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T.H.

Member Since 11 Aug 2009
Offline Last Active Sep 27 2014 10:07 PM
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#913667 Gluten Product Mislabeled As Gluten Free

Posted by T.H. on 23 April 2014 - 02:36 PM

https://www.glutenfr...-gluten-free/35

 

Even if you don't use this product, I'd recommend reading this, because while this product - which uses barley malt but is labeled gluten free - is not certified by the GFCO, it is made in a facility that is certified as gluten free by the GFCO. So, a potential concern for other products made in the same facility.

 

There is also some discussion of something that it seems to me is good to keep an eye on: what may be a disconnect between what the actual FDA rules ARE on being gluten free and what the companies are interpreting the rules to be. I imagine this is going to be more of an issue in the beginning, when companies are still trying to understand what compliance to the gluten free regulations entails, but better we stay aware and safe until they get it sorted, yeah?


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#913666 Mast Cell Activation Syndrome (Mcas)

Posted by T.H. on 23 April 2014 - 02:30 PM

This is the latest information on diagnosing MCAS/MCAD that I know of. It was put out this February - http://www.wjgnet.co...pdf/v3/i1/1.pdf

 

I imagine that may be of some help to her. ALSO, the mastocytosis society will answer questions from doctors - they have some experts who have agreed to do this - about mastocytosis AND MCAS or MCAD.   So she may want to check that out, too. 


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#908393 Mast Cell Activation Syndrome (Mcas)

Posted by T.H. on 09 March 2014 - 08:17 AM

The newest information down the pike on this condition. :-)

 

"A concise, practical guide to diagnostic assessment for mast cell activation disease" by Afrin and Molderings

Published February 2014

http://www.wjgnet.co...pdf/v3/i1/1.pdf

 

 

And hi, Jebby! :-)

 

Just wanted to add something of my own personal experience as someone else with MCAD and Celiac Disease, in case it helped anybody exploring this.

 

1. My own reaction to gluten is the worst thing I have, still. It affects me for months. The doctor and I have discussed the symptoms and her thought is that it may be the celiac disease responding to the gluten which then triggers the mast cells because of MCAD, so a fun double-whammy that I feel very lucky I survived to talk about. This is speculation only at this point, however. 

 

I mention this because I've now spoken to a couple of other celiac and MCAS/MCAD sufferers who have something similar: a really, really bad reaction to gluten. Not all celiac/MCAD folks, but a few of us.

 

 

2. I'm extremely sensitive to very small amounts of gluten. The same celiac/MCAD folks i spoke to who had a huge reaction also had reactions to mere traces of gluten cc. I don't know if that means the intense reaction and reaction to traces might be more likely to coincide, however; not even close to a big enough sample size, obviously. But interesting data point.

 

3. I think one of the most important things you can do for yourself if you are searching for answers is to trust yourself and how you feel, and at the same time be fluid and be aware.

 

If you have symptoms that feel like you're being glutened, even when others disagree it's possible? Personally, I think you should explore it, but be fluid enough to adapt to what you find. Because if you pay attention, you'll find out soon enough if gluten isn't the issue, because you won't get better. Or if you do improve, it won't be complete, or there will be oddities and things that don't match up right.

 

All it takes is for us to be aware enough to notice when something is a perfect fit, and notice when something is not a perfect fit, then go and explore what else could be going on if it's the latter. Lather, rinse, repeat.

 

I had such a distinctive reaction to low levels of gluten that when I got glutened, there was no doubt what it was. Still isn't, even when it's to such low levels most celiacs don't have issue with it, even when I have to distinguish it from symptoms arising from other conditions. I wasn't aware that it was some weird MCAD/Celiac combo punch, but the gluten part? I had that covered. But then I had symptoms that were similar to glutening but not as severe, didn't match up quite right, and with those, it always felt more like a case of 'well, I'll treat it like gluten for now but keep exploring.' And exploration got me my answers. 

 

I guess really what I'm trying to say is that if you have this - or any condition where things are a bit wonky or strange - you are going to have plenty of people telling you that what you feel is impossible, that what you experience is crazy, that you're overreacting by avoiding X or Y. Family, friends, even medical professionals may say this to you. And that hurts, and it can be hard to have faith in yourself when this happens. 

