Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Potential Cure Getting Closer?


Ryan T

Recommended Posts

ravenwoodglass Mentor
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.

I can only speak for myself and that is what I am doing here in response to the statement that I bolded.

I have very good reason to be a bit jaded with 'modern' medicine, it's tests and treatments. As a seronegative celiac who was almost dead before a doctor suggested trying the diet, as a arthritis patient who was given drug after ineffective drug only to see them be taken off the market, as someone who has been firmly diagnosed celiac without the 'recognized'genes, as a Type 2 diabetic who had to educate herself on things like the glycemic index of foods I have plenty of reason to be a bit skeptical about 'cures' or treatments.

I am not anti-medical profession, but frankly a doctor has to earn my trust with his knowledge not with a piece of paper from a medical school. And a drug has to earn my trust with it's time tested proven safety and effectiveness.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ryan T Rookie

Its very discouraging reading peoples comments geared with negative attitudes toward what could be something that may help any of us in the future. I understand peoples frustration towards celiac and what it has done to alter some peoples drive in life; while others have seen it as a chance to build a healthy lifestyle and keep a positive outlook on life. I believe people need to be more optimistic and keep thinking of the positive!

The University of Alberta is one of the top research facilities in the world!!! This is not your everyday pharmaceutical screw over the planet organizations. ( And yes I do believe that pharmaceutical companies play a HUGE part of running our lives and making terrible moral and ethical judgments. But lets please keep that a separate topic. ) I would suggest people to look over the site www.med.ualberta.ca Please look at their background and what they have to offer.

Remember we are all in this together!!

Ryan

Takala Enthusiast

I don't need to be "cured" of anything, but the food manufacturing and preparation industry needs to be able to respond to consumer needs other than prompting the Pharma industry to make another pill for their sloppiness and continued use of "mystery" ingredients source from "mystery" manufacturers somewhere on the planet.

Pharma research is a huge cash cow for these universities.

Here's another link from the Edmonton Journal:

Open Original Shared Link

In September, Sunwoo and his team will work with U of A gastrointestinal specialists on the first phase of human clinical trials on about 20 patients.

He has applied to Health Canada for registration as a specialty food product rather than a drug, which would shorten the time to get it to market.

In other words, there will be no long term studies of how this "antibiotic" effects the humans taking it, before its general release in 3 years, and whether or not it will have any long term side effects such as taking away the body's ability to digest other proteins, or whether the glu- intols or celiacs will be at higher risk for developing cancer.

I know that the anti tumor necrosis factor biological agents for the treatment of some forms of arthritis were supposed to be the "cure" for rheumatoid arthritis and some other forms of auto immune diseases, but have proven to be anything but that. What they don't tell the patients is that these immune system altering drugs tend to lose effectiveness after a few years so the next drug in the series has to be taken, that eventually many patients run out of options, that they are overated for certain types of arthritis and the patient may end up taking a boatload of other dangerous drugs anyway, that the drugs have rare but life threatening side effects like dying of opportunistic infections, and that they increase the risk of lymphoma cancer. Given all that, it is still worth it to many patients to take these drugs. That is their right to do so.

What disgusts me about the pharmaceutical industry is how they have co opted many health message boards into pushing the idea that the only way to treat arthritis is by taking these drugs irregardless of pre existing conditions, or the genetics and the cause of the arthritic conditions, and how they have belittled, trolled, blatantly harassed, and even banned some people who attempt to guide others onto the idea that their symptoms match those of the gluten intolerant/celiac and that a diet change might be more appropriate and give better results. To me, this is immoral behavior to make people sicker for the monetary gain.

The medical industry is also partially to blame as I doubt there are very many adults here who were either diagnosed as adults or came to the self realization that it had to be gluten that was making them ill, that have not heard the phrases "it's all in your head," or "I find nothing wrong with you per the test results," or paraphrased as "fibromyalgia" or "IBS" or "there is no relationship between your (disease) and diet.

