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I haven't browsed here in a while so there may be other threads about this but thought I would share a recent event. I have been using "assist/defense" pills for years. I never have been brave enough to truly "test" them to see if they really would keep me from getting sick if ate glutens. I am VERY sensitive and travel alot so I have to trust that things I'm eating have been made with TLC. When my local store quit carrying the Gluten Defense that I've taken before every meal when I'm not in control of the food preparation, I tried Me+My Gluten Assist from Wal-Mart (scary in itself). I know my local Wendy's has some CC issues on their fries due to the oil overflowing between nugget and fry vats. I was really craving their fries and sent through their drive thru. I came home, took 1 Gluten Assist and began eating. Within about 15 minutes I could tell I had CC fries as my gut started to turn inside out. The package from the pills says to take one before consuming.... an additional pill may be taken if needed. We always laughed about that as if needed meant in my case that it was too late. Well, I took a second one and within 15-20 minutes my gut had settled and balanced itself out and I did not have the massive reaction that I get when I eat glutens. Having been dx'd in 2005 I've been at this a long time and do realize that I could be harming my villa even if I'm not "getting sick" but considering the FDA allows companies to label things as gluten-free if they have less than the 20ppm, I feel that the minimal CC from the fry vats can't be doing too much damage for the occasional splurge like this night.  I say all this to let you know that there is some validity to the "assist" pills that can help avoid a horrid reaction from the occasional CC. I can no longer find it at Wal-Mart but CVS has been carrying it near me. It was about $12 for 30 pills. I feel it's worth the $.40 per meal to have that little bit of help when I'm not in control of my food.

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NOTE, any kind of CC sets you back, your body is creating antibodies as soon as it detects the gluten and these can take over a week to calm down and up to a month. All the time you body will be damaging itself on the inside. THEY do not suggest these kinds of ANTI GLUTEN  pills to celiacs not even the new ones that just came. They are more intended to those with non celiac gluten intolerance. Read the news article on the newest of these kinds of enzyme pills and their effectiveness. It states they recorded a average of 85% less gluten in the intestines using the pills. While this will help reduce the initial symptoms, and help you get over it faster they are not a miracle pill to let you eat gluten and intended for those with a intolerance NOT celiac http://www.worldhealth.net/news/enzyme-blocks-gluten-AN-PEP-intolerance/

REMEMBER these pills are NOT made for people with celiac as our bodies produce antibodies with even trace amounts of gluten. Even if your symptoms seem less pronounced your still doing the damage.  Might keep them for chances of CC but  try not to risk hurting your self it is not worth it. Perhaps you can get a air fryer or deep fryer and make your own fries, or bake some.

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Even the ones that are being developed to help Celiacs are not meant for you to eat gluten on purpose and on a regular basis.  

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4 hours ago, kareng said:

Even the ones that are being developed to help Celiacs are not meant for you to eat gluten on purpose and on a regular basis.  

I would never intentionally eat any glutens. I know the damage it WILL cause.  I'm now disabled due to permanent nerve damage that was a result of prolonged B-12 deficiency due to undiagnosed Celiac for probably close to 30 years. I do use these pills as a buffer of sorts when eating something that has been made out of my control. Due to traveling alot with my 13 y/o to her dog show competitions I am forced to eat things I didn't prepare myself. I posted originally to put it out there that they do appear to be more than just a placebo effect since they did settle my stomach and kept me from going into a full blown "episode" which for me is vomiting, diarrhea, passing out from pain and many times GI bleeds. I recently had a new GI tell me that I might as well be taking dinosaur bone powder for all the good "those pills" will do. So I was at least glad they can help avoid a total nightmare if the CC happened. Oh and I am changing GI's since his bedside manners suck, he makes comments like about the pills AND he doubted I actually had Celiac since my blood work came back clear. I told him that is what happens after strictly staying on a gluten-free diet for 11 years and I was told I had it after my biopsy was  done..... UGH I hate drs that won't believe you have some condition if they didnt' dx it themselves..... ok, sorry rant over LOL  

