dani nero

No, not cookies. That would take effort to bake .

You'll get there. Sometimes it's overwhelming. Just breathe deep AND DON'T BUY THE STUFF! That's what I learned - I can't moderate myself with ice cream or desserts so I don't buy them. I don't eat it unless I'm out to dinner (which is rare).

Oh, last night I made frosting for my son's "dessert" since I forgot to buy him a treat (I buy stuff for him I'll never eat). Anyway, I knew better but made myself some frosting, too. Big mistake. Belly ache, nausea, ick. And then what do I do??? Eat chocolate chips. I think one drop of sugar sets me off on a binge.

No I never get tempted to buy and I eat before going grocery shopping.. but looking at all the beautiful red melons just makes my heart ache.. I do have a small box of lactose-free banana chocolate ice-cream in the freezer, and a box of vanilla chocolate sandwich cookies that I bought before starting the elimination diet, but I don't really feel an urge to eat them because I know I won't like how sweet they are after being off sugar for so long. What I'm dying for is a big juicy melon, and a mixed berry/ mango/ banana fruit salad or smoothie.. make it a smoothie with some honey! *sigh*

It does help to know that others are cheating haha :-) I'm sorry you felt bad last night though! The chocolate chips and frostiest were probably worth it!

I get it. And I wish you happy bloating . Big, big bloating.

Hahahahaha! At least I'll be remembering this and laughing to myself instead of moaning tonight!

I'm sorry.

I can understand, to a point. I mean I've done gluten-free, and extreme li for two weeks-and I'd be lying if I said I didn't cheat on the df thing during li.

But you're dealing with alot more food restrictions than most, alot of life changes, alot of redefining moments...and it sucks. It really and truly sucks.

I can say that you will find a "happy medium" with your food. You'll find there are things you can easily give up and things you'd crawl across nails for. Figuring out how to balance the wants with the consequences is the trick, and it's different for everyone.

I don't know what else to say other than hang in there. And comfort yourself by knowing I didn't eat breakfast, took my thyroid med with coffee/milk, and am munching on chocolate chips. See, we all have our moments.

If you're munching on chocolate chip cookies then I think we're absolutely on the same boat! By the way I'm loving the hard unsweet pears. Their fabulous!

Perhaps I'll have such a painful bloat tonight that I'll finally put the salsa to rest.

The foods I can eat are very limited.. and I mean VERY limited. I've never been the type of person who could stick to the same routine for too long. I'm tired of the foods I've been eating and need something new, but the gluten accidents are sadly never ending because my hubs and I are stupid (to be honest he's more stupid than me because HE was the one watching the lady slice the bresaola on a shared machine!), and I'm having a really bad reaction. Now I'm finding myself cheating every other day by eating chicken cooked in a salsa that I'm not supposed to have (it contains sugar, chili, and potato starch) and I end up with a bloat every single time I eat it, but I can't resist the flavor! And now I'm prematurely eating the pears that I was supposed to add to my diet once I was sure I wasn't reacting to the gluten accident that was before the bresaola accident because I'm dying to chew on something sweet.

*sigh* I have such terrible will-power and I feel like I'm going to go crazy! I want dark chocolate, I want cheese, I want a sandwich, I want a pancake, I want avocados, and I WANT MELON, CITRUS, BERRIES, NUTS, BEANS.. BLA!

I'm seeing more and more products specifically labeled "gluten free," which is a good thing for us I am led to assume.

How exactly does a product get to have the "gluten free" label? I see this label in several forms...the "certified gluten-free" label, the words "gluten free" above a bar code, some Giant Eagle soups labeled "gluten free" right above the words "product of Canada."

I've seen "gluten free" with the wheat symbol, and the same symbol that says "naturally gluten free."

Some products say gluten free on their main label, like Bio-Tech protein powder that is "wheat and gluten free." Isn't that redundant?

Are all these products tested before they can label them like that? In another thread I asked about Choceur chocolates I found at Aldi's here (I was super thrilled...missing chocolate) but someone replied that cross-contamination could still be an issue.

I thought "Well that's crazy!" Then what IS safe to eat then if something can be labeled "gluten free" but could be cross-contaminated.

I'm confused now.

Don't know about the law in us, but in Europe 20ppm of gluten can be labeled as gluten free, 0ppm is naturally gluten free, I think.