 

Really, it's not a bad idea to take an honest look at what others have to say, to think about their arguments, but in the end, you've got to trust yourself. You're the only one who knows how you really feel, and what's been going on in your day to day life. If other people's arguments do not match what you experience, then move on and try to find the truth.  

 

Here's wishing everybody finds out exactly what makes you healthiest and happiest, sooner rather than later. 


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#898138 gluten-free For 6 Years, Worse Than Ever. Help! New Person Here: )

Posted by T.H. on 03 December 2013 - 09:09 PM

This may be a shot in the dark, but did your doctors ever check you for mast cell activation disorder(MCAD) or mastocytosis?  

 

I was recently diagnosed with this, and a lot of my experience resembles your own. My symptoms grew worse after going gluten free, although I eventually found a way to improve them, I just didn't fully understand why. I had to go 'super' gluten free or I would just bite the dust. Found other food intolerances and had to avoid those. Started reacting to chemicals in a big way and had to avoid those, too. Yeah, supplements kick my butt. I can't take them either.

 

I would keep finding things to make it better, and then it would start to get worse again and no doctors could figure it out until I finally got tested for MCAD and had it - and it was just a set of urine and blood tests, but it had to be the right ones, is all. 

 

Both conditions are where the body's mast cells - which degranulate and cause the symptoms of an allergic reaction - react abnormally and trigger an allergic reaction to all sorts of things that you wouldn't normally be able to.  In the past, mastocytosis was recognized more by those who would go into anaphylactic shock all the time but tested negative for allergies.

 

However, MCAD, which is much more recently recognized, is actually more when the body's mast cells can either release everything at once (causing anaphylactic shock) or they can slowly 'leak' the contents out and cause ongoing, chronic problems, but not necessarily symptoms that you'd take to be an allergic reaction. Some of these can be inflammation, rashes, itching all over, gut and bowel issues of all kinds, fatigue, bone and joint aches, muscle aches, hair loss, exhaustion, headaches, anxiety and depression, insomnia, and so on. Things like chapped lips or mild dehydration are common because the body's response also results in loss of fluids into the tissues as the body reacts.

 

People with this condition have 'triggers' that trigger the mast cells, and aside from foods and hay fever type allergens, chemicals are some of the most common triggers. Some doctors believe that many people diagnosed with multiple chemical sensitivity may actually have mast cell disorders, instead. Most people I've met with this eat almost no processed foods at all. And a much higher number of them than the regular population are either gluten intolerant or celiac.

 

If you want to explore this, the best information I've found is on facebook support groups. You can find a few if you look up MCAD, mast cell, mastocytosis, or mast disorder.  These groups have some great files with lots of technical information on how to get tested, symptoms, treatments, all sorts of things.

 

And if you wish to get tested, you may need this, because many doctors don't even know how to test for this, let alone what the symptoms are. I currently have a 7 page packet to give to anyone in the ER if I'm ever taken in, and about 2 pages are instructions for the doctors on do's and don't's, because they are so unlikely to know about it. 

 

It truly does seem like it might be worth exploring, at the very least.  Wishing you good luck, and feel free to PM me if you have any questions. 

 

 

