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Washingtonmama

Dont get mad, but whats the big deal about 20 PPM?

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I know what it means, and some people are SEVERELY sensitive to it. I have almost no symptoms when I get a tiny bit of gluten. I get gunk running down the back of my throat for a day or two, maybe diarrhea if I eat a bite of something with wheat. What kind of damage does a fraction of gluten do? How severe is it? How long does it last? Do I even need to avoid fractions of gluten? I was just diagnosed last week, so Im still learning. 

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Just focus on avoiding gluten.  You will know soon enough if you are super sensitive or not.  There is no way to tell, unless you get scoped all the time or you have DH.  Celiac symptoms can change. I was just anemic when diagnosed.  I probably had a few other symptoms that I chalked up to menopause (like anxiety or irritability --- and who would not with 30 day periods!), yet I had moderate to severe patches of villi damage.   Now, I get the classic gut symptoms when exposed to gluten.  

Unfortunately, researchers really don't want to spend anymore time studying this.  They probably  needed a cut-off for the food manufacturers and to implement current laws and regulations.  But we all know that celiac disease is not simple and it's not "one size fits all".  I can tell you that some members eat out  and consume lots of gluten-free processed foods that are not even labeled gluten-free.  They have had follow-up biopsies that have shown no villi damage.  Others are on the gluten-free diet and still have damage.  The point is no one knows for sure.  You just have to figure it out in your own.

Just keep moving forward!  

 

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Celiac is a Autoimmune disease, your body reacts in a similar fashion to the gluten proteins as it does to a germ. A tiny bit will trigger the immune response and your body will release the antibodies to try to attack it damaging your body in the process more or less as a mistaken collateral damage. The antibodies will remain high for weeks afterwards slowly stepping down in response just to make sure they killed it.     NOW in relation to the PPM in the US 20ppm is what is the government required maximum a food can have to be labeled gluten free. Some other countries have it lower, in Europe many have a 5 or 10ppm rule and Australia was pushing for a 0ppm rule.  

As for how you react we are all different, and other things come into the equations for how much of the actual gluten gets to your system. When in very minute amounts below 20ppm and a bit higher the gluten proteins might get damaged, or blocked from being absorbed during food prep, and digestion processes if your lucky, or your body will fight them in the background without having to go completely crazy.  

For me it is really odd, some times I think I get a bit of gluten, and notice a tiny bit of brain fog and less feeling in my hands and feet. Maybe a bit looser stools in very small amounts (Been using a product I sent to a lab for testing at 6ppm and notice these when I consume 1/4 cup of it)  I know other times I have gotten pretty sick from a crumbs, complete fog and dazed from inhaling flour walking through a bakery. 

Now last time I got a full blown gluten attack was from eating out, I had a tiny bit of pulled chicken over salad and steamed veggies, I later learned the chicken had been dredged in four, and they did something a bit special for me for the veggies freshly steaming them since the ones they had already done were butter coated.....well they fresh steamed them over pasta water.   Felt it coming before it hit and rushed home got in the door and, loosing complete motor control dropped to the floor, convulsing in pain and vomiting for hours in my door way. I had a friend who was watching over me, they actually thought I was dead at a few points saying I turned completely white. I wear a fitness monitor and my heart rate for a hour or so dropped to the 32-36 range.  After 7-8 hours I was able to get to the couch and sleep the rest of it off with D all the next day. I then called the restaurant and learned about chicken and the veggies......The manager apologized and it seems the issues was a mis communication and misunderstanding with the chef and the waiter when I told them about my list of allergies and celiac disease. They were not to detailed on it and I have never been back to Red Hot & Blues since.

I do not think you should worry much, just stick to washed naturally gluten-free whole veggies, fruits, meats. And Certified gluten-free foods and you should be just fine. Some naturally gluten free foods in cans and frozen can be safe from certain companies, NOTE if the company does a sauced version or other things that contain gluten think twice.  Always read ingredients and allergen warnings on anything you buy.

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20 PPM is what the FDA set as an upper limit for labeling foods gluten-free in the USA.  But the research they based it on had some participants drop out due to symptoms at that level.  So some people can and do react to lower levels than 20 PPM.