Hindsight being 20/20 the short answer is yes. Now that I have learned about celiac I can look back & see the correlation between events & celiac. To summarize: I had celiac since childhood & believe I went into remission until teen years & experimentation with beer which I HATED. I used to tell my friends it felt like a garden rake had been used on the lining of my stomach after drinking beer. YES! I absolutely had GI/bathroom symptoms then. And then when my hubs & I got married we pretty much ate a lot of whole foods b/c they were cheaper than junk & processed. Hubs hates sandwiches so we didn't do much bread at all. He also didn't care for breakfast pastry so we didn't do much of that. I would from time to time have GI symptoms like what the beer did to me. Those may well have been times when I had cake or cookies & such. Then about 8? years ago I began to have more along the lines of GI stuff but not to the extent that I was really concerned about it. I DID have a lot of major indigestion or actually what I would describe to my hubs --- "it feels like I don't have ANY acid rather than too much in my stomach". I used to call it NON digestion rather than indigestion. And I got horrid bloat; such that there were 3 occasions when I came a hair's breadth from calling 911 in the middle of the night. I talked to docs about this & they blamed it on menopause. Then about 4 or 5 yrs. ago I began to get one or two tiny itchy blisters. They would resolve in 1 to 3 days. And then more & more in more places & then the big major outbreak which covered my entire torso. And the rest is history.

Rake stabs! That sounds so painful I don't like to even think about it. I only had such pain twice in my life and they were due to food poisoning. I never want to ever feel that pain again :-( Talk about a VERY pricy gluten-alarm!

Summing everyone's symptoms up, it seems that antibodies can't make up their mind. They can't decide how they want to react!

Your hubs seems like a healthy eater :-) Mine thrives on sandwiches, pasta, and any type of processed carb possible ;-(

I think that's what's so tricky about this dh stuff. It can make an appearance (or not) at any time glutened or not until all the antibodies are out of your skin. Makes it darn hard to know if you've been glutened!

Now, in my particular case, I have few (external) GI issues from celiac. The last time I was glutened, I had terrible sudden onset of cramps before running to the bathroom where the cramps got worse to the point you can't hardly catch your breath & I will not explain the TMI that followed. And this happened once or twice a day for the next 3 days. Now, as weird as it sounds, I am hoping this is how I will react from now on when I get glutened b/c at least then I will KNOW I had been glutened you see. Of course, the dh followed but at a much slower pace, many days later. If I have to depend on the dh alone then it will be almost a case of anyone's guess type of thing. But if my sign is going to be GI symptoms presenting then I won't have to question a possible glutening or cc; you follow my thought process?

And yes, when dh starts improving, it can be lightning quick! (or not)

Yeah I get what you mean. I know that many people consider the GI symptoms a curse but they do have one advantage: If you've been glutened, you can tell. Did you not get GI symptoms in the beginning?

Dani, yes, dh mutates. I swear it mutates just to frustrate us! Just when you think you have it figured out it goes & does something different on you. Your finger does sound like it's in a healing phase. Covering it will help like Prickly says. And then you may get slapped in the face (figuratively) when dh blisters pop back up on the finger. Darn stuff is vexing. But hopefully you have been gluten-free long enough that it's just not reacting that badly to the glutening. Maybe the antibodies are leaving your skin quickly. I sure hope so. Then again, the dh may leave your finger alone for months but decide to show up as blisters (or itchies w/o blisters) somewhere else on your body.

I'm glad others have had the same DH character changes.. I was starting to think maybe it was never DH because the blisters were gone.. err not that I'm not glad they're not showing up, and I hope they don't decide to make an appearance months later because that would make me think I'm being glutened!

Thanks for the advice you two! I didn't expect the rash to start improving so rapidly :-) My finger's skin is less stiff today.

Aww poor baby :-( I hope it doesn't burn as well! Do you have any diagnosed celiacs in the family? Maybe you should test both children.

Hello my wife is trying to lose weight and watches what she eat and works out at least 5 time a week. The last two weeks she has only been able to lose a 1/4 pound each week. I was wondering if Stress will play a role in this? Also I was wondering if she is not eating enough food. Typical day 1 1/2 half bags of Sugar free oat meal with granoal in it then Carrots for snack, lunch about 1/2 cup brown rice with a small piece of meat then a yougut (greek) with almonds then a dinner maybe pork chop and mashed potatoed and a vegie.If anyone has a good idea to try please let me know as my wife is really fustrated right know!!!!!!

Hi jtazman! She needs a doc and she needs to drill the doc in case he doesn't listen. Your wife's diet doesn't sound like too little to me, and not too much either. You didn't mention if she's exercising though. If she's not then 20 minutes of fast non-stop walks daily will help raise her metabolism and burn energy even when she's not moving. I would advise not doing anything harder than speed walks though in case she does have an underlying problem that any hard exercise would become harmful.

