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RMP

Am I Overthinking Things?

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I am 21 years old and I have now been gluten free, with a few unintentional slip ups, for about seven months. This is after I had to take a medical leave from college at the beginning of this past school year because I could not function; I was constantly tired, in a daze with brain fog, and sore all over, and my grades suffered tremendously.

Since this event I have been extremely vigilant in doing everything possible to guard my health. When I discovered I had both gluten and soy allergies I cut them both out of my diet and noticed a tremendous improvement in my condition. I have also been treating myself for chronic Lyme Disease, which I have had to deal with on and off for multiple years.

My problem is that I have been so focused and strict about improving my health that I have had some problems with my girlfriend, who believes that I am sacrificing many great pleasures in my zealous rigidity. While she has been very supportive generally (she goes out of her way to look things up for me, make me meals that I can eat, etc) I know it bothers her that I do not stay out until 3 or 4 in the morning like she often likes to do. She also thinks that I go overboard in my attempt to avoid contact with gluten. For example: I played a board games with some friends, the actual game belonged to me, and I made the request that people eat their chocolate wafer cookies (containing gluten) with one hand and play with the other so I did not have to worry about cross contaminating the pieces.

Is my insistence to ere on the side of caution at all times unreasonable? Am I going too far in trying to maintain my health? I made a vow to never allow myself to become sick like that again, but am I taking it to too much of an extreme?

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Personally I wouldn't have said anything to the others about the game pieces. I would have either brought a safe snack for all or would have been careful to keep my hands away from my face and mouth until after the game. Then, if it was my game I would wipe it off and rinse the pieces after they went home.

As far as food goes it sounds like she is being pretty supportive. You two also may have some differences in what you desire for your night life. Do you insist when you are out with friends that she leave with you or is it okay with you if she stays and you go home when you get tired? That difference you need to work out between you.

You say you have been 'treating' yourself for Lyme disease for a long time now. Were you ever diagnosed with Lyme? What are you doing to treat yourself? There are many symptoms that are similiar to Celiac with Lyme. You may be treating yourself for Lyme when you don't actually have if you have not been tested. If you haven't gone to the doctor to be tested for Lyme disease you should do so.

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I have a 4 year old who, while eating a bagel (or other gluten containing food), will start crawling over me and dropping crumbs everywhere! But, hey, kids will do this sort of thing (make messes) but, as long as I don't eat the mess and wash myself off before eating, it's no problem. Watch what goes into your mouth but with things like cross-contamination of things that don't go in your mouth is over-doing it IMO.

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I have to side a bit with RMP here. If all surfaces start becoming contaminated with gluten it's not going to be long before you yourself are cross-contaminated with gluten. If it's something you can toss in the dishwasher, fine, like cups and glasses, but I don't let gluten into my house, period. I don't want it on door handles, kitchen cupboard pulls, things that people touch and then I touch, because it means that even in my own home I have to constantly fight cross-contamination. I find it better to keep the gluten out in the first place, and the best way to do this is to provide gluten free snacks and food for your guests. I make only one exception, when I host one of our neighbourhood coffee get togethers every year. They bring gluten food on their plates, eat it and take it home again. I provide a gluten free plate of food but eat my pieces from another plate in my kitchen. I do wash he door handles when they leave. I do not want to be fearful of touching things in my own house or running around cleaning door knobs. If you consider that obsessive, well, that's fine with me.

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Our gluten sensitivity levels vary. What is a crazy over precaution for one can be inadequate for another. I won't even let gluten into my home. I am sensitive to extremely low levels. You need to find what works for your level of sensitivity. I hope that your girlfriend can be more understanding. My husband finally came around after about three years.

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You say you have been 'treating' yourself for Lyme disease for a long time now. Were you ever diagnosed with Lyme? What are you doing to treat yourself? There are many symptoms that are similiar to Celiac with Lyme. You may be treating yourself for Lyme when you don't actually have if you have not been tested. If you haven't gone to the doctor to be tested for Lyme disease you should do so.

Yes, I was diagnosed with Lyme Disease. When I said 'treating myself' what I really should have said was undergoing treatment with medications prescribed by my doctor, which are antibiotics. My doctor is of the mind that my sudden development of food allergies may be closely intertwined with my Lyme Disease.

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Sometimes I also feel overly cautious but when it comes to health is there really any such thing? We're having company (six adults) here for the weekend and we are preparing their rules. They will likely think I am far too rigid but it's my house and the future of my health depends upon it. As I do not have GI symptoms from ingesting gluten I must make doubly sure everything is organized and that the environment is controlled as much as possible.

Some of us may be a bit OCD, too! :D

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Our gluten sensitivity levels vary. What is a crazy over precaution for one can be inadequate for another. I won't even let gluten into my home. I am sensitive to extremely low levels. You need to find what works for your level of sensitivity. I hope that your girlfriend can be more understanding. My husband finally came around after about three years.

