Being Uber Sensitive

[Leper Messiah]

Trying, for the first time, to get a few months or so, even a few weeks to be honest, of being gluten free but am really struggling....keep getting CC'd. I must be uber sensitive or is that the norm?

How do people cope and does it get better if you can get a long time without getting glutened???

Very confused and annoyed, I mean I try really hard to not get CC'd, I have my own cupboard, my food is always separate, I generally don't cook and mix food so risk of CC should be low but I still get binned. Only thing of risk I can think of is making my gluten free ham sandwiches, or perhaps eating at my desk although I always wash my hands and don't ever touch the sandwiches with my bare hands (i.e. I eat the sandwiches holding them by the cling film) Meh!!! Very annoying.

On a larger note, how do people cope in relationships etc? I mean you must have to ask your partner to wash her/his mouth out every time you want to kiss them, if you're single that's going to be unbelievably difficult..."yeah I really want to kiss you but erm, can you wash your mouth out thoroughly first?!", Casanova eat your heart out!!

What a depressing and frustrating illness this is.

[AzizaRivers]

I'm sorry you're having a hard time. Super-sensitivity seems increasingly common. A few questions: do the people you live with, family, roommates, etc. understand the risk of contamination for you? It's helpful if others understand how careful you need to be. Are you using things like wooden spoons and cutting boards, old skillets, cookie sheets? Those can be contaminated with gluten. Are you sharing butter, jam, peanut butter, other condiments? Those can get you too if someone double dipped their knife after buttering toast.

I live in a mixed household so this is all stuff I have to deal with too. I have my own peanut butter. I do share jam but everyone thoroughly understands to use a spoon to scoop it out onto the bread and then spread with their knife. Things like that.

My partner knows he can't kiss me until it's been an hour and a full glass of water after eating gluten. That's good enough that it doesn't get me sick.

Things that DO still get me are situations like babysitting: six gluten-eating kids who constantly make messes I need to clean up, feeding the baby crackers, cleaning him up, preparing their food, stuff like that. Maybe you don't babysit but do you have anything like that? A friend's kids maybe?

[shadowicewolf]

what about the ham? some ham has gluten in the preservitives if i remember correctly.

[rosetapper23]

Are you still using shampoos or lipsticks/chapsticks with gluten in them? Are you eating frozen hashbrowns? (Some companies use flour in their packaging to keep the hashbrowns from sticking.) Are you using a dedicated toaster for toasting your gluten-free bread? Are you certain that no one is using your condiments (peanut butter, butter, jam, mayo, etc.)? These are just a few areas to consider. Also, do you kiss anyone who might be wearing lipstick or chapstick? If I kiss someone (grandmother or aunt) who's wearing lipstick, my lips swell and turn purple.

When I went gluten free, it took me about 18 months to stop being bitter that I couldn't eat my favorite things. However, over time (it's been over seven years), I've come to embrace gluten-free eating, and I don't miss food that contains gluten. There are now enough products out there that are similar enough (or perhaps I've forgotten?) to gluten-containing foods, I find this diet extremely easy to follow. Of course, when I lived in a home where others ate gluten, it WAS difficult. However, you may find that it gets easier with practice.

Regarding relationships, yes, I understand the difficulties. I'm only separated right now, so I don't date; however, someday when I'm divorced, I plan to ONLY date celiacs or men who religiously follow the primal/paleo diet, since they wouldn't be eating any grains or processed foods. We're fortunate to live during a time when the primal/paleo diet is quite popular, so our prospects are better. I plan to look around for a forum that features this diet, and perhaps I can meet others who view the food world the same way that I do. Having similar eating patterns is important, I think, in a relationship...and I think gluten-free eating is becoming more common for many reasons. Pretty soon, it may not even be considered unusual. I also attend celiac/gluten sensitivity conferences on a regular basis and keep my eyes open for that possible gluten-free soul mate (LOL!).

[T.H.]

...keep getting CC'd. I must be uber sensitive or is that the norm?