Hello everyone! I’d like to introduce myself to this forum, and it is about time. I have been lurking around here for the past 6+ years: ) I am basically at my wits end and in need of some advice.
To give you some background, I was diagnosed with Celiac disease about 6 ½ years ago through blood work and biopsy. My symptoms prior to diagnosis were bloating and C, insomnia, recurrent sinus infections, itching all over, and the list probably goes on. Anyhow, after diagnosis I went straight to a religious gluten-free diet. When I say religious, I mean every item was checked with the company, new dishes and utensils, body care items. I was expecting to feel better. However, I actually felt worse for a long time. When I say worse I mean fatigue, mood issues, aches and pains, sleep problems etc. On top of that I developed DH skin rash about a year after I was diagnosed.
During the past 6 ½ years I have meted out that I am a super, super sensitive celiac. I also have some other food sensitivities that I have discovered. I eat very little in the way of processed foods, and only those that I am sure I can tolerate after years of maddening, extensive “food testing” on myself. However, all of this has only partially helped.
I am only 36, but I feel my health has been on a downward spiral for the past 8 years or so. After having the most beautiful little baby in the world 18 months ago things have only gotten worse. I have recently been diagnosed with scarring alopecia; an autoimmune disease which causes permanent, progressive hair loss. This has been extremely devastating for me to say the least. Also, my primary physician is now referring me to a rheumatologist because she feels I may have fibromyalgia, but no one is really sure. I seem to have many of the symptoms of fibromyalgia including body aches, headaches, sleep problems, and numerous chemical sensitivities. The chemical sensitivities are so bad that I can’t even take a multi-vitamin at this point without a flare-up of symptoms. I haven’t really accepted the fibromyalgia diagnosis yet since I think something deeper, possibly food related? may be going on with me.
I also have sensitive skin, constant chapped lips, thinning, brittle hair and I struggle with anxiety and depression issues. I was tested for thyroid imbalance including antibodies and screening for Hashimoto’s. All tests came back within perfect range.
I have done a lot of research on leaky gut, and think maybe this is an underlying problem for me but not really sure. Several months ago I tried the Specific Carbohydrate diet for 30 days. I was hoping this would be my magical cure, but I only felt worse. My fatigue, insomnia and body aches increased immensely during this time despite eating 2000 calories a day. I had to discontinue the diet because I couldn’t function. I am now trying eliminating grains again and basically eating paleo autoimmune. I am in week 2 and I was sort of feeling better but last night I ate a huge helping of homemade kale chips. After eating that my stomach bloated up and My fibro-like symptoms flared up. I couldn't sleep and I feel like hell today! Is there such thing as a kale intolerance?? Geez. I'm starting to feel like nothing can help me and I'm intolerant to everything!!! I don't know what to eat anymore.I’ve also tried numerous supplements such as EFA’s and vitamin d but my body seems unable to tolerate or process these things and I just feel worse.
Sooooo…just wondering/hoping any of you might have some insight into how I can feel better, since it seems many on here have similar issues? Maybe my issues are not food related and I'm barking up the wrong tree? I’ve apparently baffled my doctor and I haven’t yet gone the naturopath route since I can’t really afford it. I want my life back and I don’t want to feel sick every single day. If I hear one more story about how simply eliminating gluten will bring about perfect health I might scream! This has not been the case for me. Anyhow, glad to meet you all, and any insight would be much appreciated. Thanks!!


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#894772 One Study Said 60% Of Celiacs Are Not Healing Just With Diet.

Posted by T.H. on 05 November 2013 - 08:17 AM

I wonder if they were referencing the same study as the Celiac Disease Center is for their 60% number:

http://www.curecelia...guide/treatment

 

Unfortunately, the celiac center doesn't reference the research specifically, either. But the research center makes more mention of the fact that diet compliance can affect the results.

 

The study results seem to vary, otherwise. I wonder if they are more consistent when you look at them by area, perhaps? Some differences in brands or gluten free food laws that might affect the patients' food? Or maybe better patient education and support?

 

I know the study Kareng mentions is from the Netherlands, but a study in Italy and in the USA had different results. It seems weird that the results would be so different without something else going on that is maybe not being taken into account by the researchers, you know? :-/

 

http://www.ncbi.nlm....pubmed/20145607

http://www.ncbi.nlm....pubmed/19302264


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#891548 Too Limited Diet, And Still Sick. Not Sure What To Do...

Posted by T.H. on 10 October 2013 - 09:42 PM

plantains are another good source of carbs, and you'll get carbs from veggies, too, just not as much.

 

I'm grain free, too, as is my daughter, and potatoes, plantains, and fruits are our main sources. But yeah, you have to eat a lot of them. 


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#891544 That Moment When You Find The Answers To It All

Posted by T.H. on 10 October 2013 - 08:31 PM

I've been MIA for quite a while now, and I just thought I'd update as to what I've been doing, because I just got a diagnosis that is SO weird, but it explains everything AND it could be relevant for a few folks here, so I thought I'd share.

 

I react to crazy small levels of gluten, and have written in the past that I turned out to ALSO react to crazy small levels of sulfites, it turns out. I thought that might explain some of my unknown reactions, but it was still so crazy, how much I reacted to. Some things still didn't quite fit, not like they did for some others I know with these two issues.