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1 minute ago, chefkaren71 said:

I would never intentionally eat any glutens. I know the damage it WILL cause.  I'm now disabled due to permanent nerve damage that was a result of prolonged B-12 deficiency due to undiagnosed Celiac for probably close to 30 years. I do use these pills as a buffer of sorts when eating something that has been made out of my control. Due to traveling alot with my 13 y/o to her dog show competitions I am forced to eat things I didn't prepare myself. I posted originally to put it out there that they do appear to be more than just a placebo effect since they did settle my stomach and kept me from going into a full blown "episode" which for me is vomiting, diarrhea, passing out from pain and many times GI bleeds. I recently had a new GI tell me that I might as well be taking dinosaur bone powder for all the good "those pills" will do. So I was at least glad they can help avoid a total nightmare if the CC happened. Oh and I am changing GI's since his bedside manners suck, he makes comments like about the pills AND he doubted I actually had Celiac since my blood work came back clear. I told him that is what happens after strictly staying on a gluten-free diet for 11 years and I was told I had it after my biopsy was  done..... UGH I hate drs that won't believe you have some condition if they didnt' dx it themselves..... ok, sorry rant over LOL  

There are some with some science behind them, but I don;t think those are the ones.  So I understand where the doctor is coming from. 

I was reacting to you saying you knew you were eating some fries with gluten but was going to do it anyway.  

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8 hours ago, Ennis_TX said:

NOTE, any kind of CC sets you back, your body is creating antibodies as soon as it detects the gluten and these can take over a week to calm down and up to a month. All the time you body will be damaging itself on the inside. THEY do not suggest these kinds of ANTI GLUTEN  pills to celiacs not even the new ones that just came. They are more intended to those with non celiac gluten intolerance. Read the news article on the newest of these kinds of enzyme pills and their effectiveness. It states they recorded a average of 85% less gluten in the intestines using the pills. While this will help reduce the initial symptoms, and help you get over it faster they are not a miracle pill to let you eat gluten and intended for those with a intolerance NOT celiac http://www.worldhealth.net/news/enzyme-blocks-gluten-AN-PEP-intolerance/

REMEMBER these pills are NOT made for people with celiac as our bodies produce antibodies with even trace amounts of gluten. Even if your symptoms seem less pronounced your still doing the damage.  Might keep them for chances of CC but  try not to risk hurting your self it is not worth it. Perhaps you can get a air fryer or deep fryer and make your own fries, or bake some.

I will look up the article thanks for the link. I do hope my post does NOT give other celiacs the idea that they can eat glutens with these pills. I've been asked repeatedly to participate in trials for these types of pills and I have refused them all. I know the extreme damage that would be caused if I ended up with the placebo pill or even if the pills werent' working 100%. It's taken me too long to recover to where I am now to risk going backwards. You're right I should have ignored the urge for their fries and made some at home but it was one if those things where I was beat and still had tons to do that nights so drive thru was much easier than cooking before being able to finish the tasks at home (well at friends as I was puppy sitting for her while she was out of town with my daughter). So even there, things like the butter, toaster, baking pans, etc could give me CC so I opted for the lazy way to the end of that day. I was just thankful since I was there alone that they worked well enough to keep me from laying passed out in the bathroom for who knows how long.

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5 minutes ago, kareng said:

There are some with some science behind them, but I don;t think those are the ones.  So I understand where the doctor is coming from. 

I was reacting to you saying you knew you were eating some fries with gluten but was going to do it anyway.  

