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Potential Cure Getting Closer?


Ryan T

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Ryan T Rookie

Hello everyone. I live in Edmonton, Alberta, Canada and I saw this on the news recently. Went and got the article from Google. You may find it quite interesting. Just so you know U of A is the University of Alberta located in Edmonton.

Ryan

U of A study discovers potential treatment pill for celiac sufferers

Patricia Skagen-Emokpae, News Writer

Thanks to the work of Hoon Sunwoo, a researcher in the Faculty of Pharmacy and Pharmaceutical Sciences at the University of Alberta, those coping with celiac disease may soon find themselves able to live symptom-free.

The estimated one in 133 Canadians suffering from celiac disease, often referred to as


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skymgirl Newbie

I don't know...perhaps I'm in the minority here but I couldn't see myself jumping on board for this. I've worked in the pharma industry, and actually left it because I couldn't handle the deceptive practices they engage in. I would be very wary of accepting a solution that involves dependancy on the pharma industry. Also, there are insurance/financial consequences to this that could become a hindrance - imagine being declined medical insurance because of celiac disease and your dependence on this medication? There are celiacs who have a hard enough time having insurance cover tests, or nutritionists; I fear that being dependent on a medication could make the ramifications of a diagnoses even harder then they already are.

We have a cure - the gluten-free diet. Yes it's hard to have celiac disease, and I suppose being able to pop a pill to enjoy a pizza would be lovely every now and then, but the bigger picture of this seems to hold more potential harm then good. JMO, of course.

Lisa16 Collaborator

I wonder how this idea differs from the gluteneze (sp?) enzymes that you can buy in health food stores? It is the same theory. I have not found those pills to be useful at all-- I tried taking them after getting glutened and they really didn't help.

You are supposed to take them before you eat the gluten, but I don't trust them enough to even try that.

Anybody have experience with these?

ang1e0251 Contributor

I have been through the Lactaid thing with milk and didn't do well with it. I would be wary of any drug that would claim this. I think, for me, the diet works and I do not want to put food in my body that is a poison to me. Even though they claim their drug can work, I can't see it work. I don't want to wake up one day with cancer or something just as killing because the drug company fouled up, covered up or lied up. Statins anyone?

chasbari Apprentice

Don't sign me up for it. I have a hard time believing it would work without long term complications and I wouldn't want to be the one they have to figure out those complications on. It already took four decades for them to figure out I have this in the first place. No thanks!

Chuck

Lisa Mentor

I wouldn't count your chickens before they are hatched. :o Or put all you eggs in one basket. ;)

No, I don't have much faith...nope.

Lisa16 Collaborator

So you don't think it's the goose that laid the golden egg? :D


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Lisa Mentor
So you don't think it's the goose that laid the golden egg? :D

Nope, I wouldn't cross the road ;)

(my attempts at some humor, is not meant to disrespect anyone, especially Ryan who first posted this information. It's always good to know what's going on around us. Thank you Ryan for posting.)

rinne Apprentice
I don't know...perhaps I'm in the minority here but I couldn't see myself jumping on board for this. I've worked in the pharma industry, and actually left it because I couldn't handle the deceptive practices they engage in. I would be very wary of accepting a solution that involves dependancy on the pharma industry. Also, there are insurance/financial consequences to this that could become a hindrance - imagine being declined medical insurance because of celiac disease and your dependence on this medication? There are celiacs who have a hard enough time having insurance cover tests, or nutritionists; I fear that being dependent on a medication could make the ramifications of a diagnoses even harder then they already are.

...

Well said, thank you. :)

I betcha within a few years Celiac will be one in ten and a multi-billion dollar industry, can anyone say Type 2 Diabetes. :rolleyes:

Gemini Experienced
Well said, thank you. :)

I betcha within a few years Celiac will be one in ten and a multi-billion dollar industry, can anyone say Type 2 Diabetes. :rolleyes:

It is so encouraging to see Celiacs who would reject a pharmacological, fake cure! ;) However, I will add my thanks to Ryan who posted this info

as it's always good to remain informed, even if it's for something I wouldn't touch with a ten foot pole. How could it work? Once gluten enters the gut, the reaction starts so even if gluten could bind to a substance and pass from the body, it's still in the gut. Maybe I'm being ignorant here but it just seems ridiculous. NO thanks.