 

I react to walking through a bakery, I react to what I assumed were very small particles in the air as the smell of certain bakes goods has set me off. I had a very hard time staying well, and had to avoid anything that has any gluten contamination possible, or sulfite contamination, even the teeniest, tiniest amount. I buy produce from famers I interview to avoid any contamination on the produce, and same for ranchers and fisherman and so on. And still sometimes I would get sick and react and couldn't even find a reason for it.

 

Sometimes it felt like I was reacting to the whole world. And I know some folks here struggle with that too, where they are reacting over and over, and it feels like there is gluten AND something else and they just can't get a handle on it, you know?

 

Turns out, there is a condition that can make a person this sensitive; a few related conditions, actually. Mastocytosis is one of these, and Mast Cell Activation Disorder is another. These are WEIRD disorders. Mast cells are usually triggered by an allergen and release a cocktail of goodies into your body (like histamines), and can eventually cause anaphylaxis, but they can skip that side of things and instead cause inflammation, neurological problems, gut pain, and all sorts of fun stuff. 

 

Those with a mast cell disorder have mast cells that can trigger without the presence of an allergen. They have, instead, 'triggers.' These can be foods, like gluten, or chemicals, or even smells - not particles in the air, but an actually  scent hitting the nose can trigger these suckers. And even more fun, things like, say, taking a hot shower, or getting a cold or flu, can trigger these cells to start an allergic reaction.

 

It can take very, very little to trigger mast cells for this condition, so miniscule traces of a trigger can set it off.

 

I have just been diagnosed with mast cell activation disorder (it was only officially given a name in an international conference 3 years ago, so I'm lucky to have gotten the diagnosis!). While I am a celiac, gluten is ALSO one of my triggers. I do not have a normal allergic reaction, like hives, that would have clued me that mast cells are involved, which can happen with this disorder. I instead get neurological reactions.

 

Whether the celiac disease AND the mast cells are doing this to my brain, I don't have any real way to tell. But if they both do, it would explain the huge whammy I get hit with when I've gotten gluten contamination in the past. 

 

 

Mastocytosis is considered an orphan disease, less than 200,000 in the USA. I believe MCAD has fewer people diagnosed than that. HOWEVER, some experts who are diagnosing this have said that they believe MCAD may be more a case of 'rarely diagnosed' than actually rare, because they are finding more and more folks with this. There is a slightly higher risk for those who have auto-immune disorders.

 

A number of the MCAD folks I've met cannot tolerate gluten at all, either, and seem to have very severe symptoms to gluten contamination. And they react to very, very low amounts of most of their triggers, so they'd likely have been considered super-sensitive celiacs/gluten intolerants, too.

 

So if you are still struggling and searching for answers even while very gluten free, and can't seem to eliminate all contamination that is causing you problems, it might be worth your while to explore this. 

 

And as for me, I finally have an answer....it's kind of a crummy answer, because there isn't a cure, and a lot of folks with this end up very isolated, because you have to avoid what 'triggers' you, and that's in a lot of places, usually. But there is hope in the form of certain dietary changes, too, which at least now I know enough to pursue.

 

And the best news is that it may offer hope for my daughter's continuing ill health as well - she's getting tested in 2 weeks. And for the first time, when I speak to people in who have this, they hear her symptoms and quite a few have said: yeah, I get all those symptoms. That has been the first time EVER that someone has had some of her stranger symptoms. 

 

Wishing you all good luck in all your own health battles, and good luck, as well, in figuring out how to live with what you have, and be strong, and staying positive. :-)

 

 


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#886124 Celiac Disease May Be Even More Common Than Previously Thought

Posted by T.H. on 27 August 2013 - 04:13 PM

http://www.prnewswir...-221398821.html

 

"...In a study of more than 2500 adults, the researchers combined traditional antibody testing (measuring the immune response to gluten) with an assessment of specific genetic risk markers. They found that more than half of the subjects had genetic risk factors for developing celiac disease. This newly developed testing strategy also showed that celiac disease potentially affected at least one in 60 women and one in 80 men. The research is published online today in the journal BMC Medicine"

 

 

I keep thinking of just how many MORE people are missed by our medical community than we previously thought, if these numbers are accurate. 


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#831329 Newly Diagnosed Celiac- Have Removed Gluten But Still Having The Primary Symp...

Posted by T.H. on 21 October 2012 - 04:25 PM

Also, there's a good chance that you won't always be the only gluten free member of the family. Much easier to make the family gluten free after that!

