Hooray! My IgA came back normal. SO...I took that next step and asked the doctor to order the Enterolab panels so that even though my crappy insurance won't pay for it, my flex spending will. I called the Dr's office on Friday so that means I won't hear anything until Monday or Tuesday. It is just ridiculous how slow this all is. But if I don't do everything in proper order, I might not get it paid for when I could have.
On another note, I have decided to cancel a trip that I was going to have to make to Phoenix for an organization that I have been involved with for many years. I was going because I was needed to represent my part of the group, being the person available with the most longevity with this group. I was also supposed to be there to mediate because a person who is not so diplomatic is going to try to represent us. She is a very kind person, but she is opinionated. She told me that she wanted to help me and that she would get some food that I could eat and bring it in one of her checked bags.
She demanded a list of things that I could eat. I impressed upon her that processed food was not something I could do. I told her I could eat rice but was pretty limited on how much I could eat and that for instance, right now, I cannot eat rice cakes. So, she called me from the health food store and told me that she had found organic rice cakes. I told her that I could not eat rice cakes. She said, "Well, why not!?" I told her that they were too processed, repeating exactly what I had said before. She said, "Well who said that you couldn't eat them?" I told her that my doctor had said so (more to shut her up than anything else) and then she told me that she thought my doctor was too restrictive.
I decided that given my fatigue, I really don't need to stress myself further by flying across country, dealing with a bunch of contentious people and having every thing I put in my mouth questioned by her! Fortunately, I bought air travel insurance and can recoup everything I had in my ticket. Now I just have to break the news to this "friend". Ugh!
Food Allergist: A Waste of Time and $
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Jane,
Your "friend" reminds me of a cousin of mine who once, when I called her and tried to explain why I could not attend a weekend long catered (she chose the menu) family event at a hotel, tried to tell me how there absolutely were foods I could eat. She then listed a bunch of things I could not eat, calling them "healthy" I believe. I try to stay clear of opinionated people. It just takes too much energy dealing with them. You made a good decision.
Jean
Your "friend" reminds me of a cousin of mine who once, when I called her and tried to explain why I could not attend a weekend long catered (she chose the menu) family event at a hotel, tried to tell me how there absolutely were foods I could eat. She then listed a bunch of things I could not eat, calling them "healthy" I believe. I try to stay clear of opinionated people. It just takes too much energy dealing with them. You made a good decision.
Jean
Dear Jane,
It's so hard when people are trying to be helpful, but they don't get it, and they don't know that they don't get it.
If it were me, I wouldn't even bring up food as a reason I'm not coming--I'd just say that right now my health doesn't permit me to travel. And if she pressed, I'd say I have chronic D, and it's too hard to travel with that condition.
It was really helpful to me to have the Enterolab results to base my diet changes on. My insurance didn't pay for it, but I consider it money well spent. And it drives me nuts that the insurance would have paid full price to the pharmacy for Entocort, but they wouldn't pay less than the cost of one month's worth of medicine for lab tests that ultimately saved them from having to pay for medicine at all. Of course, this way they totally won, because they didn't have to pay for the tests or the medicine!!
Best wishes for finding out your intolerances and getting your life back.
Love,
Martha
It's so hard when people are trying to be helpful, but they don't get it, and they don't know that they don't get it.
If it were me, I wouldn't even bring up food as a reason I'm not coming--I'd just say that right now my health doesn't permit me to travel. And if she pressed, I'd say I have chronic D, and it's too hard to travel with that condition.
It was really helpful to me to have the Enterolab results to base my diet changes on. My insurance didn't pay for it, but I consider it money well spent. And it drives me nuts that the insurance would have paid full price to the pharmacy for Entocort, but they wouldn't pay less than the cost of one month's worth of medicine for lab tests that ultimately saved them from having to pay for medicine at all. Of course, this way they totally won, because they didn't have to pay for the tests or the medicine!!
Best wishes for finding out your intolerances and getting your life back.
Love,
Martha
Martha
Jane, sometimes you just have to do what's right for you. I bet you are feeling some relief that you don't have to go. Martha had a good point about just telling people you aren't feeling well enough to travel ( or attend something).
Iam however curious about the rice cakes. Have you reacted to them, or are you just being careful? I'm just asking because I ate them a lot when I was in my "healing phase".
Leah
Iam however curious about the rice cakes. Have you reacted to them, or are you just being careful? I'm just asking because I ate them a lot when I was in my "healing phase".
Leah
Yes, Leah. I had spasms after eating rice cakes and my acupuncturist said that she thought that rice cakes were responsible because they are too processed. I did enjoy the crunch so much, but if I need to say away from them for awhile, it is the least of my worries. I'm not even sure about rice in general. It is hard to tell now that I don't have D. I am still so constipated. More so today than any other day. I just feel bloated and have the pains up under my ribs and low in my abdomen.
I do have plenty of relief over not having to negotiate airports and planes and worrying about being able to get home without getting stuck some place because of a storm. The fact that it was not going to be exactly a relaxing time was also getting to me.
I do feel somewhat guilty because the host for this organization was making sure that I had a private room, that I had a refrigerator in my room and that she could make me as comfortable as possible. But...she and my judgmental colleague have not experienced this disease and unless you have lived with it or lived with someone who has it, you just cannot know that it is no walk in the park especially when you have not come into remission yet.
Tonight, my joints ache and I cannot get warm. I think I am going to take a long warm shower, get in my jammies and go to bed.
