The way it really is

[trents]

This is truth: https://www.beyondceliac.org/community/newsletter/?utm_campaign=Newsletter&utm_source=hs_email&utm_medium=email&utm_content=63591229&_hsenc=p2ANqtz-8LamDIJvpuutXMJO2cvHeKlmhe9MWb8EOS02Ah24ZTk60vhYXJtVFQlXSshFz9beMtWnmnrjILUMQLlS9Z0NIydUdqsQ&_hsmi=63591229

We have been beating our heads against a wall for years. We not only need to be conscientious about avoiding gluten as best we can but we also need a medical agent that will take care of cross contamination. Totally avoiding gluten is a pipe dream.

[Ennis-TX]

Yeah CC is a huge issue in the industry and finding safe foods is a real pain in the ass...even more so when they put fresh produce right next to a damned open air bakery at grocery stores....I prefer bagged/clamshelled ones, and ONLY CERTAIN brands of frozen and canned do that do not do those "sauced" lines using the same packing equipment just hosed down....

But it is manageable, I am a super sensitive and I found brands I trust and methods to keep me safe...I still keep a bottle of glidenX around for those maybes, and Nima Test things I am unsure of. But generally a whole foods diet keeps you pretty damn safe.

Honestly since I got this disease I have dreamed of a Island Nation free of gluten and my allergens with all produce grown locally in hydroponic bays and everything brought onto the island lab tested for gluten, and gluten sniffing dogs being used like drug dogs lol. .....I can dream....but more realistically I have a dream of opening a 100% gluten free paleo food truck one day and catering to celiacs and going where I am needed for events and gatherings.

[cyclinglady]

I disagree.  I think you can manage or treat celiac disease with a gluten free diet.  The article made a comparison of managing celiac disease like Type 2 Diabetes and Heart Disease which she says can not be managed on diet alone either.  I strongly disagree with that!  I have Type 2 Diabetes and have been managing with just diet alone for four years.   No drugs necessary. Every drug has benefits and risks.   For example, statins can lower cholesterol, but can cause muscle pain and Type 2 Diabetes.  Go figure!   If my pancreas craps out for good, I will take insulin, just like I take thyroid hormone replacement.  These are not “drugs”.  

Beyond Celiac places a lot of emphasis on drug development.  That is one of it’s main missions.  Celiacs probably need drugs because people want an easy fix.  It could make eating out easier and less risky, but I will prefer to my diet alone strategy.   

While true, many celiacs do get hidden exposures to gluten, Look at what most people are doing.  Most refuse to improve their diets with nourishing whole food.  Most continue to eat out.  Most have substituted their old diet for the same processed foods diet (e.g. Cheetos, Milky Way Bars, and pizza).  I get it.  My first GI told me the bad news, but tried to soften it by telling me I could eat at Red Robin.  New celiacs are not given much guidance and there are few dieticians who really understand the gluten free diet (not to mention that insurance may not cover it).  

My PCP has three celiacs.  Two refuse to adhere to the diet.  “It is too hard”, they tell her.  I am the celiac who adheres to the diet.  It works for me.  Mostly whole foods, few grains, and I avoid processed foods.  Sometimes, I feel like Ma Ingalls on the Praire cooking all my food.  But the end result has been worth it.  My last endoscopy revealed a healed gut.  It also revealed autoimmune gastritis, but that seems to be in remission.  I am running, cycling, and swimming.  I might sign up for a Triathlon again.  At my age, I can probably get on the podium due to less competition!  ?

So, take heart.  It is possible to heal from celiac disease.  I am living proof!  

 

Edited June 7, 2018 by cyclinglady

[Posterboy]

Cyclinglady, Trents, EnnisTx,

Cyclingldady Trents didn't say you couldn't heal.

5 hours ago, trents said:

We have been beating our heads against a wall for years. We not only need to be conscientious about avoiding gluten as best we can but we also need a medical agent that will take care of cross contamination. Totally avoiding gluten is a pipe dream.

Trents was wanting a medical agent or supplement that could help a leave some of the pressure of always having to eat gluten free.

The problem with Medicines' or even supplements like Gliadinx you can never be sure it digested 100% of the gluten before it reaches your small intestine.

Jefferson Adams had a  nice article about this topic called "why all the hate for Celiac drug treatments". Here is the link for those who have not read it before.

the problem with most peptides and digestive enzymes they need a relatively strong acid to activate them.

AN-PeP (GliadinX) and other digestive enzymes often stop working above a pH of 4.0.

And explains why GliadinX might help one individual but not the other.

This is explained well in this Alternative Medicine review when they explain the gastric complications experienced by many celiac's.

Open Original Shared Link

quoting their section on stomach acid and it's role in IgE mediate food reactions. sorry about formatting.

Gastric Complications

"Studies demonstrate 30-40 percent of celiac

patients suffer from dyspepsia.26 Due to the commonality of occurrence,

some researchers recommend that clinicians test for celiac disease in dyspeptic patients.27

Reflux is a common symptom of celiac disease as cases of silent celiac

disease have been diagnosed after endoscopies for this disorder.28 . . .

This might be unfortunate for celiac patients for two reasons. First, adequate pH is needed to break down protein fragments in foods (including gliadin and cow’s milk protein) to avoid further excitation of the immune system. One study found allergenic antigens were reduced up to 10,000-fold by adequate gastric acid.30 Subjects on acid-blocking medicateons were also 10.5 times more susceptible to IgE-mediated food reactions, with an elevation in IgE antibodies remaining five months after a three-month course of acid blocker therapy.31

Second, adequate pH is necessary to facilitate nutrient digestion, to limit the entry of non-beneficial organisms, to activate digestive enzymes, and to activate proton pump-dependent transporters for nutrient absorption. Due to the risk of increased fractures, vitamin B12 deficiency, Clostridium difficile-associated diarrhea, and other complications of proton pump inhibitor therapies, clinicians are calling for prudent utilization of these medications.32"

Here is the original research entitled "The Effect (Role) of Gastric Digestion on Food Allergy".

Open Original Shared Link

Here is the full abstract.

The effect of gastric digestion on food allergy.

Open Original Shared Link¹, Open Original Shared Link.

Open Original Shared Link

Abstract

PURPOSE OF REVIEW:

The role of the stomach as the primary location of protein digestion is very well recognized, leading to classification of proteins as digestion-resistant or digestion-labile. This review analyses the role of gastric digestion in food allergy.

RECENT FINDINGS:

Hindrance of gastric digestion by elevation of the gastric pH, the therapeutic goal of anti-ulcer medication, was recently shown to trigger food allergy via oral sensitization in a murine food allergy model. The relevance in humans was assessed in an observational study of 152 gastroenterological patients who were medicated with anti-ulcer drugs due to dyspeptic disorders. Twenty-five percent of all patients developed a boost or de-novo IgE formation towards regular constituents of the daily diet. The clinical relevance of the induced antibodies was confirmed by positive skin and oral-provocation tests. Moreover, the importance of gastric digestion was also proven for food-allergic patients, as the allergenicity of allergens were reduced up to a 10,000-fold by gastric digestion.

SUMMARY:

These recent studies indicate for the first time the important gate-keeping function of gastric digestion, both in the sensitization and the effector phases of food allergy.

PMID:

16670517

DOI:

Open Original Shared Link

 

And what I liked about the Beyond celiac article is their realization that quoting.

 

"But science is about questioning assumptions and following where the evidence leads."  And I hope theey understand the gravity of their conclusions.

 

And the more and more I study it and have studied it stomach acid keep coming up as being critical to digestion of not only our foods but harmful proteins before they get to our small intestine Villi causing celiac as a result of this destruction.

 

Once I understood digestion is a north-south process it became clear to me. Strong stomach acid could help aid my digestion.

 

It doesn't mean it will help other's the way it helped me . . .but if it helps me... it should help others too!

 

But sometimes it is hard to see the connection, ie. the forest for the trees.

