geek+nerd
DIS Veteran
- Joined
- May 11, 2010
- Messages
- 1,046
DH and I recently spent 11 days at WDW, from June 29-July9, 2013. This was my first trip needing accommodations for food. Eating, especially sweets, has been a big part of our trips so I was very nervous about this experience. I wanted to share my experience with others with the hope of making someone else's trip a little less worrisome.
I'll give you a little bit of background information on my dietary needs; feel free to skip right over this first post. It is a bit of a saga and may contain too much information for some.
Last August, we went out to eat with my parents and sister and her family. My DBIL drove all 8 of us in his Honda Pilot. I was sitting in the middle of the first backseat row in between DH and our niece. On the way home, I threw up my meal in the car. At the time, we chalked it up to motion sickness. However, I noticed after this, that I wasnt eating quite as much as I usually did.
I am a high school teacher. On my way to work two weeks into the school year, I threw up on myself while driving to work on the Interstate. There was no way to avoid it; I couldnt pull over. I was out sick for three days. I assumed it was a virus, no big deal. However, I continued to feel nauseated pretty much most of the time. There were several incidents where I would eat and immediately rush to the sink and regurgitate what I just swallowed.
In October, I threw up again in a car while my husband was driving. My appetite was low and I was not consuming my usual quantity of food. I made an appointment with my family doctor. She ordered a number of tests, including a pregnancy test, a barium swallow, and a gallbladder ultrasound-all of which came back negative for any problems. She referred me to a GI specialist; I was unable to get an appointment until mid-November.
In between visiting my family doctor and the GI specialist, I had numerous more bouts of vomiting and regurgitation and pretty much 24/7 nausea. I was miserable, and I had already blown through a whole bunch of sick days. When I finally met with the GI specialist, she did a thorough interview of me about my symptoms. Based on my symptoms alone, she felt confident with a diagnosis of Gastroparesis (GP). GP means stomach paralysis, or that food does not move through the digestive tract at the rate that it should, causing people to fill up quickly and often regurgitate their food. One of the main diagnostic tests for GP is nuclear, and the doctor did not want to put me through that when she was confident of the diagnosis based on symptoms. So, she put me on the GP diet and I had a follow-up with her in two weeks.
The GP diet is very low in fat, low in fiber (NO raw fruits and vegetables; all need to be very well cooked or pureed), and low in spices. I also had to eat small amounts every 2-4 hours, which required me getting a note from her so that I would be allowed to eat in classes. I went on the diet for two weeks and did not vomit at all. The nausea, while still present, was not as bad. Instructions from the GI were to stick with the diet and let her know of any problems I was having.
I continued on the diet with improved results, but I still wasnt feeling anywhere near normal for me. I had another appointment with my family doctor in December and discussed the GI appointments with her. While I agreed with the GI doctor that a nuclear test wasnt the best thing to do unless necessary, I also wanted to confirm the diagnosis. My thinking was that if it wasnt GP, we needed to be exploring other possibilities.
So, my family doctor went ahead and ordered the gastric emptying test for me. This test involves eating radioactive eggs and drinking radioactive water and having your stomach scanned continuously for one hour and then scanned periodically for the next three hours to track how quickly the food moves through your digestive system. The results came back normal. However, people with GP can have normal gastric emptying results one time and then severely delayed results another time. The GI doctor wasnt convinced that it wasnt GP based on the results of the test, so my treatment remained the same.
I was pretty much living on ground turkey and mashed potatoes. I had very low energy, the near-constant nausea returned, I was still vomiting multiple times a month, and I was just absolutely miserable.
Fast forward to mid-April: On a Sunday evening, I threw up in the shower. I did not go to work the next day. Usually with a bout of vomiting and severe, crippling nausea, I could be out of commission for anywhere from 1-3 days. This time it was different. I was unable to eat anything and drink very little for 8 consecutive days. I ended up in the ER for dehydration, where I finally got a prescription for the nausea, Zofran. I had another appointment with my GI, where she discussed wanting to change my diet. If that change didnt work, she wanted to try an all-liquid diet, and if that didnt work, it would be on to a feeding tube. At this point, she told me going back to work was off the table for now, and I went on FMLA.
Needless to say, I was in an absolute panic at the mention of a feeding tube and was willing to try just about anything to avoid that. My new diet was wheat-, soy- and dairy-free along with low FODMAP. FODMAPs are fermentable carbohydrates that are found naturally in a lot of foods and in food additives.
When I was cleared to start to try to eat again, I had to start with very small amounts of chicken poached in low FODMAP broth. Once I was able to eat a little bit and get some strength back, I was able to return to work. I ended up missing 11 work days unpaid. However, within a week of starting the new diet, I was feeling significantly better-no vomiting, and I only had one bout of nausea that lasted a few hours and was gone.
Next, I was referred to an allergist. While my blood tests came back normal, the allergists recommendation was to continue to follow the diet. Her thinking was, We treat symptoms, not test results. Since I was feeling better on the diet, clearly I have some level of intolerance/sensitivity to these foods.
Through some experimentation, mostly accidental, DH and I have found that fructans seem to be the FODMAP that causes me the most problems. That means I need to avoid high fructose corn syrup (all organic foods for us now!), a whole bunch of different fruits and vegetables and juice concentrates, and onion and garlic and both in powder form. To be honest, the onion and garlic have been more challenging to avoid than wheat, soy and dairy. I have more or less been eating Paleo and low FODMAP combined.
In preparation for our trip to WDW, I contacted special diets and filled out the form as having allergies to wheat, soy and milk. In the other section, I listed my main FODMAP concerns. If anyone is familiar with FODMAPs, it is virtually impossible to list every single one that may cause you problems.
