Finally Green Light to go Gluten Free!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
- Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Anne, I work for the university MIT (Massachsettes Institute of Technology) in Boston, I am a physicist, specifically in photonics. I suspect you may be in one of the British Isles given some of the spelling...just a guess
As far as the treatments, I'm not totally sure what your referring to but if its going gluten free or MC / Crohns treatments, the meds are not too bad. If its the recent spinal injections...well I'm not sure why they call water boarding torture these injections are tough to get through even with a modest amount of anesthesia, however and importantly the results are well worth the procedure. I've been dealing with elevated continuos pain for about 8 months, now with the injections I am almost 100% pain free without any medications, what a relief. I did have some difficulties with the higher levels of steroids that are absorbed just after the injections, I find they give me a lot of anxiety and basically made me quite grumpy...
As far as I'm concerned the difference between being gluten sensitive or intolerant, there is none. I believe the confusion lies in where the current doctors measure the damage that gluten can cause, this is normally done by looking for flattening of the villi in the jejunum.
What has been found through experience here and in the literature, the response to gluten can be throughout the GI tract and is systemically problematic in cases of leaky gut. I believe since the flattening of the villi was the first noticeable symptom of gluten sensitivity (Marsh classification) this became the default method of testing for celiac (oops coeliac LOL) disease.
There is however from person to person, levels of reactivity and levels of disease state activity throughout the population. Whether you are sensitive or intolerant to gluten, the only treatment that works for all is elimination of that ingredient from your diet, continuing to consume even small amounts of it will only allow the antibodies to persist in your system resulting in the myriad of symptoms it causes; keep in mind the antibodies from gluten can persist past 60 days.
As far as the procedure Anne, it is a breeze...this is from someone who has a tough time at the dentist. The propophol is wonderful, and you actually wake up refreshed feeling great, you don't feel or remember anything. By far the preparation is the worst, and I'm one of the type 'A' personality wimps by far. Once the preparation is done, the procedure is a breeze. Getting your teeth cleaned at the dentist is worse.
As far as staying calm....let me know when you figure it out
As far as the treatments, I'm not totally sure what your referring to but if its going gluten free or MC / Crohns treatments, the meds are not too bad. If its the recent spinal injections...well I'm not sure why they call water boarding torture these injections are tough to get through even with a modest amount of anesthesia, however and importantly the results are well worth the procedure. I've been dealing with elevated continuos pain for about 8 months, now with the injections I am almost 100% pain free without any medications, what a relief. I did have some difficulties with the higher levels of steroids that are absorbed just after the injections, I find they give me a lot of anxiety and basically made me quite grumpy...
As far as I'm concerned the difference between being gluten sensitive or intolerant, there is none. I believe the confusion lies in where the current doctors measure the damage that gluten can cause, this is normally done by looking for flattening of the villi in the jejunum.
What has been found through experience here and in the literature, the response to gluten can be throughout the GI tract and is systemically problematic in cases of leaky gut. I believe since the flattening of the villi was the first noticeable symptom of gluten sensitivity (Marsh classification) this became the default method of testing for celiac (oops coeliac LOL) disease.
There is however from person to person, levels of reactivity and levels of disease state activity throughout the population. Whether you are sensitive or intolerant to gluten, the only treatment that works for all is elimination of that ingredient from your diet, continuing to consume even small amounts of it will only allow the antibodies to persist in your system resulting in the myriad of symptoms it causes; keep in mind the antibodies from gluten can persist past 60 days.
As far as the procedure Anne, it is a breeze...this is from someone who has a tough time at the dentist. The propophol is wonderful, and you actually wake up refreshed feeling great, you don't feel or remember anything. By far the preparation is the worst, and I'm one of the type 'A' personality wimps by far. Once the preparation is done, the procedure is a breeze. Getting your teeth cleaned at the dentist is worse.
As far as staying calm....let me know when you figure it out
Joe
Hi Anne,
I suspect that many/most people use those two terms somewhat interchangeably, but IMO there is a distinct difference, because (again, IMO) they define two completely different phenomena. The differences can be tricky to define, but IMO, "sensitivity" implies an adverse immune system reaction, such as the production of antibodies, histamines, cytokines, leukotrienes, etc., that typically (but not always) results in recognized clinical symptoms.
