Coping With The Isolation And Rage

[LauraTX]

Sweetie, you are not being excluded, you are being invited to these functions because people want you there.  There are a multitude of barriers to people being able to accommodate special needs, and you can read through some of the links I gave you earlier to see how sometimes the host can get around them, and sometimes it is just too much to safely do with the circumstances.  If you don't have time to teach it to a person, is just politely ask for free reign in their kitchen, and find something in there that is okay and make it for yourself.  You can also eat at home before, bring your own food, just have a drink and enjoy the company, etc.  

 

Overall, limitations are really all about your outlook and attitude.  I highly recommend you seek out a professional to talk to.  If your health plan is not providing that for you, many religious institutions and charities have free counseling available.  Just do a google search for "free counseling -city-".  Being a veteran can help with some eligibility as well.  Here are a few links you may find helpful, but mostly searching for things within your local area will be of more assistance.  If you are feeling very upset and hopeless, please call 1-800-273-8255 without hesitation.  You can also go to the nearest hospital emergency room to get immediate care.

 

Open Original Shared Link

Open Original Shared Link

 

I also hope you feel better soon.

[whatever]

Sweetie, you are not being excluded, you are being invited to these functions because people want you there.  There are a multitude of barriers to people being able to accommodate special needs, and you can read through some of the links I gave you earlier to see how sometimes the host can get around them, and sometimes it is just too much to safely do with the circumstances.  If you don't have time to teach it to a person, is just politely ask for free reign in their kitchen, and find something in there that is okay and make it for yourself.  You can also eat at home before, bring your own food, just have a drink and enjoy the company, etc.  

 

Overall, limitations are really all about your outlook and attitude.  I highly recommend you seek out a professional to talk to.  If your health plan is not providing that for you, many religious institutions and charities have free counseling available.  Just do a google search for "free counseling -city-".  Being a veteran can help with some eligibility as well.  Here are a few links you may find helpful, but mostly searching for things within your local area will be of more assistance.  If you are feeling very upset and hopeless, please call 1-800-273-8255 without hesitation.  You can also go to the nearest hospital emergency room to get immediate care.

 

Open Original Shared Link

Open Original Shared Link

 

I also hope you feel better soon.

thanks, been in therapy for years, he actually told me to join a celiac site and I been trying to eat gluten free for about 4 years now and the naturopath put me on a super restrictive diet because I was still having symptoms, panic attacks, thyroid all over the place, strange symptoms of numbness and tingling, as far as I knew I was still gluten free.   Then I started learning about cross reactive foods and I had a hard time buying into it and I'm really overly saturated at this point looking up stuff on the internet and the regular doctors could care less and have no idea what to do because they are trained in symptom management and not actual healthcare.  The naturopath then looked over my history and any time I had a boyfriend I was likely getting glutened, I didn't live with them so logistically it's a nightmare and likely a lot of cross contamination.   I'm just tired of being perfect and always being responsible.   I never really had a mother, I was the parent since I was ten and I really struggle with wanting to rebel.  I feel trapped in my body like I'm a prisoner and my family could care less about me but hey that's the society we live in.  I just wondered what people do to cope with the overwhelming feelings of having normal taken away.   There is nothing normal about carrying around food with me where I go, especially to a gathering and no one else is doing what I do.   If they cared they wouldn't tell me it's in my head and that I'm stupid, but again that is our society and again I would try and accomodate.   I see them getting symptoms but they don't listen to me, what would I know, I only had to cut my mother open and save her life multiple times, I only reversed most of my symptoms with out any help from a doctor.   Sad really, I shouldn't have to go to the internet for medical treatment

[LauraTX]

I and many others on the board here understand the challenge of having normalcy taken away from you, whether it is from a disease or life circumstances.  I know that what many people share here is only the tip of what has actually gone on/is going on in their lives.  It really can be difficult to cope with that, but there is a point at which you just have to pick up the peices that are left of yourself and your life, and keep running with that in hand.

 

Have you been seeing the same therapist for a long time?  Some times even if it is a good therapist, you can hit a stale point and stop progressing so it is time to find someone else.  They may have helped one issue but another may help with other things.  I recommend seeing a psychologist if things like PTSD and traumas are involved since they can have a little more insight into the brain's involvement.  Also, once someone has been through trauma, chemical changes can permanently alter the brain, and although medication is not always the answer, it can really help some people.  I understand some have an aversion to it, but especially when you are so unable to function in life, it can be worth trying it out with the right doctor.

