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Old Friend Said We Can't Come Over


mart

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mart Contributor

Hi. I'm posting this because I don't know how to react to this and was hoping someone might know where my friend was coming from. We've been friends for almost 20 years. When she found out about the celiac diagnosis, she told me that she couldn't have us over for dinner anymore because she couldn't accommodate our diet. This was a little hurtful to me, but I just quietly said, "don't worry, we'll just bring our own food when we come over." Well, it's been a whole year now and she's never invited us over, but she continues to have all our other friends over. Then recently, we went over with the kids to take a gift to her son, since we didn't go to his birthday party (we were out of town). When we arrived, she had several appetizers waiting for us, all on whole wheat toast and chocolate chip cookies for the kids. She said, "I know you can't eat this, but I didn't know what else to serve." ??? This made me feel bad, and my kids even worse. The worse part is that she seemed like she couldn't wait for us to leave. I keep telling myself that maybe I scared her off with the details of the diet, but I know I told her that there's a world of gluten free food out there that is easy to prepare. I'm so hurt thinking that we're such a burden, but I didn't say anything to her. Should I? (or am I being overly sensitive?) :(


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tarnalberry Community Regular
Hi. I'm posting this because I don't know how to react to this and was hoping someone might know where my friend was coming from. We've been friends for almost 20 years. When she found out about the celiac diagnosis, she told me that she couldn't have us over for dinner anymore because she couldn't accommodate our diet. ... I'm so hurt thinking that we're such a burden, but I didn't say anything to her. Should I? (or am I being overly sensitive?) :(

I would encourage you to talk to her, from the perspective of:

"I know that you don't know how to accomodate my diet, and that's ok. But it hurts that you exclude me from your life, just because of food. I can eat before I come over, I can bring my own food, I can help you find recipes that are safe for me, and above all, I won't get mad at you if I get sick from food I eat at your house. Please, how can we deal with this so that it doesn't get in the way of our friendship?"

Quite honestly, it sounds like you're both being too p%$#@#-foot about talking about how it's making you feel and how you're going to deal with it in your friendship. Sometimes these things, no matter how we think they *should* be, are _not_ obvious, and we have to work out a solution together.

rinne Apprentice
I'm so hurt thinking that we're such a burden, but I didn't say anything to her. Should I? (or am I being overly sensitive?)

I don't think you are being overly sensitive. I am sorry that your friend didn't make an effort to support you. It is sad to feel ourselves alone.

I've had a similar experience as I suspect most here have. You are not alone here.

2kids4me Contributor

I have had friends bend over backwards - finding out what my kids could eat.. and family members who thought it would make holiday meals so stressful on the host that they made a huge deal out of gluten-free gravy and once they tasted it and my gluten-free stuffing - they were surprised that it tasted like the "real" thing...?!?

If talking is hard because of the time lapse, what about writing her a letter. Explain what you miss most about gathering with friends. Ask her what makes her uncomfortable and that you would like to be the person to lessen her anxiety. Make a list of fun easy foods that she can buy ( plain potatoe chips, fruit/veges), you can bring the dip so she doesnt have to decifer gluten-free ingredients on labels.

Better yet - what about you hosting the get together - invite this friend over for dinner...show her that eating gluten-free isnt like eating alien foods.

People are funny about medical issues involving food - they would rather make assumptions than ask a question. Maybe when you offered to bring food she was picturing something weird.

If this is a friendship you value, then try once more.

Rachel--24 Collaborator

I also dont think you're being overly sensitive. I think Tiffany gave some good advice. Talking it out may make things better for both of you....avoiding the issue isnt going to resolve anything. A 20 year friendship is valuable and the food situation is not something that should be allowed to come between that friendship. I think the best thing is to tell her how you feel.

tiffjake Enthusiast
I would encourage you to talk to her, from the perspective of:

"I know that you don't know how to accomodate my diet, and that's ok. But it hurts that you exclude me from your life, just because of food. I can eat before I come over, I can bring my own food, I can help you find recipes that are safe for me, and above all, I won't get mad at you if I get sick from food I eat at your house. Please, how can we deal with this so that it doesn't get in the way of our friendship?"

