I'd Expect This From A Non-Coeliac - But Not A Fellow Coeliac!

[fairydust81]

Having only just being diagnosed I'm still trying to come to terms with things and preparing for a gluten-free lifestyle after my skin biopsy on the 14th.

All the people I work with and my family have been great, really supportive, asking lots of questions and looking round the supermarket for food they can prepare for me when I go and visit them - at barbecues etc.

A woman I have never met, who works with my husband, was discussing coeliac with him last night during their shift, apparently she has coeliacs disease. He was telling her about my symptoms and how I'd been diagnosed and she said that I must be making it up, apparently there is no way that my rash is anything to do with coeliacs - there is no such thing associated with it! This is from a woman with coeliacs - she is also very lucky in that most shifts she works she is able to go and eat in McDonalds - as yet I have not found a single thing in McDonalds that I can eat that is gluten free - yet she has absolutely no reaction - I know I shouldn't judge her but she has really upset me - my husband basically told her that she must be more medically trained then than my GP, rheumatologist and dermatologist!!!

Aaaaaaagh!!

[Harpgirl]

She either doesn't really know what celiac is or she isn't taking it seriously enough.

I just talked with my grandmother about it for the first time this week since going gluten-free and found out all sorts of things from her about how she wasn't very careful about it. She was diagnosed in the 90's and I don't think there was much info for her then. She wasn't as sensitive as I seem to be, so she didn't worry about changing out her cookware, toaster, etc. But I can now see the effect of it on her. She is now 81 and I don't think that there will be any changing her, but she has a horrible memory (she told me twice within 5 minutes about how she fell among other repeat stories), fibromyalgia, and all kinds of other health problems that have gotten worse over the years. I can't help now but think that if she had been more careful, she would have had a better quality of life.

Just keep doing what you're doing. It sounds like you have a great support system. Focus on them, and in the meantime, have your hubby direct her to this site!

[Takala]

Some people cannot handle the restrictions of the diet, go ahead and cross contaminate themselves on a daily basis, then indulge in fuzzy thinking and denial. Right after they say something like "have no reactions whatsoever" they will then be telling you all about their intractable, persistent mystery symptom that is a direct result of ......celiac auto immune reaction.

[fairydust81]

Thanks for the replies - so glad I have found this site and found so many wonderful people who truly understand.

Thankfully I have never met this woman and I don't think I'd like to, judging by some of the stories I've heard about her.

Just getting to grips with basics now - I normally reply on the hospital restaurant for my breakfast and lunch (I'm a research scientist working on rheumatoid arthritis) but the realisation that there was nothing gluten free hit me today - even the salad dips etc I can't really be sure of, and the jacket potatoes are right next to things like sausage rolls etc...

Any tips for varying lunch ideas (I'm in the UK btw) would be really great lol...I'm hopeless with cooking and thankfully my hubby does all the cooking. The only things I ever cook are cheese on toast, beans on toast etc haha

[Poppi]

Some people cannot handle the restrictions of the diet, go ahead and cross contaminate themselves on a daily basis, then indulge in fuzzy thinking and denial. Right after they say something like "have no reactions whatsoever" they will then be telling you all about their intractable, persistent mystery symptom that is a direct result of ......celiac auto immune reaction.

I have a friend at knitting like that. She tells me all the time that she doesn't have to be as careful as I am because she isn't as sensitive and then proceeds to talk about how miserable she is all the time. I've just started smiling and nodding because nothing I said was sinking in.

[Takala]

The easiest thing to do is to make extra at dinner, and pack it for lunch the next day in some sort of container with a re usable ice gel pack. You can also make up a big batch of plain rice on weekends, another batch of something like beans or a casserole (for example, a lot of Indian-style chicken in yogurt curried sauces can be made gluten free, or rice pasta with gluten-free tomato sauce), cook 5 servings of some sort of meat patty or chicken, boil some eggs to make hard boiled eggs, bake 5 potatoes, bake a loaf or a round small skillet of gluten free bread, etc, and then you have it reserved for the week. You can take a resealable storage container and throw in a bit of fresh salad or vegetable with a bit of olive oil and vinegar dressing. Add in a piece of fruit and it's no big deal.

