Lynayah

Wow -- I've read everywhere that envelopes are problematic. That's news to me. Thank you for posting your reply!

I am now about 6 months into being diagnosed. There is so much to learn!

As for pressure-adhesive USPC stamps -- they are wonderful, but if my fingers touch the sticky side, is there a risk of cc if I touch something else and then put it in my mouth? In other words, is there a chance of ANY gluten in there -- envelopes with corn starch, adhesive stamps, Scotch Tape (or any brand) . . . whatever.

And what about the stickies on fruit, honey, broth, etc?

Of course, the anal side of me wonders if the corn starch used is absolutely gluten-free.

Does anyone know?

Me too.

Yep!!

You, too? Thank you!

Have you read anything about teeth improving?

I'm so glad I'm not alone!

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.

Wow -- I've read everywhere that envelopes are problematic. That's news to me. Thank you for posting your reply!

I am now about 6 months into being diagnosed. There is so much to learn!

PS: This is probably going to sound crazy, but since going gluten-free, my teeth look better. I swear.

I was always told I had discolored teeth due to being a "Tetracycline baby."

Well, my teeth still aren't pearly perfect, but they do look better. Has anyone else heard of this happening?

Oh my gosh, I can so relate to all of this!

I, too, feel like a new person, even though I'm still struggling with getting things normalized, I'm feeling SO MUCH BETTER than I have in many years . . . maybe even in my life.

The brain fog lifting was the most dramatic thing that ever happened to me. It had gotten to where I couldn't retain information for more than a second, and even the easiest tasks sometimes seemed impossible -- I remember going crazy trying to figure out how to use my IPod. Stuff like that used to be easy for me, but when the brain fog hit, I struggled with grasping instructions. Oh, it was hell.

Worse yet, some people would get mad at me if I didn't grasp something right away. I guess they were used to the old me who was reasonably sharp and on top of things. Mostly, I'd get mad at myself.

The horrible thing is that I was sure all of it was happening because I was getting old or because I was under stress. Before being diagnosed, I figured I was just not the sharp person I once was, and that's life, and I'd have to live with it. It was horrible, horrible, horrible.

Despite the challenges, I can honestly say that being diagnosed is the BEST THING THAT EVER HAPPENED TO ME.

There is a fountain of youth. It's called being properly diagnosed and eating right, and I thank heaven every day for being one of the lucky ones who was able to figure it all out.

GREAT THREAD!

Hugs,

Lyn

Something that happened today: As I was opening a package of gluten-free Canadian bacon, I had to peel off tons of sticky tape, not to mention the glue that held the top of the package together -- is it gluten-free? Had I not been careful, I could have easily cc'd the meat if it is not.

And what about the sticky peel-off-thingy that's on the aseptic container that holds my gluten-free broth?

Or the glue that holds the foil to the back of my sinus pills?

Or the glue that holds the foil to the top of the Smucker's honey, in the little single-serving packets? (My husband had called the company to ask about this once, and they said "Oh, it should be fine." But they weren't sure.

Or the sticky part of a Sticky Note? Is it full of gluten, the same as a stamp or an envelope (I imagine this one is a resounding yes -- I'm really more concerned about the food stuff).

Okay, so please tell me . . . am I just being paranoid here, or do I have to worry about these gummy-gluey-sticky things that are on food/drugs EVERYWHERE?

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.

Something just hit me . . . are the sticky labels on fresh fruit gluten free? I always wash my fruit, but perhaps I should be cutting off the area that has the sticker?

Anyone know?

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

Good Day!! I am in my 4th week of Gluten Free and things are finally beginning to improve. Still have the D and nausea but not as bad as in the beginning. I assume the tummy will get back to normal in time. What I wrestled with initially that I am beginning to give less energy to now, was the fact that bread, pasteries, pizza, etc. were off limits. I loved them all (and my weight 265 lbs showed it). Now, since the 1st of the year (before diagnosis) I have lost 25 lbs. and wearing clothes I haven't worn in years. Now that really makes me feel good.

I also think I am lactose intollerent as well. Had a bowl of gluten free cereal last week and was in the bathroom for hours. I have been reading the forums and find this is not unusual at all. There is a huge learning curve with this illness that I never thought about in the beginning. I do think however, that a gluten free life style, is going to have many more positives than negatives, now that I have gotten past the initial shock of the change in food habits.