It is possible to be sensitive to a food item (produce antibodies, for example), but not be intolerant of it (that is, not show any clinical symptoms).
For example, I produce antibodies to casein, so I consider myself to be casein-sensitive. However, I can eat casein without producing any clinical symptoms, so I have obviously developed a tolerance for it (just as some celiacs are asymptomatic to gluten because they have developed a tolerance for it). IOW, I have a sensitivity to casein, but not necessarily an intolerance. Now some people might claim that if I am tolerant of casein, then I am not sensitive to it. My response to that is to point out that my immune system obviously believes that I am sensitive to casein, because it produces antibodies to it. That's why I feel that the distinction between those two terms must involve a consideration of any immune system response that might be involved.
Furthermore, on the other hand, it's possible to be intolerant of a food, without being sensitive to it.
An example of this is lactose intolerance. Lactose intolerance is caused by a deficiency of the lactase enzyme, which results in the inability to properly digest milk. While this condition produces clinical symptoms as a result of the fermentation of undigested lactose in the colon, (gas, bloating, cramps, etc.), it does not involve an immune system event. So clearly, it's also possible to be intolerant to a food without being sensitive to it.
I hope I haven't just confused the issue.
Tex
I suspect that many/most people use those two terms somewhat interchangeably, but IMO there is a distinct difference, because (again, IMO) they define two completely different phenomena. The differences can be tricky to define, but IMO, "sensitivity" implies an adverse immune system reaction, such as the production of antibodies, histamines, cytokines, leukotrienes, etc., that typically (but not always) results in recognized clinical symptoms.
It is possible to be sensitive to a food item (produce antibodies, for example), but not be intolerant of it (that is, not show any clinical symptoms).
For example, I produce antibodies to casein, so I consider myself to be casein-sensitive. However, I can eat casein without producing any clinical symptoms, so I have obviously developed a tolerance for it (just as some celiacs are asymptomatic to gluten because they have developed a tolerance for it). IOW, I have a sensitivity to casein, but not necessarily an intolerance. Now some people might claim that if I am tolerant of casein, then I am not sensitive to it. My response to that is to point out that my immune system obviously believes that I am sensitive to casein, because it produces antibodies to it. That's why I feel that the distinction between those two terms must involve a consideration of any immune system response that might be involved.
Furthermore, on the other hand, it's possible to be intolerant of a food, without being sensitive to it.
An example of this is lactose intolerance. Lactose intolerance is caused by a deficiency of the lactase enzyme, which results in the inability to properly digest milk. While this condition produces clinical symptoms as a result of the fermentation of undigested lactose in the colon, (gas, bloating, cramps, etc.), it does not involve an immune system event. So clearly, it's also possible to be intolerant to a food without being sensitive to it.
I hope I haven't just confused the issue.
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.
- Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Tex wouldn't intolerance by definition mean that you are sensitive to it.
i.e. If I am intolerant to a substance I am sensitive to its consumption. With that said intolerance is a way to describe a level of sensitivity. I could see someone reacting to dairy in that the only symptom was let's say watery eyes. You could still tolerate dairy, but you are sensitive to it, if you could not tolerate or accept the watery eyes, you would be intolerant to it.
I have seen these terms used to define seemingly 2 different entities or etiologies, when I view one term as way to describe the other, to me this has been confusing.
i.e. If I am intolerant to a substance I am sensitive to its consumption. With that said intolerance is a way to describe a level of sensitivity. I could see someone reacting to dairy in that the only symptom was let's say watery eyes. You could still tolerate dairy, but you are sensitive to it, if you could not tolerate or accept the watery eyes, you would be intolerant to it.
I have seen these terms used to define seemingly 2 different entities or etiologies, when I view one term as way to describe the other, to me this has been confusing.