I do have plenty of relief over not having to negotiate airports and planes and worrying about being able to get home without getting stuck some place because of a storm. The fact that it was not going to be exactly a relaxing time was also getting to me.
I do feel somewhat guilty because the host for this organization was making sure that I had a private room, that I had a refrigerator in my room and that she could make me as comfortable as possible. But...she and my judgmental colleague have not experienced this disease and unless you have lived with it or lived with someone who has it, you just cannot know that it is no walk in the park especially when you have not come into remission yet.
Tonight, my joints ache and I cannot get warm. I think I am going to take a long warm shower, get in my jammies and go to bed.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
I agree that you've made the right decision. We don't need people questioning what we eat.
Travel is possible, but it requires planning and preparation. I'm flying to my daughter's tomorrow and have spent the last week getting my food ready for the trip. I am bringing everything I'll be eating there except for pork chops, which I'll be able to buy. I don't leave anything up to chance anymore. I once travelled all over trying to find plain corn tortillas. I couldn't find any, so now I bring my own. I used to make my pancakes with the mix I prepared and brought. I don't cook them there anymore because her pans are contaminated with gluten. I pack my own precooked pancakes and waffles.
Planning and preparation for me is relatively easy because I eat the same meals every three days and don't eat anything spontaneously. I print my menu calendar for the time I'll be gone. Then I make and bring the food I'll be eating. I reheat each meal in the microwave. I think it's essential to have a microwave and refrigerator in the hotel room when we travel. Most hotels provide them, or will bring one to your room if requested.
Gloria
Travel is possible, but it requires planning and preparation. I'm flying to my daughter's tomorrow and have spent the last week getting my food ready for the trip. I am bringing everything I'll be eating there except for pork chops, which I'll be able to buy. I don't leave anything up to chance anymore. I once travelled all over trying to find plain corn tortillas. I couldn't find any, so now I bring my own. I used to make my pancakes with the mix I prepared and brought. I don't cook them there anymore because her pans are contaminated with gluten. I pack my own precooked pancakes and waffles.
Planning and preparation for me is relatively easy because I eat the same meals every three days and don't eat anything spontaneously. I print my menu calendar for the time I'll be gone. Then I make and bring the food I'll be eating. I reheat each meal in the microwave. I think it's essential to have a microwave and refrigerator in the hotel room when we travel. Most hotels provide them, or will bring one to your room if requested.
Gloria
You never know what you can do until you have to do it.
Jane,
How are you feeling today? Your post last night sounded as though you might be coming down with something.
Tex
How are you feeling today? Your post last night sounded as though you might be coming down with something.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I did not feel great yesterday. I find that when I've ingested something that isn't right (& at this point, I'm not sure, but think it might have been some potato I tried) that the first warning sign is chills, which is quickly followed by pain. I was exhausted yesterday. I had 2 hours of acupuncture in the AM, which helped a lot. It was my day to work in the local food pantry helping people with food selections for 2-1/2 hours. I was spent after that.
It was also made even clearer to me that I have no business flying across country until I feel good enough and food choices are more predictable so that I can plan, like you, Gloria!
Working in the food pantry is always eye-opening. I was thinking about access to decent foods and what I'd do if I could not afford the food I need. One woman I helped was a diabetic, gluten intolerant woman. The compromises she must make with her health to eat were just depressing. The food that we give out is cheap and processed and in the long run will cost us more (in all kinds of ways) as a nation.
Late yesterday afternoon, I heard from Tracey, the member who also lives in Kalamazoo. Turns out we live within 1/2 a mile from each other! Now we can join forces to figure out the best resources in our town!
It was also made even clearer to me that I have no business flying across country until I feel good enough and food choices are more predictable so that I can plan, like you, Gloria!
Working in the food pantry is always eye-opening. I was thinking about access to decent foods and what I'd do if I could not afford the food I need. One woman I helped was a diabetic, gluten intolerant woman. The compromises she must make with her health to eat were just depressing. The food that we give out is cheap and processed and in the long run will cost us more (in all kinds of ways) as a nation.
Late yesterday afternoon, I heard from Tracey, the member who also lives in Kalamazoo. Turns out we live within 1/2 a mile from each other! Now we can join forces to figure out the best resources in our town!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Jane,
That's kind of a unique reaction pattern, but it just goes to prove once again that we all react differently.
It's nice to have someone who understands, that near.
Tex
That's kind of a unique reaction pattern, but it just goes to prove once again that we all react differently.
I believe that's a new record for the board.Jane wrote:Turns out we live within 1/2 a mile from each other! Now we can join forces to figure out the best resources in our town!
It's nice to have someone who understands, that near.Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well, I have only been working on it since the 9th of January and finally, FINALLY my gastroenterologist has written an order for Enterolabs! His nurse called this morning and she was actually writing it and putting it in the mail for me. I told her to ask for panels A, C, and the genetic panel.
I think that I will go ahead and order the kit so that it will arrive so that maybe by a week from Monday I can send it off! From what I hear, this "collection" will be a walk in the park compared to some other tests I have been through!
I feel like I have been playing a very long board game and am nearing the end of the squares I must step on to get to the finish line.
I think that I will go ahead and order the kit so that it will arrive so that maybe by a week from Monday I can send it off! From what I hear, this "collection" will be a walk in the park compared to some other tests I have been through!
I feel like I have been playing a very long board game and am nearing the end of the squares I must step on to get to the finish line.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard