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In Defense Of 20 Parts Per Million


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#61 Gemini

 
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Posted 29 September 2011 - 12:14 PM

I'm a little bit shocked at this suggestion coming from admin of this board. Are you really saying that those of us that have found we only heal when eating LESS than the "reccomended" 20 PPM gluten should abandon the super-strict gluten-free diet approach that WORKS for us and go on dangerous side-effect producing drugs for refractory sprue? Or am I misunderstanding? Because from what I have always understood about refractory sprue--if eliminating gluten-free processed products works then the person is not a real case of refractory sprue.


I certainly cannot speak for Scott but I understood his response to be that if you are having that much trouble healing, it would be prudent to look into refractory sprue as a possible culprit.

The vast majority of Celiacs do well on a gluten-free diet, which will include some processed gluten-free food. I did, yet it was still 3 years before all of my symptoms went away. That's pretty common and at no time did I think that my food was so contaminated, I was not healing. I still think the whole premise that mainstream gluten-free food is so contaminated, if you eat processed food, you are constantly ingesting gluten, is nonsense. I fully accept it does happen from time to time but most Celiacs would not attain good health if it were. Even if you don't react, damage can still be occurring and the only way to verify that is whether you get better or not. Problem is, there is no way to verify that, testing wise, without food costing even more than it does. I think the system we have now is pretty good but it will take time to learn the ropes of what you can and cannot tolerate. I would also venture to guess that most companies who are serious about selling gluten-free food are not selling food that comes close to the 20ppm that is currently being proposed. If they were, many more Celiacs would still be sick and not buying the food, which could put some companies out of business.

It is not difficult to be a Celiac in the US, once you learn the diet. I think we have it pretty good with all the choice we currently have. No one coming here should fear getting sick off of our food. Some of you are giving the impression that you cannot trust gluten-free food produced here and it's contaminated. Horse pucky.

I think Scott offered some valid points on why some stay sick longer than others. These are things I thought of and would have looked into had I not recovered well.
If you are that sensitive and have more than one intolerance, your needs aren't going to be met as well as you'd like. That's life. My dairy intolerance ain't going away and I can no longer eat ice cream....the kind at the stand that everyone else eats....the really yummy ice cream. It blows but I am over it.
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#62 psawyer

 
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Posted 29 September 2011 - 12:26 PM

I think he is saying that if the "Super strict diet" doesn't work. If eliminating processed gluten-free stuff works, great!

That's what I understood. If you have truly eliminated gluten, and ruled out other intolerances, but are still experiencing symptoms/reactions, then you should consider the possibility of refractory sprue.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#63 GlutenFreeManna

 
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Posted 29 September 2011 - 12:44 PM

That's what I understood. If you have truly eliminated gluten, and ruled out other intolerances, but are still experiencing symptoms/reactions, then you should consider the possibility of refractory sprue.


That makes perfect sense. I guess I did not take that to be what he was saying since his response came after weluvgators who had said this: "I know that for our family, figuring out those “gluten free” foods could not be substituted into the lives that we had before (that was how it has often been portrayed to me by both doctors and support groups) was incredibly instrumental in us gaining healing – no other treatment that we have tried has worked anywhere near what that recognition did for us." at the end of her response.

In other words she is saying that a gluten-free diet without a ton of processed gluten-free food has been the only thing that worked for her family. Then he reccomended "super sensitives" look into refractory sprue instead. Those of us posting here that we want stricter regulations are not neccessarily advocating it because we are still getting sick off of those products on a regualr basis--we are advocating it because we don't want OTHERS to have to go through the long complicated process of getting sick while trying to figure out that certain products make them sick. I don't think I have anywhere said that ALL gluten-free products contain gluten contamination and can't be trusted. I have found many products I use and trust but going though the process of trying a bunch of products to find the trustworthy ones (for MY level of sensitivity) was not very fun. Usually the products I react to are the same products other supersensitives react to so this is not something I am making up or all in our heads. I already know what my other food intolerances/other food allergies and other health conditions entail. I think this is the case for several other supers sensitives posting in this thread, but perhaps I'm mistaken.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#64 admin

 
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Posted 29 September 2011 - 01:32 PM

I'm a little bit shocked at this suggestion coming from admin of this board. Are you really saying that those of us that have found we only heal when eating LESS than the "reccomended" 20 PPM gluten should abandon the super-strict gluten-free diet approach that WORKS for us and go on dangerous side-effect producing drugs for refractory sprue?


I'm not sure how you got this from my post, but no, if any diet is working for anyone, whether super sensitive or not, by all means stick with it. To clarify, there seems to be a few categories of celiac/gluten sensitive people:

  • Majority 1 = Less than 20 PPM works fine, and they can also eat Codex quality wheat start products (as many celiac in Europe do) without issues. A standard gluten-free diet clears up most issues. Very small amounts of cross contamination are not noticeable.
  • Majority 2 = Majority 1 + they have additional food intolerance but simple elimination works and even small amounts of the other offending items aren't noticeable.
  • Super Sensitive 1 = Those who do not improve on a gluten-free diet, perhaps due to contamination issues. Once they eliminate all gluten by not eating out, making their own food, not eating processed foods, etc., they improve and get better.
  • Super Sensitive 2 = Everything in Super Sensitive 1 + they have additional food intolerances, and once they find them and eliminate other offending items they improve and get better.
  • Super Sensitive 3 = They could be Super Sensitive 1 or Super Sensitive 2 but they do not improve no matter what they do.
It is the last "Super Sensitive 3" group that must consider other issues like refractory sprue, unlcerative colitis, etc., as no diet changes seem to help.