 

Lastly, before you start cutting out a bunch of foods with unproven cross reactivity, it may be a good idea to take an extensive look at how gluten-free your diet was for those 4 years.  The gluten-free diet really is all or nothing, so if you have picked out things that were resulting in gluten coming in, all you may need is just a completely gluten-free diet before resorting to other measures.  Now, it is possible for other foods to bother you and you have an intolerance to them, and an elimination diet/food journaling can help you figure out any triggers for problems.

 

Overall, it is important to establish a new normal and make your home and your life a safe place for yourself.  It starts with a safe diet, but it could be better to not be around people that are the reverse of supportive.  You can check out the gluten intolerance group (Open Original Shared Link) or do a google search for a group and see if they have a local chapter near you, to meet people in your area who have to eat the same.

[SMRI]

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?

 

Until you have to live day to day with Celiac, you really are not going to know all the ins and outs of making food safe to eat and expecting others it do that is what is rude, I think.  There are plenty of shelf stable foods you can have on hand to take to a gathering or stop at the grocery store on the way.  I just do not trust other's to prepare food properly, it's just not worth the risk.  You said you "tried to eat gluten-free", which tells me you were not gluten-free for those 4 years.  I don't see how getting invited to a party is being excluded???  Being excluded means you would not be invited at all.  If you want food there that is safe to eat, offer to prepare a few dishes to bring or help the hostess prepare food for the party so you know it's done safely.  I'm going to a work function tomorrow at a baseball game.  I know there won't be a single thing I can eat at the ball park, so I'm just bringing something I can eat, it's not a big deal.  I am still being included, I still get to go and socialize, but I would NEVER expect people to cater to my needs.  That is my responsibility, not theirs.  Yes, it takes a little extra planning, but there will also be people there with food allergies or whatever that will have to do the same thing, or people that are extra sensitive to the sun that have to take extra precautions, or the people with peanut allergies that really can't go at all because there are peanuts everywhere.....or the diabetics that have to worry about insulin, or the woman on crutches that has to figure out how to get from the parking lot to the party venue inside the park, or the parents of small children who have to worry about adjusting naps because the party starts at 2:00 in the afternoon, or last year when it was 110° , or...........   You feel alone and excluded because your let yourself fell that way...

[whatever]

Until you have to live day to day with Celiac, you really are not going to know all the ins and outs of making food safe to eat and expecting others it do that is what is rude, I think.  There are plenty of shelf stable foods you can have on hand to take to a gathering or stop at the grocery store on the way.  I just do not trust other's to prepare food properly, it's just not worth the risk.  You said you "tried to eat gluten-free", which tells me you were not gluten-free for those 4 years.  I don't see how getting invited to a party is being excluded???  Being excluded means you would not be invited at all.  If you want food there that is safe to eat, offer to prepare a few dishes to bring or help the hostess prepare food for the party so you know it's done safely.  I'm going to a work function tomorrow at a baseball game.  I know there won't be a single thing I can eat at the ball park, so I'm just bringing something I can eat, it's not a big deal.  I am still being included, I still get to go and socialize, but I would NEVER expect people to cater to my needs.  That is my responsibility, not theirs.  Yes, it takes a little extra planning, but there will also be people there with food allergies or whatever that will have to do the same thing, or people that are extra sensitive to the sun that have to take extra precautions, or the people with peanut allergies that really can't go at all because there are peanuts everywhere.....or the diabetics that have to worry about insulin, or the woman on crutches that has to figure out how to get from the parking lot to the party venue inside the park, or the parents of small children who have to worry about adjusting naps because the party starts at 2:00 in the afternoon, or last year when it was 110° , or...........   You feel alone and excluded because your let yourself fell that way...

there aren't shelf stable foods for auto immune paleo, I apparently was reacting to so called gluten free foods.   I started feeling isolated when I started AIP.  There isn't much help I get from doctors, they could care less, so these 4 years I been trying to figure out gluten free on my own surrounded by a lot of clueless unsympathetic people.  So of course I feel like no one cares and I'm excluded, I also just started working again and every day it gets rubbed in my face just how much I've never been considered on anything....been like that my whole life.  My mothers handicap was more important than my welfare, me trying to take care of myself was always trumped by someone elses good time & sometimes that meant denying me access to food.  This girl I went to high school with, her mother just died, everyone is trying to help her with funeral expenses.  My mother doesn't even have a headstone and I can't find her grave, that's how little we meant to anyone, then after my evil aunt stopped getting checks from welfare I got put in foster care.  I'm only valuable to people when they can get something from me, people are evil like that and they suck.  So it must be nice to have a family that cares about you and you can at least talk to someone who can sympathize without having to be paid for it, I wish I knew what that was like.  I been alone my whole life, no one cares and that's why people suck.