That's actually the norm for quite a few beginning celiacs. People with the disease are sensitive to a level that most non-celiacs consider VERY sensitive. And then down here, we take that to an even higher level, LOL. But we can definitely offer some advice! :-)

For eliminating risks, the separate cupboard is good.

Other risks to eliminate:

- Don't share plastic or wooden utensils/items between gluten and gluten free foods - anything that touches your food. Plastic and wood is actually porous as far as proteins are concerned and can release it back into the next food it touches. So any old wooden cutting boards, old wooden spoons, plastic spoons? Don't use them any more with your gluten free food. At all. I managed to salvage some of my wooden stuff by sanding off the outer couple of layers, but that was the only stuff I could keep.

- Glass and stainless steel are good, but they have to be scrubbed down like mad, and don't share 'em. Metal collanders that were used for pasta - just forget it unless you've got hours to waste trying to clean. Any little residue left on the equipment can make you sick, potentially. Which means crevices, cracks, scratches, and small areas that are impossible to scour out can still hold gluten and contaminate your food. Easier to just avoid the pots and pans that are used for gluten and keep a separate set for your use.

- Anything on your spouse's face or skin that you kiss needs to be gluten free, too. Not just their mouth, but lipstick, chapstick, lotion, makeup, hair products (if you kiss hair). Basically, if it goes into your mouth you need it gluten free. So shampoo that might drip over your lips, your own lotion if you ever lick food off your fingers - that sort of thing has gotta be gluten free, too.

- any pets? Their food usually has gluten, too. Dust from the dry food, if inhaled, can be an issue. Or wherever they lick, that's glutened, too.

- When you choose your foods, do you make sure they are gluten free and free from contamination, or just look at the ingredients? Many, many foods may have not gluten ingredients but still be contaminated by gluten (like, say, from a machine nearby that processes flour, it poofs in the air, and drifts over YOUR food). So if you aren't eating gluten free, tested food, you might want to look at that.

It IS very frustrating at first, no question. But it's kind of like getting glasses - you eventually adjust. It'll be different, and sometimes annoying, but it won't be as overwhelming, eventually. :-)

[beebs]

On a larger note, how do people cope in relationships etc? I mean you must have to ask your partner to wash her/his mouth out every time you want to kiss them, if you're single that's going to be unbelievably difficult..."yeah I really want to kiss you but erm, can you wash your mouth out thoroughly first?!", Casanova eat your heart out!!

What a depressing and frustrating illness this is.

My whole family is now gluten free. I just can't afford to get glutened due to very severe symptoms. My DH was happy to comply and lo and behold he had gluten after going gluten free and got really sick, left it awhile - tried again and got really sick again. HIs mother has an autoimmune disease so I wouldn't be surprised if he has celiac or is gluten intolerant.

At the end of the day - its just gluten...ya know - not that big a deal to give up really. If you are feeling that bad then maybe you need to try and get your house totally gluten free.

[Leper Messiah]

Thanks for the replies, very helpful.

Quick question for folk still reading this thread, does anyone have hardly any gastro symptoms (i.e. I can feel a slight tingle in my stomach to know it's not ok but other than that none)? My main symptoms are tiredness, extreme tiredness. Anyone have that and how does it progress, i.e. does it get better the longer you're off gluten for (in terms of the aftermath of getting glutened)? I have ditched the ham and will try something else, not that it matters at the moment of course, it'll be 1-2 weeks of tiredness before it lifts, I guess that's the most frustrating thing, knowing that once you get glutened, you'll be tired for at least the next 1-2 weeks.

In terms of a gluten free home, I'd love that but I have a flat mate and that's a no goer. He's quite good though, respects my gluten free area of the kitchen and other foibles.

Just to clarify, I'm a guy so lipsticks and chapsticks aren't usually a part of my daily routine but duly noted for any girls I'm going out with.

