I hate being gluten free! Not so much the diet...I don't care whether I eat gluten or not...it is having to explain it to others...taking my own food when I go to visit friends and eating next to nothing when I eat out at restaurants. Because I am not celiac I feel I have no valid excuse and I am therefore regarded as being something of a nuisance. You all know what I mean!
It took me two and a half years of very strict gluten-free for me to start to have a "normal" bowel function. But, here's the thing. When my "troubles" began, I was diagnosed with microscopic colitis (colonoscopy) but cleared of celiac. The doctor told me that the D would (probably) clear up of its own accord in 18 months or so. It didn't. I went gluten-free but that was far from being the "magic bullet" as I was always getting relapses, no matter how strict I was. I tried to identify other food intolerances without success. 18 months ago I started keeping a very thorough daily record of my bowel movements to try to identify a pattern to the relapses...without success. The ONLY thing I have excluded for the last 18 months is gluten. I am now six months with NO flare-ups.
Now here is the question...was the doctor right in the first place...has it cleared up on its own and just taken a little longer than he predicted?
Or perhaps I am celiac and the test was wrong?
Next week I plan to start eating gluten again...if I get a flare-up then I can take my 18 months of daily records to my doctor and suggest a direct correlation between gluten and a flare-up. I would then ask for another celiac test following 6 weeks of eating gluten. If this comes back positive I will have a "valid" reason for not eating gluten in the eyes of others.
Or perhaps nothing will happen...I will be able to resume a "normal" diet.
What do you think...is this a good idea?
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
Hi Nick,
Even if you tested negative for Celiac, you may have what is called non-celiac-gluten-sensitivity (NCGS). This sensitivity has proven almost impossble to diagnose. Many of us have who tested negative for Celiac, have become so much better by avoiding gluten.
If you reintroduce gluten to your diet, you may risk that it takes a long time to recover. Maybe you are intolerant to other ingredients, such as dairy, eggs and soy?
We are all different. For me it took little more than 2 years before the D disappeared.
I'm convinced that the new diet I have been following for 2 years, extra B-vitamins (the active form of B12, B9 and B6), high doses of vitamin D (10.000 i.u.) and magnesium finally helped me.
I had some aged cheese during the weekend. The first meal went okay, but the second time I tried it, I was sent to the toilet. Fortunately, the D did not persist.
So, I know now that I must not wake up a sleeping bear
Lilia
Even if you tested negative for Celiac, you may have what is called non-celiac-gluten-sensitivity (NCGS). This sensitivity has proven almost impossble to diagnose. Many of us have who tested negative for Celiac, have become so much better by avoiding gluten.
If you reintroduce gluten to your diet, you may risk that it takes a long time to recover. Maybe you are intolerant to other ingredients, such as dairy, eggs and soy?
We are all different. For me it took little more than 2 years before the D disappeared.
I'm convinced that the new diet I have been following for 2 years, extra B-vitamins (the active form of B12, B9 and B6), high doses of vitamin D (10.000 i.u.) and magnesium finally helped me.
I had some aged cheese during the weekend. The first meal went okay, but the second time I tried it, I was sent to the toilet. Fortunately, the D did not persist.
So, I know now that I must not wake up a sleeping bear
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi Lilia...many thanks.
I don't have any problems with other foods though. I can eat any amount of the foods normally considered to be triggers and, for the last 6 months, I have been fine. I really don't want to keep gluten-free if it isn't necessary.
If it IS necessary, I will soon find out! If I test negative for celiac I will know that it must be NCGS or something similar and give up gluten once more. Maybe there is no sleeping bear (in my case) and I am tiptoeing around for no good reason...I want to find out!
Good luck!
I don't have any problems with other foods though. I can eat any amount of the foods normally considered to be triggers and, for the last 6 months, I have been fine. I really don't want to keep gluten-free if it isn't necessary.
If it IS necessary, I will soon find out! If I test negative for celiac I will know that it must be NCGS or something similar and give up gluten once more. Maybe there is no sleeping bear (in my case) and I am tiptoeing around for no good reason...I want to find out!
