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Mother Drives Me Nuts Cooking Gluten Laden Foods


catlover0329

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catlover0329 Newbie

Every year my mother bakes German stollen (a fruit cake) and sends them to me and my other 5 adult siblings. However, I learned this May that I am intolerant to gluten and made an announcement about it by email and also talked about it at a family reunion in September. I've been studiously avoiding gluten and have been very careful to make my life gluten free since learning about my intolerance. I received a package from my parents a few days ago containing two loaves of the stollen. I could have sworn my dad mentioned that one of the loaves would be gluten free so I was suprirsed when I opened the box and found the 2 loaves my mother had baked. Figuring she knows I am intolerant to gluten and that one of the loaves had to be regular and the other gluten free, I examined them both and determined that one of the loaves had to be the gluten free one and ate a few slices. I had bad symptoms the rest of the day and didn't know why but just to be safe I didn't eat any more of the bread my mother had sent.

I emailed my parents last night thanking them for the package but saying it would have been helpful if they had marked which bread was gluten free for me. My dad called frantic to tell me that neither loaf was gluten free and he jokingly said I'm glad you're still alive.

My mohter and I had a falling out a few years ago but I can't believe she would be so thoughtless as to send both loaves knowing they had gluten in them and leave the option open that I would think that one would be gluten free. They did look different and why would she think that my kid would eat 2 loaves by herself?

I am very hurt and frustrated about this. I'm about to have surgery that will prevent me from being able to eat much for hte rest of my life and this was my last year of having the stollen which is a family tradition. I can't believe my mother's thoughtless behavior made me get sick and that she treated my problem so lightly. She's not stupid and I can't help but think this was intentional.

Am I overreacting or what?

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IrishHeart Veteran

I do not blame you for being upset! ( I am not sure how you determined one was gluten-free by just "looking at it"?) Hopefully, you will feel better soon.

I don't know which is more disturbing, the fact that she may have deliberately sent two loaves with gluten in them or that your father found it funny. :blink:

You said "I could have sworn my dad said one would be gluten-free"...but that is ASSUMING a LOT, hon!

Frankly, if your Mom had baked BOTH gluten free and wheat-filled loaves in her kitchen, there is NO WAY that gluten-free loaf would be safe for you. Cross contamination is too risky.

I'm sorry your parents do not fully understand why you need to be gluten free. I am also sorry for you that their response to your serious health issue is less than supportive (and in fact, hazardous!) as I cannot imagine my mother deliberately dosing me with gluten after the devastating health complications I have suffered.

They might have put a note in there saying it was NOT gluten-free to give you a "heads-up", but you might have checked before eating it, too. WE have to be Ultra-careful.

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pricklypear1971 Community Regular

Every year my mother bakes German stollen (a fruit cake) and sends them to me and my other 5 adult siblings. However, I learned this May that I am intolerant to gluten and made an announcement about it by email and also talked about it at a family reunion in September. I've been studiously avoiding gluten and have been very careful to make my life gluten free since learning about my intolerance. I received a package from my parents a few days ago containing two loaves of the stollen. I could have sworn my dad mentioned that one of the loaves would be gluten free so I was suprirsed when I opened the box and found the 2 loaves my mother had baked. Figuring she knows I am intolerant to gluten and that one of the loaves had to be regular and the other gluten free, I examined them both and determined that one of the loaves had to be the gluten free one and ate a few slices. I had bad symptoms the rest of the day and didn't know why but just to be safe I didn't eat any more of the bread my mother had sent.

I emailed my parents last night thanking them for the package but saying it would have been helpful if they had marked which bread was gluten free for me. My dad called frantic to tell me that neither loaf was gluten free and he jokingly said I'm glad you're still alive.

My mohter and I had a falling out a few years ago but I can't believe she would be so thoughtless as to send both loaves knowing they had gluten in them and leave the option open that I would think that one would be gluten free. They did look different and why would she think that my kid would eat 2 loaves by herself?

I am very hurt and frustrated about this. I'm about to have surgery that will prevent me from being able to eat much for hte rest of my life and this was my last year of having the stollen which is a family tradition. I can't believe my mother's thoughtless behavior made me get sick and that she treated my problem so lightly. She's not stupid and I can't help but think this was intentional.

Am I overreacting or what?

I'm sorry you got sick. However, you've got to learn not to eat anything you can't verify as gluten-free.

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Skylark Collaborator

As IrishHeart pointed out, nothing out of your mother's kitchen would likely be safe for a celiac because of the flour cross-contamination anyway. It's hard to know what your mother was thinking, but it does seem pretty inconsiderate to send two loaves of gluten bread.