NP... I should have worded it better, as I would not eat them if KNEW they were CC but in general I knew that location is one that has some oil CC issues at times. I would rather have the Gluten Defense ones I'd been using for years but my health food store can't seem to get it straight that they are a special order for me and they put them on shelf and someone else buys them, 3 times now. So when i saw these at Wal-Mart I was like, well likely better than nothing. I'm not one to order things online so with my local health store can't seem to keep them set aside for me, i quit trying and went to these. Thanks for your concern and reminders. I remember what it was like when I was first dx'd and many things I thought I was being safe about were totally NOT safe. ie.... pulling the meat and toppings off the bun is not gluten free eating. Rather now I stand at the counter watching every movement the line cook does to keep CC at bay (and making them start over if they use a tong or spreader that touches buns on regular orders or other gluten-free offenses). I've even taken some newly dx'd friends grocery shopping to help them learn what to look for, what brands taste good and ones that don't, and to makes sure they know that even though an item was gluten-free last time they still need to read the label as it can change from batch to batch.

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A bit off topic (maybe I should create a post), but I encourage EVERYONE to keep copies of all their records.  I changed providers about a year after my celiac disease diagnosis.  When I first met my new GI and my PCP, I handed over a copy of my medical file (20 Years with a cover summary page).   My new GI saw my antibody and biopsy results.  There was NO DOUBT that I have celiac disease.   No one questions my Hashi's Thyroiditis, Thalassemia, diabetes, gallbladder issues, celiac disease, autoimmune hives, osteoporosis, fractures, whatever!  It is well documented (cloud and old-fashioned paper!)

Now, back to the topic.  My glutening symptoms are always changing.  They can be severe or mild. Heck, I had NONE when I was diagnosed (except anemia).  Little did anyone know that an athletic woman would have osteoporosis (some celiac damage is not visible).  I travel, but I am always prepared.  Maybe that is the Girl Scout in me.  I never leave home without emergency food.  I am rarely far from a grocery store.  I have several little ice chests.  I prefer this approach to taking my chances at a fast-food joint, because my reactions last for months (documented by my GI).  

Do these supplements work?  I want hard facts, not some clinical evidence.   Until then, I will stick to a healthy gluten-free diet to heal me.  I have never been a pill popper to begin with (maybe because I am allergic to just about everything).  Glad that these supplements seem help you, but until all the leading experts agree that these supplements are beneficial to celiacs, I am not going to use them.  If the FDA approves a celiac drug, I am going to wait a year.  Yep, I never buy a first model year car either!  ?

 

 

 

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1 hour ago, cyclinglady said:

A bit off topic (maybe I should create a post), but I encourage EVERYONE to keep copies of all their records.  I changed providers about a year after my celiac disease diagnosis.  When I first met my new GI and my PCP, I handed over a copy of my medical file (20 Years with a cover summary page).   My new GI saw my antibody and biopsy results.  There was NO DOUBT that I have celiac disease.   No one questions my Hashi's Thyroiditis, Thalassemia, diabetes, gallbladder issues, celiac disease, autoimmune hives, osteoporosis, fractures, whatever!  It is well documented (cloud and old-fashioned paper!)

Now, back to the topic.  My glutening symptoms are always changing.  They can be severe or mild. Heck, I had NONE when I was diagnosed (except anemia).  Little did anyone know that an athletic woman would have osteoporosis (some celiac damage is not visible).  I travel, but I am always prepared.  Maybe that is the Girl Scout in me.  I never leave home without emergency food.  I am rarely far from a grocery store.  I have several little ice chests.  I prefer this approach to taking my chances at a fast-food joint, because my reactions last for months (documented by my GI).  

Do these supplements work?  I want hard facts, not some clinical evidence.   Until then, I will stick to a healthy gluten-free diet to heal me.  I have never been a pill popper to begin with (maybe because I am allergic to just about everything).  Glad that these supplements seem help you, but until all the leading experts agree that these supplements are beneficial to celiacs, I am not going to use them.  If the FDA approves a celiac drug, I am going to wait a year.  Yep, I never buy a first model year car either!  ?