Luckily football and formula 1 is on tv today so I can drown my sorrows with my satelitte subscription, thank god for that eh! =D

[dilettantesteph]

The relationship problem is tricky. I kept getting glutened by my husband. He would brush teeth etc. before. He went gluten free when around me so as to stop making me sick. Later he got diagnosed too, so he needs to be gluten free now for that reason. My daughter is 16 and wondering about how she will ever date. She is incredibly sensitive. So is my 14 year old son. Dating is bad enough without that complication. How do you get someone who hasn't even gotten to know you yet be willing to make that sacrifice for you?

[domesticactivist]

You mentioned you aren't cooking, so what are you eating?

[Leper Messiah]

You mentioned you aren't cooking, so what are you eating?

Microwave rice, gluten free muffins which I eat cold and use the packaging to hold to prevent any CC, rice milk and gluten free bread which I use to make sandwiches (I don't use butter or margarine, just normally ham slices straight on the bread), on top of most things I use gluten free salad cream so at least I have one iota of taste. I also eat a lot of bananas, grapes and satsumas/clementines. And that is by and part largely it I would say.

Probably not healthy long term but the tiredness is so acute I can't be ar*sed going to the hassle of making anything when I'm drained. Also it increases the risk of being glutened by a considerable margin. I will boil rice when I get a bit of time when I'm not being glutened every which way and see if I can tolerate vitamin supplements which I can't at the moment.

[Leper Messiah]

The relationship problem is tricky. I kept getting glutened by my husband. He would brush teeth etc. before. He went gluten free when around me so as to stop making me sick. Later he got diagnosed too, so he needs to be gluten free now for that reason. My daughter is 16 and wondering about how she will ever date. She is incredibly sensitive. So is my 14 year old son. Dating is bad enough without that complication. How do you get someone who hasn't even gotten to know you yet be willing to make that sacrifice for you?

As bad as this sounds you're very lucky your husband has it too, not that I would wish this on anyone but I'm sure you know that it'll make life for you a LOT easier. And also from an understanding point of view, maybe you don't have to drive your point across and feel like a grade A nag now like I'm sure every celiac feels, I certainly do and it's only my flatmate I'm constantly badgering.

And yes re dating that is the dilemma, what of course is worse is that 99% of the time you meet people through social activities that are very risky from a celiac's point of view. In fact there are very few social activities where you meet people that don't involve food or drink. I guess I'm lucky there is places like eharmony I could use when I get better but yeah I'd think even Shrek has a bit of an advantage in the dating scene over the average celiac!!!

[domesticactivist]

Microwave rice, gluten free muffins which I eat cold and use the packaging to hold to prevent any CC, rice milk and gluten free bread which I use to make sandwiches (I don't use butter or margarine, just normally ham slices straight on the bread), on top of most things I use gluten free salad cream so at least I have one iota of taste. I also eat a lot of bananas, grapes and satsumas/clementines. And that is by and part largely it I would say.

Probably not healthy long term but the tiredness is so acute I can't be ar*sed going to the hassle of making anything when I'm drained. Also it increases the risk of being glutened by a considerable margin. I will boil rice when I get a bit of time when I'm not being glutened every which way and see if I can tolerate vitamin supplements which I can't at the moment.

I get that you are too wiped out/overwhelmed to cook, but I've got to say that your diet is mostly sugar and it's hard to see how you'd get enough calories not to feel exhausted. I would feel SO sick if I were eating you diet. Actually, when we first went gluten-free I was feeling 'glutened' all the time. That went away when I stopped eating the packed 'gluten-free' stuff.

Relying heavily on "gluten-free" packaged foods and processed meats is dangerous because:

1. There is no actual gluten-free testing and labeling law in the USA

2. The suggested (not enforced) 20 ppm limit is not low enough for some celiacs

3. Processed meats have other crap in them that isn't good for you and can be cc'd as well.

Do you eat vegetables? Many are good raw, you just need to wash them well before eating. Others are good just steamed, with a bit of lemon or butter on them. Or you can stir fry in coconut oil and put that over your rice.