Good luck!
nick
Nick,
Trust me, you're not the first person to resent being on a restricted diet, and you certainly won't be the last. Not a single member here enjoys being on a restricted diet, but we all do what we have to do to get our health back. If you value social "normalcy" above your health, then there is only one clear course of action — eschew the diet and see what happens. About 6 to 8 months from now (or sooner, if you relapse sooner) please let us know how well the gluten challenge is working.
Good luck. Who knows? Sometimes miracles happen, and maybe you're one of the lucky few.
Tex
Trust me, you're not the first person to resent being on a restricted diet, and you certainly won't be the last. Not a single member here enjoys being on a restricted diet, but we all do what we have to do to get our health back. If you value social "normalcy" above your health, then there is only one clear course of action — eschew the diet and see what happens. About 6 to 8 months from now (or sooner, if you relapse sooner) please let us know how well the gluten challenge is working.
Good luck. Who knows? Sometimes miracles happen, and maybe you're one of the lucky few.
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 Tex...thanks for your reply.
I don't value "normalcy" above my health! Far from it, but I want to be clear about what is, and what is not, a threat to my health.
Do you know anyone who has gone down this route and found the answer that I am seeking? I am guessing that this forum's members are a self-selecting group of people who continue to have problems. Those who no longer have problems are unlikely to continue contributing.
If I get an answer...either way...I will try to remember to let you know.
I don't value "normalcy" above my health! Far from it, but I want to be clear about what is, and what is not, a threat to my health.
Do you know anyone who has gone down this route and found the answer that I am seeking? I am guessing that this forum's members are a self-selecting group of people who continue to have problems. Those who no longer have problems are unlikely to continue contributing.
If I get an answer...either way...I will try to remember to let you know.
nick
Hi Nick,
Primarily we are a group of individuals who are willing to do whatever is necessary to get our life back. And yes, most members stop posting after they find their solutions. So most of the posters here are new members, still healing, or still trying to find their own path back to good health.
But of course there are always a few who are either unwilling to make such drastic diet changes, or who simply (despite their best efforts) are unable to remain committed to a restricted diet. Then there are others who, after they achieve remission, question whether they actually need to remain on the diet (because they are doing so well, that they don't see how they could possibly have a serious problem). Many of us here (including me) have wondered that at one time or another. For most of us, it doesn't take much more than an accidental gluten ingestion incident or two to remind us that the problem is real. For some others though, symptoms do not appear until after extensive damage has accrued to the gut, and that can take months, in some cases. And of course in those cases, recovery may take months also, after gluten has been removed from the diet again.
But as I said, it's not impossible for people to be able to tolerate foods, despite the fact that their immune system produces antibodies to those foods. I can tolerate casein without any digestive system symptoms. But I produce antibodies to casein, so I avoid it. Why? Because antibodies perpetuate an elevated inflammation level in the body, and that opens the door to the development of other AI diseases.
There are many celiacs who are asymptomatic, despite the fact that their immune system produces antibodies to gluten as long as it remains in their diet. So far though, I'm not aware of any members here who have MC, and who have been able to tolerate gluten in their diet without eventually suffering a relapse of symptoms. So that's why we are interested in your gluten challenge — you might be the first to be able to demonstrate that you are an exception to the rule. And every shared experience is a learning opportunity for all of us.
Tex
Primarily we are a group of individuals who are willing to do whatever is necessary to get our life back. And yes, most members stop posting after they find their solutions. So most of the posters here are new members, still healing, or still trying to find their own path back to good health.
But of course there are always a few who are either unwilling to make such drastic diet changes, or who simply (despite their best efforts) are unable to remain committed to a restricted diet. Then there are others who, after they achieve remission, question whether they actually need to remain on the diet (because they are doing so well, that they don't see how they could possibly have a serious problem). Many of us here (including me) have wondered that at one time or another. For most of us, it doesn't take much more than an accidental gluten ingestion incident or two to remind us that the problem is real. For some others though, symptoms do not appear until after extensive damage has accrued to the gut, and that can take months, in some cases. And of course in those cases, recovery may take months also, after gluten has been removed from the diet again.
