Andi,
In this forum:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
you can find lists of food ingredients that contain gluten, dairy, soy, etc., and you can find links to paleo, (caveman), diet sites, and other assorted diet information. There are also some good links to sites with information on those topics in this forum, including information on how to help resolve your osteoporosis issue:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=15
The calcium retention problems are addressed in these posts:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=497
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4683
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=1334
FYI, Polly is an MD who studies nature and associated environmental issues in her free time. She is one of the pioneers of using the diet to control the symptoms of MC, and obviously, she's an awesome source of experience and insight for this board.
Tex
afraid to try entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Andi,
Eating out in restaurants and with friends is probably one of the most difficult aspects of living gluten-free. It's not impossible, but you have to be very vigilant. Prior to my MC diagnosis, my DH and I ate out 2-3 times a week. It was something we both enjoyed doing. Now, I'll go out to eat only because I know my DH enjoys it and I feel like he's made enough sacrifices because of my MC.
Here are some tips that I've learned:
http://www.glutenfreeceliacweb.com/2008 ... summaries/
http://www.clubceliac.com/GlutenFreeGuideEatingOut.htm
Gloria
Eating out in restaurants and with friends is probably one of the most difficult aspects of living gluten-free. It's not impossible, but you have to be very vigilant. Prior to my MC diagnosis, my DH and I ate out 2-3 times a week. It was something we both enjoyed doing. Now, I'll go out to eat only because I know my DH enjoys it and I feel like he's made enough sacrifices because of my MC.
Here are some tips that I've learned:
- If you're intolerant to soy, a big problem is that many restaurants cook with vegetable oil, which is usually soy.
Tell the waitress what your intolerances are. He or she will ask the cook what menu items you can eat. You can also order or print cards listing them and can hand it to the waitress http://www.celiactravel.com/restaurant-cards.html. I just ate at a steak house on Wednesday and the cook came to my table to discuss what food items were acceptable. This was after the waitress asked me "What can you eat??" Restaurants will usually try to be very accommodating. The biggest hindrance is our embarrassment. I still get very embarrassed to tell people my list of intolerances.
Order fish or steak, a baked potato and a vegetable, all plain. Pure 100% beef hamburger without the bun can be OK, too. Bring your own GF condiments, such as steak sauce or catsup, homemade mayo for the potato if you're casein and/or egg-free. If a sweet potato is available, I'll order that with a side of honey. Be aware that some restaurants put soybean oil on the steak and potato before they cook them. Ask if they do. You can request them to leave yours plain.
I've had luck eating at a local Mexican restaurant. I order a corn tortilla, no cheese or sour cream, and skip the beans. Guacamole is a great condiment. I think that Mexican restaurants cook with corn oil, which I can tolerate. The rice is also OK, after I pick out the peas and green beans. I'm able to eat a small amount of lettuce. I can also tolerate tomatoes.
Most french fries are coated with flour. They also are cooked with flour-coated onion rings and likely are fried in soybean oil.
I bring my own GF hamburger bun to Arbys. They put the roast beef on it and I'm able to eat their potato cakes. I also bring a GF hot dog bun to an Italian beef restaurant (very popular in the Midwest) and they'll put the Italian beef on it for me.
I used to order a salad with meat and brought my own GF salad dressing. Then I realized that lettuce was causing me problems, so I no longer order salads. I hope to eat them again after I'm completely healed.
Breakfast is a problem when eating out if you are intolerant to eggs and gluten, and my DH loves to eat breakfast out. The only breakfast I've been able to eat out is a potato skillet. Make sure they use fresh potatoes and don't cook with soy oil.
When travelling, I pack a separate food suitcase, minus liquids and carry it on the plane. I'm considering getting a note from my GI so that I can also pack liquids. If I have to eat breakfast at the airport, I put GF cereal in a bowl and put rice milk in 3 oz. containers, which are acceptable. It's impossible for me to purchase breakfast at the airport. I've also eaten homemade GF muffins and a banana.
Below are links to a few websites which are helpful for eating out. I've also looked at allergy information on the restaurant's website and/or called them before I go.
http://www.glutenfreeceliacweb.com/2008 ... summaries/
http://www.clubceliac.com/GlutenFreeGuideEatingOut.htm
Gloria
You never know what you can do until you have to do it.