You getting sick is your own fault. You chose to play "gluten roulette" with food where you did not know the ingredients. Now you know there is no way to tell a food is gluten-free, short of buying an expensive test kit.

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sariesue Explorer

I think you are overreacting to some of this. While it was thoughtless for your mother to send the stollens because they have gluten, it is a tradition and it appears that the rest of your family still eats gluten. So to not send them would deprive them of the tradition as well. That is not thoughtless. Thoughtless would have been to just skip your family because you can't eat it so your children miss out.

It is your fault you got sick. You are the one who made the assumption that one of the loves was gluten free. Unless it was labeled gluten free there really is no way to make that assumption since even wheat baked goods don't always end up looking the right way. And the fact that one didn't look perfect would cause me to send an extra in case the funny looking one didn't taste good. Since it was not labeled gluten free the next step would be to call your mother and confirm that one actually was gluten fee and what it looked like. But you didn't do that. Instead you guessed and guessed and got sick. You need to take responsibility for your intolerance and be unassuming. gluten is not something that you would be able to see in a dish. So this means that you need to check and recheck the ingredients in your food. If you don't know the ingredients it is your responsibility to find out. I say that because that was the hardest part of going completely gluten free for me, I was great about checking packaged things with labels that I was buying but, I had difficulties checking on food that was given to me that might be gluten free. But until I learned to do that I was getting glutened that way.

To me it seems that you are displacing the anger of glutening yourself on your mother so it's not your fault you made yourself sick. It can be very hard to admit when our mistakes make us sick. It is reasonable to be upset that you couldn't eat the stollen that was sent to you. But, not to blame your mother because you got sick. She never said that one of the stollens she sent were gluten free. If with the stollens was a note that she had made a gluten free loaf then she is being purposefully mean.

I'm not sure how your attempts at gluten free baking have gone but it is extremely difficult to reproduce gluten items. You can't just go buy a gluten free flour and replace it in a recipe. Your mother may have very well intended on making a gluten free stollen and been unable to do so. Plus with the risk of CC it would be very risky to eat a gluten free stollen she made while making other gluten items.

If your heart is really set on having stollen then you should find a gluten free stollen recipe and make one for yourself. Or start a new tradition that doesn't involve food.

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bartfull Rising Star

The more I read the stories about family here, the better I feel about not having any family at all. The only living relative I have is a sister who disowned the family years and years ago, and I haven't heard from her in forever.

My Mom had Celiac. In the days when nobody had ever heard of it, she went through similar things with friends and some of her family. She would bring her own food when she went places because they couldn't get it through their heads that gluten made her sick. She would get snarky comments like, "What's the matter, our food isn't good enough for you?" She would explain for the umpteenth time about Celiac disease, and they would tell her they never heard of such a thing, and it must all be in her head.

I watched her suffer for years, and even though I felt bad for what she had to go through, now that I have it too, I understand more deeply. I wish I could have her back for just a few minutes so I could give her a hug.

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aeraen Apprentice

Please try to understand that "civilians" are having a hard time trying to figure it out, too. From your mother's POV, she had a choice to either send you the traditional gift she has always sent to all of her children, or leave you out. I'm assuming she thought you could choose to not eat it, but at least your child still received "gramma's" gift. And, at least, she was not leaving you out.

My Bro and his wife have sent us the same fruit cake for 10 years. And I love this fruitcake. We still receive it, and I thank them every year for thier generocity. Some day, it will dawn on them that I can't eat it (fortunately, my husband can), but that fact does not diminish the love with which it was sent.

Please don't feel like I'm negating your feelings on the matter. I've just learned to forgive these faux pas. It took me a long time, lots of bellyaches and hours reading this forum to realize how serious this is. If it takes those of us affected by the disease so much work to really accept it, we have to be able to forgive our friends, family and coworkers for not understanding.

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IrishHeart Veteran

Who among us hasn't made a mistake as Newbies?

She said she believed her father said one was gluten free.

And quite frankly, I think you all may have missed this one important and poignant sentence in the OP's post:

"I am very hurt and frustrated about this. I'm about to have surgery that will prevent me from being able to eat much for hte rest of my life and this was my last year of having the stollen which is a family tradition. I can't believe my mother's thoughtless behavior made me get sick and that she treated my problem so lightly."

A little kindness is in order here, not a scolding, and certainly not condescension and criticism. Give her a break for pete's sake.