As for Type 2 diabetes, I always say that the pill they prescribe for it is only for diabetics who cheat regularly. There are a number of Type 2's here at work and they all take their little pill and then go get a donut for break time. :o Then they complain that their blood sugar is not as low as it should be. I just don't get it......

CeliacMom2008 Enthusiast

I wouldn't want my son taking something regularly, but I had read another article on a pill from Alvine Pharm. that sounds similar and my first thought was "Yay! A back up plan!" I think it would be nice to have a pill that could be taken when CC was an issue. For example...my son's (who is 9 mind you) wedding reception. I would still want a gluten-free cake and meal, but wouldn't it be nice if he could also take something that would protect him if there was CC. Who wants to be in the bathroom on their wedding night?!? Or even prom night or whatever. Like I said, I would never want him to be popping pills so he could down a sandwich from Panera but there might be times when it would be nice as a backup plan.

I agree that we don't know enough about long term uses of any drugs and they should be used as a last course of treatment. Our society is too geared around easy fixes. Why actually take care of your body when you can pop a pill to counteract the bad you do?!?! Heaven forbid you exercise, eat right (whatever "right" is for your body) and take care of the body God gave! Not that there are very needed and good drugs out there, but there are a lot of others that we could do without if we just tried a little.

ravenwoodglass Mentor
As for Type 2 diabetes, I always say that the pill they prescribe for it is only for diabetics who cheat regularly. There are a number of Type 2's here at work and they all take their little pill and then go get a donut for break time. :o Then they complain that their blood sugar is not as low as it should be. I just don't get it......

That may be because the Diabetic educator actually told them to do it. When I was diagnosed I was handed a script and told I could eat just like I was eating just use artificial sugar and take the pill. When I asked what dietary changes I could make she just repeated I didn't need to make any, just take the pill. I was also told I needed to only check my BS in the morning. No other times. I spent a month eating and checking repeatedly, cut out high fructose corn syrup and decreased my carb intake and that quickly brought it under control. And kept it that way.

Unfortunately I am afraid when they do get a 'pill' or some engineered 'treatment' that the same thing will happen to celiacs. I for one will never take something to enable me to eat a substance that to my body is poison. Maybe it will take care of tummy ills, we have so much for that already why not add something else. Perhaps if there was less symptom control available I would not have gotten to the point I did. I questioned for 15 years how just taking an antidiarrheal was actually benefiting me other than to enable me to get through the day without a toilet on my back. Sure it helped that symptom but it sure didn't stop the progression of my disease.

Gemini Experienced
That may be because the Diabetic educator actually told them to do it. When I was diagnosed I was handed a script and told I could eat just like I was eating just use artificial sugar and take the pill. When I asked what dietary changes I could make she just repeated I didn't need to make any, just take the pill. I was also told I needed to only check my BS in the morning. No other times. I spent a month eating and checking repeatedly, cut out high fructose corn syrup and decreased my carb intake and that quickly brought it under control. And kept it that way.

Unfortunately I am afraid when they do get a 'pill' or some engineered 'treatment' that the same thing will happen to celiacs. I for one will never take something to enable me to eat a substance that to my body is poison. Maybe it will take care of tummy ills, we have so much for that already why not add something else. Perhaps if there was less symptom control available I would not have gotten to the point I did. I questioned for 15 years how just taking an antidiarrheal was actually benefiting me other than to enable me to get through the day without a toilet on my back. Sure it helped that symptom but it sure didn't stop the progression of my disease.

I had no idea that this was the "new" information being handed to diabetics! HOLY COW!!!!!!!!!! :blink: To even think that a diabetic would be told to eat what they want, as long as they take the pill is just plain stupid and grounds for malpractice, as far as I am concerned. My brother is a Type 1, who I STRONGLY believe also has celiac disease because of the diabetes and his symptoms over many years, was told by the docs he does not have it so he liked that idea better than mine. His health is in the toilet and his kidneys are almost gone at the tender age of 54 but he refuses to see the light. I guess this is what people WANT to hear as many have emotional ties to what they eat. I guess it boils down to those who just want to exist with mediocre quality of life and those who actually want a life and strive hard to make it as good as possible. Thanks for setting me straight on that!

valeriek Apprentice

Sign me up. I just want to be able to eat like a normal person. How soon until this is coming to the states? Thanks to who ever wrote this :D

silk Contributor

Count me out!