Gloria,
That's an excellent post, and you've inspired me to try some local Mexican food restaurants, (something I haven't done for many years), but be aware that Andi doesn't eat meat, (it's listed with his intolerances).
Andi,
Note that, as Gloria mentioned, you may be able to get away with picking out pieces of food, (such as legumes, or pieces of cheese), that are secondary intolerances for you, if they are are in your food at a restaurant, without getting sick. You should never attempt to pick out any gluten items that touch your food, however, (such as a slice of bread touching your food, or croutons, or even bread crumbs, because it takes such tiny amounts of gluten to trigger a reaction, that you will most likely get sick every time, if you try to do that. Gluten is a very potent toxin for those who are intolerant of it.
Tex
That's an excellent post, and you've inspired me to try some local Mexican food restaurants, (something I haven't done for many years), but be aware that Andi doesn't eat meat, (it's listed with his intolerances).
Andi,
Note that, as Gloria mentioned, you may be able to get away with picking out pieces of food, (such as legumes, or pieces of cheese), that are secondary intolerances for you, if they are are in your food at a restaurant, without getting sick. You should never attempt to pick out any gluten items that touch your food, however, (such as a slice of bread touching your food, or croutons, or even bread crumbs, because it takes such tiny amounts of gluten to trigger a reaction, that you will most likely get sick every time, if you try to do that. Gluten is a very potent toxin for those who are intolerant of it.
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.
Thank you, Gloria
I really appreciate your post. Very helpful.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Andi,
Oops, sorry for my mistake.
I wondered why you spelled it that way, but it never dawned on me that it was short for Andrea. Duh! 
Shame on me, 'cause Andrea is one of my favorite names - (it has a neat sound to it).
I have to admit that when I read another post you wrote, a few minutes ago, (in the fire ant thread), concerning acupuncture for menopause, the gears did start to turn in my feeble brain.
Please forgive me.
Tex
Oops, sorry for my mistake.
I wondered why you spelled it that way, but it never dawned on me that it was short for Andrea. Duh! Shame on me, 'cause Andrea is one of my favorite names - (it has a neat sound to it).I have to admit that when I read another post you wrote, a few minutes ago, (in the fire ant thread), concerning acupuncture for menopause, the gears did start to turn in my feeble brain.
Please forgive me.
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.
Tex,
I too suspected that Angi was a female. When I posted my suggestions, I didn't realize that Angi is a vegetarian. I think I missed the post where she discussed it. Angi, I guess you can take the suggestions that are helpful and hopefully others here who are vegetarians can give you suggestions.
I use vegan sites for egg-free recipes and there is a big emphasis on eating soy, probably because it provides complete protein. It appears that you don't know whether soy is an intolerance for you or not. If it is, then you have a dilemma - how to get adequate protein without meat or soy. The usual substitute flours (white and brown rice, corn, potato) for gluten flours are lacking the nutrients contained in wheat flour. There are alternative gluten-free flours which actually have better nutrients than wheat flour, though not as much protein as soy flour. They are more expensive than wheat flour. You can purchase them at Whole Foods and health food stores. Some of them are: amaranth, sorghum, millet, quinoa, buckwheat and teff. A comparison of the nutrients of some are listed here:
http://www.nuworldamaranth.com/cart/PDF ... omText.pdf
(Note that the amount of soy flour evaluated is 1 1/4 cups compared to 1/2 cup of amaranth flour, due to the volume differences in 100 grams.)
Hopefully this will help you somewhat.
Gloria
I too suspected that Angi was a female. When I posted my suggestions, I didn't realize that Angi is a vegetarian. I think I missed the post where she discussed it. Angi, I guess you can take the suggestions that are helpful and hopefully others here who are vegetarians can give you suggestions.
I use vegan sites for egg-free recipes and there is a big emphasis on eating soy, probably because it provides complete protein. It appears that you don't know whether soy is an intolerance for you or not. If it is, then you have a dilemma - how to get adequate protein without meat or soy. The usual substitute flours (white and brown rice, corn, potato) for gluten flours are lacking the nutrients contained in wheat flour. There are alternative gluten-free flours which actually have better nutrients than wheat flour, though not as much protein as soy flour. They are more expensive than wheat flour. You can purchase them at Whole Foods and health food stores. Some of them are: amaranth, sorghum, millet, quinoa, buckwheat and teff. A comparison of the nutrients of some are listed here:
http://www.nuworldamaranth.com/cart/PDF ... omText.pdf
(Note that the amount of soy flour evaluated is 1 1/4 cups compared to 1/2 cup of amaranth flour, due to the volume differences in 100 grams.)