Joe
IMO, the only way to reliably distinguish between the two is to invoke the immune system response/s. The key is how one chooses to define "sensitive". Most people use ambiguous terms, but that accomplishes little, and leads to confusion, IMO. If you allow the immune system to define the meaning of "sensitive", then not only is the distinction clarified, but it can be quantified, to some extent.Joe wrote:Tex wouldn't intolerance by definition mean that you are sensitive to it.
The term "sensitivity" implies a response from an immune system that has been pre-programmed and pre-armed with circulating antibodies that are on the lookout for certain antigens (food sensitivities) that trigger subsequent immune system events. Intolerances, on the other hand (again, IMO), connote the inability to properly digest certain foods, which leads to symptoms (of poor digestion) without invoking an immune system response. They are distinctly different events, IMO.
Referring back to my examples in my previous post, note that lactose intolerance does not involve the immune system, that's why it's an intolerance. However, casein sensitivity does indeed evoke an immune system response (numerous responses, in fact). This is more than just intolerance, because it can be precisely measured. In fact, it can be measured in more than one way (by measuring various immune system responses).
On the other hand, how would one measure an intolerance (such as lactose intolerance)? While the clinical symptoms can certainly be detected, by indirect means (breath analysis), no changes in any immune system parameters can be detected. That constitutes the defining difference between these two phenomena, IMO.
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.
- fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
I can live with that definition! Thanks! And Joe I live in Northern Ireland - hence the spelling variances!tex wrote:
The term "sensitivity" implies a response from an immune system that has been pre-programmed and pre-armed with circulating antibodies that are on the lookout for certain antigens (food sensitivities) that trigger subsequent immune system events. Intolerances, on the other hand (again, IMO), connote the inability to properly digest certain foods, which leads to symptoms (of poor digestion) without invoking an immune system response. They are distinctly different events, IMO.
Tex
Anne
- fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
I am on 9mg budesonide. In addition I have to take Calcium and Alendronic acid to protect my bones from the effect of the steroids! And now because my blood pressure has gone up due to the steroids, they are talking hypertension meds. I basically aim to go med free if I can!Joefnh wrote:
As far as the treatments, I'm not totally sure what your referring to but if its going gluten free or MC / Crohns treatments, the meds are not too bad.
Anne
- fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi everyone,
I survived the endoscopy - OMG what a horrible (and extremely windy :oops:5 minutes!!!! At least it is pretty quick and the nurses were very good at keeping me calm(ish)!!! I am just glad it is over and I am now embarking on my GF journey.
I have just cleared out my two freezers, cleaned them out thoroughly and am planning a lot of cooking over the weekend to re-stock. I have bought a new toaster and am totally committed to this. I have to wait to hear if I have Coeliac or not but my doctors have agreed I go GF anyway! I will have an appointment with a dietician - I am compiling a list of questions as I go - e.g. is maltodextrin GF or not? malt implies it isn't but dextrin is a sugar? That kind of question.
When I was out shopping - which took me a long time as I was trying to find GF stock cubes and the like, I was reading every label! It is a lot to learn in terms of what brands are OK and which are not! I know you have all been through it - but why do manufacturers make the print SO SMALL!!! It should be illegal!! Even with my glasses I struggle!!
Anyway, here is hoping that this works and I get properly well!
Anne
I survived the endoscopy - OMG what a horrible (and extremely windy :oops:5 minutes!!!! At least it is pretty quick and the nurses were very good at keeping me calm(ish)!!! I am just glad it is over and I am now embarking on my GF journey.
I have just cleared out my two freezers, cleaned them out thoroughly and am planning a lot of cooking over the weekend to re-stock. I have bought a new toaster and am totally committed to this. I have to wait to hear if I have Coeliac or not but my doctors have agreed I go GF anyway! I will have an appointment with a dietician - I am compiling a list of questions as I go - e.g. is maltodextrin GF or not? malt implies it isn't but dextrin is a sugar? That kind of question.
When I was out shopping - which took me a long time as I was trying to find GF stock cubes and the like, I was reading every label! It is a lot to learn in terms of what brands are OK and which are not! I know you have all been through it - but why do manufacturers make the print SO SMALL!!! It should be illegal!! Even with my glasses I struggle!!
