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LAGurl0823

I ate GLUTEN and I am suffering. Advice please.

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3 minutes ago, MisterSeth said:

dissolving the gluten faster would just expose you to more gliadin wouldnt it? like wouldnt the ideal thing be to avoid metabolizing it at all?

If the gluten isn't degraded or destroyed, liquefying the food that contains it would likely result in a faster reaction because it would reach the small intestine faster. 

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13 minutes ago, Fenrir said:

If the gluten isn't degraded or destroyed, liquefying the food that contains it would likely result in a faster reaction because it would reach the small intestine faster. 

so enzymes that dissolve it would just make it worse, you'd be better off if it got caught in some potato starch and made it to the other end

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18 hours ago, MisterSeth said:

so enzymes that dissolve it would just make it worse, you'd be better off if it got caught in some potato starch and made it to the other end

No, there's a difference between dissolve and degrade. Dissolve just means to turn into a liquid, degrade is breaking the substance down chemically into another substance or substances. If it's being degraded, like AN-PEP does to gluten, it's no longer gluten when it gets to the small intestine. 

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On 2/14/2020 at 8:18 AM, Fenrir said:

No, there's a difference between dissolve and degrade. Dissolve just means to turn into a liquid, degrade is breaking the substance down chemically into another substance or substances. If it's being degraded, like AN-PEP does to gluten, it's no longer gluten when it gets to the small intestine. 

i doubt it actually works

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On 2/15/2020 at 11:20 AM, MisterSeth said:

i doubt it actually works

You can doubt it but the studies are pretty clear that it does. It's not a cure and does not replace a gluten-free diet but I have used it myself (and others on the forums) and the number of times I've had reactions from cross contamination are zero since I started using it. 

 

 

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9 minutes ago, Fenrir said:

You can doubt it but the studies are pretty clear that it does. It's not a cure and does not replace a gluten-free diet but I have used it myself (and others on the forums) and the number of times I've had reactions from cross contamination are zero since I started using it. 

 

 

No, the studies are NOT very clear.   If they were, leading celiac research centers would be recommending an AN-PEP as a treatment for the prevention or reduction of cross contamination (not a replacement for the gluten free diet).  But it MAY help.  Everyone has to decide for themselves.  

Exactly when did you start using an AN-PEP? What circumstances?  Maybe share this in the AN-PEP discussion I started last week.  

 

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11 minutes ago, cyclinglady said:

No, the studies are NOT very clear.   If they were, leading celiac research centers would be recommending an AN-PEP as a treatment for the prevention or reduction of cross contamination (not a replacement for the gluten free diet).  But it MAY help.  Everyone has to decide for themselves.  

Exactly when did you start using an AN-PEP? What circumstances?  Maybe share this in the AN-PEP discussion I started last week.  

 

The studies are very clear. AN-PEP does reduce the amount of gluten that makes it into the small intestine. In that thread it's been pointed out many times that there are clear studies on humans that shows that. The only thing that hasn't been shown is studies using celiacs but that doesn't mean that AN-PEP doesn't work, because the studies show that it does. You keep stating it's not clear and quite frankly i'm getting sick and tired of you saying that when the studies clearly state that's what it does. 

You might be able to state that it hasn't been tested in celiacs and that's correct but AN-PEP ....IN FACT...has been shown in studies to reduce gluten in the small intestine. 

Now as far as anecdotal evidence, there are at least 3 celiacs on her that I know of that have used it and have noted good results with it. Obviously anecdotal evidence isn't as good as a clinical trial but we've been over this many times as to why these sort of studies haven't been done. You can keep spouting off about the major celiac centers/researchers all you want. Maybe they should put their money into something like this and do a major study on it in celiacs? It is after all the most promising celiac related development recently and could be a relatively inexpensive aid for celiacs to avoid cross contamination reactions. If these "celiac centers" are such advocates you'd think they'd maybe pony up some money to look into something that's already been proven to provide the chemical reaction to break down gluten in the stomach. Only thing really left to do is see how well it reduces reactions in celiacs. 

I'm at the point where I'm not going to respond to this crap anymore. People can use it or not, but you'd do well to stop acting like it doesn't actually reduce gluten in the small intestine when the studies are pretty clear about that and we know for a fact that gluten in the small intestine is what cause the autoimmune reaction. I'm not going to respond to your posts along this line anymore because of the tone and dishonesty, IMO, in your representation of the studies. 