I was always overweight no matter what I did, so the only thing that helped me control my weight was exercise, so I cycled, and I cycled a lot, which made me lose weight. Since the reason I wasn't losing weight without cycling was an underlying problem and not what I ate, I started getting weaker and more tired every time I worked out. I haven't been to the doc yet so I've been advised by forum members to stop overworking myself until I've seen the doc since I would risk getting a sport-injury otherwise. 20 minutes of daily walks should be ok though, and they will make a difference, just not as fast as harder workouts.

I wish your wife good luck.. but I really do hope that she wants to lose weight because she prioritizes having more energy and being healthy, and not because she doesn't feel attractive. People who are fixed on losing weight for the sake of looking good often face frustration and a lot of unhappiness and they get nowhere because of that. You need to be supporting her by helping her feel better about herself and her image.

revenant this is normal and anyone being deprived of things they're addicted to are prone to rebelling. This book "eating less: say goodbye overeating" by Gillian Riley helped me understand the reason behind binge eating. I hope it helps you too if you ever decide to read it.

My entire family is in denial. None of them thinks anything in the world is worth giving up gluten. I've decided that if they ever realize it and need help I'll be there for them, otherwise I've given up on trying to convince them and not being believed.

Writing to the doctor is a good idea, but be prepared that the doc himself might be an idiot and not listen to you or stop looking the moment a test comes back negative. I hope things turn out well for you and that you'll get your dad to listen!

Well, the burning means one of two things to me: starting or stopping. Since its been there a while I'm betting on stopping.

I noticed mine tried to heal then I get careless and don't use gloves or don't moisturize then it comes back. So baby it. Mine also is changing how it looks. Ugh. I thought it was eczema/psoriasis but now it looks like herpes. I'm betting DH. It's not whitlow herpes or it would have spread across to my other finger, I think.

Its hard for me not to wash my hands since I'm also obsessive compulsive, but I'll try really hard to take extra pampering measures.

Doesn't herpes type a only show on lips or nose?

Yes, DH changes.

Yes, it looks different on different people.

Sounds like your hand is trying to heal. You need a water resistant barrier on that finger - like Vaseline. Multiple times a day. I have THE SAME THING ON MY FINGER. Wear gloves when washing dishes/cooking. Cover it with a band aid to keep it from getting irritated.

The other itchy spots- itch without rash, occur to me when I've been in contact with an irritant - usually topical gluten but it's different for everyone. Even seasonal allergies do it. It's like a DH "threat". Iodine did that to me (sushi).

It could be anything - sals, iodone, amines....it could just be part of healing.

Thanks for the feedback Prickly :-) although you'd probably wish it wasn't the case but you're the DH queen :-)

I'm glad to know that the intense and painful burning means is the dying face of my DH lol! Thanks again!

Go to the DH forum, click on a permanent post at the top. A link will describe DH in many forms.

Oh I completely missed that! Go figure, I always miss the biggest buttons on pages too :-)

THanks! I'll edit my post

I'm starting to get a little confused about my DH because it has changed ever since I went low sals and iodine. Perhaps it's not even DH? It feels like it's playing a game sometimes! I know I got glutened recently but I've had no blisters at all this time.. just lots of dryness and burning.

It used itch in many places all over my body but mainly my nose and scalp, the rash itself though would show up on one finger only, and it would wake me up at night from excessive itching and burning sensation.. My finger would feel like it's throbbing.

Lots of tiiiiiiiny blisters that release water would show up on the finger, then the skin would get really dry and irritated and would break up.

Now if it shows up, I itch in many places (nose, scalp, hands, feet, and arms), but no blisters anymore, and my finger would not itch. It would just get seriously and hopelessly dry and the skin would be very pink and covered with mall hard lines that go in the same direction. It would ache and burn like crazy but nothing else. No matter how much I put cream on my finder it still gets dry again.

• Has anyone ever had a similar rash that would change behavior like this? Could this be something other than DH?
  
• Edit (The following point is already covered in a different post, so no need to respond to it :-) The post is at ):
  I'm curious to know about ALL the different shapes and forms of DH, so can anyone who has had DH at any point please describe what it looked/ felt like if you fee up for it? :-)
  

Although I would love to have my stomach move even once when I'm reacting to something, I still so understand your frustration. I feel like crying when it happens just because I've been thrown off the well-wagon again and I can't seem to find foods that don't give me indigestions. I hope this passes quickly for you and that you'll be back to feeling good again, and without being discouraged about eating out!

Prickly, Squirming and dani

You have helped me so much with the DH issue. I have been reading all the posts on this topic. I can't understand why Drs don't read patient forums. They could learn more than by reading the crap put out by the AMA.

