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Question About Gluten Enzymes And Gluten Intolerance.


rueyn

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rueyn Apprentice

I tested negative (blood and gene) for Celiac, but I definitely have gluten intolerance. I've been gluten free for a year now and am doing 100% better. I've been seeing and hearing about gluten enzymes, and I know they can't be used in the case of true Celiac patients, but has anyone ever used them as with non-Celiac gluten intolerance? I don't get stomach aches when I eat gluten; my symptoms are things like brain fog, the need to sleep, et cetera. I'm not convinced an enzyme would make a difference with those kind of symptoms...unless the enzymes got rid of all the gluten before it could be absorbed or something like that?

Any personal experiences would be appreciated.


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Lynayah Enthusiast

I tested negative (blood and gene) for Celiac, but I definitely have gluten intolerance. I've been gluten free for a year now and am doing 100% better. I've been seeing and hearing about gluten enzymes, and I know they can't be used in the case of true Celiac patients, but has anyone ever used them as with non-Celiac gluten intolerance? I don't get stomach aches when I eat gluten; my symptoms are things like brain fog, the need to sleep, et cetera. I'm not convinced an enzyme would make a difference with those kind of symptoms...unless the enzymes got rid of all the gluten before it could be absorbed or something like that?

Any personal experiences would be appreciated.

I found this article . . . is this the enzyme you are talking about?

Open Original Shared Link

rueyn Apprentice

I found this article . . . is this the enzyme you are talking about?

Open Original Shared Link

Yes, I'm specifically talking about GlutenEase and/or Peptizyde :)

RiceGuy Collaborator

I actually tried one such product (not the ones specifically mentioned). Ironically, even though it claims to be gluten-free, it apparently has an enzyme derived from barley, and I had a gluten reaction to it. Hopefully the ones you're looking at don't have this.

Lynayah Enthusiast

I actually tried one such product (not the ones specifically mentioned). Ironically, even though it claims to be gluten-free, it apparently has an enzyme derived from barley, and I had a gluten reaction to it. Hopefully the ones you're looking at don't have this.

Me, too. We had a few different digestive enzymes in the house -- all of them appeared to be gluten-free, but when I called the various companies and spoke with them, they were not gluten-free.

I have used Digest Gold and GlutenEase with no problem. My jury is still out as to whether or not GlutenEase helps, but I think it very well may. At least it can't hurt! I use it to help combat cross-contamination only and not as something that might allow me to eat gluten -- that would be like death waiting to happen.

rueyn Apprentice

Me, too. We had a few different digestive enzymes in the house -- all of them appeared to be gluten-free, but when I called the various companies and spoke with them, they were not gluten-free.

I have used Digest Gold and GlutenEase with no problem. My jury is still out as to whether or not GlutenEase helps, but I think it very well may. At least it can't hurt! I use it to help combat cross-contamination only and not as something that might allow me to eat gluten -- that would be like death waiting to happen.

Do you know if it's helped in a specific case of cross-contamination? If so, do you normally just get stomachache-type symptoms with CC or do you also get neurological? Did it just "ease" your symptoms, or did it keep you from getting sick all together?

Lynayah Enthusiast

Do you know if it's helped in a specific case of cross-contamination? If so, do you normally just get stomachache-type symptoms with CC or do you also get neurological? Did it just "ease" your symptoms, or did it keep you from getting sick all together?

Ease. I get both neurological as well as stomach reactions.

I get numbness like crazy -- hands in particular, but also legs if it is really bad and now, shoulders and back of neck.

I also get stabbing pains in my hips and kidney area along with the usual bloating, body aches, etc.

Sometimes the pain is constant; other times it comes in waves -- like a few minutes on; a few minutes off -- like labor pains.

The pain might be best be described as having an abcessed tooth, but in a muscle or on my skin (yes, my skin hurts) instead of a tooth.

Sleeping can be particularly painful. Hips - ouch!

I'm still new to the product. Time will tell if my assumption that it helps is correct. Right now, it seems as though when I know I've been cc'd (bowel leakage is usually the first sign), it helps ease the symptoms if I take it right away.

The problem is, I just don't know for sure. I'm still new to my diagnosis. Sometimes the symptoms are intense, other times they are not-so-intense, but the not-so-intense reactions could also be from my being sensitive to other foods.

There is also the issue of my body absorbing enough Vitamin D.

Nothing is easy!

That said, I do have to say that when I take GlutenEase upon the first signs of being glutened, I seem to not get as intensely ill as if I had not taken it. It is not a cure (how I wish it were), but rather a cushion that helps me though the whole thing. My body aches are not as intense (even though I still hurt), and loss of bowel control not as intense. I also think that my bloating may subside a little sooner.

As I said, my jury is still out. In the meantime, it is comforting to carry GlutenEase with me, along with Digest Gold.

Gawd, how I wish they weren't so darn expensive.


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rueyn Apprentice

Ease. I get both neurological as well as stomach reactions.

I get numbness like crazy -- hands in particular, but also legs if it is really bad and now, shoulders and back of neck.

I also get stabbing pains in my hips and kidney area along with the usual bloating, body aches, etc.

Sometimes the pain is constant; other times it comes in waves -- like a few minutes on; a few minutes off -- like labor pains.

The pain might be best be described as having an abcessed tooth, but in a muscle or on my skin (yes, my skin hurts) instead of a tooth.

Sleeping can be particularly painful. Hips - ouch!

I'm still new to the product. Time will tell if my assumption that it helps is correct. Right now, it seems as though when I know I've been cc'd (bowel leakage is usually the first sign), it helps ease the symptoms if I take it right away.

The problem is, I just don't know for sure. I'm still new to my diagnosis. Sometimes the symptoms are intense, other times they are not-so-intense, but the not-so-intense reactions could also be from my being sensitive to other foods.

There is also the issue of my body absorbing enough Vitamin D.

Nothing is easy!

That said, I do have to say that when I take GlutenEase upon the first signs of being glutened, I seem to not get as intensely ill as if I had not taken it. It is not a cure (how I wish it were), but rather a cushion that helps me though the whole thing. My body aches are not as intense (even though I still hurt), and loss of bowel control not as intense. I also think that my bloating may subside a little sooner.

As I said, my jury is still out. In the meantime, it is comforting to carry GlutenEase with me, along with Digest Gold.

Gawd, how I wish they weren't so darn expensive.

Thanks so much for taking the time to let me know how it works for you! It sounds like you and I have similar reactions to gluten, and I'd been thinking since I "only" have gluten intolerance I could use it to eat gluten once in awhile, to help side-step the intolerance, but it doesn't sound like it's worth it (I was thinking of it as Lactaid...doesn't sound like that's exactly how it works).

When I eat gluten I am sick for two weeks - body aches, brain fog, bloating, et cetera. Probably no magic pill to help that =)

Lynayah Enthusiast

Thanks so much for taking the time to let me know how it works for you! It sounds like you and I have similar reactions to gluten, and I'd been thinking since I "only" have gluten intolerance I could use it to eat gluten once in awhile, to help side-step the intolerance, but it doesn't sound like it's worth it (I was thinking of it as Lactaid...doesn't sound like that's exactly how it works).

When I eat gluten I am sick for two weeks - body aches, brain fog, bloating, et cetera. Probably no magic pill to help that =)

You are right. From what I have been told, anyone with gluten-intolerance should absolutely not use it to side-step gluten.

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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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