IMHO

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mushroom Proficient

Catlover, I am sorry for your suffering, both from your family and from the gluten. You have just learned two very important gluten free lessons in one incident.

Number 1 is to look out for number one, because no one else will. People do not understand how important it is for us not to eat gluten, so we have to take the responsibility for everything we put in our mouths. If you have not made it yourself or it does not come from a package marked "gluen free" be very suspicious. Even if someone claims to have baked something gluten free for you, they could still have used contaminated pans or utensils or there could have been gluten flour flying around in the air from other baking which landed on yours (yes some people are that sensitive). You have to learn whose cooking you can trust and whose you cannot.

Number 2, partially covered by number 1, is that the risk of cross-contamination is very high in foods that come from a gluten kitchen unless the baker is extremely careful. Cross-contamination is probably the top cause of being glutened - because we all learn to read the labels very carefully, we learn if we respond to processed foods that are made on lines shared with gluten products, or in shared facilities, and we learn how to order at restaurants and how to read menus and communicate with the staff. Even so, the chances of getting cross-contamination in a restaurant are quite high, especially at the lower end chain restaurants.

So just keep in mind that nobody suffers except you if you eat gluten; most people think a little bit won't hurt you; family especially tend to minimize the importance of gluten free and continue the old traditions regardless, and ultimately it is up to you to make sure that you are gluten free.

You have been given some good responses here and it is possible despite your poor relationship with your mother that she had no evil intentions (she was just doing what she has always done) and didn't want you to feel left out (i.e., at least your daughter could eat stollen) . Give her the benefit of the doubt - it is Christmas after all. But if you are getting together at Christmas, do take a plate of food for yourself so that you will have something safe to eat. :)

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bumblebee-carnival Newbie

It stinks that you got sick, but you just can't assume anymore. I did the same thing at Thanksgiving and paid the price. The relative who hosted Thanksgiving was really good about telling me what ingredients made up each dish. So, I was loading my plate up (and my mouth) with sweet potatoes. I got to literally my last bite and saw sitting in the middle of my sweet potatoes.....a freakin' cube of stuffing. It was baked in! It had put some time in with the rest of the dish. When I looked at the rest of the dish, I saw a couple more cubes in there. I don't know if the box fell or if she maybe used the same spoon on the two dishes or what. But I was thinking how much stuffing did I just accidentally ingest? I was sick for EIGHT days after TG, so it was more then just a cube or two. Plus, I found out later, she had some kind of basted or "flavor enhanced" turkey, so that most likely had gluten in it, too.

I don't think she was like Mr. Burns, gleefully cackling over her devious plan to "accidentally" gluten me, but she just doesn't get it. To her, this is just an extreme form of carb restriction for losing weight. I'm really, really good about putting on a happy face when I am miserable, so she didn't see me in pain. She didn't see me wandering the house at 3 AM because walking around was the only way to make the pain stop a little. She just doesn't get it. She sees that I dropped 20 pounds in a month and that is it.

We can't take it for granted anymore that anyone is going to get the seriousness of this situation and have to be our own advocates. Until proven otherwise, it must be assumed that all baked goods contain gluten. I made a Pam's (I think it was called Pam's) gluten free chocolate cake mix for a birthday cake and it was awesome. My family still eats gluten and they couldn't tell it was gluten free. I've also made gluten free corn muffins using the Betty Crocker recipe and substituting rice flour for all-purpose and it came out exactly the same as the regular recipe. So you can't tell just by looking.

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Lisa Mentor

Yes, you have been give good advise to mull over. Choose what you wish and disregard the other.

I have a very dear friend (much aware of my dietary issues) who has a very busy career and she sends me the same container of very expensive cookies every year. I thank her for her thought and tell her how much my family will enjoy them. :)

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New Community Member Explorer

Keep in mind that celiac/gluten free diet is ALWAYS at the forefront of our minds and it probably didn't cross your mother's mind. So I wouldn't take it personal, it more than likely wasn't intentional. It's foreign to think that people without celiac don't have to know every single ingredient and brand that was put into a certain type of food. It is very annoying and frustrating, I know. I hope you feel better soon.

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sariesue Explorer

Who among us hasn't made a mistake as Newbies?

She said she believed her father said one was gluten free.

And quite frankly, I think you all may have missed this one important and poignant sentence in the OP's post:

"I am very hurt and frustrated about this. I'm about to have surgery that will prevent me from being able to eat much for hte rest of my life and this was my last year of having the stollen which is a family tradition. I can't believe my mother's thoughtless behavior made me get sick and that she treated my problem so lightly."

