Coping With The Isolation And Rage

[whatever]

I am so frustrated, I been seeing a naturopath and he put me on the auto immune paleo diet and it's so restrictive, I feel isolated all the time and because it's so restrictive I sometimes feel like an anorexic because I really can't eat anything.   I feel discriminated against everywhere I turn because I'm the wierd special needs person and most people in this society don't have clue so I have to educate them.   It's exhausting plus he said I shouldn't date anyone who eats gluten so I might as be either a hermit or join a convent.   I feel like life is over and what's the point of living, I can't enjoy food anymore, I can't join in social gatherings without it costing me an arm and a leg and bringing half my kitcken.   I can't eat anything from a package, everything has to be made from scratch and I sometimes have a life and don't have the energy to live a little and be susy homemaker all at the same time.

 

What do people do to cope with this and the feelings of isolation and how do you manage not having to cook every day and doing other things other than obsessing about food constantly?

[kareng]

Why are you eating this way? Maybe you don't need to. Seems like a very restrictive way to eat without an actual diagnosis of anything. And, by eating gluten-free, you can't get diagnosed for Celiac.

Also, people with Celiac date gluten eaters. I know a girl that is Celiac that is getting married soon - to a gluten eater.

[BlessedMommy]

Yes, I agree with the above. I'm married to a gluten eater and it's fine.

 

Many people, even people who need gluten free, do just fine with gluten free grains and a moderate amount of prepackaged food. You may want to seek a 2nd medical opinion on your diet and on any health conditions that you have. There may be a way to manage them without doing a super restrictive diet.

 

Welcome to the forum!

[whatever]

Why are you eating this way? Maybe you don't need to. Seems like a very restrictive way to eat without an actual diagnosis of anything. And, by eating gluten-free, you can't get diagnosed for Celiac.

Also, people with Celiac date gluten eaters. I know a girl that is Celiac that is getting married soon - to a gluten eater.

Thanks, he did diagnose me with celiac disease, mainly because of how severe my symptoms are when I do eat gluten.   He also stated that I have a greater chance of getting glutened by dating someone who eats it....makes sense....if I kiss him and he's a crumb in there I get affected, I used to date someone who ate it and logistically it was a nightmare plus super expensive.   Not only that but I'm sure some of that gluten makes it's way into his body fluids....I mean look at the animals we eat....if they eat genetically modified corn it affects them on a cellular level then effects us....we even get most of our exposure to antibiotics that way.  

 

The diet is supposed to be an elimination diet so I can figure out what else I react to and to allow my body to heal.   I already know I can't do dairy and corn which happen to be cross reactive foods.   I'm starting to figure out I might have an issue with fructans and I still apparently react to bananas for some reason.   All grains have gluten in them to one degree or another, saying they are gluten free isn't true.   Even though rice has the least amount, it's still there and if I'm really super sensitive probly shouldn't have it.  I just feel like I life is over and I can't enjoy food while I watch everyone else enjoying themselves and feel excluded from life.   I'm miserable and feel alone in this

[SMRI]

I think your naturopath needs to change.  Sorry, can't date someone that eats gluten, really, that's a bit extreme.  I agree with the others, why are you on this diet to begin with?  What training or schooling does this person have to make these recommendations?  I'd find someone else with a medical background to give you information about what you should and should not be doing with your diet.....

[whatever]

I think your naturopath needs to change.  Sorry, can't date someone that eats gluten, really, that's a bit extreme.  I agree with the others, why are you on this diet to begin with?  What training or schooling does this person have to make these recommendations?  I'd find someone else with a medical background to give you information about what you should and should not be doing with your diet.....

I have been diagnosed with celiac disease that's why I have to eat this way, though I figured that out long before I got diagnosed.   A naturopath is a medical doctor, they cut up cadavers just like other allopathic doctors only they actually get more schooling than the traditional doctors by about 2-4 years and they are trained in nutrition unlike regular doctors which are pretty clueless.   In order to avoid cross contamination I can't use the same toaster, microwave, etc...if they have a crumb and I kiss them it can gluten me....it's happened.   Often times when I was dating someone who did eat the gluten I couldn't eat or had to run to the store just so I could have food and then he would want to stop at mcdonalds while I was stuck eating nothing or just eating basically leaves and still feeling hungry as some chicken in fast food places has gluten added to it, it's not like their cows are a great choice since they are loaded with hormones and other stuff that makes this country one of the fattest and sickest in the world.  I don't trust allopathic doctors, they are incompetent, I watched them kill my mother, put me on disability and misdiagnose me the whole time plus they have a sorry track record for diagnosing celiac because they can't recognize an auto immune response when it's under their nose.   Like when the doctor didn't want to hear about how I couldn't move my arm and the pain I was in he only wanted to focus on my stomach cramps....that's how those mainstream doctors are and I hate them.   I would much rather trust a naturopath, at they don't throw pills at people and get all apothetic.    So far though no one tells me how they cope with the huge life change.   I can't even eat a regular turkey dinner at thanksgiving for crying out loud and most people won't go out of their way to make anything gluten free so I still have to bring my own food just to eat with other people while everyone else gets to save their money by basically having a pot luck.   It's not fair and the fact that my needs are ignored just tells me people don't really care

[kareng]

I think we are trying to tell you that none of us have to cope with the extremes this person is putting you through. Naturopaths rarely do the actual tests needed to diagnose Celiac, which is another reason for our concern.  We hate to see you suffer for no reason or miss another disease that might be causing your problems.