I love the double-speak in their description of the pill 'Symptom free'. Do you think any of the people responsible for developing this medication would go out on a limb and say that the pill would ACTUALLY prevent damage to the intestines? Probably not. All of us here know only too well that the term 'symptom free' does not mean that the risk to your health, immediate and long-term, is not present. How many Celiacs the world over have not been diagnosed because they ARE symptom free? And do you suppose any of those responsible for this medication would accept a pill from us that prevents "symptoms" when ingesting lye and would then go on to ingest the lye just to SEE if it worked. I seriously doubt it and in essence that is what they are asking us to do by 'trying' the medication.

It is so sad that the people/professions that we put our trust in, by necessity, can be so responsible for doing such harm to the very people they are suppose to care for. How do you teach a diabetic about being responsible for their own health and caring for their body when they are told that it's okay to 'cheat'. Eventually that little pill will no longer be effective and those people will then have to take injections to control their blood sugar. And don't even get me started on the usage of the term 'borderline diabetic'. If you aren't, fine. If you are even borderline, you are and better darned well behave as though you are BEFORE medication becomes necessary.

I think most of us here have had enough experience with the health care profession to know that we need to be our own best advocates and that means we should not blindly depend that someone in the medical field is giving us the actual facts and not just 'guessing'.

To me, that is exactly why this website has been so invaluable because there is nothing quite as believable as the information that come's straight from the horse's (Celiacs) mouth.

Lisa Mentor
Sign me up. I just want to be able to eat like a normal person. How soon until this is coming to the states? Thanks to who ever wrote this :D

I eat like a normal person, but without gluten. ;) You'll get there too Valerie. :D

maile Newbie

^

l Well said! as were most of the responses..... instead of a pill, I'd rather see more accurate testing methods

l so there'd be greater clarity.....not necessarily for those that have had a positive dietary response and know gluten is an issue, but for the benefit of both those that doubt them and society in general

celiaclisa Newbie

:o I simply cannot believe how ignorant most of you are? To have such disbelief in a medical break through completely bewilders me!? My first assumption is most of you are likely American citizens where medical benefits are greatly limited and therefore cause ignorance? ....Additionally, since when did any of you graduate med school... I'm afraid i am one that is strongly in favor of this cure and thank Ryan for posting this. And yes when it is released to the public, i will be dinning out with my family in restaurants and traveling the world eating as i please and not worrying about the consequences, the way life should be lived. Besides, every drug before it is released to the public must go though a mandatory human trial which usually must last a minimum of 2 years.

I would also like to mention i saw this medical breakthrough on television as it made National News...

I say its time for a little optimism, your stomachs will thank you for it

I would also like to add that i don't have any personal problems with Americans, just with there health care system, as it tends to cause a lot of Americans ignorance due to a lack of proper health care.

Blueyedtiger Newbie

I for one will definitely take the pill at least on special or rare occassions. I'm not really having any trouble with the gluten free diet but it would be nice not to have to worry when traveling or dining out.

As for the issue with Lactaid, I know quite a few people taking Lactaid and they seem to have no problems when taken before eating.

Lisa Mentor

I can "feel" the flurry of posts coming in as I write. :o

Celiaclisa,

Whether or not you share an opinion posted, other opinions are treated with respect here. This is Board Rule #1. Even with translated English, I would urge you to choose your words is bit more carefully.

Thanks you.

rinne Apprentice

What if gluten is just poison to everyone?

What if diabetes, arthritis, fibro, crohn's, ulcerative colitis, autism, not forgetting celiac, all responded positively to a gluten free diet? Would anyone like to add to this list? I'm also thinking anxiety disorders, neurological problems, depression.....

I have no desire to ever eat gluten again and since I have discovered the joys of almond flour baked treats I no longer lack for anything I want.

