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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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psawyer

In Defense Of 20 Parts Per Million

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The current definition of "gluten free" in Australia is 3ppm in accordance with the latest technology. In line with that, lots of gluten-free products at 5ppm are no longer permitted to label themselves as gluten-free..

Although I did read in the Coeliac magazine they are currently testing 20ppm on a study group - it looks like we are heading in the same direction.

I can see why people are getting scared and upset about this - it must be hard when you are the few who are very sensitive. I am not super sensitive - but I have severe reactions to eating gluten which can end up with me in emergency. So - I personally need to know when, where, how and if there is any risk of contamination at all I need to know. But generally people are very lackluster and they just don't get it! Just because the majority are not super sensitive does not mean it doesn't exist. Read up my gluten symptoms and you will only find them in pubmed and medical studies - it is not something even listed in celiac symptoms anywhere - doesn't mean it doesn't happen :)

And interesting that someone mentioned peanuts.. You are not allowed any peanut products at any school here - you are also not allowed to have peanut butter before attending some schools. Some parents get really agro about it - but hey - its a bloody peanut - who the heck cares? Its not about banning gluten - but how hard is it for a GLUTEN FREE company to be gluten free - not hard at all. You can't have it both ways. Seriously how bleeding hard is it to process your foods on different lines. Have a gluten free one and a non gluten free if you insist.

Anyone else notice that Macro who does a huge gluten free range processes their quiona and polenta on gluten lines - why do it for - the two things that celiacs would eat most!! Why not process them on the gluten free lines that they obviously have for all their gluten free stuff?? It is bizarre.

Or they could be like Freedom foods and have a completely gluten free factory...

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Although I did read in the Coeliac magazine they are currently testing 20ppm on a study group - it looks like we are heading in the same direction.

I can see why people are getting scared and upset about this - it must be hard when you are the few who are very sensitive. I am not super sensitive - but I have severe reactions to eating gluten which can end up with me in emergency. So - I personally need to know when, where, how and if there is any risk of contamination at all I need to know. But generally people are very lackluster and they just don't get it! Just because the majority are not super sensitive does not mean it doesn't exist. Read up my gluten symptoms and you will only find them in pubmed and medical studies - it is not something even listed in celiac symptoms anywhere - doesn't mean it doesn't happen :)

And interesting that someone mentioned peanuts.. You are not allowed any peanut products at any school here - you are also not allowed to have peanut butter before attending some schools. Some parents get really agro about it - but hey - its a bloody peanut - who the heck cares? Its not about banning gluten - but how hard is it for a GLUTEN FREE company to be gluten free - not hard at all. You can't have it both ways. Seriously how bleeding hard is it to process your foods on different lines. Have a gluten free one and a non gluten free if you insist.

Anyone else notice that Macro who does a huge gluten free range processes their quiona and polenta on gluten lines - why do it for - the two things that celiacs would eat most!! Why not process them on the gluten free lines that they obviously have for all their gluten free stuff?? It is bizarre.

Or they could be like Freedom foods and have a completely gluten free factory...

Actually it's very hard to justify creating special gluten-free lines for somethings. It costs the company much more money to produce a product that in a completely gluten-free than it does to produce a product that is gluten-free but is made in the same factory/same lines as products containing gluten. In order to produce their gluten-free food in a different factory it means they need; a two facilities, two sets of employees, two sets of machines, two electric bills, twice the shipping trucks.... For some companies they would not be able to sell enough of the gluten-free items to cover the costs of production. Especially, if they do not raise prices. Think about it, Lay's can't exactly charge more for the bag of one flavor potato chips than the rest. People would be outraged. The other problem is verifying that your suppliers are actually producing a product that is gluten-free. That also costs more money.

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Anyone else notice that Macro who does a huge gluten free range processes their quiona and polenta on gluten lines - why do it for - the two things that celiacs would eat most!! Why not process them on the gluten free lines that they obviously have for all their gluten free stuff?? It is bizarre.

To clarify, you're not referring to GoMacro that makes gluten free bars, are you? As far as I know, they ONLY make gluten free bars. Not sure what Macro is - I couldn't find their products or website when I searched for it.

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Macro is a product line packaged for Woolworths Australia. See www.woolworths.au

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Many celiacs, perhaps you and your father included, don't take the time to explore all other food intolerance possibilities. I suspect that many people who believe that they are super sensitive celiacs and getting cross-contamination actually have additional undiscovered food intolerance, for example to soy, corn, casein, tomatoes, eggs, etc. It is very difficult to return to health if you are in this category and are still eating something that is offending to your system. I do no mean to try to diagnose you here, but I offer a possibility that many super sensitive people don't often consider. It can be extremely difficult and time consuming to find all intolerance issues, but, for many people, doing so is the only way to recover.

I am surprised to see such a generalization about many celiacs. Most of the celiacs that I know have gone to great lengths to understand many factors involved in their recovery. Our family is practiced in medically supervised elimination/challenge diets, and we have eliminated more than just gluten. We are also dairy free, amongst other things. And you know one of the grave mistakes I made at the onset of going gluten free? Drinking

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Actually it's very hard to justify creating special gluten-free lines for somethings. It costs the company much more money to produce a product that in a completely gluten-free than it does to produce a product that is gluten-free but is made in the same factory/same lines as products containing gluten. In order to produce their gluten-free food in a different factory it means they need; a two facilities, two sets of employees, two sets of machines, two electric bills, twice the shipping trucks.... For some companies they would not be able to sell enough of the gluten-free items to cover the costs of production. Especially, if they do not raise prices. Think about it, Lay's can't exactly charge more for the bag of one flavor potato chips than the rest. People would be outraged. The other problem is verifying that your suppliers are actually producing a product that is gluten-free. That also costs more money.

Well - that was kind of my point..what I meant was - either be gluten free - or don't, don't try and have it both ways. I am willing to pay extra for gluten free products....as someone else pointed out here in Australia it is only considered gluten free if it is 3ppm or less. And that is fine for me. Expensive maybe - but we just eat heaps of rice and potatoes so its not really that different!

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Or they could be like Freedom foods and have a completely gluten free factory...

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.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Refractory-Celiac-Disease-%26-Collagenous-Sprue/

Take care,

Scott

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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.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Refractory-Celiac-Disease-%26-Collagenous-Sprue/

Take care,

Scott

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.

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

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

I hope that is what he means. Thanks.

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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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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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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

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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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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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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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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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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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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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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.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Refractory-Celiac-Disease-%26-Collagenous-Sprue/

Take care,

Scott

This is taken from freedom foods website

"We

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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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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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    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
    • Welcome!   With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.   What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.   I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.   Advocate for your health!  Document!  Save and print all test results and maintain file.   Take care!  
    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
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