 

 

 

LOL, on "the Girl Scout in me". I'm a troop leader and YES the gluten-free cookies are safe and if they are the Toffee Tastics, I LOVE them. First year model car, agreed!! Regarding the medical records, I do the same, though this jerk still wanted to question it. I was told back in 2005 when I was dx'd my the neurology dept at the University of KY medical center that i had Celiac and confirmed with a biopsy.

They had me in their dept due to neuropathy issues that they dx'd as Chronic Inflammatory Demyelinating  Polyneuoropothy (CIDP). I have some nerves that are beyond repair as my body healed and I ended up having to apply for disability. Someone in a forum for CIDP said to get all medical records, even if you think they don't associate with it. Also, to print out as much info on the disease to take to my interview since it was an uncommon dx the workers would likely not know much about it and in most cases they will deny instead of researching to make the determination. I did that and was approved and had my first check within 3 months.

I haven't seemed to have been at an ER that was able to use it (so they say) but my mom got me a medical alert bracelet that is a USB drive that ALL my medical info has been loaded into. My last 2 long road trips I ended up in the ER. Only one as GI related, CDif but still having it all onhand can be helpful when  you are too sick to give history. I update it as things happen and meds change (over 30 these days, some PRN) but I also have to get IV infusions every 2 weeks for 2 days due to the CIDP and other autoimmune issues.

I always travel with tons of gluten-free things but too many hotels we stay at (affordability) don't have microwaves and such to cook meals while there. Many of them are unfortunately near BFE as the shows are at parks, farms, etc that can handle anywhere from 100 to a 1000 dogs being judged along with all the grooming areas, parking and in some cases obedience, agility, luring, dock diving, etc events. Thankfully, we mainly travel to the same ones each year and the hotels have gotten to know us, we have learned what safe restaurants are there, what stores I can access and there are even some clubs now that have Celiacs in them so they are sure to have hospitality items that are gluten-free (if they offer anything to exhibitors) and when I'm working and they  offer lunch to the workers. It's mainly the sweets but I at least know which places have access to microwaves, etc and if they put the croutons on the salads or on the side.

Hope all goes well for you and thanks for putting the info/reminders out to everyone about keeping up with all medical records and having them available for new drs. This disease is too often identified only after other things are going haywire within our bodies. I've been to urgent cares, ER and even drs that have to ask what celiac actually is and what it does to me, UGH.

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2 hours ago, cyclinglady said:

A bit off topic (maybe I should create a post), but I encourage EVERYONE to keep copies of all their records.  I changed providers about a year after my celiac disease diagnosis.  When I first met my new GI and my PCP, I handed over a copy of my medical file (20 Years with a cover summary page).   My new GI saw my antibody and biopsy results.  There was NO DOUBT that I have celiac disease.   No one questions my Hashi's Thyroiditis, Thalassemia, diabetes, gallbladder issues, celiac disease, autoimmune hives, osteoporosis, fractures, whatever!  It is well documented (cloud and old-fashioned paper!)

Now, back to the topic.  My glutening symptoms are always changing.  They can be severe or mild. Heck, I had NONE when I was diagnosed (except anemia).  Little did anyone know that an athletic woman would have osteoporosis (some celiac damage is not visible).  I travel, but I am always prepared.  Maybe that is the Girl Scout in me.  I never leave home without emergency food.  I am rarely far from a grocery store.  I have several little ice chests.  I prefer this approach to taking my chances at a fast-food joint, because my reactions last for months (documented by my GI).  

Do these supplements work?  I want hard facts, not some clinical evidence.   Until then, I will stick to a healthy gluten-free diet to heal me.  I have never been a pill popper to begin with (maybe because I am allergic to just about everything).  Glad that these supplements seem help you, but until all the leading experts agree that these supplements are beneficial to celiacs, I am not going to use them.  If the FDA approves a celiac drug, I am going to wait a year.  Yep, I never buy a first model year car either!  ?