I'm not from the states. :)

ravenwoodglass Mentor
:o I simply cannot believe how ignorant most of you are? To have such disbelief in a medical break through completely bewilders me!? My first assumption is most of you are likely American citizens where medical benefits are greatly limited and therefore cause ignorance? ....Additionally, since when did any of you graduate med school...

Medical benefits are hardly limited here, testing and knowledge of celiac yes but medical benefits not at all. I don't know where you are from but the US may be pharmacopic but we hardly lack for medical care.

As to the assumption that no one here has any medical education or a scientific background, well you might be surprised. This is your first post here, before you make assumptions about the knowledge level of the population on this board you should get a bit better acquainted.

skymgirl Newbie
:o I simply cannot believe how ignorant most of you are? To have such disbelief in a medical break through completely bewilders me!? My first assumption is most of you are likely American citizens where medical benefits are greatly limited and therefore cause ignorance? ....Additionally, since when did any of you graduate med school... I'm afraid i am one that is strongly in favor of this cure and thank Ryan for posting this. And yes when it is released to the public, i will be dinning out with my family in restaurants and traveling the world eating as i please and not worrying about the consequences, the way life should be lived. Besides, every drug before it is released to the public must go though a mandatory human trial which usually must last a minimum of 2 years.

I would also like to mention i saw this medical breakthrough on television as it made National News...

I say its time for a little optimism, your stomachs will thank you for it

I would also like to add that i don't have any personal problems with Americans, just with there health care system, as it tends to cause a lot of Americans ignorance due to a lack of proper health care.

I think before you make a blanket statement about people's ignorance you should have a little practical understanding of some of the practices of the pharmaceutical industry. I have worked for companies (medical eduction companies) that were paid millions of dollars to teach doctors how to prescribe unnecessary, possibly harmful, or extraordinarily expensive drugs to their patient base. Seeing companies operating for the sole purpose of lining their pockets rather then with the best interests of patients can make one jaded to the pharma industry, I left my position for an entirely different industry because of it. Yes, I'll take a medication if I needed it to stay alive, this medication would not be one of those. I am not distrustful of all doctors or the FDA, but I absolutely question them. I'll question them endlessly, because I won't blindly follow the fruits of an industry so intimately tied to the financial sector.

Also, your statement of "every drug needs to have a mandatory human trial..." is a bit too simplistic to accept. Explain that to those who took Vioxx, Zelnorm, or many of the other drugs recalled from the market due to deadly side effects. Medications have been brought to market and recalled. People have died because of those medications, it's not something to take lightly.

I find many people throw "ignorance" at those who don't share their viewpoint. Critical thinking is not at all ignorant! It's simple to be ignorant (it's bliss!), it's harder to evaluate ideas presented to you; and after examining your own thoughts, biases, and "gut feelings" (no pun intended!) come to a conclusion. Which appears to be what most of us who posted that we wouldn't be interested did. Please don't insult my intelligence by calling me ignorant.

sbj Rookie
:o I simply cannot believe how ignorant most of you are? To have such disbelief in a medical break through completely bewilders me!? ....Additionally, since when did any of you graduate med school... Besides, every drug before it is released to the public must go though a mandatory human trial which usually must last a minimum of 2 years....I say its time for a little optimism, your stomachs will thank you for it

Celiaclisa: I can sympathize with some of your points but can't agree with your tone. Please try not to get upset with those who disagree.

You will find that this forum has a decidedly anti-medical profession bent; there's simply no denying it as any quick search will prove. We have many here who do not agree with any invasive testing, or that blood/genetic tests mean anything at all, or that vaccines are safe, or that any medicines approved by the FDA are safe; many believe that their doctors are only in it for the money and that the FDA is a corrupt organization in the pocket of the big pharmaceutical companies. The list goes on . . .

They might be right - I don't know - but you should probably know all of this before you start posting and riling people up! Ultimately we are all here to learn and to help so please keep that in mind.

ang1e0251 Contributor

I would have to say that I would like to see a much better track record of pharmaceuticals from the last 30 years to have complete faith in them. Maybe some folks had the good care to be diagnosed early in there health journey. Those of us who suffered long and have long lasting effects can't be so cavalier about our bodies.

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    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
    • Theresa2407
      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. 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I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. 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I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
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