 

There's only one other woman I know who has to do the same diet and she's finding she has to live like a hermit also.  At least she has a car to transport all her gear around, I don't have one and money is another thing I don't have much of so access to food is still an issue.  The only person I've gotten any help from is my naturopath.   There are some good people out there but they are rare especially since narcissism is on the rise and people only want to think about themselves, yet another reason to feel isolated, again, 'cause no one cares.  Literally if I was dying on the street they would just walk by, that's who our society has become and that's nothing to be proud of.  I'm disgusted.

[whatever]

I and many others on the board here understand the challenge of having normalcy taken away from you, whether it is from a disease or life circumstances.  I know that what many people share here is only the tip of what has actually gone on/is going on in their lives.  It really can be difficult to cope with that, but there is a point at which you just have to pick up the peices that are left of yourself and your life, and keep running with that in hand.

 

Have you been seeing the same therapist for a long time?  Some times even if it is a good therapist, you can hit a stale point and stop progressing so it is time to find someone else.  They may have helped one issue but another may help with other things.  I recommend seeing a psychologist if things like PTSD and traumas are involved since they can have a little more insight into the brain's involvement.  Also, once someone has been through trauma, chemical changes can permanently alter the brain, and although medication is not always the answer, it can really help some people.  I understand some have an aversion to it, but especially when you are so unable to function in life, it can be worth trying it out with the right doctor.

 

Lastly, before you start cutting out a bunch of foods with unproven cross reactivity, it may be a good idea to take an extensive look at how gluten-free your diet was for those 4 years.  The gluten-free diet really is all or nothing, so if you have picked out things that were resulting in gluten coming in, all you may need is just a completely gluten-free diet before resorting to other measures.  Now, it is possible for other foods to bother you and you have an intolerance to them, and an elimination diet/food journaling can help you figure out any triggers for problems.

 

Overall, it is important to establish a new normal and make your home and your life a safe place for yourself.  It starts with a safe diet, but it could be better to not be around people that are the reverse of supportive.  You can check out the gluten intolerance group (Open Original Shared Link) or do a google search for a group and see if they have a local chapter near you, to meet people in your area who have to eat the same.

Thank you that was helpful, here's why....... you validated how I'm feeling rather than invalidate by minimizing my experience or ignoring other points made and essentially talking about something I'm not experiencing.   You also did a great job on focusing on how I'm feeling and not trying to be the problem solver and you validated my feelings by empathising with your feelings.   I wish more people did that.....somebody else did that also.  

 

When I say try to be gluten free it means I know it's a life long change and it means 100% no gluten, just I been trying to figure this out on my own and I've made mistakes and had to let some people go like an ex boyfriend who just didn't get it.   My other ex boyfriend jokes alot and sometimes he would joke around about being gluten free, I didn't know how to take that it didn't seem like he realized how sick I used to be, well he didn't know me then but I was almost in a wheel chair it was that bad.   That fact that I can do a part time job is a miracle and that's when I started seeing the naturopath because I could finally afford one.

 

There is a gluten free support group but they only meet around here once every other month and often I forget which month, it's not frequent enough.  I live in Northampton and there's lots of awareness but my doctor has me on AIP which is way more restrictive than just being gluten free.   Life was easy just being gluten free even though I didn't and still don't know everything.   This auto immune diet is more expensive, has a ton more rules and is not convenient by any means and that's what I struggle with.   I have to make everything from scratch, everything, there is no pack a lunch.....I have to bring half my kitchen with me for realzies.   Carrot sticks and soup (if there's a way to heat it up) isn't enough to feel like I ate something.   I see everyone and smell the pizza they are eating and I'm dying, I can't even do a gluten free pizza right now.   I'm hungry all the time, then my lack of a gallbladder gives me issues....sometimes it's just too much and I just want to die or wish I never had to eat in the first place.

[knitty kitty]

Hi! I've been lurking for a while but was so moved by your posts that I had to say something.

You're not alone. I've had a long struggle to diagnosis and am just beginning on the road to recovery. The journey is very difficult but so worthwhile. Keep going! It will get better!

I was undiagnosed for fifty years. I've suffered from gluten ataxia while my family, friends and doctors thought I was just a crazy and depressed hypochondriac. I have been diagnosed with PTSD as well. I understand how frustrating it is not to receive the diagnosis and instructions that can change and improve your life. Be aware that gluten is used as a filler in some medications. The antidepressants prescribed to me had gluten fillers and only exacerbated my symptoms until I was put in the psyco ward. The Others just don't know how bad gluten is because they can't experience it for themselves.