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Wow!  I was just expressing my personal, non-medical opinion, just as you were.  No need to attack me. 

14 minutes ago, Fenrir said:

The studies are very clear. AN-PEP does reduce the amount of gluten that makes it into the small intestine. In that thread it's been pointed out many times that there are clear studies on humans that shows that. The only thing that hasn't been shown is studies using celiacs but that doesn't mean that AN-PEP doesn't work, because the studies show that it does. You keep stating it's not clear and quite frankly i'm getting sick and tired of you saying that when the studies clearly state that's what it does. 

You might be able to state that it hasn't been tested in celiacs and that's correct but AN-PEP ....IN FACT...has been shown in studies to reduce gluten in the small intestine. 

Now as far as anecdotal evidence, there are at least 3 celiacs on her that I know of that have used it and have noted good results with it. Obviously anecdotal evidence isn't as good as a clinical trial but we've been over this many times as to why these sort of studies haven't been done. You can keep spouting off about the major celiac centers/researchers all you want. Maybe they should put their money into something like this and do a major study on it in celiacs? It is after all the most promising celiac related development recently and could be a relatively inexpensive aid for celiacs to avoid cross contamination reactions. If these "celiac centers" are such advocates you'd think they'd maybe pony up some money to look into something that's already been proven to provide the chemical reaction to break down gluten in the stomach. Only thing really left to do is see how well it reduces reactions in celiacs. 

I'm at the point where I'm not going to respond to this crap anymore. People can use it or not, but you'd do well to stop acting like it doesn't actually reduce gluten in the small intestine when the studies are pretty clear about that and we know for a fact that gluten in the small intestine is what cause the autoimmune reaction. I'm not going to respond to your posts along this line anymore because of the tone and dishonesty, IMO, in your representation of the studies. 

Wow! I was just expressing my personal, non-medical opinion, just as you were.  No need to attack me.  

Edited by cyclinglady

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1 minute ago, cyclinglady said:

Wow!  I was just expressing my personal, non-medical opinion, just as you were.  No need to attack me. 

It's not an attack, simply, at this point it's wasting my time responding to posts that say "the studies aren't clear" when they are. You may have an argument if we haven't had one done on celiacs to measure how many reactions would be avoided using AN-PEP. But the science does indicate that AN-PEP is effective in reducing gluten that makes it to the small intestine. Now, we also know that different celiacs react to different amounts of gluten. Some people react to things with less than 20ppm of gluten and others don't. So it may not be effective for all celiacs, but I would certainly say that celiacs should try it when you can't be sure about possible cross contamination and see if it works for you. If you're someone that reacts to foods labeled gluten-free that may have gluten less than 20ppm in them, maybe you shouldn't even try to use AN-PEP because you're so sensitive that ANY gluten exposure makes you react.  However, the best science we have right now is most celiacs won't react to less than 20ppm. It seems by studies and anecdotal evidence that AN-PEP can, in most cases, reduce gluten to a point that cross contamination may not cause a reaction. 

I've even tested the product myself in restaurants and at home and thus far have not had a reaction to cross contamination that used to cause a a reaction. In any case, that's the last post outside of thread specifically about AN-PEP as I fee like it's a waste of time. 

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The fact that we have several "major" support groups/centers in the USA is an issue itself, as they don't agree on everything and have a long history of strong disagreement on many things, so I would not wait around for them to make any decisions for or against AN-PEP anytime soon. There have been pushes in the past to unite the major support groups, but each seems to want to operate independently, mainly due to issues they've had with each other in the past. The situation with multiple support groups in the USA having different positions has not been very helpful to celiacs.

In any case the research on AN-PEP is there if anyone wants to read it, including the major support groups/centers. Personally I believe that the groups and centers are more likely to get behind a prescription FDA approved treatment, no matter how many studies on AN-PEP show that it works. Why, I do not know. I do believe that the prescription treatments we've been following will include side effects and may not be as effective as AN-PEP, but we shall see. I've seen enough research to back up AN-PEP as something that can only be helpful to celiacs and not harmful, especially in a case of accidental gluten ingestion (although it should be taken before or with a meal, rather than later).

There is another thread on AN-PEP where it would be better to discuss the research, as this thread is about accidental gluten ingestion. Based on the research I've seen I do think it is fair to recommend AN-PEP to anyone who accidentally eats gluten. 