Anyway, here is hoping that this works and I get properly well!
Anne
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Anne
glad the endoscopy went ok -
If you visit a UK/Ireland based celiac web site then they will have lists of safe products/manufacturers and where to purchase them.
Also - if there are any websites that sell GF products online, then a way to save time is to buy them online and get them delivered.
In Aus, all the GF products are in a seperate section of the supermarket so it makes it pretty easy. anything i cant buy from the supermarket or the two health food stores in my town, i buy online.
other places that gluten 'hides' is in things like; dried or refrigerated Herbs/Spices, lipsticks/lip balms, medications (both over the counter and prescription), if you do cake cooking check sugars/icing sugars, and avoid meat products that have been seasoned, and double check any cold cut sliced meats.
a few weeks of effort to totally remove gluten will be worth it!
glad the endoscopy went ok -
If you visit a UK/Ireland based celiac web site then they will have lists of safe products/manufacturers and where to purchase them.
Also - if there are any websites that sell GF products online, then a way to save time is to buy them online and get them delivered.
In Aus, all the GF products are in a seperate section of the supermarket so it makes it pretty easy. anything i cant buy from the supermarket or the two health food stores in my town, i buy online.
other places that gluten 'hides' is in things like; dried or refrigerated Herbs/Spices, lipsticks/lip balms, medications (both over the counter and prescription), if you do cake cooking check sugars/icing sugars, and avoid meat products that have been seasoned, and double check any cold cut sliced meats.
a few weeks of effort to totally remove gluten will be worth it!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
- fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Thanks Gabe,
I am getting my head around this and I appreciate it is going to take a bit of time but I intend being really 100% on this - I tend not to to things by halves!!! - and I have already been onto Coeliac UK who provide loads of info. Also our major supermarket chains publish lists of GF foods which is ridiculously long but will prove useful no doubt. I guess it is a bit of a lifestyle change but if it means I am well and don't have the year I have had this year ever again then it will be so worth it!
My Mum, Dad and I booked to go to a play on Boxing Day - its a comedy at the Lyric Theatre in Belfast called "Forget the Turkey Let's go to Phuket for Christmas!" or something like that. It starts off with a man on a trolley in A&E - given I have done that 4 times this year it seems apt!!!
Anne
I am getting my head around this and I appreciate it is going to take a bit of time but I intend being really 100% on this - I tend not to to things by halves!!! - and I have already been onto Coeliac UK who provide loads of info. Also our major supermarket chains publish lists of GF foods which is ridiculously long but will prove useful no doubt. I guess it is a bit of a lifestyle change but if it means I am well and don't have the year I have had this year ever again then it will be so worth it!
My Mum, Dad and I booked to go to a play on Boxing Day - its a comedy at the Lyric Theatre in Belfast called "Forget the Turkey Let's go to Phuket for Christmas!" or something like that. It starts off with a man on a trolley in A&E - given I have done that 4 times this year it seems apt!!!
Anne
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
well you have the right attitude! that is a fantastic start.
once you find the products you like, (and trust) then you tend to stick to them..... it is worth it to spend 50 cents, a dollar more to get a reliable trusted GF manufactured product. i only buy the brands that have dedicated GF factories and have never had any recall issues.
and having family support is awesome, the name of the play sounds great! cant wait to hear your review on 27 Dec.
take care
once you find the products you like, (and trust) then you tend to stick to them..... it is worth it to spend 50 cents, a dollar more to get a reliable trusted GF manufactured product. i only buy the brands that have dedicated GF factories and have never had any recall issues.
and having family support is awesome, the name of the play sounds great! cant wait to hear your review on 27 Dec.
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
- fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Day 2 of going GF! So far so good although I was out delivering various messages between about 11am and 2pm and it dawned on me, as I was getting hungry, that going to the drive in McDonald's was no longer an option!!! But I got home, put some GF bread in the toaster and had beans on toast!!!