But as I said, it's not impossible for people to be able to tolerate foods, despite the fact that their immune system produces antibodies to those foods. I can tolerate casein without any digestive system symptoms. But I produce antibodies to casein, so I avoid it. Why? Because antibodies perpetuate an elevated inflammation level in the body, and that opens the door to the development of other AI diseases.
There are many celiacs who are asymptomatic, despite the fact that their immune system produces antibodies to gluten as long as it remains in their diet. So far though, I'm not aware of any members here who have MC, and who have been able to tolerate gluten in their diet without eventually suffering a relapse of symptoms. So that's why we are interested in your gluten challenge — you might be the first to be able to demonstrate that you are an exception to the rule. And every shared experience is a learning opportunity for all of us.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
As we heal, then the inflamed reactions can be far reduced/not happen, but only til such time when if inflammation levels increase, there will be heightened reactions, ie D.
Gluten is a high inflammation food for everybody... For those of us with an IBD, the reactions are quicker and far worse than for others.
I can understand wanting to do the 'test'. Go for it.
My warning is, as we age our ability to heal from ongoing inflammation gets harder, takes longer.
Starting gluten again, and eating it till such time as bad symptoms start, could take you 12 months or more to recover. Do you want to take that risk?
During my near 6 years here, based on my recollections there is only 1or 2 people that went back to eating gluten regularly. So that is a stat of about 0.3% what was the long term outcome?. Not sure
Gluten is a high inflammation food for everybody... For those of us with an IBD, the reactions are quicker and far worse than for others.
I can understand wanting to do the 'test'. Go for it.
My warning is, as we age our ability to heal from ongoing inflammation gets harder, takes longer.
Starting gluten again, and eating it till such time as bad symptoms start, could take you 12 months or more to recover. Do you want to take that risk?
During my near 6 years here, based on my recollections there is only 1or 2 people that went back to eating gluten regularly. So that is a stat of about 0.3% what was the long term outcome?. Not sure
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Good luck in whatever you decide to do. All I know is that I have had nightmares that I accidentally ingested gluten and woke up in a cold sweat. The D is too fresh in my mind even two years later. I know that I will never eat it again.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
I also wanted to wish you luck with whatever you decide to do. My only intolerance is gluten. Since my diagnosis in 2003, I have found out that I can have gluten about once a week or once every two weeks without having D. However, I have noticed other symptoms will show up, mainly joint pain and some fatigue. It took me along time to wrap my head around that every time I ingest gluten, that is creating a source of inflammation in my body.
I feel so much better when I am gluten free.
I feel so much better when I am gluten free.
Brenda
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Hi Nick,
It also took me 2-1/2 years (maybe a bit longer) to finally have a normal BM. My intolerances are gluten and dairy. I have cheated a couple of times on gluten, but quickly backed off on that idea as I know the antibodies would continue to build up, and then I would be back in a flare.
Maybe you aren't gluten sensitive? I do wish you luck with this choice.
Paula
It also took me 2-1/2 years (maybe a bit longer) to finally have a normal BM. My intolerances are gluten and dairy. I have cheated a couple of times on gluten, but quickly backed off on that idea as I know the antibodies would continue to build up, and then I would be back in a flare.
Maybe you aren't gluten sensitive? I do wish you luck with this choice.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Hello Nick.......
You shouldn't be sensitive about what others think. Restaurants are becoming more and more gluten free and food allergy aware and friendly. I live in a small town and about seventy percent of our restaurants provide good food for coeliacs, and others who can't eat everything. It's a limited choice but better than how it used to be.
I haven't been officially diagnosed as gluten intolerant or having MC. When my doctor explained how I needed to eat gluten products in order to have the testing and a diagnosis, I simply refused and his reply was if you want the diagnosis you have to do the test. I'm not a self harmer and couldn't consent to such a test. It's not rocket science - when I eat gluten I become wracked with abdominal pain followed by D. I don't want to encourage an anaphylactic shock episode.
