Teri a quick note about your thought that you would have to choose between Entocort or Imuran. Fortunately that is not the case, I was taking Imuran for 2 years and had taken Entocort twice during that time. I had asked my GI doctor about that and apparent ly there is no conflict.
It should be noted that Entocort as it is a steroid is not prescribed as a long term medication and would most likely be used for less than 6 months. Meds like Imuran or Embrel are used for long term treatment and are classed as "Steroid Sparing Agents" as for autoimmune conditions they can bring the condition under control with minimal need for coricosteroid therapy.
Another thought....there have been several of us that have been prescribed Imuran to treat MC (myself included) and it has been quite effective.
Normally these more potent medications are not used to treat MC as a first line treatment, but if you were to use Imuran to treat PsA it would most likely bring the MC into remmision as well.
New here, new dx of MC as of yesterday.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Okay Teri,
I am going to jump on the bandwagon. I am not healed, I am far from it and struggling, but here's what I can say....I had Lupus. I stopped eating wheat and dairy, no more Lupus. My daughter (3) had psoriasis. We had her tested at Enterolab (she was already gluten and dairy free). She was off the charts for the four main foods-Gluten, Dairy, Soy, and Eggs. We took her off Soy and Eggs-one week later.....no Psoriasis!
You only have to do it for Two weeks! (It takes two weeks to get gluten completely out of your system) I think if you could go without gluten for two weeks you would either feel so much better you wouldn't want to go back, or when you did go back you would feel so much worse it would make you want to stop! If you don't, then no loss, right?
You could just dare yourself to try! It could make the world of difference with your health!
Susie
I am going to jump on the bandwagon. I am not healed, I am far from it and struggling, but here's what I can say....I had Lupus. I stopped eating wheat and dairy, no more Lupus. My daughter (3) had psoriasis. We had her tested at Enterolab (she was already gluten and dairy free). She was off the charts for the four main foods-Gluten, Dairy, Soy, and Eggs. We took her off Soy and Eggs-one week later.....no Psoriasis!
You only have to do it for Two weeks! (It takes two weeks to get gluten completely out of your system) I think if you could go without gluten for two weeks you would either feel so much better you wouldn't want to go back, or when you did go back you would feel so much worse it would make you want to stop! If you don't, then no loss, right?
You could just dare yourself to try! It could make the world of difference with your health!
Susie
-
Carriagehouse
- Adélie Penguin
- Posts: 99
- Joined: Mon Dec 10, 2012 11:46 pm
- Location: Oregon
I recently discovered some GF ciabatta rolls and baguettes that are par-baked and when you bake them for 6-7 minutes at home, they taste like bakery fresh bread. I found then at Lingonberries, a gluten free store in Vancouver, WA and although I have been unable to locate them elsewhere (Whole Foods, Trader Joes) they are available on-line. You can find the ingredient list there as well. I note they do contain soy, but so far I haven't had issues with soy.
http://www.schar.com/us/gluten-free-products/
If the link doesn't work, just search for Schar GF on-line.
http://www.schar.com/us/gluten-free-products/
If the link doesn't work, just search for Schar GF on-line.
Leslie
~~~~
Diagnosed with Lymphocytic Colitis on December 5, 2012
True friendship is like sound health ... the value is seldom appreciated until it is lost ~ Charles Caleb Colton
~~~~
Diagnosed with Lymphocytic Colitis on December 5, 2012
True friendship is like sound health ... the value is seldom appreciated until it is lost ~ Charles Caleb Colton
Yay another Teri!...lol! Welcome!
I love your posts.....we need all the humor we can get. I have nothing to add really except to tell you that I thought going GF would be tough but it actually was quite easy for me. The hardest part was finding out what had gluten in it and what didn't. Dairy free was harder for me. Just remember that it takes awhile to get gluten out of your system. I've been GF since July 1 and as of the end of October I still had gluten antibodies circulating in my blood stream. But now it's been 6 months and I believe my levels have gone down to the point where I don't react anymore. I honestly don't know if I react to dairy but when you have D all the time, dairy will probably just make it worse. I also didn't get the withdrawals from Gluten as I've heard some other people have on my Celiac forum. What was hardest for me was giving up the sugar.