Quite honestly, it sounds like you're both being too p%$#@#-foot about talking about how it's making you feel and how you're going to deal with it in your friendship. Sometimes these things, no matter how we think they *should* be, are _not_ obvious, and we have to work out a solution together.

Double Ditto.....

I have had friends bend over backwards - finding out what my kids could eat.. and family members who thought it would make holiday meals so stressful on the host that they made a huge deal out of gluten-free gravy and once they tasted it and my gluten-free stuffing - they were surprised that it tasted like the "real" thing...?!?

If talking is hard because of the time lapse, what about writing her a letter. Explain what you miss most about gathering with friends. Ask her what makes her uncomfortable and that you would like to be the person to lessen her anxiety. Make a list of fun easy foods that she can buy ( plain potatoe chips, fruit/veges), you can bring the dip so she doesnt have to decifer gluten-free ingredients on labels.

Better yet - what about you hosting the get together - invite this friend over for dinner...show her that eating gluten-free isnt like eating alien foods.

People are funny about medical issues involving food - they would rather make assumptions than ask a question. Maybe when you offered to bring food she was picturing something weird.

If this is a friendship you value, then try once more.

And I have had these experiences here too. I had a "good friend" that I don't think was so good now.....she had such a hard time that she was either 100% supportive (calling pizza places to see if they had a gluten-free crust) or 100% against me (refused to go out to eat, or eat at my house, because it was a pain in the @$$ for her to go out of her way) and this was a day by day thing. In all situations, she was selfish, and just did what she did for HER gain (calling the pizza places because SHE wanted pizza! I am not even a big pizza fan! It was her suggestion, and she later threw it in my face that she did all of that "for me"!!!!) IF, and that is a big "if", you really like her and really think that the food is the ONLY thing coming between you, then I really agree with Tarnalberry, talk to her straight forward-like, and get it over with! And mention the fruit/veggies like 2Kids4Me said. Both are great ideas!

jerseyangel Proficient

Wow, I don't think you are being too sensitive at all. While I think the above advice is good as far as saving the friendship, I would question whether I still felt the same way about the relationship. I have no idea what your friendship was like--if you talked about everything, were very close, etc. I would think that a friend of 20 years would at least make an effort and not "close the door" on you just like that. People can act a little "funny" about this--that's for sure. They can tend to "run away" from things they don't understand, instead of simply asking and attempting to understand. I hope that she will be agreeable to talking things out with you and finding a solution. Does she still come to your house?


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Guest nini

wow... I don't know what makes some people react that way... I haven't had a situation like that, but I think if I did, I would have to discuss it with said friend and let them know that food shouldn't come in between our friendship, that the most important part is gathering with friends, that she doesn't have to serve food to accommodate you, but if she feels so inclined tell her that things like fresh fruits are a good idea, or give her some safe brands of chips (offer to bring the dip), or anything like that, that is naturally gluten-free, and no effort to prepare... I also think that inviting her over to your house for a meal, and serving something that is naturally gluten-free that she wouldn't be weirded out by, like baked chicken and rice and steamed veggies... and show her that you eat normally, you just don't eat gluten... and good luck with that...

I have a friend that I've been friends with for 20 years and while she lives in another state now, whenever we do get together, she isn't weird about the Celiac thing at all, in fact, she LOVES to try whatever new recipe I've come up with. The last time she was here we made Chebe bread pizza's with tons of veggies on the pizza...

even a neighbor that just moved in several months ago has been extremely accommodating for my daughter, (she likes to go over and play with her daughters) the youngest one just had a birthday party, and my neighbor called to ask what she could make that my daughter could have, and she got a specific kind of ice cream and made a salad... I brought my daughter's pizza and cupcake and salad dressing... no one questioned it at all... that's the way it should be... about the company and hanging out, NOT about the food.

lovegrov Collaborator

Your friend has most definitely overreacted but you might also think about what you told her about the diet at first. I remember regaling poeple with all this "dangerous" condiments and ingredients (these were the days when I thought all distilled vinegar was bad and that virtually every salad dressing was forbidden) and how one tiny speck of gluten would cause terrible damage and I know I scared some people to death. I was scared at the time. Our dinner invitations definitely declined but our very best friends learned how to accommodate.