Take care,
Scott
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#65 GlutenFreeManna

 
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Posted 29 September 2011 - 01:52 PM

I'm not sure how you got this from my post, but no, if any diet is working for anyone, whether super sensitive or not, by all means stick with it. To clarify, there seems to be a few categories of celiac/gluten sensitive people:

  • Majority 1 = Less than 20 PPM works fine, and they can also eat Codex quality wheat start products (as many celiac in Europe do) without issues. A standard gluten-free diet clears up most issues. Very small amounts of cross contamination are not noticeable.
  • Majority 2 = Majority 1 + they have additional food intolerance but simple elimination works and even small amounts of the other offending items aren't noticeable.
  • Super Sensitive 1 = Those who do not improve on a gluten-free diet, perhaps due to contamination issues. Once they eliminate all gluten by not eating out, making their own food, not eating processed foods, etc., they improve and get better.
  • Super Sensitive 2 = Everything in Super Sensitive 1 + they have additional food intolerances, and once they find them and eliminate other offending items they improve and get better.
  • Super Sensitive 3 = They could be Super Sensitive 1 or Super Sensitive 2 but they do not improve no matter what they do.
It is the last "Super Sensitive 3" group that must consider other issues like refractory sprue, unlcerative colitis, etc., as no diet changes seem to help.

Take care,
Scott



I see. Thank you for making it clearer. I have never considered the last group to be super sensitive celiacs, but rather to have a different condition (i.e. refractory celiac). So when you suggested super sensitives look for other causes that is when I was confused because in my mind super sensitives improve once they figure out what is bothering them.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#66 admin

 
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Posted 29 September 2011 - 01:52 PM

One other thing that many people may not consider is sugar (not just refined sugar). There is a ton of research that shows many celiacs have diabetes and vice versa, but for many celiacs eating sugar can cause all sorts of gastro issues like candida overgrowth, etc., but this is really a topic for the Other Intolerances forum. Elimination diets should exclude all forums of sugar, and I do not often hear that mentioned in the super sensitive topics.

Take care,
Scott
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#67 T.H.

 
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Posted 29 September 2011 - 03:49 PM

T.H. -- But you said that you haven't even read the proposed regulations...am I missing something here???


Oh, wow, I just reread my post re: the law...I could not have been more confusing in my language if I tried to do it on purpose. Ouch - sorry 'bout that!

So, to answer the question: yes, I have actually read the 20 ppm regulation.

When I was talking about not being completely familiar with 'the law' I should have said: I am not completely familiar with what is required, legally speaking, to put into place and/or to alter existing regulations.

Considering I referred to the 20 ppm regulation AND the full concept of 'how the law works in terms of passing and altering regulations' in the same sentence - and referred to both of them AS 'the law' in that same sentence- seriously, I am amazed that you were able to get anything coherent out of that at all, LOL. Holy crud. I should sign up to work for corrupt politicians who need incomprehensible answers to tough questions. ;)
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T.H.

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21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#68 beebs

 
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Posted 29 September 2011 - 09:37 PM

I hate to be the one to tell you this but as far as I know there is no "gluten-free factory" in existence. Contamination can happen anywhere in the supply chain, including but not limited to the field where the gains are grown, during transportation, at the mill when they are ground into flour (very common), etc., and many so called gluten-free facilities are therefore no better than their counterparts who take steps and clean lines and machinery. The only way to decide if something is gluten-free is to batch test it at the end. I am not aware of any company anywhere that grows their own grains and grows or makes all of their own ingredients they use, and does all the processing on them. They would also have to restrict employees from bringing gluten to the workplace. In my opinion that is what it would take to make the claim that their facility is 100% gluten-free.

Also, for those who are super sensitive and have explored all of their other food intolerance issues, and have made sure their diet is 100% gluten-free, I have some bad news: You could be in the refractory sprue category, which is a whole different issue and requires additional medical treatment. For people in this category the proposed 20ppm regulations will be better than what we have now, but in reality only additional and more aggressive medical treatment is likely to improve their condition. Here is more info on that:
http://www.celiac.co...lagenous-Sprue/

Take care,
Scott


This is taken from freedom foods website
"We’re happy to share some secrets

It all starts at our home, a.k.a. our ‘free from’ factory in Stanbridge. It’s a special place in the Riverina free from wheat, sesame seeds, barley, triticale and all nuts.

We handle every ingredient with the necessary ‘TLC’. Actually with some ingredients we watch over the entire process from sourcing at the farm to milling in our ‘free from’ home. That way we know exactly what ingredients we’re using and every product can get our tick of approval."

The point is to have gluten free on your label here in Oz it must contain no more than 3ppm of gluten. So its doable.
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#69 GFinDC

 
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Posted 01 October 2011 - 12:17 PM

I support the 20 PPM level labeling. It is a good start on regulating the labeling of our foods. I don't expect to eat a lot of items labeled gluten-free under the rule, because I don't find many processed foods that fit my diet restrictions. But at least it is a common denominator for food labeling that companies can look to for planning their processes. It seems like a positive step forward to me.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#70 jumpingjuniper

 
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Posted 09 December 2011 - 05:44 AM

For me, the issue with the recommendation to eat "whole foods" as a way to avoid labelling issues, is that even a whole foods diet usually requires some products that may or may not contain gluten, depending on manufacturing processes.

Short of growing your own rice, quinoa, legumes, etc., you're probably going to be buying some processed foods at the store.

Rigorous gluten-free labelling isn't only about having access to highly processed foods, it's also about knowing that the grains and seasonings that you eat are gluten-free.
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