To get back to medical ethics, again, in a world where the climate is changing and the resources available to sustain ourselves with enough food, shelter, and warmth may also be changing, is the correct approach to a problem with the purity of the food supply re a significant percentage of the population, and people's eating habits to make yet another drug to enable people to eat it ?

ravenwoodglass Mentor
In other words, there will be no long term studies of how this "antibiotic" effects the humans taking it, before its general release in 3 years, and whether or not it will have any long term side effects such as taking away the body's ability to digest other proteins, or whether the glu- intols or celiacs will be at higher risk for developing cancer.

To get back to medical ethics, again, in a world where the climate is changing and the resources available to sustain ourselves with enough food, shelter, and warmth may also be changing, is the correct approach to a problem with the purity of the food supply re a significant percentage of the population, and people's eating habits to make yet another drug to enable people to eat it ?

In other words it will be sold as an unregulated 'supplement', if I am reading this correctly? Thank you for pointing this out. It is a very important thing for us to be aware of.

GlutenGuy36 Contributor
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

rinne Apprentice

Thank you Takala, an excellent statement! :)

This topic seems to be coming up more often, I am pretty sure there have been other threads on this although not this particular egg.

I read something recently about Open Original Shared Link selling for $350,000,000.00. I couldn't find the link for that but you can hit the bolded section for more information about that drug.

Does anyone seriously think that after a company spends that much money that they are going to quibble if there are "side effects"?

I think this issue goes so much deeper than just our individual selves and our desire to have whatever we want whenever we want, as a species I do not see us having a future unless we can find a way to change our thinking about health and wellness.

chasbari Apprentice
I don't need to be "cured" of anything, but the food manufacturing and preparation industry needs to be able to respond to consumer needs other than prompting the Pharma industry to make another pill for their sloppiness and continued use of "mystery" ingredients source from "mystery" manufacturers somewhere on the planet.

Pharma research is a huge cash cow for these universities.

Here's another link from the Edmonton Journal:

Open Original Shared Link

In other words, there will be no long term studies of how this "antibiotic" effects the humans taking it, before its general release in 3 years, and whether or not it will have any long term side effects such as taking away the body's ability to digest other proteins, or whether the glu- intols or celiacs will be at higher risk for developing cancer.

I know that the anti tumor necrosis factor biological agents for the treatment of some forms of arthritis were supposed to be the "cure" for rheumatoid arthritis and some other forms of auto immune diseases, but have proven to be anything but that. What they don't tell the patients is that these immune system altering drugs tend to lose effectiveness after a few years so the next drug in the series has to be taken, that eventually many patients run out of options, that they are overated for certain types of arthritis and the patient may end up taking a boatload of other dangerous drugs anyway, that the drugs have rare but life threatening side effects like dying of opportunistic infections, and that they increase the risk of lymphoma cancer. Given all that, it is still worth it to many patients to take these drugs. That is their right to do so.

What disgusts me about the pharmaceutical industry is how they have co opted many health message boards into pushing the idea that the only way to treat arthritis is by taking these drugs irregardless of pre existing conditions, or the genetics and the cause of the arthritic conditions, and how they have belittled, trolled, blatantly harassed, and even banned some people who attempt to guide others onto the idea that their symptoms match those of the gluten intolerant/celiac and that a diet change might be more appropriate and give better results. To me, this is immoral behavior to make people sicker for the monetary gain.

The medical industry is also partially to blame as I doubt there are very many adults here who were either diagnosed as adults or came to the self realization that it had to be gluten that was making them ill, that have not heard the phrases "it's all in your head," or "I find nothing wrong with you per the test results," or paraphrased as "fibromyalgia" or "IBS" or "there is no relationship between your (disease) and diet.

To get back to medical ethics, again, in a world where the climate is changing and the resources available to sustain ourselves with enough food, shelter, and warmth may also be changing, is the correct approach to a problem with the purity of the food supply re a significant percentage of the population, and people's eating habits to make yet another drug to enable people to eat it ?