This is a very fair argument. The fact is, I do not really know what my level of sensitivity to gluten is; I guess most of you have figured it out based on how you feel during or after different situations, but my problem is that with Lyme Disease in the mix it can be difficult for me sometimes to discern the difference between feeling ill from gluten and feeling ill from Lyme Disease because of how similar many of their symptoms are.

Do any of you have a good way to really evaluate the depth and sensitivity of my intolerance?

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You have to take the precautions you personally need. I wouldn't have even thought of game pieces being CC'd unless I saw crumbs on the board but that's just me. I am not sensitive to where I have to be that vigilant. (To be honest, if a friend had an allergy so severe that they would react if they touched game pieces with a trace of the food on them, I would find something else to eat.)

Vigilance about gluten isn't a big deal as long as you're not slipping into OCD. For example if you spend 15 minutes trying to wash invisible gluten off your hands, or you feel like you have to wear gloves and a surgical mask outside of your gluten-free apartment, something might be wrong. :P Most celiacs are OK if they keep gluten out of the kitchen and wash their hands before they handle food or eat. Heck, washing your hands is a good habit anyway!

As for the girlfriend, usually conflicts in relationships focus on one thing, like the gluten, but it is indicative of a difference in personal style that you haven't really sorted out. If you stopped being vigilant about the gluten I suspect she would find some other way you were "sacrificing pleasures" (finances, studies, etc.). It sounds like you are more disciplined than she is and chances are that you will be eventually be focused and strict with other things in life. You two need to work through the reason your focus is a problem. What is she feeling that is troublesome and how do you make her whole while you still do what you feel is necessary?

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Yes, I was diagnosed with Lyme Disease. When I said 'treating myself' what I really should have said was undergoing treatment with medications prescribed by my doctor, which are antibiotics. My doctor is of the mind that my sudden development of food allergies may be closely intertwined with my Lyme Disease.

I am being treated for Lyme Disease too, and have the gluten issues. I can't make sandwiches for my husband anymore because touching the bread makes me break out in little clear blisters on my fingers that itch and spread if they're popped. Sometimes I have worn plastic gloves to make his sandwich but I am very careful not to touch wheat in any form.

So I do not think keeping your game clean is over reacting. They could always bring their own game or eat safe foods when they are playing with yours. You have to do what you have to do to stay healthy. Friends will understand that. :)

As for the staying out all night - have you heard of that Spoon Theory that someone thought up for explaining to healthy friends what it's like living with a chronic disease? ( http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ )

I hope that helps!

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I too would be leery of having folks handle game board pieces like that--though actually having all the little crumbs on the game board too could be a problem since the cardboard is harder to clean.

Personally I side with just not allowing gluten in the house. Otherwise its nerve wracking. You never know when in a moment of whatever, you rub your face or lips. If you are at somebody else's place, OK, you actually then do need to be a little hyper-vigilant not to get CC'd. But in your own place, why not just create conditions where you can relax and don't have to worry? You can make gluten free cookies or cake, or buy some ahead of time.

The staying out late: I think your girlfriend needs to realize you just can't given your health problems. She is young and healthy, so wants to have fun. Is it all right for her to go out late with some friends? You two do have to work that one out. It is nice to hear she is very supportive with your diet. For someone who does not have celiac, its easy for them to think we have OCD. My older sister the nurse thinks that of me for instance.

As far as the lymes go, I too had it and got over it. How? By a procedure that now is illegal in the States, but is quite legal and accepted elsewhere. My doctor used the Pap-Imi energy machine on me. Ostensibly for a frozen shoulder (which worked after nothing else did!), but he also detected lymes. I would feel nauseous for a couple of hours after each visit, for the first 6 visits. I went a total of 8. He had me drink lemon water when I had the nausea, which helped.

Later, before I fully knew about the celiac, I told my story and was tested for lymes from a reputable testing center dedicated to detecting such diseases. It was discovered that I actually had the markers of having had lymes previously but was over it. Amazing really, given how intractable it is. For about 4 years after the tick bite I used to get a fever for about 3 days each month, which would then go away. At that time little was known about lymes, so I had no idea what was going on, nor did my doctors. I was constantly taking detox and anti candida herbs, which no doubt helped. I also went off most of the gluten which also helped (though at that time I didn't know i needed to go off all trace gluten). But after the Pap-Imi machine treatments, the fevers went away.

Reason I mention it is that a lengthy antibiotic regime can be very hard on the body. My chiropractor had lymes and did not make it. She just up and died one night. I used to tell her about the Pap Imi machine and that she should take a vacation in Europe, Australia or Mexico and get treatment. However she was always too busy to get away. Now she isn't around which is sad since she was a good egg. Of course she had diabetes too and a compromised thyroid due to a freak car accident from years previous, which didn't help.

Nevertheless, if you have some time off from your studies and a bit of cash, you might want to look into it. Herb Cain, the former long term San Francisco columnist also tried the Pap-Imi for some condition or other and he was also greatly helped.