Anyway, now that you know more about what you can and can't have, maybe you can sit down with her and show her how really easy it can be. She doesn't need to try to make gluten-free desserts or breads, just normal, everyday food.

richard

lindalee Enthusiast

So much of what we do revolves around eating. I used to have so many get togethers with eating. I have skipped alot of functions. I am new to all this and have concentrated on learning the ropes. My prayers are with you and your loss. Hopefully she will come through for you. We understand and sometimes I think, "wouldn't it be nice if we all lived close by and didn't have to worry about this eating business." Some friends are just easier. Maybe after you talk to her it will work out. LLEE

VydorScope Proficient
I would encourage you to talk to her, from the perspective of:

"I know that you don't know how to accomodate my diet, and that's ok. But it hurts that you exclude me from your life, just because of food. I can eat before I come over, I can bring my own food, I can help you find recipes that are safe for me, and above all, I won't get mad at you if I get sick from food I eat at your house. Please, how can we deal with this so that it doesn't get in the way of our friendship?"

Quite honestly, it sounds like you're both being too p%$#@#-foot about talking about how it's making you feel and how you're going to deal with it in your friendship. Sometimes these things, no matter how we think they *should* be, are _not_ obvious, and we have to work out a solution together.

Well said. I think you just scared your freind and she just plain feels stuck, she does not want to hurt you, but to have you over for food would do just that. I think this all could be solved with some heart to heart talk.

plantime Contributor

Why do all of your get-togethers have to involve food? Try planning an activity that food is not a part of, or one that everyone provides their own food anyway. Go watch little league games, take in a movie, or even just take a good old-fashioned stroll around the neighborhood. If food does have to be involved, let her know that a simple fruit or veggie tray is plenty for a snack. It sounds like she might be hung up on being the perfect hostess, and just does not know how to accomodate your diet needs. You try being the hostess for once, invite her over for a yummy, gluten-free meal. She will begin to relax and understand.

angel-jd1 Community Regular
Hi. I'm posting this because I don't know how to react to this and was hoping someone might know where my friend was coming from. We've been friends for almost 20 years. When she found out about the celiac diagnosis, she told me that she couldn't have us over for dinner anymore because she couldn't accommodate our diet. This was a little hurtful to me, but I just quietly said, "don't worry, we'll just bring our own food when we come over." Well, it's been a whole year now and she's never invited us over, but she continues to have all our other friends over. Then recently, we went over with the kids to take a gift to her son, since we didn't go to his birthday party (we were out of town). When we arrived, she had several appetizers waiting for us, all on whole wheat toast and chocolate chip cookies for the kids. She said, "I know you can't eat this, but I didn't know what else to serve." ??? This made me feel bad, and my kids even worse. The worse part is that she seemed like she couldn't wait for us to leave. I keep telling myself that maybe I scared her off with the details of the diet, but I know I told her that there's a world of gluten free food out there that is easy to prepare. I'm so hurt thinking that we're such a burden, but I didn't say anything to her. Should I? (or am I being overly sensitive?) :(

Is there some reason that you can't invite HER family over to dinner? Then you could show her how to cook gluten free. Present a wonderful meal and maybe it would open up conversation on the topic or at least she could see that there are pleanty of foods that you can safely eat. Soooo get that dinner party menu going!! A 20 year friendship is hard to loose.

-Jessica :rolleyes:

tarnalberry Community Regular
Why do all of your get-togethers have to involve food? Try planning an activity that food is not a part of, or one that everyone provides their own food anyway. Go watch little league games, take in a movie, or even just take a good old-fashioned stroll around the neighborhood.

With my food issues, friends who are overweight, odd schedules, a desire to not be cooped up in good weather (now that summer's here) and everything else life throws at us, I make it a point to try to do stuff that does NOT involve food at least half the time I'm planning things. (Ironically, my plans tonight involve teaching someone (who's not gluten-free) how to cook. :lol: ) We do a lot of hiking/games, but there are plenty of options. Revolving around food gets boring and expensive (and expansive, to the waistline), anyway.