I want to thank all of you who participate in this forum. It has been a life saver to read stories from others who have "been there, done that". It is making the journey much easier. I hope in time I can help each of you in someway as well......

What a great attitude. As they say, "Attitude is everything." It is going to be great to have you as part of the forum. Welcome.

Thank you! I'm working so hard to get my gliadin level down.

If a person needs to lower their gliadin level, do they need to watch foods other than gluten?

For example, if a person is allergic to eggs, soy, dairy, nuts - do these cause gliadin to elevate as well?

Hi, Everyone:

Yipes, help needed please!

I'm leaving on Sunday for a two-night business trip to New Orleans, French Quarter.

I've never been to New Orleans prior to now, and I need some quick suggestions for WONDERFUL, gluten-free food. Because I am super-sensitive, I am particularly interesting in dining at restaurants where they really get it when it comes to NO cross-contamination.

Any help appreciated.

On the temporary food intolerances...what are nightshades? To my knowledge, I have been very good at eliminating gluten from my life (not just my diet). But I went to a ladies' gathering for dinner the other night and about 10 minutes after dinner, I started bloating up! I brought my own turkey breast and put it atop a double serving of salad. I had marshmallows and fondue and fudge sauce for dessert. I checked the recipes for those the next day and neither of them had gluten (and, again, I say to my knowledge).

Does celiac just pop up in your life or should I have been experiencing symptoms for a long time? What triggered my own diagnosis was finally dertimining that my rash was DH, but I have only had it for about a year. I have a lot of the other symptoms, too, and they have "been around" in some way or another for many years---written off as depression and just being the "gassy" one. Also, I am VERY thin in appearance, but only I (and a few close others) know that I have a pot belly--the constant bloating!

So, anyway, back to the dinner. Can I be THAT much more sensitive now that eating from the fondue fountain that was shared with rice krispie treats, pound cake, and pretzels made me gassy and bloated so fast?

If you Google "nightshade vegetables" you'll find there is a lot of information out there. Nightshades include potatoes, tomatoes, peppers and more. Some folks feel that not eating them may help reduce inflammation.

The gathering you attended: Often, cross-contamination is the issue when it comes to getting glutened. Just because a recipe is gluten free doesn't mean that the person who made it did it in a gluten-free area of a kitchen.

For example: Someone brings a dessert in a plastic container. In the past, the plastic container was used to hold everything from bread stuffing to cake. Even though the container may have been carefully washed, plastic can hold gluten. So, cross-contamination may happen.

Let's say someone is baking with flour. Then the person makes a gluten free something. The person uses a fresh bowl and spoon, but puts the spoon on the counter. The counter has a tiny speck of flour left on it, and the underside of the spoon comes into contact with it. Then the spoon goes back into the bowl and . . . you guessed it, cross-contamination.

Yep, unfortunately, it's just that easy to get "hit."

If they're asking for the security code on the back of the card, that's pretty common, even among major online retailers. It's to verify that you have the card in your possession, and that the number wasn't read off of something else. (Not sure how useful it is, 'cause it needs security too, but that's the goal.)

I'm used to the security code thing. This was a page of info after I put in my credit card number -- never had that happen before now.

The brands of chips are Fritos corn chips, Kettle brand yellow tortilla chips, & another brand of tortilla chips that state "Gluten Free" on the front. All 3 have only the ingredients of corn, salt, & corn or canola oil. I read every label every time, to make sure there is no soy, because I cannot tolerate soy in any quantity. Maybe it's something totally different, but it seems suspicious that this has happened on 3 separate days in which I had chips. If it was the corn though, then wouldn't the Udi's bread I've been eating all week (because it's the only calming thing I'm tolerating) be upsetting too? It has corn starch as one if the ingredients in it. Could it have been the fat?

If a company lists a product at gluten-free, that doesn't mean it isn't processed in a plant that also processes wheat. If soy isn't listed as an ingredient, that doesn't mean that the plant doesn't also process soy.

Everyone out there: Please correct me if I am wrong. Thank you!