The guy who discovered it was a physicist at UCLA. He coincidentally had cancer when he made this machine for entirely other purposes. His cancer went away much to his surprise. He then tried it on other people and found it worked against their cancers as well as other conditions. The government in the US went against it when someone died while using the machine. My thinking though is that it was likely just a coincidence since most practitioners were treating people who were severely ill and barely hanging on (by contrast I was a lot healthier than the average patient).

How many people die from using antibiotics for two years straight like my old chiropractor?? The real deal I think is that the AMA didn't like the competition nor do they often accept some new method or technology for healing, especially if its electrically based energy healing. Whereas in Europe, Australia, etc. it has been found to be quite safe since its a non invasive technology.

Your decision is your decision, however i just thought I'd put it out there since I am the only person i know who formerly has had lymes disease.

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My house,My rules, NO gluten!

Even my pets are gluten free, if that makes me OCD so be it. :P

I am super sensitive, I have to take care not to get CC in the rest of the world ,but my home is a safe place . :)

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My house,My rules, NO gluten!

Even my pets are gluten free, if that makes me OCD so be it. :P

I am super sensitive, I have to take care not to get CC in the rest of the world ,but my home is a safe place . :)

Exactly. Although I am not a sensitive celiac we have a no gluten allowed house. Then there is absolutely no quesetion of whether this or that is safe. It just is.

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My house,My rules, NO gluten!

Even my pets are gluten free, if that makes me OCD so be it. :P

I am super sensitive, I have to take care not to get CC in the rest of the world ,but my home is a safe place . :)

This is the way it works at my place too. My place, my game, I will provide gluten-free snacks for all. No gluten is allowed in. We have taken games to others houses as well where we let them provide the drinks and we brought the games and ALL snacks. Our friends have been much more understanding/accomodating I guess. People who are not understanding are no longer our friends. But I am also are always careful to take responsibility for myself and I never ask someoen to make something safe for me. I OFFER to make the food for everyone if it's doable, I NEVER expect them to make thigns safe for me. If I were in a situation playing someone elses game at their house and everyone was eating gluteny snacks and touching the game I would be very careful not to eat anything or touch my face while there. It is a little much to expect people that are given snacks already when the game is all set up and going to remember not touch the game once in the situation or to only eat with one hand. So I think you need to just plan ahead for the future and either not use your game and not eat if everyone else is eating and touchign things you need to touch OR ask if you can provide all snacks so you won't have to worry about cc at all. Chips and salsa, popcorn or Lays potato chips make good game snacks :)

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I loved the Spoon Theory Link! Thank you for that.

I've told my family and friends that I need to be Howie Mendel (OCD) when it comes to gluten.

I think it was a good move to keep your game pieces gluten-free. :)

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My house,My rules, NO gluten!

Even my pets are gluten free, if that makes me OCD so be it. :P

I am super sensitive, I have to take care not to get CC in the rest of the world ,but my home is a safe place . :)

Ditto! It's not worth the risk. Not at all. Finding gluten-free dog food that my puppies actually like has been a chore, but even they have to sacrifice for the greater good. If they eat something glutenous and then lick my son??? No way.

My house. My family. My dogs. My rules. NO GLUTEN. :D

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Another one here who doesn't allow gluten in my home or even in my backyard. The downstairs suite where our 3 teenagers live is allowed gluten but they have to rinse their mouths and wash their hands before they come upstairs and I almost never go down there at all. (We own an up/down duplex, upstairs is where myself, DH and the little kids live and that part of the house is 100% gluten free).

I don't even want my backyard contaminated. The little kids eat 100% gluten free at home and away from the home because I got tired of them making me sick with kisses and cuddles. My hubby eats 100% gluten free at home and if he eats gluten while he's out he is very careful to wash up before he has any contact with me. If we eat out together he eats gluten free so we can share and he can still kiss me.

I would not take a board game over to a friend's house to play and nobody would be eating gluten in my home because I don't want my things to be contaminated.

If my son has friends over and they want to play video games or watch a movie on the big TV upstairs while we are out I clean the living room and computer area thoroughly when we get home just in case they were sneaking gluten upstairs or didn't wash up before using my computer, remote or game controllers.

Maybe I'm being over vigilant but my time and my health are important and this is just how life needs to be around here to keep mama healthy.

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I agree with everyone who said just don't let gluten in the house. I can't imagine a friend who wouldn't be willing to eat a non-gluten containing snack instead of a gluten one while playing with your game pieces, especially if you want to be able to snack while playing, too.

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Do any of you have a good way to really evaluate the depth and sensitivity of my intolerance?

Not really. That is a very difficult thing, even for people without other issues. Add medical complications and other food intolerances and you have a complicated situation. It is something that only you can evaluate. Keep a food diary with what you eat and how you feel. One trick I have come up with to see if a particular item is bothering me is to eat more of it than usual, like 3 times. If one serving maybe made me feel a bit off, then I have 3 times that amount and I can be more certain that it did bother me.

You could cut out all processed foods and see if your health improves. You should be able to tell in a couple of weeks.

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