A little kindness is in order here, not a scolding, and certainly not condescension and criticism. Give her a break for pete's sake.

IMHO

No, I did see that part of the OP's post and mentioned that if she really needed to have one last stollen that she could make a gluten free one herself. Or to even start a non food related tradition. Traditions do sometimes need changing and adjusting.

I believe that sometimes criticism is needed to show the OP how to prevent a reoccurance. If all you ever get is that sucks your mom was soo thoughtless... How is the OP supposed to see past her feelings in the situation to find what went wrong. When we have strong feelings about a situation sometimes they color our impressions of the event and prevent us from being able to gain any useful knowledge from the situation. And in this case what went wrong were her assumptions and the actions she took based on them. Living gluten free is a learning process and with all learning processes comes criticism and then better solutions to the problem. Not a single person who said anything negative about what the OP did, did so without an alternative course of action. That will be useful in the future.

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Lisa Mentor

I believe that sometimes criticism is needed to show the OP how to prevent a reoccurance. If all you ever get is that sucks your mom was soo thoughtless... How is the OP supposed to see past her feelings in the situation to find what went wrong. When we have strong feelings about a situation sometimes they color our impressions of the event and prevent us from being able to gain any useful knowledge from the situation. And in this case what went wrong were her assumptions and the actions she took based on them. Living gluten free is a learning process and with all learning processes comes criticism and then better solutions to the problem. Not a single person who said anything negative about what the OP did, did so without an alternative course of action. That will be useful in the future.

With certainty, a point could be made without criticism. I don't find it useful in the least. B)

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love2travel Mentor

With certainty, a point could be made without criticism. I don't find it useful in the least. B)

Me, neither.

I probably made one of the dumbest of all time mistakes as a newbie. I was diagnosed by bloodwork 4 days prior to a trip to Croatia and I was shocked as I was not expecting those results. I thought I was going off gluten properly but turns out I did not at all. Guess what I did in Croatia? I had their infamous soup with pasta and beans - I had the broth and picked around the pasta! My husband's main was pasta and I didn't have it as I knew it contained gluten. Isn't that unreal? Makes me laugh to think of it now! :lol: I thought I had to ingest the actual gluten ingredient! Not the stuff that was *touching* it. Looking back I probably got glutened nearly every day on that three-week trip. Darn it - I could have had all the pizza and pasta I wanted! :angry:

Anyway, I did my research and went off gluten strictly after that for several months. Then I was told I would be getting a biopsy so went back on gluten for nearly four months. (Our waiting list was four months long.) In the meantime I learned scads of information (most of it from here). Now I feel practically like a professional gluten chaser and advocate.

In time I think that once your Mom becomes more familiar and aware things will gradually improve. I surely hope so for your sake! In the meantime rest in the knowledge that that even veterans make mistakes, too. We are all human and learn from our mistakes so we can change things in the future. Arm yourself with as much knowledge as you can.

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IrishHeart Veteran

No, I did see that part of the OP's post and mentioned that if she really needed to have one last stollen that she could make a gluten free one herself. Or to even start a non food related tradition. Traditions do sometimes need changing and adjusting.

I believe that sometimes criticism is needed to show the OP how to prevent a reoccurance. If all you ever get is that sucks your mom was soo thoughtless... How is the OP supposed to see past her feelings in the situation to find what went wrong. When we have strong feelings about a situation sometimes they color our impressions of the event and prevent us from being able to gain any useful knowledge from the situation. And in this case what went wrong were her assumptions and the actions she took based on them. Living gluten free is a learning process and with all learning processes comes criticism and then better solutions to the problem. Not a single person who said anything negative about what the OP did, did so without an alternative course of action. That will be useful in the future.

"If you change a tradition", then, in essence-- it is no longer a "tradition".

While she already KNOWS what she did wrong--i.e. eat the bread and get sick because she ASSUMED it was gluten-free --BASED on what her Dad said--she has ALREADY learned her mistake.

She merely asked "Am I over-reacting?"

She didn't ask for lessons on negotiating a gluten free life. She's been doing it for months. She did everything right and informed her family and her only mistake was in assuming they would take that into account by making HER stollen gluten-free.

She was mistaken in assuming it would be safe.

She gets that part.

And yes, we all pointed that out.

But there are ways to say things without being critical. It's called tact.

Offering advice is more effective if you do not make someone feel worse than she already feels. Where I come from, that's called kicking someone when they are down.

