaction to mold and dust mites)
I have a copy of all reports that I bring everywhere with me. I have highlighted my symptoms and few findings and have asked one pressing question is "why is my heart visible/palpable all of a sudden and how do I fix that?" followed very closely by "why can't I breath?"
so far no luck
the very few findings so far have a connection with allergies/parasites. Elevated Eosinophils and IgE in blood, and a biopsy that shows Eosinophilic Esophagitis. That's all they have been able to find so far
I have an abdominal ultrasound scheduled for later this week, I'll be sure to check that link you sent about enlarged spleen.
He suspected a food allergy because a ton of cases of Eosinophilic Esophagitis are usually linked to a food allergy. However my diet is pretty steady, mainly eggs chicken and some kind of green vegetable with the occassional pizza and bag of cookies thrown in there, only drink water, beer, or whiskey, and those last two are only about once a week. Back in July before the heart thing started I actually only ate chicken vegetables and eggs for about 4 weeks. Nothing changed, in fact that was when the heart thing started, so in August I went back to drinking and eating whatever I wanted. How was your gluten intolerance diagnosed?
All of this started basically overnight and I've really tried to focus on what could have caused all of this to start but there's only a couple of things I could come up with (and yes I have mentioned all of these to my Doctors.)
*** Hiking barefoot on Channel Islands, cut my foot open and was walking around out there. There is a pulmonary virus out there called Hantavirus that all of my Doctors still have not checked for. Given that it's fatal I can see why they don't think it's that but still, I'm surprised none of them even want to rule it out considering everything that's happened.
*** I inhaled sulfur dioxide in Chemistry class about a month before all of this started. I don't have a sense of smell and I tried to smell a test tube that had that in it. Not sure if one inhale could cause long term damage but I have heard of RADS so it's worth considering.
*** I ate mushrooms while on antibiotics. I thought that maybe being on antibiotics (which throws off your good bacteria) could have led to some kind of infection when I ingested them?
That is everything I can think of before all of this started that could have led to some kind of infection. All doctors have told me it's unlikely any of those incidents contributed to what's going on. Thanks for all your replies so far skydnsr, I really appreciate it.
so far no luck
the very few findings so far have a connection with allergies/parasites. Elevated Eosinophils and IgE in blood, and a biopsy that shows Eosinophilic Esophagitis. That's all they have been able to find so far
I have an abdominal ultrasound scheduled for later this week, I'll be sure to check that link you sent about enlarged spleen.
He suspected a food allergy because a ton of cases of Eosinophilic Esophagitis are usually linked to a food allergy. However my diet is pretty steady, mainly eggs chicken and some kind of green vegetable with the occassional pizza and bag of cookies thrown in there, only drink water, beer, or whiskey, and those last two are only about once a week. Back in July before the heart thing started I actually only ate chicken vegetables and eggs for about 4 weeks. Nothing changed, in fact that was when the heart thing started, so in August I went back to drinking and eating whatever I wanted. How was your gluten intolerance diagnosed?
All of this started basically overnight and I've really tried to focus on what could have caused all of this to start but there's only a couple of things I could come up with (and yes I have mentioned all of these to my Doctors.)
*** Hiking barefoot on Channel Islands, cut my foot open and was walking around out there. There is a pulmonary virus out there called Hantavirus that all of my Doctors still have not checked for. Given that it's fatal I can see why they don't think it's that but still, I'm surprised none of them even want to rule it out considering everything that's happened.
*** I inhaled sulfur dioxide in Chemistry class about a month before all of this started. I don't have a sense of smell and I tried to smell a test tube that had that in it. Not sure if one inhale could cause long term damage but I have heard of RADS so it's worth considering.
*** I ate mushrooms while on antibiotics. I thought that maybe being on antibiotics (which throws off your good bacteria) could have led to some kind of infection when I ingested them?
That is everything I can think of before all of this started that could have led to some kind of infection. All doctors have told me it's unlikely any of those incidents contributed to what's going on. Thanks for all your replies so far skydnsr, I really appreciate it.
Also, the doctor that was sure you were going to have a food allergy? He may have been on to something. You can have food intolerances that don't show up on the skin tests that an allergist does. I know, because I have nonceliac gluten intolerance. A food intolerance like that, and gluten intolerance is probably the most common one, can cause signs and symptoms that will mimic any disease you can imagine.
An enlarged spleen can be palpated on a physical exam, and it will show up on an abdominal ultrasound, an abdominal CT, or an abdominal MRI. An enlarged spleen can be associated with many diseases that have symptoms involving multiple organ systems. Sometimes the liver is enlarged, as well, in conditions that result in an enlarged spleen. If the spleen and/or liver are enlarged enough, they can put pressure on the diaphragm from below, and you can be restricted from inhaling fully.
http://www.webmd.com/digestive-disorders/enlarged-spleen-causes-symptoms-and-treatments
You might as well get copies of all of your exam notes and all of your test reports, if you have not obtained them already. You need to be able to make a list of all of the positive findings from your exams and tests, along with a list of all of your symptoms. Then you take those two lists, written on the same page, to your doctor, and you ask "what could account for these signs and symptoms?" You structure the question for the doctor. You make it easy for the doctor to scale down the problem in his or her mind. You get it down to one question, with all the data on one page. Then you write down the possibilities that the doctor throws out, and you ask what tests would be required to rule out each disorder. A lot of those tests, you will already have had, so a lot of things are already ruled out, but you just don't know it.
http://www.webmd.com/digestive-disorders/enlarged-spleen-causes-symptoms-and-treatments
You might as well get copies of all of your exam notes and all of your test reports, if you have not obtained them already. You need to be able to make a list of all of the positive findings from your exams and tests, along with a list of all of your symptoms. Then you take those two lists, written on the same page, to your doctor, and you ask "what could account for these signs and symptoms?" You structure the question for the doctor. You make it easy for the doctor to scale down the problem in his or her mind. You get it down to one question, with all the data on one page. Then you write down the possibilities that the doctor throws out, and you ask what tests would be required to rule out each disorder. A lot of those tests, you will already have had, so a lot of things are already ruled out, but you just don't know it.
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