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ItchyMeredith

Poo On Godiva!

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My 2 year old son told my husband that he wanted to buy me chocolates for Christmas. Isn't that sweet!!!! This is the first gift that my son picked out. My husband took him to the mall and they got me a beautiful box of Godiva truffles. Well- my husband read the box 5 times to me sure and nothing looked like it contained gluten. I am proud that he worked so hard to make sure it was okay. Well- He brought it home to me and my son was so excited he couldn


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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Celiac.com Sponsor (A8):

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If he will read a book about celiac, get him The Gluten Connection, or The Gluten Free Bible, even Gluten Free for Dummies is a wonderful book--any of the 3 are wonderful reading material for anyone needing to know everything they need to know about this disease. He isn't alone in his belief, even some celiac's believe "just a little gluten can't hurt!" It's very difficult for people to understand when you have to give up a food completely, I mean even a diabetic doesn't have to give up sugar completely! Ask him to read one of the books I mentioned, see if he will.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Seems to me your hubby needs a small life lesson!

lets see what we can think of........

Stubbing toe in middle of the night next to 2yo's door...... nope, not harsh enough.....

OOOHHHHHH I GOT ONE!!!

HE gets tested and finds out he has celiac disease also and lives thru a few months of "just a little wont hurt ya" before he realizes it does!


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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It is hard when they don't fully understand that a little can hurt....It took John a long time to understand this. Dont get me wrong, he was always supportive but sometimes he would throw the little hint out....you can cheat once in awhile. One night I gave in after a very frustrating week of life events (bad excuse and this was years ago) well I felt so bad and was on my death bed I swear....he really got the understanding then.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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I'd eat them! Or at least a couple of them. I'm so weak when it comes to beautiful expensive chocolates! I know, I'm bad! I'm glad no one bought anything like that for me. Stay strong.

Merry Christmas to you and your family!

neesee

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My 2 year old son told my husband that he wanted to buy me chocolates for Christmas. Isn't that sweet!!!! This is the first gift that my son picked out. My husband took him to the mall and they got me a beautiful box of Godiva truffles. Well- my husband read the box 5 times to me sure and nothing looked like it contained gluten. I am proud that he worked so hard to make sure it was okay. Well- He brought it home to me and my son was so excited he couldn

Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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Thank you all for your advice.

In his defense- I was never sick. I had DH and got a celiac diagnosis from a skin biopsy and a blood test. Celiac and all that it can bring is all theoretical for him. Reality is an itchy rash. The rest of it is probably hard for him to wrap his head around.

I am thankful for him for reading the label and caring.

He is a sweetie.


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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In his defense- I was never sick. I had DH and got a celiac diagnosis from a skin biopsy and a blood test.

I'm starting to consider Celiac DH a whole 'nother thing from mostly gastrointestinal regular Celiac. Sometimes I wonder if I've been inadvertaintly cross contaminated if I have a minor case of diarrea. But, as my gastroenterologist say's, "non-Celiacs get diarrea too". Millions of people buy Immodium AD. Certainly only a tiny fraction are Celiacs.

But those of you with DH have to worry about skin reactions, eye inflammations, etc. I just can't feel I'm qualified to give advise regarding what's safe to eat for you guy's. If it was me, and there were NO gluten listed in the ingredients, I would "cautiously" risk eating one or two of those chocolates and seeing what happens. I'm of the opinion that a lot of companies are probably playing safe by not declaring gluten-free.

I wasn't aware you could get diagnosed with a skin biopsy. How does that tell if you have Celiac?

best regards,lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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DH can only be confirmed with a skin biopsy. They find the IGA adjacent to the blisters. You have celiac if you have DH so no internal biopsy is needed. I also had a positive blood test as well.


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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My main reaction (at least, the one I was unable to ignore) to gluten was DH--and it was worse than poison ivy. It itched intensely, burned, oozed, and prickled constantly. I felt as though I was allergic to my own skin. I would have done ANYTHING to make it go away. I am generally strongly anti- prescription drugs, but I ended up on prednisone, which did help.

Then, when I went off gluten and it did go away--so did a host of other symptoms I had pretty much been able to ignore--alternating diarrhea and constipation, major bloating (but I assumed I was just fat--and it was about 2 clothing sizes' worth of bloating), MAJOR GERD (I had assumed it was the tomato sauce, never dreamed it could be the pasta under it), and joint pain. I also was able to cut my synthroid dose in half.

From what I understand about DH, many DH sufferers DO have intestinal damage, but those symptoms may or may not be on the mild side. Some do not have intestinal damage. But the blood test results are apparently the same as those of intestinal-only celiac sufferers--and, as mentioned above, IgA deposits are found next to the rash.

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FF,

I really feel for you guys. I have enough problems without all the extra ones you have. The only thing I can compare it too is when I make my homemade salsa/hot sause. I try to wash my hands well after cutting up the serranos, jalapinos, papitas, and habaneros. But those oils aren't water soluble and tend to stay on your hands.