The placebo effect of finally taking control is great - I feel energized and determined! Obviously the real impact of my diet change will take time to show itself and I really hope it makes the difference. I want to come off as much medication as I can! I know I won't ever be drug free due to very high cholesterol (inherited type - I had a female cousin drop dead at 41 - that's how bad it is in my family!) but taking a statin and aspirin daily is not so bad! It's just when you add in all the other stuff...
On a positive and factual note only 2 Normans today! I know a lot of you are probably really envious but now I want just one a day!!! But I do know and thank God every day that I am so much better than when I joined the Forum!! I really hope that the diet works for me not least so that I can begin to reduce the budesonide. At least I am lucky to have a doctor and consultant who are prepared to go the long haul!! But the deal is I wait for them to decide dosages etc. That said it is really apparent that Asacol was causing persistence of my D despite it being the drug of choice for MC! Clearly not for me!
Anyway, I will keep you advised as to how I get on with going GF! No more McDonald's! I am joking as I didn't have them that often but never again is sad!!! LOL!
Anne
The placebo effect of finally taking control is great - I feel energized and determined! Obviously the real impact of my diet change will take time to show itself and I really hope it makes the difference. I want to come off as much medication as I can! I know I won't ever be drug free due to very high cholesterol (inherited type - I had a female cousin drop dead at 41 - that's how bad it is in my family!) but taking a statin and aspirin daily is not so bad! It's just when you add in all the other stuff...
On a positive and factual note only 2 Normans today! I know a lot of you are probably really envious but now I want just one a day!!! But I do know and thank God every day that I am so much better than when I joined the Forum!! I really hope that the diet works for me not least so that I can begin to reduce the budesonide. At least I am lucky to have a doctor and consultant who are prepared to go the long haul!! But the deal is I wait for them to decide dosages etc. That said it is really apparent that Asacol was causing persistence of my D despite it being the drug of choice for MC! Clearly not for me!
Anyway, I will keep you advised as to how I get on with going GF! No more McDonald's! I am joking as I didn't have them that often but never again is sad!!! LOL!
Anne
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Anne
as i am GF/DF/SF there is no 'safe' takeaway or readily available snack that i can buy.
If i am going out for a couple of hours i take a gabe safe snack with me, if i end up being out longer than expected then I have something with me.
I use a Rice protein powder mixed with rice milk etc.
MC Management success is linked to being organised, i.e
Food; making sure you have ingredients for meals, carrying snacks with you, I have supplies in my draw at work
safety net; spare undies and wipes for unexpected mishaps,
extra supplies; never let the toilet paper get below 8 rolls in your cupboard!!!
meal planning; for busy days at work i make sure i have extra protein shakes so if i have to eat on the run I can.
toilet stop planning; at work i used to block my diary for 15 mins before long meetings so i could go the toilet, if going out for the day i use the net to confirm where toilets are AND again will always arrive for appointments early so i have enough time to go to the toilet before hand.
as i am GF/DF/SF there is no 'safe' takeaway or readily available snack that i can buy.
If i am going out for a couple of hours i take a gabe safe snack with me, if i end up being out longer than expected then I have something with me.
I use a Rice protein powder mixed with rice milk etc.
MC Management success is linked to being organised, i.e
Food; making sure you have ingredients for meals, carrying snacks with you, I have supplies in my draw at work
safety net; spare undies and wipes for unexpected mishaps,
extra supplies; never let the toilet paper get below 8 rolls in your cupboard!!!
meal planning; for busy days at work i make sure i have extra protein shakes so if i have to eat on the run I can.
toilet stop planning; at work i used to block my diary for 15 mins before long meetings so i could go the toilet, if going out for the day i use the net to confirm where toilets are AND again will always arrive for appointments early so i have enough time to go to the toilet before hand.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
- fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
I always buy 16 at a time and never let them get less than 8! In fact they take up more room than my towels!!!!JFR wrote:Ha! I shouldn't be surprised to find that my weird habits are mirrored here. I buy my toilet paper by the case (12 rolls at a time).Gabes-Apg wrote: never let the toilet paper get below 8 rolls in your cupboard!!!
Jean
!
Anne