 

If I remember correctly a  pH over 3.0 (it might of been as low as 2.8) was the cut off from which stomach acid lost it ability to denature proteins into harmless peptides the way most digestive aids work to assist the action of proteolysis ie. (the breakdown of proteins or peptides into amino acids by the action of enzymes) usually in the stomach when our pH is strong enough for this to occur naturally.

 

I think that is why taking BetaineHCL helped many of my digestive issues  because it again made my stomach acid strong enough to again digest proteins, naturally healthy in the stomach acid.

 

Our body is smart enough to know most viruses are proteins so the body can't discriminate (in the small intestine) between good and bad proteins . . once it reaches our small intestines.  They are all bad. .. and gluten is the baddest of those.

 

I have an agriculture background (as you can see from my profile avatar) and I see things in analogies.. . . I always remember(ed) the definition of a "weed'.

 

Any plant growing where it is not wanted is a weed. A corn plant in a soybean field is a weed!

 

Proteins are not wanted nor welcome (weeds) in our small intestine and the body must destroy it all cost(s) even if it includes destroying it's Villi in the process.  All the eight most common food allergens are proteins and this is by design and not by accident.

 

******this is not medical advice but treating my low stomach acid helped me with many of my GI problems and I hope my sharing will help others.

 

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things”  this included.

 

Posterboy by the Grace of God,

 

 

[trents]

CL, I think you miss the point the referenced article was trying to make and that I was expressing agreement with. In fact, in your response you actually reinforce the point the article was making. The article was not (nor was I) saying that celiac disease cannot be successfully controlled by scrupulous avoidance of cross contamination. What it was saying is that it is virtually impossible to do so without becoming so consumed with the effort that quality of life suffers significantly. In my own words, to totally eliminate cross contamination one must become essentially OCD about gluten.

Having said that, with the current state of medical knowledge and treatment about celiac disease, such hyper vigilance may be appropriate for those who suffer severe reactions from exposure to traces of gluten. But wouldn't it be better to have a safe medication available to make that unnecessary?

[Ennis-TX]

4 minutes ago, trents said:

CL, I think you miss the point the referenced article was trying to make and that I was expressing agreement with. In fact, in your response you actually reinforce the point the article was making. The article was not (nor was I) saying that celiac disease cannot be successfully controlled by scrupulous avoidance of cross contamination. What it was saying is that it is virtually impossible to do so without becoming so consumed with the effort that quality of life suffers significantly. In my own words, to totally eliminate cross contamination one must become essentially OCD about gluten.

Having said that, with the current state of medical knowledge and treatment about celiac disease, such hyper vigilance may be appropriate for those who suffer severe reactions from exposure to traces of gluten. But wouldn't it be better to have a safe medication available to make that unnecessary?

Umm frack the medication, the issue is intially genetic....I want the gene for this turned off with a type of RNA Crispr Vaccine (RNA type would be temporary and avoid long term DNA changes but require boosters).

[trents]

Whatever really works, doesn't have side effects that are worse than the disease it is addressing and is affordable is fine with me, Ennis.

[cyclinglady]

13 hours ago, trents said:

Whatever really works, doesn't have side effects that are worse than the disease it is addressing and is affordable is fine with me, Ennis.

I have to agree.  I am biased.  I react to many medications (allergic) and have family members who have had adverse complications to prescription drugs.  I am able to handle the diet and still have a social life, but I realize that this is not possible for many celiacs.  

 

[PK-432]

On 6/7/2018 at 11:39 PM, trents said:

This is truth: https://www.beyondceliac.org/community/newsletter/?utm_campaign=Newsletter&utm_source=hs_email&utm_medium=email&utm_content=63591229&_hsenc=p2ANqtz-8LamDIJvpuutXMJO2cvHeKlmhe9MWb8EOS02Ah24ZTk60vhYXJtVFQlXSshFz9beMtWnmnrjILUMQLlS9Z0NIydUdqsQ&_hsmi=63591229

We have been beating our heads against a wall for years. We not only need to be conscientious about avoiding gluten as best we can but we also need a medical agent that will take care of cross contamination. Totally avoiding gluten is a pipe dream.