I always forget and rub my eyes, ouch! Not to mention going to the bathroom, double ouch! :o

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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I just want to sort of correct something that a poster sort of said above. It was about how people with nut allergies have the same problem as people with gluten issues in that some manufacturers put warning labels on their food to cover their butts.

I don't think that any manufacturer does this unless they feel there is a slight chance, regardless of how small, that the forbidden food could end up in the product. And I'm one person that, although it does limit our choices, I'm glad they do it. If they are not entirely sure they can't keep say peanuts out of their food I want to know about it.

Please don't ever think that a warning label can be ignore for people that have food allergies... many of them are anaphylactic, my daughter is and when we see those cover your butt warning labels we steer clear of that product. Just the slightest hint of peanut would send her to the hospital, she could easily die, the epi pen does not work for every single person, every single time. She actually has severe reactions to peanut oil in the air (so any place that serves peanuts is out, like a baseball game).

We both have to be gluten-free so I do understand how sick just a tiny bit of gluten can make me, but I'm not anaphylactic and when someone is, its a whole different ball game. I had a neighbor once do just what the poster above spoke about, she was giving my daughter candy canes that clearly said on the package that they were made in the same factory as peanuts products and that there was a chance of cross contamination. I asked her what the heck she was thinking and she said, "really what is the chance that there is a peanut in a candy cane? You know that chance might be VERY small but I'm sure not willing to bet my daughters life on it!

So its not quite the same, but I get the point she was making. In regards to gluten I can't tell you how many times I've tried items that have that cross contamination warning on them and have ended up sick. Not always but its happened a number of times.

Susan :)

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It is hard when they don't fully understand that a little can hurt....It took John a long time to understand this. Dont get me wrong, he was always supportive but sometimes he would throw the little hint out....you can cheat once in awhile. One night I gave in after a very frustrating week of life events (bad excuse and this was years ago) well I felt so bad and was on my death bed I swear....he really got the understanding then.

I am with you on this....

I know my honey doesn't fully understand and it isn't for a lack of trying. He is sympathetic also and he asks for me and tells for me, so he really does try.

I think they just don't understand because they don't walk in the shoes. It doesn't hurt me, it is just one of those things.

Sorta like they only bring flowers on your birthday when they could bring them anytime. Its just the way they are but it isn't meant to be hurtful.


~Barb

Gluten Free October 18, 2007

YIPPEE for Gluten free

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I just want to sort of correct something that a poster sort of said above. It was about how people with nut allergies have the same problem as people with gluten issues in that some manufacturers put warning labels on their food to cover their butts.

I don't think that any manufacturer does this unless they feel there is a slight chance, regardless of how small, that the forbidden food could end up in the product. And I'm one person that, although it does limit our choices, I'm glad they do it. If they are not entirely sure they can't keep say peanuts out of their food I want to know about it.

Please don't ever think that a warning label can be ignore for people that have food allergies... many of them are anaphylactic, my daughter is and when we see those cover your butt warning labels we steer clear of that product. Just the slightest hint of peanut would send her to the hospital, she could easily die, the epi pen does not work for every single person, every single time. She actually has severe reactions to peanut oil in the air (so any place that serves peanuts is out, like a baseball game).

We both have to be gluten-free so I do understand how sick just a tiny bit of gluten can make me, but I'm not anaphylactic and when someone is, its a whole different ball game. I had a neighbor once do just what the poster above spoke about, she was giving my daughter candy canes that clearly said on the package that they were made in the same factory as peanuts products and that there was a chance of cross contamination. I asked her what the heck she was thinking and she said, "really what is the chance that there is a peanut in a candy cane? You know that chance might be VERY small but I'm sure not willing to bet my daughters life on it!

So its not quite the same, but I get the point she was making. In regards to gluten I can't tell you how many times I've tried items that have that cross contamination warning on them and have ended up sick. Not always but its happened a number of times.

Susan :)

Please don't misunderstand me. I totally understand the severity of peanut allergies and the dangers of them. It's just that in my opinion the "manufactured in the same facility" is causing some unneccessary fear and paranoia. I have a friend with a peanut allergy. And foods she has eaten without incident for years, like your candy cane example, suddenly have these new warnings, and she doesn't know what to do. In some instances, she can just choose the next brand over without the warning. In other instances, the exact food and brand she has always eaten now has a new warning, and does she trust her past experience with this food or heed this new warning? By putting this warning on their product is the comapny giving themselves permission to be more lax in their control standards? Ironcally, that would make the food less safe for her, not more so. While it is intended to be helpful, it is a frustrating experience for her. To her "Manufactured in the same facility" warnings is a gray area of uncertainty.