 

There are lots of threads about dating on here. People just ask the date to brush their teeth or they make a picnic so that everything is gluten-free.  (just an example).  We eat lots of things and even find ways to go out with friends.  Read around and see how we all handle it.  We have a dinner chat thread.  Some of the people on there have multiple food intolerances but seem to find lots of things to eat - some are more gourmet cooks than others.

 

 

https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/

[whatever]

I think we are trying to tell you that none of us have to cope with the extremes this person is putting you through. Naturopaths rarely do the actual tests needed to diagnose Celiac, which is another reason for our concern.  We hate to see you suffer for no reason or miss another disease that might be causing your problems.

 

There are lots of threads about dating on here. People just ask the date to brush their teeth or they make a picnic so that everything is gluten-free.  (just an example).  We eat lots of things and even find ways to go out with friends.  Read around and see how we all handle it.  We have a dinner chat thread.  Some of the people on there have multiple food intolerances but seem to find lots of things to eat - some are more gourmet cooks than others.

Thanks, well my so called doctors (idiots) didn't do the test right, told me to look stuff up on the internet then did a colonoscopy instead of going down my throat for an actual test of the small intestine.   Doctors are stupid and they don't care....they even acted all bothered that I would dare call them to ask questions and after telling them I was having difficulty finding accurate information on the internet the nurse got all flustered and told me to look it up on the internet.   The didn't care that I was having difficulty walking, numbness, tingling, anxiety attacks, diareahea, cramps, fatigue, inability to move my arms or grasp objects.   Then there's the depression the back pain and so called fibromyalgia.   I was on disability and getting worse.   Those symptoms went away along with a slew of others when I stopped eating gluten....but when I was with my exboyfriend I would get gluttened sometimes and my friends really didn't make an effort to make me feel included other than invite me but I still had to cook my own food while everyone else got to eat for free basically.   I don't need a test to know I have it, I watched my mother suffer similarly and she died at 46, she pretty much ate herself to death.   My cousin has similar digestive issues and of course the doctors are useless but she knows she gets sick when she eats gluten.   I'm just the first one to figure it out.   I've been suffering with this my whole life.   I also lost my gallbladder to it and have other digestive and malnutrition issues because of it.  How much more evidence do I need?   Half the time those tests have false negatives.

[BlessedMommy]

It's a blessing, when people don't attempt to cook for me, then I don't have to worry about getting glutened by their cooking. It's extremely difficult for someone who doesn't have celiac to cook the celiac way. 

 

The reality of the celiac life is bring your own food everywhere. That way you're happy and healthy and can focus on the fellowship and friendship without getting sick. 

 

I worked with a naturopath years ago. She, of all people, should have known that people should get tested for celiac before quitting gluten (she was a medically diagnosed celiac, blood and biopsy), but she advised me and my kids to go gluten free. Going gluten free permanently eliminated my chance for a diagnosis (I had severe complications when attempting to gluten challenge and had to drop the idea for the sake of staying alive and not getting disabled) and I'm not entirely sure that my kids should have ever tried G.F. to begin with. They're about 1 month into a gluten challenge and doing just fine with the gluten. 

 

I know that the subject of cross reactivity is a controversial one and I'm not wanting to argue with anyone, but to this date, I have never seen any scientific peer reviewed studies validating the idea that celiacs have to cut out all sorts of foods on the basis on them cross reacting or that celiacs can't have gluten free grains. I think that ideas like that only serve to make celiacs more frustrated and upset and make their lives more difficult. 

 

If you do plan to stay G.F. for life, this is your new reality. You have to make it work for you without constant frustration, deprivation, and isolation. And part of that may include carefully evaluating any advice that you have been given, along with the basis for that advice.

 

I wish you the best. 

[LauraTX]

Welcome to the forum.  If you feel that at this time, a second opinion evaluation of your dietary restrictions is not necessary (although I highly recommend that), there are still a few things that can make coping easier.  Having a permanent medical condition like this can be socially isolating, anxiety-inducing, and so forth.  Talking with a counselor or other professional can help with coping skills, and just help you get through the transition phase and the grief.  There are counselors who specialize in helping people with chronic diseases, but any should do, just pick someone you feel you can comfortably open up to.  