I used to be able to. Now I'm reacting to it too. I first started reacting when I got to U.S. and started eating Mexican food. Always figured it was the corn, never thought about gluten. Never ate much corn in NZ, just corn on the cob, non-GMO (we have managed to keep it that way still ), so back here it used to be I could always eat the corn and the beef (grass-fed). Well, I can still do the beef, but not the corn any longer (same reaction as gluten, only milder).

PS: My reaction is much the same as yours: same but more mild. It is interesting.

I used to be able to. Now I'm reacting to it too. I first started reacting when I got to U.S. and started eating Mexican food. Always figured it was the corn, never thought about gluten. Never ate much corn in NZ, just corn on the cob, non-GMO (we have managed to keep it that way still ), so back here it used to be I could always eat the corn and the beef (grass-fed). Well, I can still do the beef, but not the corn any longer (same reaction as gluten, only milder).

Thank you for your reply. I am beginning to believe that non-GMO makes a big difference with some of us us gluten-intolerant folks. I have nothing to base it on other than gut (pun intended) instinct.

I hope others will post here, too. Thanks again.

Hi and welcome!!

Check out Open Original Shared Link

I found out about them from another forum, ordered a box, and my whole family is hooked.

They're made from 10 gluten free grains and are super healthy.

Each box you order has 3 flavors of wraps: spinach garlic, agave grain(my favorite!) and chimayo chile

On Mondays you can order 1 box and get 1 free. 72 wraps total for $25 including shipping...did I mention I'm addicted?

Anyway, they're super good and we make enchiladas, burritos, mini pizzas, and quesadillas with them...you may want to order some and give them a shot! Good luck!!

Janie

I wasn't at all happy with the additional information this company asks you to provide at the end of the order -- weird, specific credit card info. I left the site because I was unsure. I was very sorry to do this because I wanted to take advantage of the 2 for 1 Monday offer, but frankly, it really creeped me out.

Please convince me I am wrong. Thanks.

Hi and welcome!!

Check out Open Original Shared Link

I found out about them from another forum, ordered a box, and my whole family is hooked.

They're made from 10 gluten free grains and are super healthy.

Each box you order has 3 flavors of wraps: spinach garlic, agave grain(my favorite!) and chimayo chile

On Mondays you can order 1 box and get 1 free. 72 wraps total for $25 including shipping...did I mention I'm addicted?

Anyway, they're super good and we make enchiladas, burritos, mini pizzas, and quesadillas with them...you may want to order some and give them a shot! Good luck!!

Janie

Thank you so much! Off to take a look . .

I'm just tossing this out in the wind for what it's worth, but I am beginning to think that lectins are causing my residual problems. Corn is high in lectins and is also highly genetically modified. Lectins, if you start reading about them are nasty things that can interfere with a whole range of body systems and have some very unsavoury consequences, if what I have been reading is to be believed. I must qualify with that statement because it is taking a while to get to the bottom of this. Someone else posted something about lectins which has led to my research on this.

There are a lot of lectins in corn. It was the first known food I reacted to (other than caffeine). All the gluten (and non-gluten) grass grains are high in lectins and they seem to be a big role-player in celiac disease. But they are also contained in nightshades, corn, soy, legumes (all foods which I now have to avoid from personal experience). I just found out that green (string) beans and green peas also have lectins so that will free up some space in the vegetable garden, When you get rid of the corn, tomatoes, green beans, peas, peppers, eggplant, potatoes from the garden, it's amazing how much room you have. Brown rice is also high in lectins, which is why the Asians polish it. The rice bran contains the lectins. Get your B vitamins somewhere else, from a bottle if necessary. Lectins are also the reason that the Asians ferment their soy. After what I have read today about lectins, they are being banished from my diet as much as possible.

Are you able to tolerate non-GMO corn? Have you tried?

Lyn

Interesting...Where would I find a copy of this book? Our local library does not have it. I am leaving on a trip tomorrow and thought it would be a good time to read it. Thanks for the info about the Iga. I have been confused with the difference between Total Iga and the Gliadin Iga. Do you have anymore to say about that? I seemed to be improving, but the last two days I have been bloated and gassy and my hands have started itching again (although not as intense). I feel sure I have not eaten any gluten, though maybe I'm wrong. I'm still trying to figure out if maybe the symptoms come and go while my body is "making the switch".