Please hang in there....it will get easier! I was on Pepto for 3 months while I changed my diet big time and now I've been med free since December 10th with the exception of a few doses of Pepto once a week during the holidays, and I'm feeling great.
Keep us updated on the diet. There is a list on the forum of ingredients we need to avoid depending on our intolerances. GF, DF, etc.
Thanks again for the humor!
"Gluten the Darth Vadar of food sensitivities".....love it!!
Terri
I love your posts.....we need all the humor we can get. I have nothing to add really except to tell you that I thought going GF would be tough but it actually was quite easy for me. The hardest part was finding out what had gluten in it and what didn't. Dairy free was harder for me. Just remember that it takes awhile to get gluten out of your system. I've been GF since July 1 and as of the end of October I still had gluten antibodies circulating in my blood stream. But now it's been 6 months and I believe my levels have gone down to the point where I don't react anymore. I honestly don't know if I react to dairy but when you have D all the time, dairy will probably just make it worse. I also didn't get the withdrawals from Gluten as I've heard some other people have on my Celiac forum. What was hardest for me was giving up the sugar.
Please hang in there....it will get easier! I was on Pepto for 3 months while I changed my diet big time and now I've been med free since December 10th with the exception of a few doses of Pepto once a week during the holidays, and I'm feeling great.
Keep us updated on the diet. There is a list on the forum of ingredients we need to avoid depending on our intolerances. GF, DF, etc.
Thanks again for the humor!
"Gluten the Darth Vadar of food sensitivities".....love it!!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Ok, you all have me convinced... so last night I march down the stairs with conviction, proclaim my plans with authority to my husband and his reply was simply, "well then how will you know which is working? the pills or the diet?" Then I skulk off because I didn't know how to reply, except for "good question... I'll find out."
I realize that after I come off the entocort and am gluten-free the chances of relapse are likely less than if I return to good old gluten-laden eating. Correct? I guess that's what hubs is saying to test. I told him that maybe it would rid me of headaches and he says in his most Spock-like tone, "shouldn't we be killing one bird at at time, dear?"
Oh, and I have a great idea... and it's probably been done before... but I think there should be a "gluten free get started island spa" complete with cabana boys and daily shiatsu massages poolside. You go for 2 weeks, get pampered, take all the how-to classes, learn to cook, and the rest is fun in the sun. And for those veteran GFers, you all could just come for a vacay without the menu worry. Who's with me? We could get cabana girls too.
Terri.... I just lost vision in one eye and nearly fainted... I have to give up sugar next?! *just kidding*
I realize that after I come off the entocort and am gluten-free the chances of relapse are likely less than if I return to good old gluten-laden eating. Correct? I guess that's what hubs is saying to test. I told him that maybe it would rid me of headaches and he says in his most Spock-like tone, "shouldn't we be killing one bird at at time, dear?"
Oh, and I have a great idea... and it's probably been done before... but I think there should be a "gluten free get started island spa" complete with cabana boys and daily shiatsu massages poolside. You go for 2 weeks, get pampered, take all the how-to classes, learn to cook, and the rest is fun in the sun. And for those veteran GFers, you all could just come for a vacay without the menu worry. Who's with me? We could get cabana girls too.
Terri.... I just lost vision in one eye and nearly fainted... I have to give up sugar next?! *just kidding*
Caught in a perpetual game of mommy survivor... haven't been voted off the island yet!
Teri,Teri wrote:Terri.... I just lost vision in one eye and nearly fainted... I have to give up sugar next?!
That's a worrisome symptom, because it suggests a possible TIA or mini-stroke. Please call your doctor, or call or go to your closest ER to check that out. It's probably nothing, but as one who takes meds to control my stroke risk, I would be remiss if I didn't advise you that one cannot afford to take chances with stroke symptoms.
Gluten sensitivity is also associated with an elevated stroke risk, independent of all known conventional predisposing conditions.
It might even be a good idea to take an aspirin, just to be on the safe side.
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.
sorry, that was a joke.... I should have added a smiley face or a wink... a fainting response at the idea of now having to give up sugar. Sorry to alarm... will edit. hard to convey over the internet... apologies. I will be sure to add the requisite j/k going forward.