Amen to this. I am one of those ignorant Americans who searched this for years and fought medication for my Rheumatoid Arthritis in spite of the pressure from my Rheumatologist who was pushing Humira and Enbrel and many other things at me at every turn as my RA kept getting worse.... until I was blessed enough to have a wife who had an epiphany that this might, indeed, be celiac. I have doctors all through our families and those in research, pharma, I was in medical equipment sales for a time and am hardly ignorant to medicine and physiology nor have I been deprived of health care. Oh, did I mention that once I was diagnosed for celiac and have been gluten free that my RA is rapidly disappearing and I am going crazy because I see celiac as the root cause of so much suffering around me in folks too worn out by a barrage of foodacopia industrialized western consumptive dietary practices who are now as glassy eyed as the intake nurse in "Idiocracy" and are unable to think straight anymore. Just try to have a cogent conversation with many and you begin to understand. I want nothing to do with anything that made it not only impossible to move four months ago but also blocked the ability to think. I have been liberated to a diet that has made me come back to life right before people's eyes and yet they will deny that diet is really that important. The deep set re-education of western diet post WWII has been accomplished and I have basically withdrawn from it to a lifestyle that is allowing me to live life again. Just like I wouldn't stick a needle in my body for a drug that I had to sign a waiver clearing the drug company of any liability should I die as a result of the serious side effect potential of something that only masked the symptoms, I will not turn back to a lifestyle that co-opts long term wholeness for short term indulgences.

Live!

Chuck


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



valeriek Apprentice

I agree with you Ryan. I hope there is a cure. I really miss my lobster cakes. Are you male or female....you cant tell with a name like Ryan.

Lexi Enthusiast

It does seem to be too good to be true, but I would definitely give it a try. I have had so many strange health issues since I was diagnosed with Celiac Disease. I never know how I am going to feel from day to day. It really gets me down. Wow, it's exciting to think that I could enjoy my favorite dinners with my kids again, or go out to eat and order like a normal person. I would risk it - but that's just me!!!

Gemini Experienced
: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.

Ahem....cough....cough......time to set someone straight here. :angry:

American medical benefits may be somewhat limited but they are VASTLY greater than in most countries because we do not have

socialized medicine....as of yet, anyway. The current administration seems hell bent on making it that way and I so hope not.

Benefits also do not cause ignorance.....it's the set of standards used by the AMA in diagnosing Celiacs that cause many to become disillusioned

by the system. It should NEVER take an average of 11 years to find a problem, IMO.

A person also does NOT have to attend medical school to become educated on medical matters...I can and do read the same books as

they do and can learn as well as any doctor. You want to know how ignorant I am? I diagnosed ALL my medical problems and then made an

appointment with the doctors and asked them for testing for these specific problems and guess what. Their testing backed up my diagnosis.

There is something inherently wrong with a system when patients diagnose their own diseases because they have been ignored for years. Judging from the

world wide posts here to this forum, it seems to me we all have the same dopey doctors when it comes to diagnosing Celiac Disease.

Now, on to the pill. I have no problem whatsoever with anyone wanting to take a pill to make their lives a little easier. I would decline, except for maybe using them on occasion when traveling to countries where English is not the main language. I would still make every endeavor to eat gluten-free, though, and would use the pill as protection against cross contamination. Why do I say this? Because I eat far better than the general population and have the health to prove it. I take no other meds but thyroid hormone and it's because I eat so well and don't have the problems others can develop from eating a crappy diet. That someone would take a pill so they could consume fried junk on a regular basis or some hugely gluteny meal is beyond my understanding. That food isn't good for anyone, let alone Celiacs. I also am not emotionally attached to food so that solves many problems. There isn't but one or two items that I haven't been able to convert to gluten-free status anyway so that shows you how ignorant I am......silly me. :rolleyes: I am just SO deprived.......

In case you think there are no consequences to eating whatever you want.....um.....you know little about nutrition, don't you?

Clinical trials don't mean much either....there are a slew of meds that have been pulled from the market here in the States for killing people, that passed roster initially. Two years isn't nearly long enough to see whether a med will do more harm than good. I'm not one to pop a pill now and ask questions later.

Oh, yeah....and good luck with the cost. If they were even able to do this, which I highly doubt, can you imagine what they will be charging for it? Probably more than my gluten-free grocery bill every week!