The oddest thing has happened to me and I feel a little guilty about it after reading what a rough time some of you are having with this !%# crazy making disease. I woke up this morning and immediately realized I hadn't been scratching at all last night. It's 4.00 pm here and no itching. Well, I have rubbed a couple of old spots but nothing like usual. I cant believe it or explain it.

I'm very glad you found an answer and that it's helping :-)

Hi guys –

I'm still getting over being glutened while on vacation and then cc'd by 2 dogs I was pet-sitting for last week. One huge thing I noticed after going gluten-free was my appetite! Things finally seemed to satisfy my insatiable hunger... which was fantastic. Well, it came back and I feel just ravenous; I'm hungry now, but I ate part of an apple 15 min ago and a very decent sized dinner 3 hrs ago. I know it will probably take some time to regulate again (it didn't immediately resolve after going gluten-free)... but it's frustrating/confusing: do I follow the signals my body is giving me or no?? Anybody else get this after being glutened?? Have you found anything that helps?

Thank you,

~Laura

Hi Aerial! I'm sorry I don't have a definitive answer for you, but I'm in the same boat. I've been gluten free for four months or so and I'm still always hungry and overeating. If I dare do some speculation of my own, I would guess that this doesn't only have to do with gluten and healing.. It might have to do with our body's previous programming and what we made it used to getting.. which were foods we're not allowed to touch anymore. Deprivation could be causing a mental reaction.. so the body might think it's being starved, and as a result urges us to eat more of what we're eating now. Maybe this is a simple case of mental rebelling due to deprivation, or maybe it's just the glutenation's side effect. I don't really know ;-)

Oh thanks for sharing this!

It's safe. Some hair care products contain wheat protein ingredients to fortify the hair. Rye or barley wouldn't normally be used in them, which is why they weren't mentioned.

They told you about the silk because it's what they use instead of wheat proteins.

Enjoy your shiny hair!

Yay! That's good news :-) Thanks for decoding this for me!

My advice would also be to avoid it. Shared equipment means cross contamination.. It's the same as someone dropping a piece of bread in your food then taking it out. It's actually what I'm finding trouble with most. My husband keeps forgetting that cross contamination is a problem. He bought bresaola that was sliced on a shared slicer for other gluten-containing products. I barely slept that night and was irritated like crazy the day after.. We were baffled about my mood until my husband thought back and realized his mistake.

I'm confused.. join on the forum where?

I emailed asking if Brilliant Brunette was gluten-free, and this is the response I got:

"We appreciate your interest in Kao Brands.

I have had a confirmation from our formulations department that Brilliant Brunette Liquid Shine Conditioner does not contain any wheat protein or its derivative. However it does contain hydrolyzed silk protein.

I hope the information provided is useful for you.

If you have any other queries please do not hesitate to contact us on 0800 652 1496. We are open Monday-Friday 9am-6pm.

Thank you for the opportunity to be of service.

Yours Sincerely,

Amy Gorham

John Frieda Consumer Relations UK"

It kindof confuses me a little. Why would they specify that the product is free from wheat and "silk" but not barley, rye, or malt derivatives. To my knowledge silk is not even a grain.

Bottom line is, I'm not that smart, so I'm confused and not sure the product is safe.

I would like to continue using it but not if it might gluten me.

That's unfortunate about the pears. I don't know if this makes sense but was it a sweet, ripe pear? Some pears are very soft and sweet (ripe), and others very hard and almost tart. Varies by variety, also. If you suspect it's the sugar level perhaps try one lower in sugar?

Or, it could just be pears. Sorry.

I don't remember the specific issue you have with sugar, but does it make a difference if you add protein or fat when you eat the sugar? I know it helps me keep the sugar hyper/hypo crash away by using fats. Not exactly healthy but it works .

Glad you had a good trip and sorry you got glutened. Sounds like you did a good job at managing the situation, though. Mistakes happen to everyone, so don't let it discourage you. You did a great job so early in. I dread the thought of travel this summer when I go to my parents house.

It makes a lot of sense.. the pears I ate were really soft and sweet, but we do have a very hard, hardly sweet variety as well that I can give a try when the 12 days are over :-) Yay!

I've never given sugar + fats a thought.. but I'm already imagining a plate of sliced pears with cashew nuts and I'm already drooling. I'll try that too when it's time to add nuts

I don't think you'll necessarily get blisters every time you get glutened. I got glutened a few days ago and so far my DH spot only got irritated and dry, but no blisters. I did get the blisters easily when I was eating a lot of iodine.. maybe low iodine can help in preventing a full-scale DH attack? This is just speculation :-)