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Member Since 11 Aug 2009
Offline Last Active Sep 27 2014 10:07 PM

Topics I've Started

Gluten Product Mislabeled As Gluten Free

23 April 2014 - 02:36 PM



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?

Recently Gluten Free But Having Lots Of Allergic Reactions

05 March 2014 - 09:53 PM

I just came across some information that I thought might be of interest in those who are gluten free but have a lot of symptoms and seem to react allergically to many OTHER foods.


There is a somewhat controversial condition known as Histamine Intolerance that is speculated to involve abnormally low levels of DAO, the enzyme that destroys histamine. If histamine levels rise due to this, then they can begin to cause allergic reactions like congestion, headaches, sneezing, itching, rashes, hives, even breathing issues, or stomach and gut problems.  


Some women can even experience a cessation of their allergy symptoms when pregnant, because the placenta releases high levels of DAO and so histamine breaks down faster. 


The reason this may be of interest to Celiacs or gluten intolerants is because one of the places DAO is found in the membranes of cells lining the small intestine, and in the upper portion of the colon. So people with damage in either of these areas may not be making as much DAO as they normally would. 


So if you are recently gluten free, haven't healed up yet, and are having many allergic reactions, it might be worth you while to check out histamine intolerance and a low histamine diet, too. :-)

That Moment When You Find The Answers To It All

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. :-)



Pure Spices

04 September 2013 - 06:49 PM

The below link is to an article about a recent Canadian study on spices. 63 out of 268 pure spices tested positive for gluten. The range of detected gluten was 5 ppm - 20,000 ppm gluten, however the majority of spices with higher contamination were not domestically processed. And the one with the highest test result is considered to probably have had wheat illegally added.

All spices that tested positive were ground, and the positive tests were on: clove, coriander, cumin, fenugreek, mace, sage, thyme, and white pepper.