 

On the cooking and preparation end, cooking in batches ahead of time can be greatly helpful for when you are unable to or just can't cook that day.  I have other conditions that can make me ill on some days, so I make my own frozen dinners.  I will do individual portions of things, ones big enough for my husband and I to eat on for a day or two, freezer meals where you freeze meat +veggies in a bag and throw it in the crock pot, etc.  You can make your own granola bars to bring as snacks, and those and any baked good will keep in the freezer if you wrap it tightly.    For going to someone else's house, I will take a meal for me in a single microwaveable container, so all I have to mess with is popping it in the microwave and I can use paper towels as a barrier, etc.  If it isn't a place where I can heat up my meal, you can search the forum here for tons of ideas for bringing lunches or snacks with you to work and other places.  There are also many helpful discussions on traveling... many of us will bring some basic things so we can cook for ourselves while on the road.

 

When it comes to dating, almost all of the people on this forum who are married are married to gluten eaters.  For dating, host a romantic picnic where you bring the food, or a dinner/movie at your house.  There are ways around the food problem, and if the guy doesn't want to be supportive of your dietary restrictions then he isn't really the one for you anyways.  Once you get really involved with someone, they may want to start eating the same foods as you so they can be closer to you and not have to worry about what is lingering in their mouth.  A lot of people on here have totally gluten-free kitchens, and their spouses eat gluten-free at home because they want to keep a safe environment for the one they love.  (Myself and my husband do this)

 

Meal prep/planning threads:

https://www.celiac.com/forums/topic/88488-im-tired-of-cooking/

https://www.celiac.com/forums/topic/108705-meal-planning-for-the-newly-diagnosed-challenge/

 

 

Travel/Out of house links:

https://www.celiac.com/forums/topic/105230-1st-holiday-season-after-dx-how-did-you-feeldocope/page-2#entry896956

https://www.celiac.com/forums/topic/107882-whats-in-your-kitchen-kit

https://www.celiac.com/forums/topic/107787-sit-down-dinner-wedding-reception-help/

 

Helpful forum links on Dating:

https://www.celiac.com/forums/topic/106154-dating-thoughts-and-profile-help/

https://www.celiac.com/forums/topic/108573-dating-seems-impossible/

https://www.celiac.com/forums/topic/107982-dating-w-celiac/

https://www.celiac.com/forums/topic/107966-how-to-approach-dating/

[bartfull]

How are you feeling now in the restricted diet? If you are feeling OK, it's time to start a food and symptom diary and start adding foods back. While a lot of us have further intolerances, not everyone with celiac does.

 

Cross-reactivity is a myth, plain and simple. The first food you should trial is corn because corn is in everything. If you can successfully eat corn it will open up a whole new world of foods to you.

 

You say:

" Not only that but I'm sure some of that gluten makes it's way into his body fluids....I mean look at the animals we eat....if they eat genetically modified corn it affects them on a cellular level then effects us....we even get most of our exposure to antibiotics that way.

 

The diet is supposed to be an elimination diet so I can figure out what else I react to and to allow my body to heal. I already know I can't do dairy and corn which happen to be cross reactive foods. I'm starting to figure out I might have an issue with fructans and I still apparently react to bananas for some reason. All grains have gluten in them to one degree or another, saying they are gluten free isn't true. Even though rice has the least amount, it's still there and if I'm really super sensitive probly shouldn't have it."

 

OK, first of all, gluten does NOT make its way into bodily fluids. Seriously.

And although it's true that other grains have gluten, it is only the gluten from wheat rye and barley that celiacs react to. Almost all of us here eat rice on a regular basis and it doesn't cause us any problems at all.

 

You've already been told that quite a few of us date or are married to gluten eaters. If he brushes his teeth after eating gluten you can kiss him all you want. If you share the same kitchen all you need to do is have a seperate toaster and condiments as long as he's not a slob who spreads gluten crumbs everywhere.

 

I'm not saying it isn't a big adjustment but it's one we have to make. And there are so many people who are worse off than we are! Some folks have diabetes. Some have cancer. We ALL eventually get something that we need to adjust to. But at least WE can stay healthy by changing our diets. We don't need medications or surgeries like a lot of folks do.

[StephanieL]

First off your language is pretty derogatory and rude and perhaps changing that may help you get further on forms and in life in general.  Calling anyone a re%$#d is truly offensive.

 

You aren't entitled to a free meal. You aren't entitled to everything everyone else has.  People are inviting you to thing, they want you there. So what if you have to take your own food or eat before?  Many people for many reasons live like that.  Allergies, diabetics, tube fed people.  Is it fun, no but it is what you need to do to take care of yourself.  

 

Your Dr. seems to be pretty extreme and it often isn't necessary.  A separate toaster, sure.  A different microwave? I've never heard that's a necessity. Covering things should be plenty.  

 

How do you cope?  I hate to tell you this but you buck the hell up and deal. It isn't a life sentence, its a change in diet for your health. You seem to know what you need to do but you want everyone else to make your life easier for you and that's just not reality.  YOU make a choice to be healthy and YOU make the choice to be happy.  It really is that easy. 

[lapetiteassiette]

Hi Whatever, I totally feel your frustration, because I am currently going thru the same thing, though my diagnosis is different. I have an auto-immune disorder called Mastocytosis. I have reactions to foods, medications & environmental factors like pollen, wood smoke, mold &  mildew.