On the other hand, she considers "manufactured on same equipment" enormously helpful. Many companies were already putting "may contain peanuts" on products that were manufactured on equipment that made products with peanuts, such as plain M&M's. But now it is required, and that is a good thing.

I'd like to know exactly what "manufactured in the same facility" entails. Does it mean the machine right next to it is processing peanuts? Or a machine on a different floor? What exactly is the regulation for "same facility"?

Anaphylaxisis aside, IMO, I would feel confident eating foods "made in the same facility" as gluten products while using caution with "made on the same equipment."


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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I'd like to add something here. Many companies are no longer manufacturing the products themselves, finding it advantagous to farm it out. But they still put their name on it and it's extemely difficult for consumers to know who makes what anymore.

Perfect example, the peanut butter fiasco last year. Nobody really knew that Con-Agra produced all these different peanut butters that other companies put their name on until a bunch of people got sick.

Then it comes out that Walmart, Peter Pan and a bunch of other brands are all made in the same plant. I'm not claiming a conspiracy or anything, it's just they're not going to advertise stuff like that.

It's no wonder some companies are putting disclaimers on the label. They don't have that much control over the manufacturing process.

Those candy canes might be made in China now for all we know. :o

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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Those candy canes might be made in China now for all we know. :o

Not to hijack here but - i bought some cany canes that were "all natural" blah, blah, gluten free, yada, yada at whole foods around the holidays thinking they would be safer . . . sure enough, I get them home and there is indeed fine print that says made in china! amazing. :huh:

b.


Daughter, Camryn diagnosed with diabetes 3/06

diagnosed with celiac (blood test and biosy confirmed) 5/06

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My 2 year old son told my husband that he wanted to buy me chocolates for Christmas. Isn't that sweet!!!! This is the first gift that my son picked out. My husband took him to the mall and they got me a beautiful box of Godiva truffles. Well- my husband read the box 5 times to me sure and nothing looked like it contained gluten. I am proud that he worked so hard to make sure it was okay. Well- He brought it home to me and my son was so excited he couldn

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Tell them to go to the See's store next time. A friend bought me a small sampler from See's for Christmas. She did good. The ingredient list on the box was in plain English so I ate without fear. I hadn't had See's in so long since the nearest store is over an hour away now. I liked the sampler and miss See's so much I decided to order from their website. First I sent them an email about their dark chocolates just to be sure before I ordered. I don't see the point in milk chocolate, LOL. Why dilute a good thing. Got this response:

"Thank you for visiting Sees.com. In response to your request for information about the presence of gluten in our candies, our Quality Assurance Manager has advised that we have reformulated our products and eliminated wheat as a direct ingredient in all of our candies packed in standard boxes. We also do not use rye, barley, oats or malt as ingredients in our candies. Therefore, none of our Custom Mix pieces contain gluten as a direct ingredient and cross contact is no longer a possibility. This would include our Peanut Brittle, Krispys, and our recently introduced Sugar Free products.

You may have noticed that we do have some products which are manufactured for us. Some of these items that do not contain gluten are our Milk Chocolate Drops, Milk Chocolate and Dark Chocolate Foil Novelties, Super Chips, Sugar Sticks and Sour Chews. As we've noted, most of our products are gluten free.

However, we do have a few items which our Quality Assurance Department does not consider to be gluten free because of their decorations or they are produced in a facility that processes gluten. These are the Climber Canes (decoration), decorated 0.8 oz. Easter Eggs (decoration), decorated Chocolate Butters (decoration), all candy canes, and the 3 oz. Bordeaux, Chocolate Walnut, and Dark Raspberry Hearts (decorations). Also, we wish to advise that the distilled apple cider vinegar used in our Butterscotch Lollypops and Little Pops is grain based.

I hope this information is helpful. Thank you for your interest in See's Candies and we hope to have the opportunity to serve you soon."


"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

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When it comes to chocolate, US labelling laws require that wheat in any amount be disclosed (since it's one of the Big Eight allergens), but barley malt does not have to be disclosed if it's less than 2% of the weight of the product. Unfortunately, it's not at all uncommon to find said malt in chocolate.

Therefore, chocolate is one product that I won't eat unless I've checked with the manufacturer, first. Remember: the old Lindt labels gave the appearance of safety, until they started listing the barley malt.

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Sorry for your gift. It is very hard for family to sometimes understand. You just have to let a lot go. Suggest a gift of nice warm fuzzy slippers instead. You don't know where things are made anymore. At least there is more awareness so that things are being labeled. We saw an ad on TV last night for Godiva Chocolates and my husband asked me if that was something I might like sometime. Now I have to tell him they are off limits to us both, he is gluten-free too. Maybe in future they could use rice flour spray instead of wheat? I make truffles, and never ever thought of using any type of flour in them. Thank goodness for the forum. I keep learning.


Just another mom, looking after the 4 of us Celiacs.

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