I had a successful trip, food wise. I did get sick twice; once, was totally my fault because I wasnt thinking. The other time, I have no clue what made me sick. In general, however, my food experiences at WDW were very positive.
I will include reviews for every table service restaurant we ate in as well as pictures of my meals in future posts.
I'll give you a little bit of background information on my dietary needs; feel free to skip right over this first post. It is a bit of a saga and may contain too much information for some.
Last August, we went out to eat with my parents and sister and her family. My DBIL drove all 8 of us in his Honda Pilot. I was sitting in the middle of the first backseat row in between DH and our niece. On the way home, I threw up my meal in the car. At the time, we chalked it up to motion sickness. However, I noticed after this, that I wasnt eating quite as much as I usually did.
I am a high school teacher. On my way to work two weeks into the school year, I threw up on myself while driving to work on the Interstate. There was no way to avoid it; I couldnt pull over. I was out sick for three days. I assumed it was a virus, no big deal. However, I continued to feel nauseated pretty much most of the time. There were several incidents where I would eat and immediately rush to the sink and regurgitate what I just swallowed.
In October, I threw up again in a car while my husband was driving. My appetite was low and I was not consuming my usual quantity of food. I made an appointment with my family doctor. She ordered a number of tests, including a pregnancy test, a barium swallow, and a gallbladder ultrasound-all of which came back negative for any problems. She referred me to a GI specialist; I was unable to get an appointment until mid-November.
In between visiting my family doctor and the GI specialist, I had numerous more bouts of vomiting and regurgitation and pretty much 24/7 nausea. I was miserable, and I had already blown through a whole bunch of sick days. When I finally met with the GI specialist, she did a thorough interview of me about my symptoms. Based on my symptoms alone, she felt confident with a diagnosis of Gastroparesis (GP). GP means stomach paralysis, or that food does not move through the digestive tract at the rate that it should, causing people to fill up quickly and often regurgitate their food. One of the main diagnostic tests for GP is nuclear, and the doctor did not want to put me through that when she was confident of the diagnosis based on symptoms. So, she put me on the GP diet and I had a follow-up with her in two weeks.
The GP diet is very low in fat, low in fiber (NO raw fruits and vegetables; all need to be very well cooked or pureed), and low in spices. I also had to eat small amounts every 2-4 hours, which required me getting a note from her so that I would be allowed to eat in classes. I went on the diet for two weeks and did not vomit at all. The nausea, while still present, was not as bad. Instructions from the GI were to stick with the diet and let her know of any problems I was having.
I continued on the diet with improved results, but I still wasnt feeling anywhere near normal for me. I had another appointment with my family doctor in December and discussed the GI appointments with her. While I agreed with the GI doctor that a nuclear test wasnt the best thing to do unless necessary, I also wanted to confirm the diagnosis. My thinking was that if it wasnt GP, we needed to be exploring other possibilities.
So, my family doctor went ahead and ordered the gastric emptying test for me. This test involves eating radioactive eggs and drinking radioactive water and having your stomach scanned continuously for one hour and then scanned periodically for the next three hours to track how quickly the food moves through your digestive system. The results came back normal. However, people with GP can have normal gastric emptying results one time and then severely delayed results another time. The GI doctor wasnt convinced that it wasnt GP based on the results of the test, so my treatment remained the same.
I was pretty much living on ground turkey and mashed potatoes. I had very low energy, the near-constant nausea returned, I was still vomiting multiple times a month, and I was just absolutely miserable.
Fast forward to mid-April: On a Sunday evening, I threw up in the shower. I did not go to work the next day. Usually with a bout of vomiting and severe, crippling nausea, I could be out of commission for anywhere from 1-3 days. This time it was different. I was unable to eat anything and drink very little for 8 consecutive days. I ended up in the ER for dehydration, where I finally got a prescription for the nausea, Zofran. I had another appointment with my GI, where she discussed wanting to change my diet. If that change didnt work, she wanted to try an all-liquid diet, and if that didnt work, it would be on to a feeding tube. At this point, she told me going back to work was off the table for now, and I went on FMLA.
Needless to say, I was in an absolute panic at the mention of a feeding tube and was willing to try just about anything to avoid that. My new diet was wheat-, soy- and dairy-free along with low FODMAP. FODMAPs are fermentable carbohydrates that are found naturally in a lot of foods and in food additives.
When I was cleared to start to try to eat again, I had to start with very small amounts of chicken poached in low FODMAP broth. Once I was able to eat a little bit and get some strength back, I was able to return to work. I ended up missing 11 work days unpaid. However, within a week of starting the new diet, I was feeling significantly better-no vomiting, and I only had one bout of nausea that lasted a few hours and was gone.
Next, I was referred to an allergist. While my blood tests came back normal, the allergists recommendation was to continue to follow the diet. Her thinking was, We treat symptoms, not test results. Since I was feeling better on the diet, clearly I have some level of intolerance/sensitivity to these foods.
Through some experimentation, mostly accidental, DH and I have found that fructans seem to be the FODMAP that causes me the most problems. That means I need to avoid high fructose corn syrup (all organic foods for us now!), a whole bunch of different fruits and vegetables and juice concentrates, and onion and garlic and both in powder form. To be honest, the onion and garlic have been more challenging to avoid than wheat, soy and dairy. I have more or less been eating Paleo and low FODMAP combined.
In preparation for our trip to WDW, I contacted special diets and filled out the form as having allergies to wheat, soy and milk. In the other section, I listed my main FODMAP concerns. If anyone is familiar with FODMAPs, it is virtually impossible to list every single one that may cause you problems.
I had a successful trip, food wise. I did get sick twice; once, was totally my fault because I wasnt thinking. The other time, I have no clue what made me sick. In general, however, my food experiences at WDW were very positive.
I will include reviews for every table service restaurant we ate in as well as pictures of my meals in future posts.