 

If you have not been to an MD for diagnosis you should. Either a gastroenterologist or an allergist, or both, because is sounds like you could have issues that are more complicated than celiac. Naturopathic doctors are not the best to see for these disorders unless they specialize in gut issues and are working in tandem with a gastro doc.

 

If you do not take the time to re-adjust to your diagnosis you will not feel better. There are days when I feel like my head is going to explode because I am so hungry and I have to think so hard about what I can eat. This has caused me a lot of stress and anxiety and I have been dealing with this for 15 years gluten free and about 4 years with the Mastocytosis diagnosis. So, I finally decided to give myself a break and prioritize my allergy sensitivities. The things that give me the most trouble in the food department are sulphites, wheat, dairy - including eggs, yeast, fermented foods. Bread is out most days, but some gluten-free toast once a week I can tolerate. I can't even go to brew pubs anymore because there is so much yeast in the air!

 

I am a baker, so eating gluten free is not an issue for me nor is it an issue for my Husband who has no food issues; he can eat anything. Gluten free food is fairly readily available if not locally to you, on-line. So, you should be able to sort that out and keep educating friends and family who do not support you in this, because you need to take care of you. As you heal your example will help educate them, hopefully.

 

I have decided that at least once a week, if life is stressful, I cheat a little with food and drink I know will allow me to socialize if I am careful in my consumption. A glass of wine occasionally will not cause too much problem if I limit it to one glass and stay a way from cheese at the same time. If I am not feeling well enough for wine, I order mineral water with an orange or lime wedge so I can at least be social. Restaurant food is a real crap shoot because, unless they have a dedicated kitchen you will get cross contamination. So just try to limit your exposure. Stay a way for sure from french fries because they can be dusted in flour and fried in oil that is used for other breaded items. Ask for dressing on the side, since they can hide ingredients that will make you un-well. Actually, ask for any kind of sauce or dressing on the side. If you try some and your tongue reacts, just eat what you have ordered plain, save yourself the pain. Beer you have GOT to sat away from. If you like beer there are some great gluten free ones out there. Just make sure that they are gluten-free and not 'omission' style. The Omission style beers still have 20ppm of gluten and as it sits the gluten begins to increase as it feeds on the yeast. Harvest Brewers make beers from gluten free grains and nuts.

 

Stop worrying about what other people think about your questions in a social setting regarding food ingredients. Their issues are theirs. If they can't be supportive of your needs, then maybe you need new friends? I don't understand this attitude from people, that you are some how a drag or a problem because you have foods issues. If you know in advance that a social occasion could be problematic, make sure you eat before you go, that way you are covered. If, say at a pot luck or bar-b-que someone brings salad, fruit or green, you could eat that and ask for a plain grilled burger. The bread with the meat is not a good combination anyway, so you will be ahead of the game. Lettuce makes a better 'bun'.

 

You can do this! You want to feel better, right? You just need to take a deep breath, relax and focus on what you CAN eat and don't worry about the rest. This is a huge life altering event. It will take some time and patience. Don't be concerned about feelings of selfishness, because you have to be in this instance. 

[SMRI]

Thanks, he did diagnose me with celiac disease, mainly because of how severe my symptoms are when I do eat gluten.   He also stated that I have a greater chance of getting glutened by dating someone who eats it....makes sense....if I kiss him and he's a crumb in there I get affected, I used to date someone who ate it and logistically it was a nightmare plus super expensive.   Not only that but I'm sure some of that gluten makes it's way into his body fluids....I mean look at the animals we eat....if they eat genetically modified corn it affects them on a cellular level then effects us....we even get most of our exposure to antibiotics that way.  

 

The diet is supposed to be an elimination diet so I can figure out what else I react to and to allow my body to heal.   I already know I can't do dairy and corn which happen to be cross reactive foods.   I'm starting to figure out I might have an issue with fructans and I still apparently react to bananas for some reason.   All grains have gluten in them to one degree or another, saying they are gluten free isn't true.   Even though rice has the least amount, it's still there and if I'm really super sensitive probly shouldn't have it.  I just feel like I life is over and I can't enjoy food while I watch everyone else enjoying themselves and feel excluded from life.   I'm miserable and feel alone in this

 

How were you diagnosed?  Rice is a grain, and it's considered gluten free and enjoyed but other people with Celiacs.  THere are 1000's of people with Celiac, you are far from alone--and keep in mind, everyone responding to you is also Celiac...

