I wanted to respond to Marcia in that I too have nightmares about ingesting gluten. I dream I somehow unwittingly eat it and am then terrified of what the consequence will be. I have been strictly gluten free for over a year and am doing well. I don't know if I will ever come to the point of being confident enough to do a "gluten challenge". And if I did what would that look like? Eating french fries that have been fried with other gluten containing foods or eating a piece of Italian Wedding Cake? At this point, both make me shudder at the consequences.
Gigi
Thinking about going back on the gluten...?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm about two and a half years post diagnosis. Entocort allowed me time to learn what it REALLY means to be gluten-free. I had a fairly long spell with no setbacks, but on a few occasions, unbeknown to me, my food was a bit contaminated with gluten. I then had watery diarrhea and immediately reverted back to eating only four foods. I am unable to tolerate gluten at all. I have been tested by every method, including genetic testing for Celiac Disease and my chance of becoming Celiac is pretty much zero. Yet, gluten is terrible for me. As I have mentioned several times, eliminating gluten caused my fibromyalgia-type body pain to go away too. When I ate the tainted food, I had both diarrhea AND body pain. The body pain essentially went away at about the same time the D stopped.
From what I've heard on this board, Entocort does not work as well the second time around. Putting yourself in the position of possibly needing Entocort is a big risk.
On the other had, I know how awkward it is to be gluten free. Socially, it's a pain in the butt (a social term
) I recently joined a Celiac group at work. I can't tell you how comforting it was to share how socially awkward I feel and have everyone in the room nod their heads with understanding. They also shared information on how they eat in public. Most of them bring their own food.
At least one of the people in the Celiac group is an asymptomatic Celiac. He eats "gluten-free" in places the rest of us would NEVER risk! Sadly, he may be ripping his intestines to shreds.
I am doing ok as long as I am not exposed to ANY gluten.
Now MY wishful thinking. I'm hoping to one day eat eggs again. Not a plate of eggs, just as a tertiary ingredient to make my life a little easier. I don't feel that I'm ready to try it yet and I may never. I'm not sure. But, I am sure that I will never eat gluten again. I will continue to learn how to work around it. I plan to get a small camper so I can safely feed myself when I travel.
From what I've heard on this board, Entocort does not work as well the second time around. Putting yourself in the position of possibly needing Entocort is a big risk.
On the other had, I know how awkward it is to be gluten free. Socially, it's a pain in the butt (a social term
) I recently joined a Celiac group at work. I can't tell you how comforting it was to share how socially awkward I feel and have everyone in the room nod their heads with understanding. They also shared information on how they eat in public. Most of them bring their own food.At least one of the people in the Celiac group is an asymptomatic Celiac. He eats "gluten-free" in places the rest of us would NEVER risk! Sadly, he may be ripping his intestines to shreds.
I am doing ok as long as I am not exposed to ANY gluten.
Now MY wishful thinking. I'm hoping to one day eat eggs again. Not a plate of eggs, just as a tertiary ingredient to make my life a little easier. I don't feel that I'm ready to try it yet and I may never. I'm not sure. But, I am sure that I will never eat gluten again. I will continue to learn how to work around it. I plan to get a small camper so I can safely feed myself when I travel.
Well...I ate a bread roll every day for 6 days running...with no ill effect whatsoever.
3 weeks have now gone by and still no problems...I am fine, it seemed to make no difference.
I appear to conform to the "benign and self-limiting" description of the condition. I regard myself as completely recovered with no symptoms.
The final symptom to disappear was fear. Fear of eating gluten by mistake. Although I shall continue with a gluten-free diet, I will no longer fear the accidental ingestion of gluten as I used to.
Although I had a diagnosis of my MC by colonoscopy and biopsies (in 2011) it would appear that there may be many reasons for this condition. My guess is that it might occur as a consequence of other conditions rather than being the primary condition. Perhaps my experience of MC was relatively simple and caused (as my GI doctor suggested) by an abnormal reaction to a case of gastric upset (food poisoning?) and not by some more obscure underlying condition as may be the case amongst many of this forum's contributors.
It has been a horrible experience...humiliating, undermining, depressing...but I think it is gone now. I hope newly diagnosed forum members do not despair (as I did for a while) of finding a solution or even an end to the condition.
The very best of luck to you all...Nick
3 weeks have now gone by and still no problems...I am fine, it seemed to make no difference.
I appear to conform to the "benign and self-limiting" description of the condition. I regard myself as completely recovered with no symptoms.