Have you considered getting a crock-pot? You could do roasts in there, chili, soups, etc without worrying about your housemate. If you have your own cutting board, knife, crock-pot, and one pan you'll be fine. There is a whole website of gluten-free crock-pot recipes at Open Original Shared Link but really it can be as easy as sticking a hunk of meat and some vegetables in there and leaving it on while you are at work. When you come home, dinner and lunch for the next few days is made!

[domesticactivist]

My daughter is 16 and wondering about how she will ever date. She is incredibly sensitive. So is my 14 year old son. Dating is bad enough without that complication. How do you get someone who hasn't even gotten to know you yet be willing to make that sacrifice for you?

You don't ask someone to make a sacrifice for you when you first meet them. When you meet someone, it's not about your whole life. It's about going out for dancing, a movie, a drink, karaoke, a show, kayaking, roller skating, hiking, the park for a homemade picnic etc instead of out to dinner. It's about casually mentioning the issue and quickly explaining in a neutral way (or even flirty... if you want a first kiss this is what you've got to do ). It's not a "sacrifice," it's just doing something else!

As decent people get to know each other they start to care about each other. I've never seen a successful relationship where people didn't modify their lives a bit for each other!

I have an acquaintance who is very happy in her love life... and she is wheelchair-bound with a ventilator. She never let that dictate whether she could find love. She has the confidence to know that she is a person with value, an interesting person, who people love to spend time with. I have another acquaintance who blames his misfortune in love on his big belly and bald head. Actually, it's his attitude on this subject is the problem.

5 years ago I was heading into a divorce, had two kids ages 6 and 7, was starting my first job in years after being a SAHM. I met my current partner when I went out dancing. Neither of us spend a lot of time in bars, but there we were. She was younger, didn't want kids, and was happy with one room in a shared living situation.

What if I'd said to her: "In five years, you'll be seeing my ex-husband every week, will be doing all the cooking and shopping for our special diet, will be on that diet yourself, will be helping home-school the kids, providing childcare so I can work, will be doing most of the outside chores, and will be helping pay the mortgage that's in my name. Oh yeah, and you'll have to put up with my parents not accepting you for at least the first couple years, you'll have to deal with the times I work super long hours as well as the times I'm unemployed."

Well, of course that wouldn't have gone anywhere. But it did, and it works. Here we are, we've created a life together, and we're happy.

[rosetapper23]

Domesticactivist gave you some GREAT advice! I especially would like to follow up on her advice regarding the crockpot. That would be the easiest way to go for you. Cooking in a crockpot is extremely easy, and there are tons of recipes on the Web. All you do is throw in meat or beans, vegetables, potatoes, and a few spices....and then go to work, come home, and eat a nutrition meal. What's even better is that you'll have leftovers for days. All that processed gluten-free food is really not good for you, and eating a lot of fruit is simply adding more sugar to your diet. Eggs are easy to cook, too--simply saute some vegetables like mushrooms, onions, and broccoli and then add a few eggs that you've whipped up in a cup with a little water or milk, and you can also add shredded cheese at the end. This will go a long way to helping you feel better. Also, you should have your Vitamin B-12 and iron levels checked, because this may also be at the root of your problem.

[beebs]

Microwave rice, gluten free muffins which I eat cold and use the packaging to hold to prevent any CC, rice milk and gluten free bread which I use to make sandwiches (I don't use butter or margarine, just normally ham slices straight on the bread), on top of most things I use gluten free salad cream so at least I have one iota of taste. I also eat a lot of bananas, grapes and satsumas/clementines. And that is by and part largely it I would say.

Probably not healthy long term but the tiredness is so acute I can't be ar*sed going to the hassle of making anything when I'm drained. Also it increases the risk of being glutened by a considerable margin. I will boil rice when I get a bit of time when I'm not being glutened every which way and see if I can tolerate vitamin supplements which I can't at the moment.

Not trying to sound like your mother here But you are going to get sick if you keep eating junk like that!

Seriously though - did you check the ingredients in the ham? I got caught out by that in the beginning!!