Find simple foods that you know won't cause any reactions right now. Stay on them for a few weeks. As you start to heal and feel better, your tolerance will improve and you can slowly try one new food at a time. While you are on a limited diet, be careful to avoid cross contamination. Maybe that means not going out with friends. Instead invite one or two to your house and explain your dietary restrictions and even serve them gluten free foods you can enjoy together. Impress upon them the seriousness. I find people are often insensitive because they don't understand. Or they are scared it could happen to them. If they are open to instruction, they are good friends. If they are not open to your information, don't waste your time. You've got more important things to do. Celiac disease does weed out people who can be toxic in your life.

When you get too overwhelmed or frustrated, remember that you're on a difficult part of the journey and the only way out is to keep moving forward. Even if that means you need to hide under the blanket for a while. It's okay. Be nice to yourself. Be patient with yourself. Be understanding with yourself. Listen to yourself. You may feel that you are only one who understands completely and that's okay.

All Celiacs are different with different degrees of sensitivity. I'm hypersensitive and can't tolerate the twenty parts per million in "store-bought" gluten free foods. I get tired of cooking every single meal. I have to carry my own food with me. But it is do-able, because we ARE worth all the effort!

Address the malnutrition aspect of Celiac disease. Get your vitamin D level checked...mine was extremely low. I'm not a doctor, but I found a Gluten free multivitamin, vitamin D supplements and Omega 3s helped me immensely. Keep us updated on your progress. This Celiac cares!

I look forward to the day where there will be a Gluten Free Community...like a Nudist Colony, but clothes can be optional.

[whatever]

Hi! I've been lurking for a while but was so moved by your posts that I had to say something.

You're not alone. I've had a long struggle to diagnosis and am just beginning on the road to recovery. The journey is very difficult but so worthwhile. Keep going! It will get better!

I was undiagnosed for fifty years. I've suffered from gluten ataxia while my family, friends and doctors thought I was just a crazy and depressed hypochondriac. I have been diagnosed with PTSD as well. I understand how frustrating it is not to receive the diagnosis and instructions that can change and improve your life. Be aware that gluten is used as a filler in some medications. The antidepressants prescribed to me had gluten fillers and only exacerbated my symptoms until I was put in the psyco ward. The Others just don't know how bad gluten is because they can't experience it for themselves.

Find simple foods that you know won't cause any reactions right now. Stay on them for a few weeks. As you start to heal and feel better, your tolerance will improve and you can slowly try one new food at a time. While you are on a limited diet, be careful to avoid cross contamination. Maybe that means not going out with friends. Instead invite one or two to your house and explain your dietary restrictions and even serve them gluten free foods you can enjoy together. Impress upon them the seriousness. I find people are often insensitive because they don't understand. Or they are scared it could happen to them. If they are open to instruction, they are good friends. If they are not open to your information, don't waste your time. You've got more important things to do. Celiac disease does weed out people who can be toxic in your life.

When you get too overwhelmed or frustrated, remember that you're on a difficult part of the journey and the only way out is to keep moving forward. Even if that means you need to hide under the blanket for a while. It's okay. Be nice to yourself. Be patient with yourself. Be understanding with yourself. Listen to yourself. You may feel that you are only one who understands completely and that's okay.

All Celiacs are different with different degrees of sensitivity. I'm hypersensitive and can't tolerate the twenty parts per million in "store-bought" gluten free foods. I get tired of cooking every single meal. I have to carry my own food with me. But it is do-able, because we ARE worth all the effort!

Address the malnutrition aspect of Celiac disease. Get your vitamin D level checked...mine was extremely low. I'm not a doctor, but I found a Gluten free multivitamin, vitamin D supplements and Omega 3s helped me immensely. Keep us updated on your progress. This Celiac cares!

I look forward to the day where there will be a Gluten Free Community...like a Nudist Colony, but clothes can be optional.

Thank you so much, I really appreciate your support; it helps believe me.  I keep forgetting to take my vitamins and I did call the manufacturer of my thyroid medicine, and it looks like no gluten.   I just wrote a letter to my naturopath asking him if I can have an approved naughty list for those times I might fall off the wagon, the diet he has me on is soooooo strict and I'm rebellious by nature and I hate being perfect, I was asking him for simple things like cacao, lentils, goat cheese and some night shade vegetables even spices born in a jar.  Everything has to be fresh but when I was following his diet I did good for awhile then sorta fell off the wagon I discovered all these auto immune responses that I never thought of as auto immune....who knew, especially after eating potato chips.  I just don't want to obscess about food, I just wanna have convenient lazy days where I just open a package and throw it my mouth.  Especially since two weeks ago I had cut my finger pretty bad, required 5 stitches and I couldn't cook or clean for like a week, that's when I fell off the wagon....I still ate gluten free but it wasn't auto immune paleo.  Thanks again it's nice to know that there are kind good people in the world, hopefully someday we can take over the planet and everyone gets free hugs and giggles. 