The final symptom to disappear was fear. Fear of eating gluten by mistake. Although I shall continue with a gluten-free diet, I will no longer fear the accidental ingestion of gluten as I used to.
Although I had a diagnosis of my MC by colonoscopy and biopsies (in 2011) it would appear that there may be many reasons for this condition. My guess is that it might occur as a consequence of other conditions rather than being the primary condition. Perhaps my experience of MC was relatively simple and caused (as my GI doctor suggested) by an abnormal reaction to a case of gastric upset (food poisoning?) and not by some more obscure underlying condition as may be the case amongst many of this forum's contributors.
It has been a horrible experience...humiliating, undermining, depressing...but I think it is gone now. I hope newly diagnosed forum members do not despair (as I did for a while) of finding a solution or even an end to the condition.
The very best of luck to you all...Nick
nick
Nick, I'm so happy to hear of your success! For many of us, gluten exposure is an awful thing. I struggle to maintain a state of "ok" (not great, just ok) and exposure to foods on my list, especially gluten, interferes with my "ok" state. I will stay home from work today with D and gut pain. For many of us, it is easier to do the hard work of maintaining a restricted diet than to suffer the dehydration and exhaustion caused by MC flares. And even with our best effort, things are not always perfect.
Hello Nick...........
Glad you are happy now and feeling better and optimistic about your food.
For me, with well documented allergy history since childhood, there is no doubt my food intake will of necessity be somewhat restricted. I'm happy to be able to control my diet and avoid D and abdominal pain.
Glad you are happy now and feeling better and optimistic about your food.
For me, with well documented allergy history since childhood, there is no doubt my food intake will of necessity be somewhat restricted. I'm happy to be able to control my diet and avoid D and abdominal pain.
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Nick,
I was wondering, have you had genetic testing for genes related to gluten sensitivity? I don't have much hope for myself to be able to ever eat gluten again because I carry two copies of the gene which predispose me to gluten sensitivity. Although, I will say that just eliminating gluten is also not the cure that I had hoped it would be.
I was wondering, have you had genetic testing for genes related to gluten sensitivity? I don't have much hope for myself to be able to ever eat gluten again because I carry two copies of the gene which predispose me to gluten sensitivity. Although, I will say that just eliminating gluten is also not the cure that I had hoped it would be.
LC diagnosed July 2014
Hi Gigi...thanks for your post about genetic testing. It is something that has interested me for some time...
Celiac, as an autoimmune disease, is often associated with type 1 diabetes. My wife is type 1 diabetic. When our daughter became diabetic it was thought to be extremely bad luck...a genetic glitch as diabetes does not normally pass to the next generation. Then our son became diabetic too. At this point it was thought more than bad luck and he went for genetic testing to see if there was anything unusual going on...nothing came of this. At that time, I had not been diagnosed with MC so no-one thought that I might have had a part to play.
So, the question in my mind is this...have my wife and I created the conditions, through a combination of our autoimmune disorders, that our children were bound to inherit?
I am sure you know this but some people don't...type 1 diabetes is not acquired as a result of overeating or lifestyle choices...it is a genetic disorder. My wife and children are slim and otherwise healthy.
My mother had a long history of "IBS"...she was very frail at the end of her life...who knows what the "IBS" actually was.
But in the end, what would genetic testing achieve? We cannot change our genes but it would satisfy a curiosity.
I see that you have been diagnosed relatively recently. I thought that eliminating gluten would be the cure too...and was mistaken! I am a terrible skeptic (years of having to put up with crank cures for my wife's diabetes have taught me that!) and I have always wondered whether gluten really was the culprit in my case. But, despite the setbacks, I have stuck with the GF diet and now I really like it and will stay with it whether it is helping or not. I eat a great diet...there is nothing like diabetes for making you eat healthily! And it can certainly do no harm. Does that make any sense?
All the best...Nick
Celiac, as an autoimmune disease, is often associated with type 1 diabetes. My wife is type 1 diabetic. When our daughter became diabetic it was thought to be extremely bad luck...a genetic glitch as diabetes does not normally pass to the next generation. Then our son became diabetic too. At this point it was thought more than bad luck and he went for genetic testing to see if there was anything unusual going on...nothing came of this. At that time, I had not been diagnosed with MC so no-one thought that I might have had a part to play.
So, the question in my mind is this...have my wife and I created the conditions, through a combination of our autoimmune disorders, that our children were bound to inherit?
I am sure you know this but some people don't...type 1 diabetes is not acquired as a result of overeating or lifestyle choices...it is a genetic disorder. My wife and children are slim and otherwise healthy.
