So a few weeks ago I told you guys that "my food tube up and died on me." I decided now is as good a time as any to update on how this has progressed.
For the past few months, my GERD symptoms have been out of control. I was reguring any food I ate within minutes of swallowing and most of the time, couldn’t even swallow. I was experiencing dysphagia with solids, liquids, and even small pills. I was frustrated that this could be "disease progression." I'll be speaking in depth with my doctors (Allergist and GI) shortly, but for now I have a quick update.
I got allergy tested again recently (not because of these symptoms, just bevcause it needed to be done). I get it done every couple of years because I develop allergies ALL THE TIME. Tests came back as the only foods I didn't have an IgE blood response to were eggs, pork, beef, and chocolate. Because I am on TPN, I can safely cut out almost all foods. (Not like I was eating normally anyways) So for about a week and a half, I ate only chocolate, hard candy, and ground beef. (Again I reiterate this is SAFE for me because I get my nutrition intravenously) I made sure to avoid all foods I reacted to on my tests as well as all foods I'd ever had a negative reaction to in the past. And I felt good.
During this period of time, I had my 10th EGD along with biopsies that came back as normal as can be for someone with my disease. (think inflammation and hernias but no obvious reasons for my severe dysphagia)
The elimination diet was going well. I had major reduction in my acid reflux, my chronic (5 YEAR CONSTANT) eczema patches cleared in 3 days, and my dysphagia disappeared. So, of course, I reintroduced what I had been deeming "safe" foods for the past few years. Rice was first on my list. Instantly, I began reguring and vomitting at the dinner table. And the scariest part, the food got STUCK. I was coughing and gasping for air and gulping water. And no, this was not my “typical” anaphylaxis as it moved slowly and I didn't have major difficulties breathing. I swallowed, took a few puffs of inhaler and said bye to rice forever. Interestingly enough, the swelling in my esophagus that caused this dysphagia, only stayed for a few hours. I tried to take my pills at home and they got stuck as well because my esophagus was still swollen from the “dinner.”
The good news here is that it doesn't seem to be disease progression. I’ll know more after my appointment, but I am hoping this means it is NOT AAG related and just an unfortunate result of being me. It seems to be mostly related to the foods I eat.
I was eating rice and wheat crackers EVERY DAY (as well as other foods I had thought were safe for my GP and other health conditions). That is why I believe my dysphagia was progressing and occurring 98% of the time.
I guess I decided to retest this theory (as I often do with my health) whilst recovering from major surgery. I figured "hell, a few crackers wont hurt" HA.
And, again tonight, "hey maybe I can eat part of this granola bar?" Unfortunately that one actually did result in anaphylaxis. Luckily Remi kisses calmed me down after administration of epinephrine. (fyi: anaphylaxis hurts when you have 16 staples)
What I’ve learned here is that not all allergies look the same.
If you know me, you know I’ve had severe allergies since I was a child that continuously expand and become worse. I never imagined that I would be allowed FOUR safe foods. (I’m experimenting with others that were lower reactions on the IgE tests and luckily I’ve found a few that I tolerate even though they are considered allergies)
So that’s what I know for now. Hopefully that explains it and keeps my food tube working a little longer. I can’t wait to see my confused GI again. I always keep his nose in the books.
Stay tuned for post surgery update coming soon.
For the past few months, my GERD symptoms have been out of control. I was reguring any food I ate within minutes of swallowing and most of the time, couldn’t even swallow. I was experiencing dysphagia with solids, liquids, and even small pills. I was frustrated that this could be "disease progression." I'll be speaking in depth with my doctors (Allergist and GI) shortly, but for now I have a quick update.
I got allergy tested again recently (not because of these symptoms, just bevcause it needed to be done). I get it done every couple of years because I develop allergies ALL THE TIME. Tests came back as the only foods I didn't have an IgE blood response to were eggs, pork, beef, and chocolate. Because I am on TPN, I can safely cut out almost all foods. (Not like I was eating normally anyways) So for about a week and a half, I ate only chocolate, hard candy, and ground beef. (Again I reiterate this is SAFE for me because I get my nutrition intravenously) I made sure to avoid all foods I reacted to on my tests as well as all foods I'd ever had a negative reaction to in the past. And I felt good.
During this period of time, I had my 10th EGD along with biopsies that came back as normal as can be for someone with my disease. (think inflammation and hernias but no obvious reasons for my severe dysphagia)
The elimination diet was going well. I had major reduction in my acid reflux, my chronic (5 YEAR CONSTANT) eczema patches cleared in 3 days, and my dysphagia disappeared. So, of course, I reintroduced what I had been deeming "safe" foods for the past few years. Rice was first on my list. Instantly, I began reguring and vomitting at the dinner table. And the scariest part, the food got STUCK. I was coughing and gasping for air and gulping water. And no, this was not my “typical” anaphylaxis as it moved slowly and I didn't have major difficulties breathing. I swallowed, took a few puffs of inhaler and said bye to rice forever. Interestingly enough, the swelling in my esophagus that caused this dysphagia, only stayed for a few hours. I tried to take my pills at home and they got stuck as well because my esophagus was still swollen from the “dinner.”
The good news here is that it doesn't seem to be disease progression. I’ll know more after my appointment, but I am hoping this means it is NOT AAG related and just an unfortunate result of being me. It seems to be mostly related to the foods I eat.
I was eating rice and wheat crackers EVERY DAY (as well as other foods I had thought were safe for my GP and other health conditions). That is why I believe my dysphagia was progressing and occurring 98% of the time.
I guess I decided to retest this theory (as I often do with my health) whilst recovering from major surgery. I figured "hell, a few crackers wont hurt" HA.
And, again tonight, "hey maybe I can eat part of this granola bar?" Unfortunately that one actually did result in anaphylaxis. Luckily Remi kisses calmed me down after administration of epinephrine. (fyi: anaphylaxis hurts when you have 16 staples)
What I’ve learned here is that not all allergies look the same.
If you know me, you know I’ve had severe allergies since I was a child that continuously expand and become worse. I never imagined that I would be allowed FOUR safe foods. (I’m experimenting with others that were lower reactions on the IgE tests and luckily I’ve found a few that I tolerate even though they are considered allergies)
So that’s what I know for now. Hopefully that explains it and keeps my food tube working a little longer. I can’t wait to see my confused GI again. I always keep his nose in the books.
Stay tuned for post surgery update coming soon.