 

I have been diagnosed with celiac disease that's why I have to eat this way, though I figured that out long before I got diagnosed.   A naturopath is a medical doctor, they cut up cadavers just like other allopathic doctors only they actually get more schooling than the traditional doctors by about 2-4 years and they are trained in nutrition unlike regular doctors which are pretty clueless.   In order to avoid cross contamination I can't use the same toaster, microwave, etc...if they have a crumb and I kiss them it can gluten me....it's happened.   Often times when I was dating someone who did eat the gluten I couldn't eat or had to run to the store just so I could have food and then he would want to stop at mcdonalds while I was stuck eating nothing or just eating basically leaves and still feeling hungry as some chicken in fast food places has gluten added to it, it's not like their cows are a great choice since they are loaded with hormones and other stuff that makes this country one of the fattest and sickest in the world.  I don't trust allopathic doctors, they are incompetent, I watched them kill my mother, put me on disability and misdiagnose me the whole time plus they have a sorry track record for diagnosing celiac because they can't recognize an auto immune response when it's under their nose.   Like when the doctor didn't want to hear about how I couldn't move my arm and the pain I was in he only wanted to focus on my stomach cramps....that's how those mainstream doctors are and I hate them.   I would much rather trust a naturopath, at they don't throw pills at people and get all apothetic.    So far though no one tells me how they cope with the huge life change.   I can't even eat a regular turkey dinner at thanksgiving for crying out loud and most people won't go out of their way to make anything gluten free so I still have to bring my own food just to eat with other people while everyone else gets to save their money by basically having a pot luck.   It's not fair and the fact that my needs are ignored just tells me people don't really care

 

Why on earth can you not have Thanksgiving turkey?  Turkey is gluten-free as long as you don't but stuffing in the bird or use gluten-free bread to make the stuffing.  Potatoes are gluten-free, make your gravy with corn starch...what else don't you think you can eat.  You trust your "doctor" but think "allopatic" dr's are stupid yet your "Naturopath" is filling your head with misinformation left and right. Odd.....

 

How do I cope, buy buying food I've always bought, only sometimes it has to be gluten-free (bread for example) vs the other stuff.  It's really not that hard, but yes, you do have to double check everything, so what?

 

How is anyone saving money at a pot-luck?  A pot-luck by definition is everyone brings a dish to pass--so, you are bringing food for one vs food for many...and probably spending way less doing that.

 

I haven't had a single pill "thrown at me" since my celiac diagnosis....hummmmm

[whatever]

How were you diagnosed?  Rice is a grain, and it's considered gluten free and enjoyed but other people with Celiacs.  THere are 1000's of people with Celiac, you are far from alone--and keep in mind, everyone responding to you is also Celiac...

 

 

Why on earth can you not have Thanksgiving turkey?  Turkey is gluten-free as long as you don't but stuffing in the bird or use gluten-free bread to make the stuffing.  Potatoes are gluten-free, make your gravy with corn starch...what else don't you think you can eat.  You trust your "doctor" but think "allopatic" dr's are stupid yet your "Naturopath" is filling your head with misinformation left and right. Odd.....

 

How do I cope, buy buying food I've always bought, only sometimes it has to be gluten-free (bread for example) vs the other stuff.  It's really not that hard, but yes, you do have to double check everything, so what?

 

How is anyone saving money at a pot-luck?  A pot-luck by definition is everyone brings a dish to pass--so, you are bringing food for one vs food for many...and probably spending way less doing that.

 

I haven't had a single pill "thrown at me" since my celiac diagnosis....hummmmm

Some turkey and some chicken actually have gluten put on them by the manufacturer, some rotisserie chicken has it as well.  When I went to my friends house as she is my only family, they put cream of mushroom in the mashed potatoes, had their bean casserole and all the other dishes besides cranberry were loaded with gluten.   So as it turned out as it has on many occasions, I had to bring several side dishes just so I could eat with them and share those side dishes as well, so while everyone brought one thing I had to bring several things in a giant cooler and her mother said she thinks it's all in my head.   So it costs me more and I'm on disability so it's not like I have all this money I can throw around.   When I'm at work, everyone enjoys cookies, cakes and all kinds of goodies and when they tell me I should have some I have to say no, then I feel left out, just like at all the family gatherings where everyone is eating everything and if I only have enough money to bring one thing or it's just a huge hassle to lug around a huge bad as I'm the passenger in the car I have to sit quietly and watch everyone else eating what I used to love and while they feel all included in this little family shin dig I feel like the odd ball and I'm still hungry but I guess I gotta buck it up right? 

 

I'm also on a special elimination diet to see if I'm reacting to other foods so I can't buy packaged foods I have to make everything from scratch.   No corn, no eggs, no grains of any kind, no dairy, no caffeine, no chocolate, no sugars, no nightshades, no dried herbs, only fruit (limit 2 a day), vegies, meat.  I can have coconut oil but found olive oil too viscous as I don't have a gallbladder, so it's not that easy.  Everything is plain jane.  Add to that I've lost everything else in my life and the one thing I had left I lost too.  I lost my mother, my childhood, my sense of normalcy, my son, my family....so yeah, food is important but I can't even enjoy that.

[whatever]

How were you diagnosed?  Rice is a grain, and it's considered gluten free and enjoyed but other people with Celiacs.  THere are 1000's of people with Celiac, you are far from alone--and keep in mind, everyone responding to you is also Celiac...

 

 

Why on earth can you not have Thanksgiving turkey?  Turkey is gluten-free as long as you don't but stuffing in the bird or use gluten-free bread to make the stuffing.  Potatoes are gluten-free, make your gravy with corn starch...what else don't you think you can eat.  You trust your "doctor" but think "allopatic" dr's are stupid yet your "Naturopath" is filling your head with misinformation left and right. Odd.....