[T.H.]

Just to check:

What brand of rice milk do you use? A few brands give many celiacs some real trouble. But I'm more familiar with the recipes used in the USA.

I'm assuming by your language that you're not in the USA, would that be right? If you're in the UK, they allow hydrolyzed wheat in a lot of gluten-free products (maybe the rice milk, or salad cream, or ham? I don't know where it usually shows up, I'm afraid). Some celiacs seem to react to gluten-free food that uses this, so that might be worth checking your foods for.

For your microwave rice: do you microwave normal rice, or does this rice come in a packet of some kind? Have you checked it for seasonings or other potential gluten issues, by any chance?

And the ham's already been mentioned, I believe, yeah?

So sorry you're feeling crap right now. The exhaustion is so killer - can't get through it, and so tired that trying to eat around it feels impossible, I know. Hoping that you start to feel better soon.

[oceangirl]

Domesticactivist said it all beautifully and I do agree with her suggestion for making your own meals from whole foods and ditching the "gluten free" prepared foods. You just cannot trust that labeling yet; at least I can't and don't.

In my first years I found I also had trouble with: soy, legumes, dairy, citrus, corn, egg and nightshades. Essentially I ate for 2 years: Salmon, unprocessed meats, chicken, other fish, bananas, cooked greens (even cooked Romaine lettuce to digest it more easily), squash, sweet potatoes, grapes occasionally, rice milk. Fairly simple but it worked and I was able to weed out other culprits with a detailed food/symptom log that I kept for 5 years!

I have, 6 years in, put everything back but soy and legumes as I've always had trouble digesting those. I actually eat VERY little grain, meaning rice, too, as I've found I feel better leaning a bit more toward the Paleo diet.

Anyhow, I sure hope you feel better soon!

Also, my love ALWAYS brushes AND flosses before any making out! He is mostly gluten free, however, as he is fond of his romantic life and it works best when I'm not sick!

lisa

[shayre]

Microwave rice, gluten free muffins which I eat cold and use the packaging to hold to prevent any CC, rice milk and gluten free bread which I use to make sandwiches (I don't use butter or margarine, just normally ham slices straight on the bread), on top of most things I use gluten free salad cream so at least I have one iota of taste. I also eat a lot of bananas, grapes and satsumas/clementines. And that is by and part largely it I would say.

Probably not healthy long term but the tiredness is so acute I can't be ar*sed going to the hassle of making anything when I'm drained. Also it increases the risk of being glutened by a considerable margin. I will boil rice when I get a bit of time when I'm not being glutened every which way and see if I can tolerate vitamin supplements which I can't at the moment.

I was like you when I started out gluten-free too. I was sooooo tired, and I don't know how to cook. It was just easier to buy prepackaged gluten-free food. I had 2 small children (one a new baby) to take care of. I just couldn't get a grip on my life. I realized that I was having issues with all of the packaged gluten-free stuff at some point, and got off of them. I felt better. It wasn't until later that I realized that I was also reacting from gluten UNDER the 20ppm that was in the prepacked stuff. I can't have any of them now. It's hard in the beginning to try to weed out all of the sources. I know that I just felt hopeless. Just keep doing your "due diligence" with it, and keep at it. It will get better. Keep asking questions and looking through older threads on this site. It helped me so much.

By the way, I did react to the rice milk. That one was a surprise for me...they process it with barley. I would call the company of the brand that you drink, and ask. If they do...and tell you that it should be filtered out...don't believe it. Ditch it! My whole family also had to go gluten free. I had stopped getting well...until the house was free of it. I am still working through issues 2 yrs later, but it is much better now. Watch the olive oil too. That was also a surprise source of cc for me too. You very well might be, or have become, allergic to other ingredients too. I also found a problem with dairy, fructose, corn, soy, anything fermented. However, I seem to actually be allergic to corn...just since I went gluten-free. I never had a problem with corn before then.

All of this just takes time, persistence and lots of positive thinking. You will get there:)