There is no ignorance here on this board, only skepticism. Most people adjust very well to the gluten-free lifestyle, get over it and on with their lives. Being comfortable with a healthy diet makes the need for a pill, on a regular basis, unnecessary. What's so hard about that?

converge Apprentice

I feel like many of us would benefit more not necessarily from the CHOICE of eating out, or eating food we traditionally ate before the onset of gluten intolerance/ celiac.

What I personally combat is how HORRENDOUS I feel when I take in even trace amounts of gluten just through cross contamination, from kissing my girlfriends lips, from maybe using a bar glass that wasn't cleaned properly. It is THIS that I would love to eschew... not having to wake up some days with a right hand covered in DH, feeling like a train wreck, and having a GI tract that moves at glacial pace. The neurlogical effect that our disease has on MY body is nothing short of amazing to me, and I would go into debt for the rest of my life to get rid of it.

phakephur Apprentice

Researchers seem to think that a celiac's fondest wish is to be able to eat gluten again. That's true for some of us, but I think a lot of us would just like to eat gluten free more easily, conveniently, cheaply.

Right now the variety and availability of gluten free foods is increasing in grocery stores and restaurants. I wonder if that trend will reverse if a "cure" comes on the market. That would suck.

henny Explorer
Researchers seem to think that a celiac's fondest wish is to be able to eat gluten again. That's true for some of us, but I think a lot of us would just like to eat gluten free more easily, conveniently, cheaply.

Right now the variety and availability of gluten free foods is increasing in grocery stores and restaurants. I wonder if that trend will reverse if a "cure" comes on the market. That would suck.

I agree! I actually love the gluten free diet and what it has done for my health. I think it's a truly healthy way to eat and live.

My only desire is to be able to eat what I truly believe is gluten free while out at a restaurant or someone else's home AND IF it turns out to be CC'd I'd like to be able to avoid the horrible results.

I'll continue to do my part, but would take a pill as insurance before eating in an uncontrolled situation. I won't go off the diet, no matter how good the pill might be.

Hummingbird4 Explorer

Count me in among the few who would love to go back to eating the way I used to. My personal opinion is that I would love it if there was a cure - or at least something I could take on the rare occasions that I feel the need to eat whatever I want. On a day-to-day basis, living gluten-free is fine. It's the social events that are hard for me. I'm not a super-social person, it's not like I go out all the time, but I feel really uncomfortable when I go out for dinner with a group, go to parties, work dinners, etc. If I could take a pill beforehand and eat like everyone else, heck yes, I'd be all for it!

Now before everyone jumps on me, realize that I did not have any symptoms, except for a few weeks of stomach pain last spring (which went away on its own before my diagnosis). If I had been in agony for years, maybe I would feel differently. But you all have to realize that for asymptomatic people, this diagnosis is not welcome news.

doughboy Newbie

Wow, I'm surprised by the overwhelmingly negative response to this upcoming clinical trial. There are many here who are proponents of the gluten-free diet as a healthier lifestyle alternative, but for me, it is a disease. As such, if there is a potential to reduce or eliminate some of the symptoms, I will openly welcome it.

To each their own, of course.

ang1e0251 Contributor

It's because so many of us have been burned by "cures" before.

rinne Apprentice
Wow, I'm surprised by the overwhelmingly negative response to this upcoming clinical trial. There are many here who are proponents of the gluten-free diet as a healthier lifestyle alternative, but for me, it is a disease. As such, if there is a potential to reduce or eliminate some of the symptoms, I will openly welcome it.

To each their own, of course.

For me, it is not a disease, it is damage caused by a substance my body recognizes as a poison. I suspect it is a poison for many people who are diagnosed with other forms of damage, i.e. Type 2 diabetes, arthritis.....

I question what we call disease, after all what are they diagnosing? Damage to the villi and how many people have been told that they don't have Celiac because there isn't enough damage for a diagnosis?

I understand and appreciate why people would want to know they are safe to eat out but I would rather see more effort put into wholesome meals for everyone.

MollyBeth Contributor

How does that saying go??? If it sounds too good to be true it probably is...

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Is this celiac?

    2. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Is this celiac?

    3. - Wheatwacked replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Is this celiac?

    4. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      13

      Help I’m cross contaminating myself,

    5. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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. 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)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. 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. 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.                                                                                                                                        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. 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?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.