tsomo
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My understanding is that if something has under 200ppm it can be labeled as gluten free. At least this is the law in Canada and I believe its true for the U.S. also. I can't begin to describe how retarded that logic is, however, there have been numerous times I have gotten contamination from a product claiming to be gluten free. Only to discover after investigating that the product may contain up to 200 ppm of gluten.
I dont believe anyone anymore who says their product is gluten free. With the exception of those who use testing for less than 20 ppm which is I think the most sensitive test there is.
Does anyone else here react to this amount?
I feel like I'm taking crazy pills
Tsomo
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I wouldn't worry about gluten wafting through the air, but the dog could still be getting on you through its mouth.
Do you ground the corn yourself or is it ground in a mill where XC can happen?
richard
I didn't think it would waft through the air either, and I dont kiss my dogs or let them lick me at all. I dont go near them after they eat either. So I dont think its the dog food. I think I am ingesting the gluten in my diet. (my DH has gotten worse day by day and I need more than ever to get to the bottom of this because of sleepless nights).
I'm going to investigate the ground corn today. The brand name is Maseca and it contains ground corn and lime. Im going to write to them, as there is no email or phone number, and try and get some answers about their manufacturing plant.
Tsomo
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Gluten contamination gives me anxiety and bloating. I think youre being contaminated but you would have to review everything youve eaten to find the culprit. Do you keep a food journal?
Tsomo
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Queenofhearts - I dont eat manufactured tortillas, I make them myself from Maseca (ground corn) and water.
Carla - good question, I dont put anything on my lips. I dont use lotions. And I use Garnier Fructose shampoo and conditioner which, last time I checked about 1 year ago, was gluten free.
Richard - yes the dry dog food has gluten but my husband feeds them and I never do. Unless of course tiny fragments waft through the air??? Is that possible? I dont know. I could move the food outside and see if that makes a difference.
Tsomo
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This sounds so familiar. Gina - good advise. Its been hard for me to accept that just because people are your family doesnt mean that they are going to care in a meaningful way.
Unfortunately, my relationship with my parents was corrupted all those years I was sick and no one knew why. They labeled me as "lazy" and told me to get out of their house. Even though ten years later I have a diagnosis they still talk to me as if Im not motivated, or I dont try hard enough. Basically, they condescend to me. They have never tried to educate themselves about celiac disease and despite my asking them to get screened no one in my family has done it.
This disease can ruin relationships, I know this firsthand. I basically lost all my friends and my family thinks Im basically a loser.
I dont have any advise for you, except to say be strong. Get the support from where you can, a friend or spouse, and say to heck with the rest. You can't make someone care enough to educate themselves. People have their opinions and theyre married to them unless they are compassionate and caring. Most people are not this way. They are self-centered as Gina pointed out.
Tsomo
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I need help. Due to several contaminations this summer I am on a strict diet, but I am still getting gluten! I developed a bad dermatitis herpetiformis rash two days ago and I can't see where the gluten is coming from?
This is the totality of what I eat -
Pinto beans, ground beef, dried chillies and corn tortillas made from Maseca (ground corn), Tillamook orange cheddar cheese, starbucks coffee I brew at home and white wine.
The seasoning I use is McCormicks oregano, garlic powder, pepper and of course salt.
I use wesson corn oil for cooking. And I eat some fruit and vegetables. And there is no gluten food in my house whatsoever!
I'm also taking Claritin-D for my allergies.
I use Crest toothpaste. Palmolive dish soap.
A week prior to this contamination I eliminated the cheese and the garlic powder. I seemed to be doing better. Then I ate the cheese and garlic powder again and bam! Another contamination. (I know, I should have only introduced one at a time).
What do you think? Is it the spices or cheese? Or something else Im eating?
I want to phone McCormick but I know what they'll say, "theres no gluten in our spices". Tillamook will say the same thing I'm sure. Could it be the "annatto colour" in the cheese?
Your input is appreciated,
I'm really frustrated because I cook everything from scratch - no processed foods. There is no gluten in my house and everything I eat is purportedly "gluten free"! (none of my cookware has be used for gluten)
"I feel like I'm taking CRAZY pills!" (zoolander)
Tsomo
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Thank you ALL for your replies. I avoided reading the responses for awhile because I was so embarassed by the state of my condition its painful to acknowledge it.
I think you are all right in that I am still being glutenated. Youre right, I shouldnt be bloated all the time.
I thought I was being really careful. I dont eat out, but clearly I am missing something.
I wonder if I have the discipline to really get to the bottom of it.
Im going to go back to unadulterated meat and vegetables for two weeks. (and red wine and fruit)
There is no other alternative.
Tsomo
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Do you have DH? If so, as far as I know it is caused soley by gluten. Therefore, you must have had gluten. Unless its not DH but another rash and then i dont know what affects it.
I also seem to get DH when I eat candy and I think there are remote glutens in candy. The reason why is because if you look at the list of ingredients in a lot of candies it is very long. All these ingredients come from different suppliers who may or may not be in strict compliance. The chances of getting remote gluten in a mainstream candy, especially ones with food colours, is probably pretty good.
Thats my analysis. Im hoping I am wrong.
Tsomo
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As far as I know, dairy and sugar doent cause DH. If I get a outbreak of DH Im assuming I've ingested gluten.
I dont get any intestinal discomfort from the M&I. I wonder if people with DH are more sensitive than Celiacs without DH. Because, Ive often thought that if I didnt have DH, I wouldnt know I was ingesting gluten (except when I have a significant amount of gluten).
After our discussion I was more anxious than ever to eat Mike and Ikes so I did. My hands were more itchy and more eruptions in the skin have come out the past two days.