 

How do I cope, buy buying food I've always bought, only sometimes it has to be gluten-free (bread for example) vs the other stuff.  It's really not that hard, but yes, you do have to double check everything, so what?

 

How is anyone saving money at a pot-luck?  A pot-luck by definition is everyone brings a dish to pass--so, you are bringing food for one vs food for many...and probably spending way less doing that.

 

I haven't had a single pill "thrown at me" since my celiac diagnosis....hummmmm

Nope I would never trust an alopathic doctor, they take on average 10 years to diagnose celiac, they are apathetic, and they do throw pills at people especially when they don't know what else to do, they get kick backs from every prescription they write and as long as you are chronically sick they have a repeat customer.   Besides they killed my mother and thought it perfectly fine to leave a child in charge of changing her bandages and scraping her bones and being in charge of her living and dying.   They never cared, they also held me down when I was burned and used a hot power sprayer on my fresh burn.   They twisted needles when it wasn't necessary, they told me I never did enough to take care of my mother and when the one time she was investigated out of all 150 times of being reported the counselor said that if I didn't tell her what she wanted to hear that she would take me away from my mother.   When I was blind and puking my brains out they said it was stress and did nothing.   They've been nothing but neglectful of me my entire life and I don't eat thanksgiving at my house I go to my friend's since she's the only family I got since my own family could care less, just like the rest of society

[StephanieL]

I am very sorry for all you have been through. Honestly, it sounds like you need some therapy to deal with issues OTHER than your Celiac diagnosis.  

[whatever]

Nope I would never trust an alopathic doctor, they take on average 10 years to diagnose celiac, they are apathetic, and they do throw pills at people especially when they don't know what else to do, they get kick backs from every prescription they write and as long as you are chronically sick they have a repeat customer.   Besides they killed my mother and thought it perfectly fine to leave a child in charge of changing her bandages and scraping her bones and being in charge of her living and dying.   They never cared, they also held me down when I was burned and used a hot power sprayer on my fresh burn.   They twisted needles when it wasn't necessary, they told me I never did enough to take care of my mother and when the one time she was investigated out of all 150 times of being reported the counselor said that if I didn't tell her what she wanted to hear that she would take me away from my mother.   When I was blind and puking my brains out they said it was stress and did nothing.   They've been nothing but neglectful of me my entire life and I don't eat thanksgiving at my house I go to my friend's since she's the only family I got since my own family could care less, just like the rest of society

And another thing, my friend who is the only family I have is dying of cancer because of the doctors and their incompetence, I should know I had to do surgery on my mother from the ages of 12-15, I've spent the last 38 years studying nutrition, alternative medicine, exercise science, psychology, the politics of healthcare and it's broke down system, I know how poor the education and medical care is in this country, we rank 37th in both out of the other developed countries.   America is fat and sick for a reason and it's making some people wealthy but people are too busy and tired to notice and because their education is ranked 37th also they don't understand, they are simply taught to pass a test, do passive learning and follow the status quo and if anyone steps out of line that's what political correctness is for.   She didn't have to die and I didn't have to lose my childhood and end up on disability but because people care more about industry and profits and not adjust their priorities a little more in line with reality they lose money long term.   I have a right to be angry and the fact is our food supply is poisoned and I didn't have to get sick either but it's what they want.

[SMRI]

Nope I would never trust an alopathic doctor, they take on average 10 years to diagnose celiac, they are apathetic, and they do throw pills at people especially when they don't know what else to do, they get kick backs from every prescription they write and as long as you are chronically sick they have a repeat customer.   Besides they killed my mother and thought it perfectly fine to leave a child in charge of changing her bandages and scraping her bones and being in charge of her living and dying.   They never cared, they also held me down when I was burned and used a hot power sprayer on my fresh burn.   They twisted needles when it wasn't necessary, they told me I never did enough to take care of my mother and when the one time she was investigated out of all 150 times of being reported the counselor said that if I didn't tell her what she wanted to hear that she would take me away from my mother.   When I was blind and puking my brains out they said it was stress and did nothing.   They've been nothing but neglectful of me my entire life and I don't eat thanksgiving at my house I go to my friend's since she's the only family I got since my own family could care less, just like the rest of society

 

 

Hummm, I was diagnosed in about 2 hours.....

 

Sorry, my experience with real doctors is no where near this and I agree, perhaps you need to seek out help for things other than Celiac....

[whatever]

I am very sorry for all you have been through. Honestly, it sounds like you need some therapy to deal with issues OTHER than your Celiac diagnosis.  

Thanks, I been in therapy most of my life finally seeing one who's specialty is PTSD at least I'm not bipolar though I was misdiagnosed that when my thyroid went haywire.   My moods are quite stable though, I just been through similar stuff as a war veteran, the only difference is they didn't go through it alone, were adults and usually had a choice.   Unfornately there is no support group for plain old PTSD, I gotta kill someone in another country for that privilege.   Celiac just is the icing on the cake, thanks though

[whatever]

Hi Whatever, I totally feel your frustration, because I am currently going thru the same thing, though my diagnosis is different. I have an auto-immune disorder called Mastocytosis. I have reactions to foods, medications & environmental factors like pollen, wood smoke, mold &  mildew.