CarlaB Enthusiast

I won't repeat what others have mentioned already -- I'm wondering if you ever have your friend over for dinner? Do you still get together in other ways, or was dinner at her house the only time you got together?

Maybe if you had her over for dinner and made food that is naturally gluten-free, she wouldn't be so scared to have you over. If you were scared in the beginning and did as Richard mentioned, you could use this as an opportunity to casually tell her how scared you were and how much better you're doing now. I'm pretty straightforward, I'd just ask her, "Gosh, we used to get together all the time, but ever since I told you about my celiac disease, we never get together anymore. Is there anything I can do to fix that? What do you think is the reason for it?"

The other thing I'm wondering, usually I find people who are overly sensitive to something are sensitive because it hits some kind of nerve with them. Does she maybe have some health issues she's trying to ignore and you're addressing yours makes her feel guilty?

mart Contributor

Wow. Thanks for all the great advice.

Yes, I've had her over for dinner many times, and she's always commented on how delicious our gluten free food is. But I don't want to feel like my family is not welcome at her home. There goes my over-sensitivity again.

I've taken everyone's advice, and I called her this morning. This is how it played out. I flat out told her that I felt sad because I felt excluded from her life. This was harder to do than I imagined. I felt like such a cry baby. Maybe you will be shocked at her response...I know I was. She said that it's too hard to have to think about gluten free food and that our friendship would probably be better served over the phone. :(

I don't know why I bothered, but I proceded to tell her that fruit and Coca Cola are gluten free. She then got quiet and then said, "yeah, don't worry, we'll still get together from time to time."

SOOOOOO, I don't know what else to think or say. I guess it's over. But now I'm about ready to go into a full blown crying tantrum. Because the more I think about it, nobody invites us to their house anymore! Almost one year gluten-free, and I thought I had everything together. But now it's all coming back. I feel like a leper. Thanks for listening to me feel sorry for myself. I'll just have to be a big girl and try to get everything into perspective and remember that it could be a lot worse. Would I prefer that my kids be able to eat anywhere and have a disease that was untreatable? No thank you. We'll opt for the celiac disease and some isolation. I'm sure there are new friends we'll make in the future who will be willing to go the extra mile to have us over.

angel-jd1 Community Regular
Wow. Thanks for all the great advice.

Yes, I've had her over for dinner many times, and she's always commented on how delicious our gluten free food is. But I don't want to feel like my family is not welcome at her home. There goes my over-sensitivity again.

I've taken everyone's advice, and I called her this morning. This is how it played out. I flat out told her that I felt sad because I felt excluded from her life. This was harder to do than I imagined. I felt like such a cry baby. Maybe you will be shocked at her response...I know I was. She said that it's too hard to have to think about gluten free food and that our friendship would probably be better served over the phone. :(

I don't know why I bothered, but I proceded to tell her that fruit and Coca Cola are gluten free. She then got quiet and then said, "yeah, don't worry, we'll still get together from time to time."

SOOOOOO, I don't know what else to think or say. I guess it's over. But now I'm about ready to go into a full blown crying tantrum. Because the more I think about it, nobody invites us to their house anymore! Almost one year gluten-free, and I thought I had everything together. But now it's all coming back. I feel like a leper. Thanks for listening to me feel sorry for myself. I'll just have to be a big girl and try to get everything into perspective and remember that it could be a lot worse. Would I prefer that my kids be able to eat anywhere and have a disease that was untreatable? No thank you. We'll opt for the celiac disease and some isolation. I'm sure there are new friends we'll make in the future who will be willing to go the extra mile to have us over.

I'm so sorry to hear that it turned out that way. It will take time to heal. However, I am sure in the back of your mind you have to be saying "what 'friend' could do this?" The key word here being friend.

A person whom one knows, likes, and trusts.

A person whom one knows; an acquaintance.

A person with whom one is allied in a struggle or cause; a comrade.