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Exactly @Scott Adams 

In my six years as a celiac and being quite curious looking into celiac related issues it's quite clear that the there is a wide range of disagreements among the many celiac organizations. IMO, there are too many celiac organizations, seems there is a little too much territorialism in the celiac organizations for my liking. And like you said, there's little agreement on many subjects between them. 

I think if you are fairly knowledgeable about celiac disease the variation between the organizations makes them pretty useless to you. The only thing there's wide ranging agreement on between them is the basics of celiac disease, after that it's kinda iffy. 

Also, the fact that many celiacs somehow are completely unaware that these "major celiac organizations" even exist brings into question what impact they really have. I'm not appreciative of the efforts of the organizations or that there isn't a need for them but I don't think we should hold them in the same regard as organizations like the American Heart Association or American Cancer Society..ect.  These organizations have much greater imprint on  their fields, fund greater efforts in research..ect. They also get much more funding than the celiac organizations so it's not for lack of effort. Just we need to keep things in perspective here. 

Personally, I don't really think any of these organizations have had more impact on me than Celiac.com has had or just me simply reading information available from the Mayo Clinic...ect. However, these major medical organizations are not even going to consider anything not approved by the FDA, they have no choice due to malpractice lawsuits and legal wrangling. If we didn't have the ridicules tort laws that we do places like the Mayo Clinic may in fact prescribe AN-PEP products for celiacs. 

I work for a medical company and I can tell you that tort insurance is very expensive. For instance , for one OB/GYN doctor a health care company can expect to have to pay $500k-$1m per year in tort insurance. Why? A Dr. makes one honest mistake and the company gets sued for $200m. Heck, even you are average family practice Dr. will cost $150-$200k to insure and they're the lowest risk. 

Also, there should be a distinction between celiac oranizations  like the Celiac Disease Foundation, Nationa Celiac Foundation, National Celiac Association, SSCD and health care organizations like Mayo..ect

They are all connected really, on this subject at least. Mayo, University of Chicago..ect will never suggest anything not approved by the FDA because of torts. The celiac organizations only go on these major health care companies. You see the issue? 

No matter the amount of research that says something works, if the FDA doesn't approve it, Mayo wont because they're affraid of torts and the celiac organizations say the same thing because they cite Mayo and similar places for their knowledge base and also not wanting to be sued. 

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On 2/14/2020 at 9:18 AM, Fenrir said:

No, there's a difference between dissolve and degrade. Dissolve just means to turn into a liquid, degrade is breaking the substance down chemically into another substance or substances. If it's being degraded, like AN-PEP does to gluten, it's no longer gluten when it gets to the small intestine. 

This is exactly what AN-PEP does. It breaks down the gliadin molecule into small sequences of aminoacids (smaller than 8 aminoacids) and then it does not act like gluten anymore. 

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15 hours ago, cyclinglady said:

No, the studies are NOT very clear.   If they were, leading celiac research centers would be recommending an AN-PEP as a treatment for the prevention or reduction of cross contamination (not a replacement for the gluten free diet).  But it MAY help.  Everyone has to decide for themselves.  

Exactly when did you start using an AN-PEP? What circumstances?  Maybe share this in the AN-PEP discussion I started last week.  

 

The studies are done by leading celiac research centers but they happen to be in Europe and not in the US because the product was developed in Delft and the closest University to Delft is Leiden. The University of Leiden is one of the oldest in Europe and Dr. Frits Koning who wrote several of the papers is a leading expert. Dr. Julia Koenig (not related) is a leading expert. Dr. Jericho and Dr. Guandalini who wrote a review paper are leading experts. Dr. Stepniak is a leading expert. Dr. Murray, wrote about it more cautiously but certainly at least a little optimistic is also a leading expert. Dr. Luppo Edens who invented AN-PEP and worked together with Maike Bruins are leading experts. Indeed, the statements are cautious but very optimistic because they want to be truthful and not misleading but not one single expert has suggested that it has no effect. 

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14 hours ago, cyclinglady said:

Wow!  I was just expressing my personal, non-medical opinion, just as you were.  No need to attack me. 

Wow! I was just expressing my personal, non-medical opinion, just as you were.  No need to attack me.  

Your personal opinion is presented in a very strong way suggesting that you have a deep understanding of the subject. You have been presented with studies and you are discounting them and suggest either that they do not exist or that their are faulty. You discount the tremendous work that was done in actual humans, in the most sophisticated GI model and with the most sophisticated essay tests. You suggest that the researchers are not leading experts and only the ones you have in mind are leading experts and unless they express a clear opinion, you advise against AN-PEP. At the same time you suggest that this is only a personal opinion. What happens if someone takes a 50 cents capsule and it does nothing? What happens if someone does take a 50 cents capsule and it does break down the gluten before it can cause damage.