Your doctor should have told you (but most don't) that if YOU are diagnosed, everyone in your family should now get tested, with or without symptoms (because the disease can be doing damage for a while before symptoms develop). And if they test negative, they are supposed to get tested periodically for the rest of their lives, like every 5 years or so, or if they ever develop symptoms.

Your siblings, children, and parents are in a category where 1 in 22 people have this disease. Your aunts/uncles, cousins, and granparents, it's 1 in 56.
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#831071 Myths About Gluten In Everyday Non Edible Objects?

Posted by T.H. on 20 October 2012 - 01:37 AM

Has anyone checked exactly what percentage the wheat ingredient accounts for against the weight/volume of the product, .00005 percent or 20PPM is considered gluten free (ie. it will not cause the villi to be damaged)


I know that the Gluten Free Watchdog got a couple samples of hygiene products with wheat ingredients and they tested at < 5ppm, as I recall. So for those, at least,
many Celiacs might be fine with using them.

However, 20 ppm IS enough to cause villi damage in some folks. The amount of gluten that can cause damage has been studied multiple times, but the studies do not universally agree on what amount is safe vs. what causes damage.

In fact, when the FDA looked at research and case studies, it concluded that a lot LESS than 20 ppm could cause damage in some celiacs.

In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease [Celiac Disease] on a GFD [Gluten Free Diet] that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from experiencing any detrimental health effects from extended to long-term exposure to gluten. (the FDAs Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease, page 46)


And then they concluded that this would be far too difficult for the industry to meet, and that tests weren't accurate enough to be used industrially to confirm a 1 ppm standard, and therefore 20 ppm would be a better choice.

So while an extremely low amount of gluten might definitely not be an issue for many Celiacs, for some of us, like those here who react to lower levels of gluten, it can be a problem and cause actual intestinal damage.
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#829784 Wine Barrels Sealed With Gluten

Posted by T.H. on 14 October 2012 - 11:50 AM

I was happy to see that wine from barrels sealed with gluten were finally tested. There is also some information on wine, oak barrels, sealing barrels with wheat and how common it is.

You can find the information here: http://www.glutenfre...g/blog.php?id=8

The good news is that the two tested wines were <10 ppm on the Competetive R5 Eliza and <5 ppm with the sandwich Eliza. The testers used both tests because the Competetive R5 is aimed at detecting pieces of gluten, which the sandwich Eliza is not as good at. "...both the Food and Drug Administration and the TTB believe that currently there are no validated methods available to accurately assess the gluten content of fermented products. This is because the competitive R5 ELISA has not been formally validated in a multi-laboratory ring trial."

I figure even with the slight uncertainty, these test results may come as good news for folks who are fine with foods that have gluten at the above concentrations. It's not 100% yet until they get the test validated, but still, very nice to get the information. :-)
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#827850 How Come Gluten Didnt Bother Me In Italy

Posted by T.H. on 06 October 2012 - 10:15 AM

One possibility might be that your reaction that you consider a gluten reaction might actually be a combination of things you react to when they are together, or the gluten reaction is worse when you react to something else at the same time, or sometimes not even a gluten reaction at all.

Sulfite allergy is one thing you can check that actually sounds entirely possible, based on your experience. (http://holdthesulfites.com/ )

1. Sulfites are much more prevalent in foods in the USA than in Europe, so you'd run into them less over there. I know a lot of sulfite sensitive folks in Europe now and they have SO many fewer reactions than folks here in the States.

2. Sulfites very commonly show up in the same places as gluten, at least here in the USA. They can be used to bleach certain ingredients used in glutenous products, for example. For myself, it took me a while to separate sulfite reactions from gluten ones, because so often, the ingredient that caused me to react had BOTH sulfites and gluten. The sulfites, however, often wouldn't be listed on the label because they were part of the 'processing.' :-(

3. Massive headaches are a common symptom of sulfite allergies. I know for myself, and some others, sleep issues are part of my reaction, too.


If sulfites WERE an issue, wine would be one thing that makes you very sick feeling, as this has a high level of sulfites.



There are many other differences between the food supply in the USA and Europe's. From what I've read, they're using fewer pesticides, fewer GMO's, fewer of the nastier pesticide chemicals, and even sometimes different processing techniques that can result in different end-product components. One thing the latter applies to is dairy pasteurization, I understand. Two different ways to do it, and two different end products. Some people react to the end products in American processing, but not to those in European processing. Weird, huh?