Tsomo
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All of those ARE gluten-free...do you have other intolerances, such as casien?
Otherwise, I'm a fan of kisses, hugs, skittles, starburst, and sour patch kids
I love your picture penguin, so cute
I have celiac disease and DH, and Ive gotten the rash from the candies. The thing is, I have a very strict diet. I eat pretty much the same foods everyday only introducing one new food, like the candy, at a time. So I can't be in doubt that it was the candy (and not the homemade corn tortillas, beans, cheddar, beef and vegetables).
I also know that I am more sensitive than the average celiac.
I wish it wasn't so. Drats. Maybe it was something else in my diet that I reacted to like cheddar cheese? Ive recently cut out butter and now im going to cut out cheese.
Tsomo
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I've tried peanut butter cups, hersheys chocolate, mike and ikes, junior mints...all say they are gluten free but Ive been contaminated by all of them. Does anyone know of a candy that IS totally gluten free?
Its so hard to live with zero candy..please help.
Tsomo
Also been contaminated by chewing gum that says its gluten free.
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I want to go to a retreat with other Celiacs where I can talk about this disease for a week. I feel like no one knows what I go through. My husband is very accomodating and patient but Im worried because of the strain it puts on our relationship. I almost always have symptoms and so our sex life practically went out the window years ago. Celiac Disease is so hard to deal with I never knew it would be so hard. I though I would just get better. But I get contamination every month and it takes me a month to recover so I am almost NEVER feeling good.
Last time I wasnt bloated? Hmm, May 24.
I'm so tired of wearing bloated clothes. I have a closet of clothes I cant wear and I have to wear baggy sweat pants because of my distended belly. Should I burn my clothes and go shopping for plus size pants and get it over with? Im tall and skinny but my belly is so distended I look like a starving Ethiopian. It looks so unnatural.
My coping skills aren't that great. The longer it goes without having a lapse in my symptoms the more irritable and forlorn I become. Im over two months without a day of health and its starting to make me feel batty. Add to that insensitive comments from a family member and Im heading for the wine closet
Tsomo.......just another day in the life of a Celiac
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Im very sad to say that I got contamination from Hormel Black label bacon. I was eating it every weekend and started getting sick. I didnt know where the contamination came from so I cut out everything I was eating at the time. Just when I got over the contamination (3-4 weeks for me), I ate some bacon again, thinking it wasn't the bacon and bam! got the DH rash and sick all over again.
Im sad because I didnt want to give up nummy bacon.
Tsomo...now I dont trust any bacon..."bad bacon! made me sick"..hehe
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I get a message that the administrator has not enabled me access permission to post my picture? How do I solve this?
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Hi, Like Sara suggested, I think you have further food sensitivities. I went off gluten and dairy and rice and corn and soy. I got a similar reaction when I ate corn or rice as I did when I ate wheat gluten. Once you eliminate the gluten you will notice that other foods affect you adversely and these need to be eliminated also.
Tsomo
Thats not "crazy" its just common sense. If something gives you symptoms dont eat it.
Going Crazy - Help Me Find The Gluten
in Coping with Celiac Disease
Posted
No, I haven't had a biopsy but Im considering it. Its DH though, there can be no doubt about that. I get it after I ingest gluten, intensely itching, burning rash that ....anyways, you have to have it to know it.
I dont just get DH though, I have the whole gastro thing too and I can also tell by my stool when Ive ingested gluten. However, at this time, it is the DH that is the most difficult to deal with due to the intense intchiness of it. It starts out as little pustules that errupt and its extremely itchy. Then the itchiness turns to an intense burning feeling. It occurs on both sides of my body...its textbook DH. (I really hate having to explain it though...if you had it you would know it). Im not here to prove that I have DH if you have doubts that is your issue. (dont take offense, just if you had it you would know it). People who ask - 'is this DH' dont have it, because its really not like any other rash on the planet, and the fact that it comes out after eating gluten is like ...DUH. Its not rocket science people! Why do some people harp on "official" diagnosis? When we all know that the majority of doctors cant even diagnose celiac disease or DH. I have been to many doctors during my life and did anyone diagnose me?? Yet now Im suppose to prove to whoever that I have been suffering from 'x' symptoms. Dont you realize you are doing the same thing that ignorant doctors do. Instead of you educating yourself, and knowing the diseases, you acuse other people of being ignorant about their own condition! And as for dapsone, its a drug okay, the only thing that is going to get rid of DH is the absense of gluten! Its not rocket science people! Only an idiot takes a drug, or prescribes a drug for something whos remedy is the elimination of a substance. Sure, you can take a drug to emmeliorate the symptoms, but its an illusion if you think its helping you.
You should know how irritable and crazy a glutenate person is, and dont you think its not frustrating for everyone? You obviously dont have DH and thats great, but do you appreciate it when someone says to you - 'oh, are you SURE you have celiac disease?'
No offense either, but you did irritate me with that question and I know this post will be offensive so whats the point in saying 'no offense'? If you have to say to someone 'no offense' then you know your post is offensive!
Im posting to this board because im frustrated that I haven't been able to find the gluten source! Ive had many sleepless nights due to a very uncomfortable rash not to mention the irritability and constipation and bloating and everything else that comes along with gluten. Then to be questioned by someone on this board about an 'official' diagnosis is enough to make a person upset. If I did decide to get biopsies and make myself as sick as a dog for months, for an 'official' diagnosis, it would only be to shut up annoying people like you who always ask 'did you get that officially diagnosed?'.
Im sorry to post this vehemence but sometimes you just have to tell people exactly what you think. If anyone else is insensitive I claim the right to be insensitive right back!