One who supports, sympathizes with, or patronizes a group, cause, or movement: friends of the clean air movement.

Friend A member of the Society of Friends; a Quaker.

tr.v. Archaic friend·ed, friend·ing, friends

To befriend.

--------------------------------------------------------------------------------

[Middle English, from Old English frond. See pr- in Indo-European Roots.]

--------------------------------------------------------------------------------

friendless adj.

friendless·ness n.

Word History: A friend is a lover, literally. The relationship between Latin amcus “friend” and am “I love” is clear, as is the relationship between Greek philos “friend” and phile “I love.” In English, though, we have to go back a millennium before we see the verb related to friend. At that time, frond, the Old English word for “friend,” was simply the present participle of the verb fron, “to love.” The Germanic root behind this verb is *fr-, which meant “to like, love, be friendly to.” Closely linked to these concepts is that of “peace,” and in fact Germanic made a noun from this root, *frithu-, meaning exactly that. Ultimately descended from this noun are the personal names Frederick, “peaceful ruler,” and Siegfried, ”victory peace.” The root also shows up in the name of the Germanic deity Frigg, the goddess of love, who lives on today in the word Friday, “day of Frigg,” from an ancient translation of Latin Veneris dis, “day of Venus.”

That comes from dictionary.com .......I don't think that your "friend" really fits this definition any longer. This person doesn't seem to have too much of the "caring" gene in them. Cut your losses and move on. There are pleanty of nice people in the world who will love you....celiac or no celiac!

You will make new friends.....have you tried going to a local support group meeting? How about trolling the health food stores for fellow celiacs? Sure would make dinner plans alot easier ;)

Good luck and allow yourself to grieve for the friendship.

-Jessica :rolleyes:

tarnalberry Community Regular
She said that it's too hard to have to think about gluten free food and that our friendship would probably be better served over the phone. :(

I don't know why I bothered, but I proceded to tell her that fruit and Coca Cola are gluten free. She then got quiet and then said, "yeah, don't worry, we'll still get together from time to time."

You're right; I'm shocked. That is amazingly callous. And, while I hate to judge, especially off of one experience, the tough times - and their reactions to you following through - mark your friends, and she failed miserably.

I have not had *ONE* friend stop inviting us over. I have had a number say "I don't know what to serve you" and when I tell them "don't worry, I'll bring my own food or eat before I come over", they say "ok, that works, I'm glad you can still make it!". There are PLENTY of people out there who will accept you for you, and not ostrasize you becasue "thinking about gluten free food is too hard".

Quite frankly, her excuse is a total copout. How hard is it to pick up a bunch of grapes at the store, eh? It's really total BS, and it sounds like you may be better off without someone who would disregard "a friend" so easily, so cruelly, and so childishly.

penguin Community Regular

I'm sorry that you and your friend are "breaking up", that's always hard. :( When I read her response, all I could think was - What a selfish B!!! :angry:

Friends are supposed to care, and to be there with you. If thinking about gluten-free food is too hard for her, than she isn't a friend worth having, IMO. What if it were diabetes or something? Would she serve cupcakes and koolaid because thinking about the glycemic index is too hard?

Sorry, that just pisses me off. Jessica is right though, you will make new friends, better ones even. Sometimes it takes a crisis to find out who your friends really are. :)

mamatide Enthusiast
Wow. Thanks for all the great advice.

Maybe you will be shocked at her response...I know I was. She said that it's too hard to have to think about gluten free food and that our friendship would probably be better served over the phone. :(

Well that just sucks. I guess you've got yourself what my Mother used to call a "Fairweather Friend". When the going got tough, she left you out in the cold.

I'm sorry you've been treated so poorly by her and I'm sorry she's revealed her true colours when you really could have used a friend.

I liked what others suggested in finding a Celiac support group. I only wish I had one in the small community in which I live. I have one friend whose child is also on a gluten-free diet, so she and I have been exploring the gluten-content of the foods we have here, taking each other's lists with us when we go to bigger cities, etc.. It's been nice to have at least one real-live person to commisserate with.