Are you really that confident that all the research is worthless and in absence of anything else, they should not take an extra step of precaution even if it has only a small chance of being helpful? Really?

I think that it has a very big chance to be helpful but in the worst case scenario would even a small chance of making things better not be better than nothing? Are your recommendations helping or hurting someone? I hope you take a good look at the actual work that was done and read it and ask a lot of questions about the work and not about who commented on it or did not. If my family would have listened to your recommendations, our lives would have been very negatively impacted over the last years. 

 

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On 2/1/2020 at 9:22 PM, LAGurl0823 said:

I feel your pain...my symptoms are different than more which always freaks me out as I feel like maybe something else is really wrong with me.  I am not losing weight as I cannot go to the bathroom at all since I glutened myself.   I also don't have stomach pain, but I know when I eat it will be moments later that I will get the worst headache of my life.  It will be a headache that makes me think I am having a stroke.  The worst pressure behind my eye and nausea.  I don't even want to eat as everything and anything causes this to happen, but it will also happen when I am hungry and need food.  I hope this too shall pass for myself and everyone else.  Anyone else have the head stuff I am speaking of?

 

I feel your pain...my symptoms are different than more which always freaks me out as I feel like maybe something else is really wrong with me.  I am not losing weight as I cannot go to the bathroom at all since I glutened myself. (a month and I went maybe twice....and when I d go it drums up all the symptoms again too)   I also don't have stomach pain, but I know when I eat it will be moments later that I will get the worst headache of my life.  It will be a headache that makes me think I am having a stroke.  The worst pressure behind my eye and nausea.  I don't even want to eat as everything and anything causes this to happen, but it will also happen when I am hungry and need food.  I hope this too shall pass for myself and everyone else.  Anyone else have the head stuff I am speaking of?

Hi LAGurl,

As CL said, some people get migraines with celiac damage.  Another possible cause of your head symptoms is nerve damage.  In some people celiac can attack the nerves including the nerves in the brain.  When that happens and it affects the ability to walk they call it gluten ataxia.

Some things I find helpful are peppermint tea, Pepto Bismol and Milk of Magnesia.

There is a whole separate thread on AN-PEP if you want to read about that.  But since your glutening is over/in the past by month or more those enzymes are not going to help at all.

Getting over a glutening can take a month or 2, sometimes more.  The immune system reaction doesn't stop quickly.

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7 minutes ago, GFinDC said:

Hi LAGurl,

As CL said, some people get migraines with celiac damage.  Another possible cause of your head symptoms is nerve damage.  In some people celiac can attack the nerves including the nerves in the brain.  When that happens and it affects the ability to walk they call it gluten ataxia.

Some things I find helpful are peppermint tea, Pepto Bismol and Milk of Magnesia.

There is a whole separate thread on AN-PEP if you want to read about that.  But since your glutening is over/in the past by month or more those enzymes are not going to help at all.

Getting over a glutening can take a month or 2, sometimes more.  The immune system reaction doesn't stop quickly.

My symptoms were mainly joint swelling and neurological. I had bloating and gut pain but none of the other GI symptoms most others have, it seems. I had migraines, nerve pain in my hands and feet. I actually had trigeminal nephropathy something awful when I was eating gluten. All of the neurolgical stuff went away within a month of going gluten-free. 

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I don't believe that this thread has gotten off topic in a way that has been unhelpful to @LAGurl0823, or to others who may find this thread at some later point, and evolved in a natural way to discuss enzymes that are widely available.

If the OP had known more about AN-PEP before this happened she might have taken a few of them beforehand and had far less issues afterwards. Celiac.com doesn't ever recommend deliberately eating gluten, however, many surveys have shown that 20-25% of celiacs and/or gluten sensitive people cheat on their diets regularly, my daughter being one of them.

My daughter is 14 and although I've explained to her over and over the issues gluten could cause her, I cannot control her. She has agreed to take AN-PEP whenever she cheats. She is technically gluten sensitive--high antibodies but no biopsy, and a family history of celiac disease. She doesn't cheat often, at least according to her, but when she does she no longer has symptoms. I will get a celiac blood panel at her next physical and report how things are going.

So although this may have seemed a bit much for the OP, I hope she has learned something here. At the very least, knowing this may help her with any future cross contamination issues.

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