Your immune system "sees" microscopic germs and attacks them.  You can't see those germs with your naked eye.  But your immune system detects them and reacts to kill them.

Edited by GFinDC
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Ok I understand now. You eat a tiny particle of gluten, and your body, in trying to protect itself, actually attacks itself. It keeps attacking and doing damage for a few weeks, even though you have no idea what's going on. Is that correct? Thanks for your help everyone! 

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Ennis, all I can say is OMG to what happened to you at the restaurant! Geeze! Can you actually die from that kind of reaction? Is there anything they can do at the hospital to help? 

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30 minutes ago, Washingtonmama said:

Ennis, all I can say is OMG to what happened to you at the restaurant! Geeze! Can you actually die from that kind of reaction? Is there anything they can do at the hospital to help? 

Many of us have reactions that get us put in the ER, not much they co do for it, not quite a gluten ebipen yet lol. Plus side I just heard recent news of a new vaccine that turns off the T cells for the gluten antibodies or something like that that is in clinical trials.   I decided to wait it out and just put up with it. at that time I had no insurance so hospital was not a option and nothing they could have done to my knowledge.  

You see the reason why some of us are overly paranoid, if you get that kind of reaction a few times your scared and overly cautious about everything. Washing your hands, not eating out, using expensive test kits, always having emergency meals laid out, and covering your food prep surfaces with freezer paper. Heck I even bring plastic utensils, cups, and bowls when I eat outside my house. Scariest thing in the world is having your own mind and body not do what you want. lol I fear how I would react to a prank if someone did something with gluten or flour on purpose.

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1 hour ago, Washingtonmama said:

Ok I understand now. You eat a tiny particle of gluten, and your body, in trying to protect itself, actually attacks itself. It keeps attacking and doing damage for a few weeks, even though you have no idea what's going on. Is that correct? Thanks for your help everyone! 

Pretty much. It gets complicated because for some of us it's not just a digestive issue. Gluten messes me with in many ways, of which the digestive is very much a minor player. The neurological aspects are worse for me and they take a lot longer to go. I get depression, brain fog, anxiety, eye issues, nerve stuff etc. I get back pain, chest pain, skin rashes. It's bizarre really and not easy to explain to someone who hasnt experienced it. I'm sure lots of people think I'm nuts. :)

Two links for you which would do a better job than I could. Check out gluten man http://www.montana.edu/mountainsandminds/2012/fall/celiac.php and see what a range of symptoms can be. For some the tiniest exposure can trigger any one or more combination. 

There's a good article here which shows some of the theories how gluten in the gut can affect the brain: https://www.nytimes.com/2014/10/12/opinion/sunday/can-celiac-disease-affect-the-brain.html

Hope these of interest :)

 

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Antibody reactions to a given amount of antigen (gluten) vary greatly from person to person.  Even if you're trying to create antibodies in very, very inbred animals that are almost identical genetically, the amount of antibodies they will create varies a lot.  If you're lucky you won't be in the super sensitive geoup.

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You would think that there is enough people out there, people with celiac disease, that we'd be able to push for a better standard than 20ppm. The problem is the FDA. Too much lobbying involved. It's no different than the fight people are having with Monsanto. I hear that there are several medications that are showing promise in Canada who I think also has a better standard than us.(not positive about that though)

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On 4/24/2017 at 7:28 AM, pdm1981 said:

You would think that there is enough people out there, people with celiac disease, that we'd be able to push for a better standard than 20ppm. The problem is the FDA. Too much lobbying involved. It's no different than the fight people are having with Monsanto. I hear that there are several medications that are showing promise in Canada who I think also has a better standard than us.(not positive about that though)

The reason they set the limit at 20ppms is that through scientific study, they have proven that the vast majority of people with Celiac Disease do not have an autoimmune reaction to amounts below that......it is a safe limit for most.  Also, just because that limit is set at 20ppms, does not mean that gluten-free products contain that amount of gluten.  Testing for lower levels becomes more expensive with each increment down closer to 0-5ppms, which translates into higher priced products. Unless you eat a lot of processed gluten-free food, which can have a cumulative affect for some, most people do well with the 20ppm limit. 

 

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