Hopefully this will help you somewhat.
Gloria
You never know what you can do until you have to do it.
Hi Andi
I am new here but just wanted to chime in since your story sounds like mine! I too know that my MC was due to excessive Ibuprofen use. I look back now and think that if I had known then what I know now.....oh well.....you know the rest of the story. Anyway, just wanted to let you know that I started Entorcort about 2 months ago. I am on a 6 week course. My dosing is 3 caps for 2 months, 2 caps, for 2 months and 1 cap for 2 months. Tomorrow I start on my reduced dosage of 2 for 2 months. Since the start of my course of treatment I have not noticed any side effects. I too was concerned about taking a steroid. I think it is helping me some. I have since learned through Enterolabs that I have sensitivities to gluten, soy(which I had been ingesting by the tons) casein and egg. Now I am hoping that by eating correctly and taking the rest of the course of medication I might very well be in remission soon. Optimistic thinking I know but I think it helps as well. Good luck!
Geargirl
I am new here but just wanted to chime in since your story sounds like mine! I too know that my MC was due to excessive Ibuprofen use. I look back now and think that if I had known then what I know now.....oh well.....you know the rest of the story. Anyway, just wanted to let you know that I started Entorcort about 2 months ago. I am on a 6 week course. My dosing is 3 caps for 2 months, 2 caps, for 2 months and 1 cap for 2 months. Tomorrow I start on my reduced dosage of 2 for 2 months. Since the start of my course of treatment I have not noticed any side effects. I too was concerned about taking a steroid. I think it is helping me some. I have since learned through Enterolabs that I have sensitivities to gluten, soy(which I had been ingesting by the tons) casein and egg. Now I am hoping that by eating correctly and taking the rest of the course of medication I might very well be in remission soon. Optimistic thinking I know but I think it helps as well. Good luck!
Geargirl
Geargirl,
What is the enterolab that people keep mentioning? I keep forgetting to ask. Is it something that insurance will cover? If not, what does it cost? I have figured out that they can tell you what food sensitivies you have, but how does it work? Does your doctor send them a blood sample? Any info. would be greatly appreciated.
I am encouraged to hear that not many have had side effects from Entocort. It makes me feel a little bit better in case i have to take it.
Thanks!
What is the enterolab that people keep mentioning? I keep forgetting to ask. Is it something that insurance will cover? If not, what does it cost? I have figured out that they can tell you what food sensitivies you have, but how does it work? Does your doctor send them a blood sample? Any info. would be greatly appreciated.
I am encouraged to hear that not many have had side effects from Entocort. It makes me feel a little bit better in case i have to take it.
Thanks!
Andi,
Enterolab was founded by Dr. Kenneth Fine, in Dallas Texas, while he was doing research at Baylor University. Dr. Fine is a GI doc who has MC himself, and he is a leading researcher for gluten sensitive enteropathy, MC, celiac disease, etc. He is the doctor who developed the Pepto-Bismol treatment that many GI docs are just now getting around to recommending as treatment for MC, but he no longer recommends it, due to to the possibility of a toxic buildup of bismuth for some patients. He originally proposed following the GF diet, concurrently with the Pepto treatment, (the Pepto helped to bring remission faster than the diet alone), but now, he recommends treatment by diet alone. Most of the GI docs who recommend the Pepto treatment, forget to mention the GF diet part, because they don't believe that MC can be controlled by diet changes. Consequently, when their patients complete the 8-week course of Peoto-Bismol, most of them will relapse a few days later, the GI doc will be mystified, and he or she will then prescribe some other treatment, (usually with similar results).
The tests done by Enterolab are performed on stool samples. These tests are several orders of magnitude more sensitive than the traditional blood tests, because the antibodies are actually produced in the intestines, (not in the blood), and therefore, they are much more easily detected in stool samples. In fact, antibodies to gluten can be detected up to a year after gluten is completely removed from the diet. The classic celiac blood tests, on the other hand, can only detect antibodies to gluten for a few weeks after gluten is withdrawn from the diet. For the type of gluten sensitivity that we have, (with MC), the celiac blood tests virtually never show a positive test result for us, (unless the person being tested actually is a celiac, of course), even though many of us are just as gluten sensitive as full-blown celiacs.