Wish I had some deeper things to say... all I can say is that you will probably find a good friend where you least expected it as a result of this. At least you can hold out hope. Because real true friends ARE out there.

Chin up.

mamatide

Mango04 Enthusiast

Wow, sorry to hear what you're going through. Your "friend's" response is shocking! Why does she have to think about gluten-free food at all? I have friends who don't ever think about my food. They just know I can't eat things they cook. It's no big deal. I wonder if your "friend" has some sort of food/diet/health issue she's dealing with, and is somehow threatened by your diet? People get so strange when food is involved. If we all had some disease that caused us to have to stop and take medication every 10 minutes, our friends wouldn't say "gosh it's just so hard to think about your medication. We can't be friends anymore." I guess you just never know what people are really thinking.

jerseyangel Proficient
SOOOOOO, I don't know what else to think or say. I guess it's over. But now I'm about ready to go into a full blown crying tantrum. Because the more I think about it, nobody invites us to their house anymore! Almost one year gluten-free, and I thought I had everything together. But now it's all coming back. I feel like a leper. Thanks for listening to me feel sorry for myself. I'll just have to be a big girl and try to get everything into perspective and remember that it could be a lot worse. Would I prefer that my kids be able to eat anywhere and have a disease that was untreatable? No thank you. We'll opt for the celiac disease and some isolation. I'm sure there are new friends we'll make in the future who will be willing to go the extra mile to have us over.

I'm so very sorry that you were hurt like that. You are not the one who should doubt herself and feel like an outsider--your former friend should take a good long look at herself in the mirror! Of course you'll make new friends--tomorrow's another day ;) Keep on doing what's best for you and your kids, the rest will fall into place.

Guest nini

gosh that's terrible... her response is just pathetic... what a lame excuse, I'm sorry that it turned out that way, but your "friend" showed her true colors today. I have a "friend" that only calls me when things are not going good in her life and she needs someone to vent to. Does she ever ask how I'm feeling? Not really... but I've started calling her with all the bad things that have been going on in my life and making her listen to me! LOL! I figured it's the least she can do for me!

Anyway, your former friends response is just a copout... she doesn't HAVE to ever spend any time thinking about gluten free food... she doesn't have to provide anything for you unless she wants to... I take my own food with me to events and even if people try to go out of their way to provide options for me, I usually feel safer bringing my own food. So when people ask, I just say, don't worry about me and my daughter, I'll bring enough for us.

CarlaB Enthusiast

I am shocked, just as everyone else is. Someone mentioned that through a crisis, we learn who our friends are. It doesn't make it any easier for you though. I have not had anyone react like that. My mom and sisters' behavior has been reprehensible, but my friends have been supportive. I'm sorry it turned out this way, but I'm happy you did what you did so you can stop fretting about it and wondering if it's the case. It's better to know.

cgilsing Enthusiast
Wow, sorry to hear what you're going through. Your "friend's" response is shocking! Why does she have to think about gluten-free food at all? I have friends who don't ever think about my food. They just know I can't eat things they cook. It's no big deal. I wonder if your "friend" has some sort of food/diet/health issue she's dealing with, and is somehow threatened by your diet? People get so strange when food is involved. If we all had some disease that caused us to have to stop and take medication every 10 minutes, our friends wouldn't say "gosh it's just so hard to think about your medication. We can't be friends anymore." I guess you just never know what people are really thinking.

I agree. It sounds like there is something else going on with your friend. She must feel threatened for some reason by your diet! Her response doesn't even make sense. So what if she can't handle cooking for you....can she not socialize when food isn't involved :huh: Even if after you offered solutions to this problem, she couldn't handle it, why couldn't you guys do something that doesn't involve food? You both have kids, and activities like taking the kids bowling or ice skating or something should pose no problem at all. If you had an adult night and met her out for a drink that shouldn't be a problem either. I think her response is pretty cold and showed that she had not spent any time thinking about ways around the problem. Don't loose any sleep over her, it really sounds to me like this is a problem with her not you. She may come around and realize what a good friend she lost. In the mean time concentrate on your other friendships (that can deal with a little adversity ;) )

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    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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