 

If you have not been to an MD for diagnosis you should. Either a gastroenterologist or an allergist, or both, because is sounds like you could have issues that are more complicated than celiac. Naturopathic doctors are not the best to see for these disorders unless they specialize in gut issues and are working in tandem with a gastro doc.

 

If you do not take the time to re-adjust to your diagnosis you will not feel better. There are days when I feel like my head is going to explode because I am so hungry and I have to think so hard about what I can eat. This has caused me a lot of stress and anxiety and I have been dealing with this for 15 years gluten free and about 4 years with the Mastocytosis diagnosis. So, I finally decided to give myself a break and prioritize my allergy sensitivities. The things that give me the most trouble in the food department are sulphites, wheat, dairy - including eggs, yeast, fermented foods. Bread is out most days, but some gluten-free toast once a week I can tolerate. I can't even go to brew pubs anymore because there is so much yeast in the air!

 

I am a baker, so eating gluten free is not an issue for me nor is it an issue for my Husband who has no food issues; he can eat anything. Gluten free food is fairly readily available if not locally to you, on-line. So, you should be able to sort that out and keep educating friends and family who do not support you in this, because you need to take care of you. As you heal your example will help educate them, hopefully.

 

I have decided that at least once a week, if life is stressful, I cheat a little with food and drink I know will allow me to socialize if I am careful in my consumption. A glass of wine occasionally will not cause too much problem if I limit it to one glass and stay a way from cheese at the same time. If I am not feeling well enough for wine, I order mineral water with an orange or lime wedge so I can at least be social. Restaurant food is a real crap shoot because, unless they have a dedicated kitchen you will get cross contamination. So just try to limit your exposure. Stay a way for sure from french fries because they can be dusted in flour and fried in oil that is used for other breaded items. Ask for dressing on the side, since they can hide ingredients that will make you un-well. Actually, ask for any kind of sauce or dressing on the side. If you try some and your tongue reacts, just eat what you have ordered plain, save yourself the pain. Beer you have GOT to sat away from. If you like beer there are some great gluten free ones out there. Just make sure that they are gluten-free and not 'omission' style. The Omission style beers still have 20ppm of gluten and as it sits the gluten begins to increase as it feeds on the yeast. Harvest Brewers make beers from gluten free grains and nuts.

 

Stop worrying about what other people think about your questions in a social setting regarding food ingredients. Their issues are theirs. If they can't be supportive of your needs, then maybe you need new friends? I don't understand this attitude from people, that you are some how a drag or a problem because you have foods issues. If you know in advance that a social occasion could be problematic, make sure you eat before you go, that way you are covered. If, say at a pot luck or bar-b-que someone brings salad, fruit or green, you could eat that and ask for a plain grilled burger. The bread with the meat is not a good combination anyway, so you will be ahead of the game. Lettuce makes a better 'bun'.

 

You can do this! You want to feel better, right? You just need to take a deep breath, relax and focus on what you CAN eat and don't worry about the rest. This is a huge life altering event. It will take some time and patience. Don't be concerned about feelings of selfishness, because you have to be in this instance. 

Thank you, you were very helpful

[StephanieL]

People don't know HOW to make food safe for you esp if you are as sensitive as you say you are so why would you want that?  My family doesn't make anything safe for my kid (who deals with more than Celiac- he has life threatening allergies to food so they could kill him).  They have never tried. They don't want the responsibility and honestly, I wouldn't trust them anyway.  Does it suck? Sure. Does my 7 year old sit and say "I should be getting a free meal to!"  Nope.  Does he sometimes say it sucks, sure! And I tell him the same thing I said to you so I'm sorry if you feel that's harsh or uncaring, it's not. It's reality. I don't want him sitting around thinking he's entitled to things. He know what needs to be done to keep him safe and he likes to be safe and not sick. That's a good enough payoff for him. 

 

You feeling invalidated is your take on it.  You've been given a ton of advice and you don't want it and that's fine. I truly hope the therapy you are in helps because it looks like that is the first place to start. 

[whatever]

People don't know HOW to make food safe for you esp if you are as sensitive as you say you are so why would you want that?  My family doesn't make anything safe for my kid (who deals with more than Celiac- he has life threatening allergies to food so they could kill him).  They have never tried. They don't want the responsibility and honestly, I wouldn't trust them anyway.  Does it suck? Sure. Does my 7 year old sit and say "I should be getting a free meal to!"  Nope.  Does he sometimes say it sucks, sure! And I tell him the same thing I said to you so I'm sorry if you feel that's harsh or uncaring, it's not. It's reality. I don't want him sitting around thinking he's entitled to things. He know what needs to be done to keep him safe and he likes to be safe and not sick. That's a good enough payoff for him. 

 

You feeling invalidated is your take on it.  You've been given a ton of advice and you don't want it and that's fine. I truly hope the therapy you are in helps because it looks like that is the first place to start. 