 

 

 

I wear red medical dog tags, with my allergies, health issues, blood type, emergency contact info etc on them. Figured they would check them if I ever lost motor control or collapsed due to exposure/cc out side my home.

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Hi chefkaren71,

I use the me+my gluten assist pills also.  I use them when I eat beans mostly, as I seldom get into any foods that might have gluten.  If I take a Betaine  hcl and a me+my GA pill, I can actually digest beans reasonably well.  I'm even able to sleep at night after eating a small amount of them.

I use to get them at CVS, but it seems they are out of them at the moment.  So I am looking for another source.  I think they do help with cross contamination issues, although nothing is a perfect fix.  A little help is better than nothing in my book.  They had an-pep in them, although I see that they are now listed as having Tolerase-G in them.  But Tolerase-G contains an-pep in it so no big difference.

Anyway, I hope you are feeling better and the dogs aren't wearing you out!  I am allergic to dogs and cats myself so I don't envy your daughter's pastime. :)

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I was finding the brand Me+My at Wal-mart and haven't been able to find it in a long time. I'm wanting to say that the brand I have been finding at CVS is simply Gluten Defense or Gluten Assist. Most of the time I find the last box on the shelf but at least there is 1 there. I need to get another box so hopefully they will have some in stock. In my area most all CVS's are inside our Target stores so I don't know if that makes any difference in being able to find it or not.

I am not familiar with the an-pep or the Tolerase-G so I'm not sure about how those may or may not effect me. I'll have to look into them. I haven't ever thought about trying the Gluten Defense for other foods (gaseous mainly) that give me troubles. It's a shame that Bean-O has gluten in it as I could sure enjoy many more favorite foods if I could take that to help my gut not scream at me. 

Best of luck finding the gluten pills soon. My daughter has been busy with school activities so been on a bit of a break from all the dog show weekends so I haven't needed to use them much lately. School only has about a month left and dog shows will get back into full swing, if funds hold up, that is. At least I get a chance to work a few of them over the summer so can help cover some of the costs. Fingers crossed that my health holds up. Been having some neuropathy issues and falls lately so we'll see what happens when I go in on the 14th.

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Hi CK71,

Here is a review of an-pep at gluten-free indy:

http://www.glutenfreeindy.com/an-pep-enzyme.html

There are lots of articles about it online.  Basically the enzyme does seem to break down small amounts of gluten in the stomach.  It's something that may help with cross contamination, but not a full out and out gluten eating mistake IMHO.

I looked at our local Walmart and didn't find them.  But when I went back to CVS they had the me+my gluten assist on the shelf again.  It seems to be cheaper at CVS than other places too.

I think Beano is gluten-free now.  I know it used to have gluten but I think they changed the ingredients.  Anyway, I sent the Beano people a query on it.  I couldn't find the answer on their website.

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8 hours ago, GFinDC said:

Hi CK71,

...  I think Beano is gluten-free now.  I know it used to have gluten but I think they changed the ingredients.  Anyway, I sent the Beano people a query on it.  I couldn't find the answer on their website.

I got a response from Prestige, the makers of Beano.  They say Beano has less than 16 PPM.  They don't label it gluten-free though.  Probably because they do use wheat in part of the production process.  I took some Beano a couple nights ago and didn't have a reaction.

Prestige Brands said:

Thank you for contacting us in regards to your recent experience with Beano Tablets.  Beano contains less that 16 part per million of gluten, so by the FDA standards, it is considered gluten free.  Wheat is used in the fermentation process of the active ingredient. 
Please let us know if you have any other questions.
Kind Regards,
Jake
Medical Affairs
Prestige Brands, Inc.

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The beano tablets box now says gluten free and doesn’t say wheat on the bottle. Should I still be skeptical?

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7 minutes ago, STanner13 said:

The beano tablets box now says gluten free and doesn’t say wheat on the bottle. Should I still be skeptical?

Sounds like they test it for gluten.

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