I can't help but be curious about this book. I told several people today that I felt like I was in a fog. Like I had a headache, but not really. Just felt kind of weird. Then I read your signature that says BRAIN FOG. It was actually encouraging!

Let me ask yet another question....Do we ever hear from those that think they are gluten intolerant, eat gluten free and then do the gluten challenge and are fine??? I'm wondering if it is some kind of epidemic and most of the population is gluten intolerant to some extent. Anyway, that may be one that just ends up being rhetoric.

Thanks again!

Hi, String Bean:

Any bookstore, online or otherwise, should either have it or be able to order it for you. It really is worth having, and it might help clear up a lot of your questions.

Going from feeling better to worse to better to worse is normal. My gliadin levels are still high desite going gluten-free. It can take a lot of time before the body responds and the gliadin levels start to lower. My doctor told me it might take as much as a year before I start to really heal -- maybe much longer.

In the meantime, I have good days and not-so-good, and I often find myself confused as to what I might have done wrong. My gut feeling (pun intended) is that it isn't always gluten that's the problem.

As mentioned above, having sensitivities to other foods is common. I am thinking of asking for additional testing to see if I am intolerant to other foods as well.

Your question about doing the gluten challenge and then testing as fine is a good question. Unfortunately, there isn't a cut-and-dry answer to it.

Some people test fine because their tests have been poorly run, misread, OR because their doctor only looks at the Celiac side of things and not at the gliadin level.

Some people test fine because they didn't eat enough gluten or eat gluten long enough for the body to react.

The list goes on and on. Of course, some will test fine . . . because they're fine!

To make things even more confusing: Some gluten-intolerant folks are highly symptomatic while others have no symptoms whatsoever. Still others have "fuzzy" symptoms that can easily be misinterpreted -- things like headaches or body aches are such universal complaints , it can be easy to overlook gluten-intolerance as a possibility.

I often wonder how many billions of dollars are being spent on drugs that mask symptoms rather than cure the problem.

For me, I had a biopsy and gene test as well as bloodwork. The only thing that came back positive was my gliadin level, yet I suffered horribly from every celiac symptom except villi damage (including malabsorption from diarrhea).

Medical science still has a lot to learn about gluten-intolerance, too. Not all the answers have been discovered yet.

Thanks for the replies! I was doing much better (it's only been two weeks), but the bloating and gas came back today. I have checked everything in my cabinets unless there is gluten hidden in something. During this gluten free trial period, will the episodes come and go or just gradually get better. I have only been eating my food and it gets better and then comes back.

And, my doctor FINALLY called me yesterday. She said everything was normal. I questioned the high total Iga that I had and she said that celiacs are Iga deficient and since mine was high I had nothing to worry about. I have read about the Iga deficiency, which I am obviously not. But, in my "un" professional opinion, I would think that anything out of the normal range, rather high or low, would mean something. Any other opinions on my lab?

String bean: If either your IgA or IgG comes back positive, YOU ARE GLUTEN INTOLERANT. This is very important. Just because a person doesn't have Celiac doesn't mean that gluten doesn't make that person very, VERY sick.

For more information, please read Healthier without Wheat by Dr. Stephen Wangen. In addition to addressing Celiac Disease and wheat allergies, this book addresses the non-celiac gluten intolerance issue.

(I have promoted this book so much that I worry that someone will think I've been hired to do it . . . no, absolutely not . . . it is just that I am a woman who struggled SO MUCH with being told, "Sweetie, you don't have Celiac, so you don't have to worry," when in fact, I did have to worry, BIG TIME.

Take a look at my symptoms in my signature, below, and you'll see what I mean.

Wangen's book helped me understand that I was not going crazy . . . and that the doctors were wrong . . . and it helped change my life for the better, so I mention it a lot.)

I am non-celiac gluten intolerant. I had a biopsy, gene test and all the rest, and they came back negative. However, my gliadin level came back very high. I don't remember if it was IgA or IgG, but I know that IgA and IgG need to be taken very seriously.

Additionally, I had all the other symptoms of Celiac disease, including malnutrition.

Please, please, please, keep on top of this! Perhaps a second opinion is in order -- one from someone who specializes in gluten-intolerance issues?

Good for you for posting your question. I hope it will help others, too. Please keep posting here and let us know how you are doing.

Sending a hug,

Lyn