Re: the gluten in Europe being different. Not different enough, I'm afraid. Celiac Disease is as prevalent in Europe as it is here and they have to avoid wheat just like we do here, even in Italy. I have Celiac relatives in Europe and they have to avoid gluten, too. My American father gets just as sick from contamination there as he does here, even with Italian wheat. No difference in reactions at all.

If you truly did not get sick when eating gluten and wheat over there, but do you do here, you might want to consider whether you received an accurate diagnosis. Tests aren't perfect, after all. It could be an ingredient or additive that is commonly found WITH gluten/wheat that is a problem for you, instead. Although that's just speculation, of course. :-)
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#827771 Bystolic Medication? Gluten Free Or Not?

Posted by T.H. on 05 October 2012 - 05:17 PM

If your mom is getting gluten, it's also possible that this could be contributing to her anxiety. Many of us have panic attacks, heightened anxiety or sudden depression as a reaction to gluten.


For myself, my emotional symptoms are that everything starts to feel more stressful, more upsetting. My frustration tolerance takes a nosedive, and my ability to concentrate and think clearly crashes. If I get it continually, I'll have a long bout of severe depression until I get the gluten out of my system.


My daughter has full blown panic attacks that will last hours, on and off for days after she's been glutened.

So while your mother's anxiety may be extreme, it may actually have a physical cause as opposed to a metnally induced physical cause (psychosomatic, in other words), if that makes sense?
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#827526 Mcflurries?

Posted by T.H. on 04 October 2012 - 02:05 PM

I'm assuming the statement was made with regards to foods sold in the USA, because we have no regulations in effect yet to regulate the gluten free label. It is completely legal to make a gluten free claim with different levels of rigor, some of which are not rigorous enough.

Companies that make the claim that a product is gluten free, but do not test their products for gluten so cannot actually confirm that their products ARE gluten free, are not uncommon. Testing standards can differ widely. Some companies test every batch, some test batches periodically, some only test batches when the product is first being produced, some test ingredients going in and don't test the final product at all - it's all over the map.

If there is no testing or only periodic testing, contaminated batches can fall through the cracks and make us sick. Or sometimes it is 'naturally' gluten free goods that contain gluten above the 20 ppm that most people consider a gluten free standard.

Although to be fair, I've noticed more companies start testing their products over the last year or so, so that's good news.

However, as you wanted some examples, here's just a couple. :-)

Food for Life tortillas - some lots tested at an independent lab show above 20 ppm of gluten. The gal who had these tested made sure to contact the company so that they could hopefully correct whatever problem was causing the contamination, so perhaps that has been addressed now. The original blog posting regarding this has a broken link, but here is a link to another blog reporting on it: http://glutenfreemom...-tortillas.html


In the above link, it also mentions a study done on naturally gluten free grains and flours, where about 32% were above the 20 ppm standard. The original article for that is no longer up on the web, either, sadly. What I do remember is that some of the flours tested were significantly above 20 ppm. One soy flour was over 2,000 ppm of gluten. 0.0 The study itself declined to mention which brands were tested, however, so we're unable to locate those particular brands.


In September, 2011, when I last contacted Boulder Canyon Chips, they tested the lines for their gluten-free potato chips during a certification period to ensure they were gluten free. After that, the chips are never tested again to ensure that they remained gluten free and uncontaminated unless there was a change in ingredients. Again, this was a little over a year ago, so that may have changed by now.

That's just a few examples, but there are others if you look. Most of the big name companies seem to be testing at least periodically now, that I know of.

However, another potential issue for those who are more sensitive is tracking down the original information for what is 'gluten free.' A great example of this is many of the Frito Lay chips - which I know many here can't eat, but it's a good example so I'll use it.

On a lot of websites with lists of gluten-free chips, they will list a whole slew of Frito Lay chips, like certain varieties of Doritos, Cheetos, Funyuns, and so on. If you hunt down the website, however, you find out that Frito Lay has not made the claim that these chips are gluten-free. Frito Lay has a few chips that they test for gluten, and then a much larger group of chips that they do not add gluten to on purpose, but do not test and do not have them in a situation to keep them as free from gluten contamination.