Yes gluten free diet is really difficult to manage due to serious issue of cross contamination. Even cross contamination develops serious complications and other diseases if not taken care.

[Gemini]

The diet is not difficult to manage if you learn about food and nutrition, in other words, do your homework.  It's the same for diabetics.  The vast majority of people I know with either condition who are always complaining do not follow their diets well and continue to try and eat the standard, crap, American diet.  Then whine they have been glutened and get mad when you point out why that is happening.  Everyone wants a pill for a quick fix and that is not reality.

I think if a good pill were developed to address cross contamination when traveling or dining out, with no side effects, that would be great but I would still be just as careful as I always am, regardless of meds available.  I have just never found it difficult to eat healthy and think the meal through to prevent getting sick. It's paid off because I rarely, if ever, have a problem and I am very sensitive. I do eat out occasionally but it's at the places I know are owned or run by people with Celiac and have never made me sick. I always have food available to eat that is safe.  There are a few simple rules to follow and if you do, then managing Celiac becomes pretty easy.  Like cyclinglady said, I cook as much as Ma Ingalls probably did but it pays off in the end.  I am surprised by the number of people who do not cook today because you can't be a successful Celiac if you don't cook your own food. 

[trents]

Not everyone is in a situation to "cook like ma Inglalls". That in itself has to be socially limiting, even if you only take into consideration the time involved. I think what we're looking at here is those many times most of us don't have the total control we would like over what we eat as when we go to a restaurant or eat at someone else's home.

[Gemini]

On 6/13/2018 at 4:05 PM, trents said:

Not everyone is in a situation to "cook like ma Inglalls". That in itself has to be socially limiting, even if you only take into consideration the time involved. I think what we're looking at here is those many times most of us don't have the total control we would like over what we eat as when we go to a restaurant or eat at someone else's home.

Actually, they are, but many won't.  Do you think people went out to eat all the time years ago?  No, they didn't.  98% of the time, we ate at home, at the family dinner table.  Eating out was a real luxury.  If you are going out to eat that much or dine at other's houses and take chances with their food that they prepare, then that is being somewhat risky and careless.  If a person can live with that level of risk, then that's fine but it still means a somewhat careless attitude about Celiac Disease.

There is nothing wrong with taking you own food to other people's homes.  I do it all the time. When you are pushing 60, taking risks just doesn't work out all that well.  I understand everyone's need to want to have a med for CC issues but you still have to be careful of what you eat, regardless.  I know I am in the minority on this but I see my family members cheat and be careless with their diet and then I have to listen to them b%$@# about being glutened.  No sympathy whatsoever do I have for them.  They are gluten free when it is convenient and that isn't reality.  That, in turn, makes things hard for me because then people think I am making the rules up about eating gluten free correctly, which I am not.  After 13 years gluten-free, I can't remember what it was like to cook with gluten and I cook with ease and without fear. It becomes automatic with what you have to do so you don't think about it. Not to mention the added benefit of weight control.  Cycling lady put it best with her post.  You wouldn't have to worry about CC so much if you made your own food more often and saved dining out for a treat, instead of a regular occurrence. To be honest, if they developed something to use against CC, and there were zero side effects, then I would use it when I travel.  But it would not make me go out to eat more or eat other people's food and I will never, ever eat gluten again, even if they claimed a cure. If you are genetically programmed not to eat something without damaging your insides, then don't expect the medical profession to tackle that successfully.  They are just not that good when it comes to chronic disease.

 

[kareng]

I don't feel  like I cook like Ma Ingalls.  I cook about as much as mom did when we were growing up- simple dinners most every night with left overs for lunches or repurposed for  dinner.    The good thing is, I have a bit more diverse tastes in food and lots more good quality convience stuff.  I don't have to freeze or can veggies.  I can get a wide variety of frozen if I don't want the extra step of fresh.  I use things like my crockpot and microwave for shortcuts.  We have some older threads about cooking and many of us could help someone simplify cooking .  

The pill that is on the market for accidental cc, appears to work well if taken correctly.  However, it's a stomach enzyme and those seem to bother me.