I had a colonoscopy last year, the preparation was rough on my bowels and the result was NAD (no abnormality detected). The surgeon didn't do biopsy at the time so missed the MC. A few weeks back a GI specialist wanted me to have a CT scan but forgot to tell me about the prep and dye - even though I stressed my allergies in the consultation. I refused the CT scan, he wanted to exclude a stricture which I knew I didn't have. I haven't been back, may do in the future, but have only come out of my eight week flare after reading, researching and finding this forum and basically self medicating. My GP has never heard of MC. Doctors today, in the UK, simply won't give a diagnosis without tests and that is because coeliacs in this country can get prescriptions for gluten free foods weekly - pizza that costs the NHS £10.00 a time for a small one. The GP's are afraid of making diagnosis on clinical evidence only to avoid the nation claiming groceries from the health service. Nuts, isn't.
If I was in your boots, the gluten would be banished from my diet forever. The next time you start eating gluten you may find you have a more severe flare. Sadly, gluten free goods have additives, IMO, the additives might be the responsible for my problems but the medical fraternity don't test for these.
At this point in time I can't eat any form of wheat or gluten free products - I react to them all. Hard choices, hope you find your solution soon.
You shouldn't be sensitive about what others think. Restaurants are becoming more and more gluten free and food allergy aware and friendly. I live in a small town and about seventy percent of our restaurants provide good food for coeliacs, and others who can't eat everything. It's a limited choice but better than how it used to be.
I haven't been officially diagnosed as gluten intolerant or having MC. When my doctor explained how I needed to eat gluten products in order to have the testing and a diagnosis, I simply refused and his reply was if you want the diagnosis you have to do the test. I'm not a self harmer and couldn't consent to such a test. It's not rocket science - when I eat gluten I become wracked with abdominal pain followed by D. I don't want to encourage an anaphylactic shock episode.
I had a colonoscopy last year, the preparation was rough on my bowels and the result was NAD (no abnormality detected). The surgeon didn't do biopsy at the time so missed the MC. A few weeks back a GI specialist wanted me to have a CT scan but forgot to tell me about the prep and dye - even though I stressed my allergies in the consultation. I refused the CT scan, he wanted to exclude a stricture which I knew I didn't have. I haven't been back, may do in the future, but have only come out of my eight week flare after reading, researching and finding this forum and basically self medicating. My GP has never heard of MC. Doctors today, in the UK, simply won't give a diagnosis without tests and that is because coeliacs in this country can get prescriptions for gluten free foods weekly - pizza that costs the NHS £10.00 a time for a small one. The GP's are afraid of making diagnosis on clinical evidence only to avoid the nation claiming groceries from the health service. Nuts, isn't.
If I was in your boots, the gluten would be banished from my diet forever. The next time you start eating gluten you may find you have a more severe flare. Sadly, gluten free goods have additives, IMO, the additives might be the responsible for my problems but the medical fraternity don't test for these.
At this point in time I can't eat any form of wheat or gluten free products - I react to them all. Hard choices, hope you find your solution soon.
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
When I recover, I'll continue to come to this forum to keep abreast of everything related to GI tract to answer the questions I'm able to and join in the discussions. For me, this is the most important forum, it's for life.nick wrote:I'm guessing this forum's members are a self-selecting group of people who continue to have problems. Those who no longer have problems are unlikely to continue contributing.
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
GI Specialists have forgotten about the original premise of the Hippocratic oath, "First, do no harm". Their ridiculous insistence on patients doing a gluten challenge in order to get a diagnosis of celiac disease is archaic (that attitude predates Hippocrates, apparently), and the practice should be illegal. Instead of punishing the patient, they should get off their pompous arses and develop a simple diagnostic protocol for celiac disease that will consistently and reliably diagnose all celiacs, not just 5 % of them, as is the case with the current obsolete diagnostic methods.Jen wrote:When my doctor explained how I needed to eat gluten products in order to have the testing and a diagnosis, I simply refused and his reply was if you want the diagnosis you have to do the test.
But that's just my opinion. Of course it would probably be the opinion of GI specialists also, if they actually gave a rat's arse about their patients' welfare.
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.