On their site (http://www.fritolay....ngredients.html ) they list a lot of their chips in the 'no gluten ingredients' category. But this gets passed around the webosphere and becomes 'gluten free' when even the company isn't making the claim.


Also, sometimes on the sensitive section here, people get frustrated because we'd love a reality where 'gluten free' meant '0 ppm of gluten.' That's not the reality, and it's not something that can even BE a reality at the present time and with the present level of technology. But for some folks who react to less than 20 ppm in quantities they would eat during the average day, the gluten free standard doesn't adequately protect their health.


Oh, for the latter? Even the FDA has recognized that the 20 ppm standard is a potential issue for some Celiacs. In the FDAs Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease, on page 46, it says:

In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease[celiac disease] on a GFD[gluten free diet] that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from experiencing any detrimental health effects from extended to long-term exposure to gluten.


So, for some of these folks, a 20 ppm standard is a LOT higher than is safe for them, you know?
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#824858 Psychosomatic

Posted by T.H. on 22 September 2012 - 12:22 AM

As anyone reading the 'vapors' post recently noticed, there's something that comes up in the super-sensitive section periodically. Someone mentions a reaction that many don't think is possible, and during the course of the discussion of 'possible' and 'not possible,' the idea that the original poster may be having psychosomatic reactions comes up. And the poster is usually told that this is likely the problem by at least a few folks.

And things seem to get a bit heated after that.

This has happened often enough in this section that I thought it might be appropriate to actually discuss this as an issue in and of itself. Because some of us don't find it offensive, and some find it extremely so. I'm hoping this might be a place we can open a dialogue about this, without it becoming personal, or about a specific problem or situation. :-)


I'll be upfront: I would not tell someone that I thought their reactions were psychosomatic. Even if I thought they were, I wouldn't. So that's the side I'm going to come from. I'm sure there will be plenty of folks to further the discussion on either side, if there's interest.


In a pretty large nutshell, here is why I would not tell someone that their reactions are likely psychosomatic:


If someone claims that they had a reaction and someone else doesn't believe that this reaction is possible, I don't think anyone has an issue about that, generally. We can disagree about whether a physical reaction is possible or not, or about how we think Celiac Disease works, or what can cause a reaction.

Responding with our disbelief is a statement of our opinion about a physical reality. 'I don't think this response is possible in this situation. I don't think Celiac Disease works that way. I don't think gluten is present in this place, or if it is, I don't think it would be in great enough amounts to cause a reaction.' We can even provide research, facts, anecdotes, whatever, to back up our opinions.

And that? That's not offensive. It can lead to some major disagreements, yeah, but it's opinion based on our own experiences and research. It can be polite, and specific, and often helpful to all of us reading it.



However, when someone is speaking about their reaction, we know only a sliver of information about the original poster. We don't know their personality, all the details about their situation, or how their mind works. We may have some information to make an informed opinion about a situation with regards to the gluten, but we don't have enough information to make an informed opinion about them. So if we're giving an opinion about this person's mental health and how that is probably affecting their physical health? It suddenly becomes very personal.

If we tell someone that they are having a psychosomatic reaction, we're stating a strong opinion about something we know nothing about: someone else and their mind. If a person were to write about how nervous and worried they are all the time and that they are looking for help in coping, I would think a discussion about how psychosomatic reactions work would be appropriate. But I really don't see how commenting on someone's mental health is warranted when they are merely sharing an observation about their own experiences, which seems the most common time for this comment to pop up.


I imagine many of us have had this exact, same label applied to us before we were diagnosed. When so many of us had symptoms that didn't match up to what a doctor was testing for and they decided we must be having psychosomatic symptoms. And in that situation, we might have come up some odd theories to try and explain our symptoms. We might have been completely wrong. We might have figured some of it out, but not all. But being incorrect about what caused our symptoms did NOT mean that our symptoms were psychosomatic.

When a doctor, knowing nothing about us or how our minds work, makes this assumption, it feels like a dismissal of our pain AND our ability to observe and reason as we try to solve why we have this pain in the first place. It's not their intention, obviously, but that's what the patient is left with.

It feels no less unpleasant when it happens in a group, however well-intentioned the members may be. Disagreeing with a person's conclusions is one thing. Commenting on the state of their mind during the course of a disagreement is quite different.
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