[knitty kitty]

Ask for a "DO" list! Keep a list of all the things you are allowed to have posted on the fridge. My brain needs help to remember things when I get glutened. Having all the options options within view will help you to put different items together in a variety of ways.

I have grabbed a seemingly innocent bag of potato chips, too, and lived to regret it. Beware of lentils!!! I made lentil soup last week and got sick. Turns out, lentils are harvested and processed on equipment also used to process wheat! I was astounded! The lentils were the only thing I could think of that could possibly be the culprit. Crazy, right? First place to check was here to this forum! So relieved to find I wasn't the only one!

When I have sick days, like after the lentil episode, I would rather hide under my blanket, but I make soup first. Put it on in the morning, let it simmer all day. Throw in things that don't need to be chopped since your finger is hurt. (Hope that heals quickly.) Bone broth is very healing. Small, whole veggies ,etc. They will be soft enough to chop with a spoon after cooking a while. I always have a pot cooking or a bowl of leftovers in the fridge. Alternate with a salad or something else you can make easily so your taste buds don't get bored.

I've just recently found the low histamine foods diet and it does help. After I have been on it a while, I've found I can have a few peppers and tomatoes. Perhaps you'll improve to that point, too. Keep trying. We're on a bumpy part of the road right now. Remember that after a difficult climb up a hill, there's usually an easier road down. Just don't coast too much lest you fall off the wagon again! Be encouraged!

[LauraTX]

......Beware of lentils!!! I made lentil soup last week and got sick. Turns out, lentils are harvested and processed on equipment also used to process wheat! I was astounded! The lentils were the only thing I could think of that could possibly be the culprit. Crazy, right? First place to check was here to this forum! So relieved to find I wasn't the only one!....

 

Please note that not all lentils are contaminated in processing, and when not adulterated, lentils are a gluten-free food.  As in anything, shared equipment can lead to contamination, whether it is frozen veggies, baked goods, anything really, and you can find plenty of sources that are safe.  Disclosure on the bag that they are processed on shared equipment is voluntary, so you can always call the company to ask if there is no statement.

[GFinDC]

Hi whatever,

 

Welcome to the forum!  And you too Knitty Kitty!

 

@Whatever:  Someone mentioned getting your vitamin D checked.  It would be good to get all your vitamin and mineral levels checked.  That way if you are low on something you know what to supplement.  Gluten ataxia affects nerves and may heal faster by supplementing vitamin B's.  I don't know if you had / have that though, but maybe it's something to read up on.

 

It's not easy being sick, is it?  I used to sometimes feel jealous of healthy looking people who walked around without a care in the world, smiling etc while I was sick every day.  Reminds me of that song "Shiny, happy people..."  by REM.  They are so irritating!

 

 

It sounds like you believe most of your symptoms are food related.  The good thing about that is you control the food you eat.  So if your symptoms really are food related, it is in your power to change the situation.  You are 100% in control of the food you eat, so you have the key to your improvement.

 

I did a series of elimination diets over several years.  Each time I would find a different food or foods that was causing me symptoms.  And they weren't minor symptoms.  Wheat, rye, barley and oats were just the beginning.  But eventually I got much healthier, it just took a few years.  If you check peoples signature lines you can sometimes see lists of food they have to avoid.  You aren't alone in having to avoid many foods here.

 

I agree that it is wisest to just bring your own food or eat before hand when attending events.  What fun is it to sit and eat food someone else made while wondering if it is going to make you sick?  That's no fun.  So take care of your own needs, and be responsible for yourself.  You can do it!

 

 

[blueshades]

When i found out what was making me sick, i never felt any anger. I just straight away told myself, ok this is what i need to do to get better.

Don't get angry. You seem very informed about this, so use that to heal yourself. I haven't been doing this very long but i always put myself first and haven't let others affect me. If they're all eating something i can't, i go and make myself something safe and delicious and eat too.

 

My doctor was useless too. I did all my research and continue to all the time so i can keep learning. My family all eat gluten foods and there were some minor arguments when i was trying to adjust such as me putting my own mini oven in the kitchen even though there wasn't the space. Just keep doing what you need to do. People around you will get use to it and accept it eventually and it will be easier.