Hey, cheese, beans, or peanut butter on a rice cake, tortilla, flatbread is a staple "go - to" for a lot of us, with a side of vegetable and fruit, don't knock it !

[fairydust81]

The easiest thing to do is to make extra at dinner, and pack it for lunch the next day in some sort of container with a re usable ice gel pack. You can also make up a big batch of plain rice on weekends, another batch of something like beans or a casserole (for example, a lot of Indian-style chicken in yogurt curried sauces can be made gluten free, or rice pasta with gluten-free tomato sauce), cook 5 servings of some sort of meat patty or chicken, boil some eggs to make hard boiled eggs, bake 5 potatoes, bake a loaf or a round small skillet of gluten free bread, etc, and then you have it reserved for the week. You can take a resealable storage container and throw in a bit of fresh salad or vegetable with a bit of olive oil and vinegar dressing. Add in a piece of fruit and it's no big deal.

Many thanks for the ideas, I really am hopeless, i can manage preparing food for my daughter so I should take a leaf out of her book (she was born with a bowel malformation and underwent so many surgeries and endured a temporary colostomy, she is now 7 and will only eat healthy, refuses to eat junk (processed food) as she has learnt that anything like that will cause her constipation, she also controls her own laxatives now lol...), will have a clear out in the kitchen in a couple of weeks and go shopping again (husband normally does the shopping)...

[rosetapper23]

You seem like a really good sport about this adventure you're embarking on...and I'm glad that so many of your friends and family are supportive. BUT (yes, you knew that was coming)...your well-meaning friends and family members will cook you very tasty, albeit cross-contaminated, meals most of the time. It's sad but true. My number one rule (besides never eating at potlucks) is to never eat any meal prepared outside of my home except ones prepared in a dedicated gluten-free kitchen. All of your loved ones will be so sweet and volunteer to go out of their way to make you a very safe meal; however, they don't understand that their pots and pans are contaminated, their cutting boards are dangerous to us, their barbecue grills have remnants of barbecue sauce and hamburger buns, etc. They might not know that a particular seasoning contains gluten or that soy sauce contains wheat. When I was first diagnosed, I was thankful to people for making me "gluten-free" meals, but I soon found out that accepting their gifts of food simply made me very ill. Although your loved ones are trying to make you feel included and loved, you'll see before much time passes that it is better to simply say that you'll bring your own food. You can always eat a little fruit or cheese if the opportunity presents itself....but people will have to come to understand how serious your disease is and accept that they can't make it "all better." It's natural to want to help the people we love, but this is one of those cases when we must turn down their help. Good luck!

[YoloGx]

As far as that woman who says she is coeliac and can eat at McDonald's--all I can say is "Ignorance is Bliss"!

I dated a guy like that. Then I noticed how his eyes would get all red after eating someplace where the food was definitely cross contaminated (CC) with gluten. Like I said, Ignorance is Bliss. But it still doesn't help when it comes to feeling good vs crappy.

[RacerX35]

I understand how you feel about the UK foods. I took my family there for a vacation one time. This was before I was diagnosed with epilepsy and subsequently gluten sensitivity. I am lucky as far as fast food goes. Here in southern California and pretty much all of California is In-N-Out Burgers. The only thing fried are fresh cut potatos. I get the burgers "protein style". and am okay. Ther is Carls Jr. as well and they at least advertise a gluten free menu list on their web site. My wife cooks all my food in seperate pots and pans and we have all kinds of baking foods for me to eat when the rest of the family is eating their cookies and brownies. The hard part for me is the reminder to stay away from gluten at all costs. Being epileptic, I will start to have siezures sometimes shortly after consuming gluten. Fortunately for me I haven't had to deal with lotions and the sort of things celiacs suffer from with topical products.

Good luck to you,

Ray