This is relatively new technology, so many insurance companies will not pay for the tests, at this point. Some will pay for them, if a doctor orders the tests. Unfortunately, many GI docs do not believe that MC is associated with food intolerances, (in fact, many of them apparently don't believe that there is such a thing as food intolerances), so many of them view the tests as a scam of some sort. It usually takes a couple of decades or so, for the medical profession to warm up to new technologies, unfortunately.
The way that the tests work, is - you order the tests you want, and the lab sends a collection kit, with instructions, shipping label, etc., and you collect a sample, package it, freeze it, and then call DHL to arrange for pickup for overnight delivery. They only schedule pickups on Monday through Wednesday, so that the lab has a chance to process every sample for storage, before the weekend. If you give them your e-mail address, you will usually get your results in about ten days to two weeks, depending on their workload. They keep samples for about a year, so if you decide to have an additional test done later, it can be arranged by a phone call, with no need for another sample.
The link that Joan listed will get you to the lab site. If you would like to read additional information, Dr. fine has a lot of information posted that you can access from this page, (it also has a link to the lab, of course):
http://www.finerhealth.com/
If I forgot anything, please don't hesitate to ask.
Tex
Enterolab was founded by Dr. Kenneth Fine, in Dallas Texas, while he was doing research at Baylor University. Dr. Fine is a GI doc who has MC himself, and he is a leading researcher for gluten sensitive enteropathy, MC, celiac disease, etc. He is the doctor who developed the Pepto-Bismol treatment that many GI docs are just now getting around to recommending as treatment for MC, but he no longer recommends it, due to to the possibility of a toxic buildup of bismuth for some patients. He originally proposed following the GF diet, concurrently with the Pepto treatment, (the Pepto helped to bring remission faster than the diet alone), but now, he recommends treatment by diet alone. Most of the GI docs who recommend the Pepto treatment, forget to mention the GF diet part, because they don't believe that MC can be controlled by diet changes. Consequently, when their patients complete the 8-week course of Peoto-Bismol, most of them will relapse a few days later, the GI doc will be mystified, and he or she will then prescribe some other treatment, (usually with similar results).
The tests done by Enterolab are performed on stool samples. These tests are several orders of magnitude more sensitive than the traditional blood tests, because the antibodies are actually produced in the intestines, (not in the blood), and therefore, they are much more easily detected in stool samples. In fact, antibodies to gluten can be detected up to a year after gluten is completely removed from the diet. The classic celiac blood tests, on the other hand, can only detect antibodies to gluten for a few weeks after gluten is withdrawn from the diet. For the type of gluten sensitivity that we have, (with MC), the celiac blood tests virtually never show a positive test result for us, (unless the person being tested actually is a celiac, of course), even though many of us are just as gluten sensitive as full-blown celiacs.
This is relatively new technology, so many insurance companies will not pay for the tests, at this point. Some will pay for them, if a doctor orders the tests. Unfortunately, many GI docs do not believe that MC is associated with food intolerances, (in fact, many of them apparently don't believe that there is such a thing as food intolerances), so many of them view the tests as a scam of some sort. It usually takes a couple of decades or so, for the medical profession to warm up to new technologies, unfortunately.
The way that the tests work, is - you order the tests you want, and the lab sends a collection kit, with instructions, shipping label, etc., and you collect a sample, package it, freeze it, and then call DHL to arrange for pickup for overnight delivery. They only schedule pickups on Monday through Wednesday, so that the lab has a chance to process every sample for storage, before the weekend. If you give them your e-mail address, you will usually get your results in about ten days to two weeks, depending on their workload. They keep samples for about a year, so if you decide to have an additional test done later, it can be arranged by a phone call, with no need for another sample.
The link that Joan listed will get you to the lab site. If you would like to read additional information, Dr. fine has a lot of information posted that you can access from this page, (it also has a link to the lab, of course):
http://www.finerhealth.com/
If I forgot anything, please don't hesitate to ask.
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.