Caught in a perpetual game of mommy survivor... haven't been voted off the island yet!
Teri,
Well that's a relief.
You had me going for a minute there. The mention of fainting isn't an issue — losing sight in one eye is a huge red flag for an ischemic stroke.
Tex
Well that's a relief.
You had me going for a minute there. The mention of fainting isn't an issue — losing sight in one eye is a huge red flag for an ischemic stroke.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,
So is Prilosec something I should ask the dr to take me off of? I've only had 2 doses. I'm calling today. I'm not sure what PPI is but I'm guess that's the class of drug prilosec is. it's an acid reducer I thought. I need to read more about it.
So is Prilosec something I should ask the dr to take me off of? I've only had 2 doses. I'm calling today. I'm not sure what PPI is but I'm guess that's the class of drug prilosec is. it's an acid reducer I thought. I need to read more about it.
Caught in a perpetual game of mommy survivor... haven't been voted off the island yet!
Teri,
Here's the problem. Doctors are in love with PPIs, but PPIs are one of the most troublesome drugs on the market. I can cite numerous research articles that detail all the health problems that they cause. I have no idea why most doctors seem to be blind to the dangers.
There are no guarantees that Prilosec is triggering your MC, but statistically, the risk is quite high. It may not be easy to wean off it, and you may need to make changes in the way you eat late in the day, and changes in how you sleep, but you will be much better off in the long run, if you discontinue that drug ASAP. It's possible to stop cold turkey early on, but after it has been used for a while, most people have better luck weaning off it if they taper their dose very slowly.
PPIs are not just acid reducers. They prompt the stomach to produce less acid by altering the way that the parietal cells in the stomach work. Over time, undesirable physical changes accrue to the parietal cells (dysplasia), and eventually some of the damage may become irreversible. Normally, though, discontinuing the drug will allow the parietal cells to slowly restore normal histology. If you want to see some medical research articles detailing the risks of taking a PPI, I'll be happy to list some of them. Some of the known risks include triggering MC, an increased risk of a bacterial infection or SIBO, an increased risk of a C. diff infection, an increased risk of fracture associated with osteoporosis, etc.
Not to mention that they reduce the effectiveness of our digestive system, something that we can ill afford when we have an IBD. PPIs also tend to weaken the lower esophageal sphincter, which is the cause of acid reflux in the first place. IOW, they cause the very problem that they are prescribed to prevent, but by reducing the acidity of the stomach contents, the increased reflux that they cause does less damage to the esophagus, because it is less acid. It's a ridiculous, convoluted treatment regimen.
Tex
Here's the problem. Doctors are in love with PPIs, but PPIs are one of the most troublesome drugs on the market. I can cite numerous research articles that detail all the health problems that they cause. I have no idea why most doctors seem to be blind to the dangers.
There are no guarantees that Prilosec is triggering your MC, but statistically, the risk is quite high. It may not be easy to wean off it, and you may need to make changes in the way you eat late in the day, and changes in how you sleep, but you will be much better off in the long run, if you discontinue that drug ASAP. It's possible to stop cold turkey early on, but after it has been used for a while, most people have better luck weaning off it if they taper their dose very slowly.
PPIs are not just acid reducers. They prompt the stomach to produce less acid by altering the way that the parietal cells in the stomach work. Over time, undesirable physical changes accrue to the parietal cells (dysplasia), and eventually some of the damage may become irreversible. Normally, though, discontinuing the drug will allow the parietal cells to slowly restore normal histology. If you want to see some medical research articles detailing the risks of taking a PPI, I'll be happy to list some of them. Some of the known risks include triggering MC, an increased risk of a bacterial infection or SIBO, an increased risk of a C. diff infection, an increased risk of fracture associated with osteoporosis, etc.
Not to mention that they reduce the effectiveness of our digestive system, something that we can ill afford when we have an IBD. PPIs also tend to weaken the lower esophageal sphincter, which is the cause of acid reflux in the first place. IOW, they cause the very problem that they are prescribed to prevent, but by reducing the acidity of the stomach contents, the increased reflux that they cause does less damage to the esophagus, because it is less acid. It's a ridiculous, convoluted treatment regimen.