How is making simple vegetables, fruits or meat without anything else added too complicated, and why would I want that....well it's not for the free meal it's more about feeling like they care about me since they've known for awhile I can't eat the other stuff yet insist on putting it in all the food.   What is the point of inviting someone if you make it impossible for them to join in with everyone else.  I'm not asking them to overhaul an entire menu, there is literally nothing I can eat and sometimes it's spontaneous and not planned and I'm not prepared as I can't run around with a refrigerator strapped to my back all day.  I would make sure to have something everyone could eat, but I guess I'm just too nice a person.   Why do people always have to assume the worst about me?   Really....I'm feeling isolated and alone and somehow it's about a free meal.   It is harsh and uncaring because if it were happening to someone I cared about I would go out of my way to understand what they could eat and try to accomodate them....it's just rude not to.   What is wrong with people....cereal...why is excluding someone okay?

[whatever]

Welcome to the forum.  If you feel that at this time, a second opinion evaluation of your dietary restrictions is not necessary (although I highly recommend that), there are still a few things that can make coping easier.  Having a permanent medical condition like this can be socially isolating, anxiety-inducing, and so forth.  Talking with a counselor or other professional can help with coping skills, and just help you get through the transition phase and the grief.  There are counselors who specialize in helping people with chronic diseases, but any should do, just pick someone you feel you can comfortably open up to.  

 

On the cooking and preparation end, cooking in batches ahead of time can be greatly helpful for when you are unable to or just can't cook that day.  I have other conditions that can make me ill on some days, so I make my own frozen dinners.  I will do individual portions of things, ones big enough for my husband and I to eat on for a day or two, freezer meals where you freeze meat +veggies in a bag and throw it in the crock pot, etc.  You can make your own granola bars to bring as snacks, and those and any baked good will keep in the freezer if you wrap it tightly.    For going to someone else's house, I will take a meal for me in a single microwaveable container, so all I have to mess with is popping it in the microwave and I can use paper towels as a barrier, etc.  If it isn't a place where I can heat up my meal, you can search the forum here for tons of ideas for bringing lunches or snacks with you to work and other places.  There are also many helpful discussions on traveling... many of us will bring some basic things so we can cook for ourselves while on the road.

 

When it comes to dating, almost all of the people on this forum who are married are married to gluten eaters.  For dating, host a romantic picnic where you bring the food, or a dinner/movie at your house.  There are ways around the food problem, and if the guy doesn't want to be supportive of your dietary restrictions then he isn't really the one for you anyways.  Once you get really involved with someone, they may want to start eating the same foods as you so they can be closer to you and not have to worry about what is lingering in their mouth.  A lot of people on here have totally gluten-free kitchens, and their spouses eat gluten-free at home because they want to keep a safe environment for the one they love.  (Myself and my husband do this)

 

Meal prep/planning threads:

https://www.celiac.com/forums/topic/88488-im-tired-of-cooking/

https://www.celiac.com/forums/topic/108705-meal-planning-for-the-newly-diagnosed-challenge/

 

 

Travel/Out of house links:

https://www.celiac.com/forums/topic/105230-1st-holiday-season-after-dx-how-did-you-feeldocope/page-2#entry896956

https://www.celiac.com/forums/topic/107882-whats-in-your-kitchen-kit

https://www.celiac.com/forums/topic/107787-sit-down-dinner-wedding-reception-help/

 

Helpful forum links on Dating:

https://www.celiac.com/forums/topic/106154-dating-thoughts-and-profile-help/

https://www.celiac.com/forums/topic/108573-dating-seems-impossible/

https://www.celiac.com/forums/topic/107982-dating-w-celiac/

https://www.celiac.com/forums/topic/107966-how-to-approach-dating/

thank you

[kareng]

How is making simple vegetables, fruits or meat without anything else added too complicated, and why would I want that....well it's not for the free meal it's more about feeling like they care about me since they've known for awhile I can't eat the other stuff yet insist on putting it in all the food. What is the point of inviting someone if you make it impossible for them to join in with everyone else. I'm not asking them to overhaul an entire menu, there is literally nothing I can eat and sometimes it's spontaneous and not planned and I'm not prepared as I can't run around with a refrigerator strapped to my back all day. I would make sure to have something everyone could eat, but I guess I'm just too nice a person. Why do people always have to assume the worst about me? Really....I'm feeling isolated and alone and somehow it's about a free meal. It is harsh and uncaring because if it were happening to someone I cared about I would go out of my way to understand what they could eat and try to accomodate them....it's just rude not to. What is wrong with people....cereal...why is excluding someone okay?

"People" don't realize that they shouldn't drain the green beans in the same colander they drain their gluteny pasta - making it unsafe for us. It's just not something they think about. That is why it can be un- safe for others to cook for those of us with Celiac.

I don't think there is anything any of us can say that will make you feel better or be of any help. It seems you just want to rant. And, sometimes, that is what a person needs. When you are ready to listen and calmly think about what we say, we will be happy to help and share what we do. I hope you feel better soon