My mother had a long history of "IBS"...she was very frail at the end of her life...who knows what the "IBS" actually was.
But in the end, what would genetic testing achieve? We cannot change our genes but it would satisfy a curiosity.
I see that you have been diagnosed relatively recently. I thought that eliminating gluten would be the cure too...and was mistaken! I am a terrible skeptic (years of having to put up with crank cures for my wife's diabetes have taught me that!) and I have always wondered whether gluten really was the culprit in my case. But, despite the setbacks, I have stuck with the GF diet and now I really like it and will stay with it whether it is helping or not. I eat a great diet...there is nothing like diabetes for making you eat healthily! And it can certainly do no harm. Does that make any sense?
All the best...Nick
nick
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Gabes-Apg
- Emperor Penguin
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we can change our genes....what would genetic testing achieve? We cannot change our genes but it would satisfy a curiosity.
There are LOADs of scientific articles supporting this, a pretty good book is The biology of Belief by Bruce H Lipton PhD
some other articles
http://articles.mercola.com/sites/artic ... inism.aspx
http://www.mindbodygreen.com/0-13477/ho ... genes.htmlOne way that we can influence genes without changing their basic structure is through the foods we eat. It may be that our genes load the gun, but our lifestyle pulls the trigger. The impact of nutrition on our genes is often called nutrigenomics.
http://www.dailymail.co.uk/health/artic ... -them.html
Even aside from the science and technicalities of epigenics, doing genetic testing and knowing the possible weaknesses of our bodies, and take preventative approaches could protect someone from chronic illness later in life.
The DNA genetic testing I did and subsequent reports (total cost $240 AUD) was like getting an operation manual for the weak spots of my body. it explained alot of health issues that other testing protocols could not identify. Changing my supplement protocol based on these results has helped big time. I only wished I had that info when I was 20..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Betsbrooks
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Gabes, can you please share what genetic testing you did? I used my raw data from the $99 US ancestry.com test and sent it through one of the free services online, but I didn't get too much info that I could understand and act on, so I wondered if there is a better test, or if you just did a lot of research!
Dx CC March 2015
Hi Gabes...thanks. The "Can we change our genes?" question is a bit of a minefield!
Firstly...I don't think we can change our genes as such...but we can alter the effect that they have on us, and on future generations, by our lifestyle. I am sure you would agree?
Check out the BBC radio progamme "The first 1000 days". It shows how our grandmother's life circumstances have a profound effect on the deck of cards that we are handed. I hope you can download it from where you are...there are 3 episodes and really worth listening to.
I worry a lot that some people with genetically inherited disorders (here I am talking about type 1 diabetes) can be made to feel, often by well meaning people, that they can "cure" themselves by diet. I have seen this a lot. This creates a sense of failure and guilt...failure because it doesn't work (for type 1 diabetes) and guilt because they feel that they have brought it upon themselves by their lifestyle choices.
Genetically inherited diseases are complex. I am no scientist and understand little of the processes behind them. But I have this problem...
I know that my grandson is likely to have a gene that predisposes him to diabetes, I don't need genetic testing to tell me that. What can he do to avoid that gene triggering the disease in him? It is very tempting to tell him to keep away from sugar...but sugar does not cause diabetes! It is an autoimmune disease that is most probably triggered by any one of a number of otherwise benign viruses that simply cannot be avoided...sugar does not come into it.
I feel that the best thing to do is to make sure that he has a happy life and the tools he needs to overcome obstacles...whatever they might be.
Firstly...I don't think we can change our genes as such...but we can alter the effect that they have on us, and on future generations, by our lifestyle. I am sure you would agree?
Check out the BBC radio progamme "The first 1000 days". It shows how our grandmother's life circumstances have a profound effect on the deck of cards that we are handed. I hope you can download it from where you are...there are 3 episodes and really worth listening to.
I worry a lot that some people with genetically inherited disorders (here I am talking about type 1 diabetes) can be made to feel, often by well meaning people, that they can "cure" themselves by diet. I have seen this a lot. This creates a sense of failure and guilt...failure because it doesn't work (for type 1 diabetes) and guilt because they feel that they have brought it upon themselves by their lifestyle choices.
Genetically inherited diseases are complex. I am no scientist and understand little of the processes behind them. But I have this problem...
I know that my grandson is likely to have a gene that predisposes him to diabetes, I don't need genetic testing to tell me that. What can he do to avoid that gene triggering the disease in him? It is very tempting to tell him to keep away from sugar...but sugar does not cause diabetes! It is an autoimmune disease that is most probably triggered by any one of a number of otherwise benign viruses that simply cannot be avoided...sugar does not come into it.