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.
Hi Teri. Yes, you might want to not take Prilosec for now. The gluten free diet may just take care of that healing also.
I am going to try to answer your husband's question. The Entocort brings down the inflammation, but doesn't HEAL your intestines. It gives you a reprieve from your symptoms WHILE YOU WORK ON YOUR DIET. Gluten, dairy, soy, and eggs ( in that order) are known inflammation PRODUCERS in people who react to them. Your migraines are a sure clue that you shouldn't be eating gluten.... ever again. I think that is what you need to wrap your head around. The "big four" proteins that I mentioned are the ones that if you are intolerant to, you just shouldn't eat them again. Period. Then there are the other foods that are "irritants". Sugar is one of them. What irritates one person's gut may not another. I have always been able to eat some sugar :) However, For the first six months, I didn't eat any Raw fruits or veggies ( salads) or beans and legumes. Once I healed, I was able to put some of these back into my diet. It's a process. And it's life long.
I hope that answers your question. Having your migraines go away will just be a happy side effect of you being GF :)
Leah
I am going to try to answer your husband's question. The Entocort brings down the inflammation, but doesn't HEAL your intestines. It gives you a reprieve from your symptoms WHILE YOU WORK ON YOUR DIET. Gluten, dairy, soy, and eggs ( in that order) are known inflammation PRODUCERS in people who react to them. Your migraines are a sure clue that you shouldn't be eating gluten.... ever again. I think that is what you need to wrap your head around. The "big four" proteins that I mentioned are the ones that if you are intolerant to, you just shouldn't eat them again. Period. Then there are the other foods that are "irritants". Sugar is one of them. What irritates one person's gut may not another. I have always been able to eat some sugar :) However, For the first six months, I didn't eat any Raw fruits or veggies ( salads) or beans and legumes. Once I healed, I was able to put some of these back into my diet. It's a process. And it's life long.
I hope that answers your question. Having your migraines go away will just be a happy side effect of you being GF :)
Leah
Thanks for posting that, Leah. I forgot to address that question. You're right on target.
The bottom line is:
1. Anti-inflammatory drugs suppress inflammation.
2. Diet changes to exclude the foods to which we have developed a sensitivity, prevent the inflammation from being generated in the first place.
Okay, so maybe that's two bottom lines.
Proof of that can be found in the fact that without the diet changes, you will almost surely relapse after the drugs are discontinued. Further proof can be found in the fact that the drugs are an unnecessary part of the treatment program. Clinical symptoms will remain a problem for a longer period of time without the drugs, but as the Leah pointed out, as the gut heals following the diet changes, those symptoms will fade away.
IOW, the drugs can make life more comfortable during the recovery period, but they are a non-essential part of the program. The diet changes are essential to long-term remission (unless you want to take potent drugs, and put up with their side effects, for the rest of your life). It's that simple.
Tex
The bottom line is:
1. Anti-inflammatory drugs suppress inflammation.
2. Diet changes to exclude the foods to which we have developed a sensitivity, prevent the inflammation from being generated in the first place.
Okay, so maybe that's two bottom lines.
Proof of that can be found in the fact that without the diet changes, you will almost surely relapse after the drugs are discontinued. Further proof can be found in the fact that the drugs are an unnecessary part of the treatment program. Clinical symptoms will remain a problem for a longer period of time without the drugs, but as the Leah pointed out, as the gut heals following the diet changes, those symptoms will fade away.
IOW, the drugs can make life more comfortable during the recovery period, but they are a non-essential part of the program. The diet changes are essential to long-term remission (unless you want to take potent drugs, and put up with their side effects, for the rest of your life). It's that simple.
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.
All joking aside, this is actually quite horrifying, the changes that I will have to make. Forever. I guess I have to relate that horror to the horror of chronic diarrhea and migraine. It's all very overwhelming right now. I guess I need to start equating the change to freedom from pain and being able to leave the house without worry. But it's still a jagged pill.
Caught in a perpetual game of mommy survivor... haven't been voted off the island yet!