I feel that the best thing to do is to make sure that he has a happy life and the tools he needs to overcome obstacles...whatever they might be.
nick
Interesting Nick about type 1 diabetes being caused by genes and a virus. Has that been proven? I wrote to my mom yesterday who was looking for information to help a friend's son that developed type 1 diabetes later in life. He's in his 40s, which I guess can happen but have seen type 1 is typically a juvenile disease. I found some diet information, with testimonials of avoiding grains helping greatly with the condition. The articles are mainly testimonials, but this is what I forwarded ~
"Type 1 diabetes . . . cured?"
http://www.wheatbellyblog.com/2013/04/t ... tes-cured/
&
"Wheat . . . and type 1 diabetes"
http://www.wheatbellyblog.com/2012/01/w ... -diabetes/
&
"How did this man get to live with type 1 diabetes for more than 80 years?"
http://www.drbriffa.com/2011/05/31/how- ... -80-years/
It looked like diet could help, at least some, with type 1 diabetes. As terrible as the disease is I'm at least hoping that is the case.
"Type 1 diabetes . . . cured?"
http://www.wheatbellyblog.com/2013/04/t ... tes-cured/
&
"Wheat . . . and type 1 diabetes"
http://www.wheatbellyblog.com/2012/01/w ... -diabetes/
&
"How did this man get to live with type 1 diabetes for more than 80 years?"
http://www.drbriffa.com/2011/05/31/how- ... -80-years/
It looked like diet could help, at least some, with type 1 diabetes. As terrible as the disease is I'm at least hoping that is the case.
Hi...since my wife has been diabetic (more than 30 years) I have eaten what she eats...no sugar limited carbs...since I have been gluten free (29 months) she has also been totally gluten-free out of mutual solidarity. It has made no difference whatsoever to her insulin intake.
Read these claims with caution and never risk anyone's health by suggesting that a diabetic stops taking insulin. Most diabetics will go through a "honeymoon period" where they are able to stop insulin for a while. It is a normal feature of the condition but only a temporary one.
My point here is that autoimmune diseases (like MC perhaps) are often caused by something entirely different than the symptoms that they eventually create.
You cannot pinpoint the cause of the car-crash by looking at the X-ray of the broken leg! Does that analogy work?
Read these claims with caution and never risk anyone's health by suggesting that a diabetic stops taking insulin. Most diabetics will go through a "honeymoon period" where they are able to stop insulin for a while. It is a normal feature of the condition but only a temporary one.
My point here is that autoimmune diseases (like MC perhaps) are often caused by something entirely different than the symptoms that they eventually create.
You cannot pinpoint the cause of the car-crash by looking at the X-ray of the broken leg! Does that analogy work?
nick
Sorry to hear that the wheat free diet didn't help your wife's diabetes. That is what I came across with dietary ideas for the disease, avoiding wheat and grains helped some but not all, with both type 1 and 2. I guess the first article posted mentions that too.
It will be interesting to see if diet changes helps my mom's friends son. I was told he had become a vegan, was eating that way when he developed type 1 diabetes surprisingly, so diet change is something he is used to doing. My fingers are crossed that if he tries the grain free diet does help with avoiding primary and secondary outcomes.
It was surprising for me to hear too about his development as last I saw him was maybe 10 years ago. He was one of the fittest persons I've seen at the time, a gym rat that enjoyed showing off his muscles kayaking on a nearby lake with his shirt off.
It will be interesting to see if diet changes helps my mom's friends son. I was told he had become a vegan, was eating that way when he developed type 1 diabetes surprisingly, so diet change is something he is used to doing. My fingers are crossed that if he tries the grain free diet does help with avoiding primary and secondary outcomes.
It was surprising for me to hear too about his development as last I saw him was maybe 10 years ago. He was one of the fittest persons I've seen at the time, a gym rat that enjoyed showing off his muscles kayaking on a nearby lake with his shirt off.
Not eating wheat, oats and grains has been very helpful for me. I simply cut these items out of my diet because I find the gluten free supermarket products have proved unreliable causing me MC symptoms within hours.
I loved bread, cake, chocolate etc, its now in my past, no regrets, I want to feel good every day and this seems to be the only way forward for me.
I loved bread, cake, chocolate etc, its now in my past, no regrets, I want to feel good every day and this seems to be the only way forward for me.
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15