Also, she has confided that she is facing major surgery that is life-altering. She thought--based on what her Dad had told her---that her parents were sending her a gluten-free traditional treat.

Yes, she made a mistake, but geez, she is already paying for it.

A little compassion was what she needed. Just my humble two cents.

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ravenwoodglass Mentor

I believe that sometimes criticism is needed to show the OP how to prevent a reoccurance.

I respectfully disagree.

This should be a safe place for us to vent when things happen and we shouldn't be attacked for it. To attack a new member like that is not what this board is for and it teaches them nothing except not to vent their frustrations again. We all need to have a safe place to vent and for some of us this is the only place we have.

We all make mistakes. Even those of us who have been gluten-free for years.

Catlover, I hope you are feeling better by now. It is so hard when our families don't really understand. Do try to make the stollen in gluten free form. It really isn't all that hard to convert if you have a good baking mix like Pamela's or Tom Sawyer flour. If you have your Mom's recipe PM it to me and I will convert it for you if you have difficulty. Just tell me what flour mixes you have locally.

I hope your surgery goes well but wish you didn't have to have it. Hang in there.

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GFinDC Veteran

Dang, I hate it when that happens. I am still getting over a CC incident from some peanuts that were not marked in any way as possibly having any gluten in them. Of course I could have called to verify before eating them, but I chose not to. Ouch! I did check the web site of the maker later for nutrition info and found they don't list any. Surprise! Parker's Peanuts in case you see any in your local store.

Reminds me of the time I went to an IHOP pancake house a few years ago and asked the young feller if they had any gluten-free pancakes. Took a while to get a proper answer from management but it was good news, all their pancakes are gluten-free! Totally wrong of course, they don't have any gluten-free pancakes. But people just don't understand what it is all about.

Hopefully you will get over your reaction soon Brkrlvr. And maybe if you get your mom's Stollen recipe can learn to make a gluten-free one yourself. :)

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beebs Enthusiast

Oh dear - we all make mistakes. I was accidentally glutening the whole family for months because I forgot to check one bottle of sauce. We live and learn etc etc. I personally would NOT feel thankful to receive gluten as a gift. But I have also learnt the hard way - that even when someone non gluten free goes to so much trouble to make a lovely gluten-free meal - that cross contamination can happen.

But it is okay of course to feel bad. That is what we are all here for!! So we can all vent to each other!

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sariesue Explorer

With certainty, a point could be made without criticism. I don't find it useful in the least. B)

One of the definitions of criticism is to pass a judgement. Just like all you have since you insist on attacking me because my judgement was different from your own. Another definition of criticism is critical commentary. Here critical commentary is needed as my feeling that she is overreacting to the situation and is in the minority. Because of my feeling that the OP is overreacting to the situation because she chose to make the unsubstantiated assumption that there was a gluten free stollen and eat it. Since my opinion is against most others I felt it needed to rationalize my opinion. Everyone else had to make a pass a judgement on the situation as well in order to determine if the OP was overreacting or justified with their feelings. Passing a judgement is also one of the definitions of criticism. Which if I remember right was part of the OP's post.

That being said how can a relevant point be made from a post if you have not judged it in some way, shape or, form? The judging isn't always of a feeling or opinion sometimes it's of a fact or a set of facts.

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Lisa Mentor

One of the definitions of criticism is to pass a judgement. Just like all you have since you insist on attacking me because my judgement was different from your own. Another definition of criticism is critical commentary. Here critical commentary is needed as my feeling that she is overreacting to the situation and is in the minority. Because of my feeling that the OP is overreacting to the situation because she chose to make the unsubstantiated assumption that there was a gluten free stollen and eat it. Since my opinion is against most others I felt it needed to rationalize my opinion. Everyone else had to make a pass a judgement on the situation as well in order to determine if the OP was overreacting or justified with their feelings. Passing a judgement is also one of the definitions of criticism. Which if I remember right was part of the OP's post.

That being said how can a relevant point be made from a post if you have not judged it in some way, shape or, form? The judging isn't always of a feeling or opinion sometimes it's of a fact or a set of facts.

Geez...must be a full moon or something! :unsure:

This is a discussion board. We discuss and share and often times we don't always share the same opinion as we continue discuss. Not agreeing with a statement is not an attack.

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Monael Apprentice

I, too, am new to the gluten free diet, self diagnosed, and feeling a great relief from intestinal problems that I am sure many can relate to. That being said, maybe I come from a perspective that perhaps might help. When I read the OP I thought to myself, that is something that I might have done because in the beginning I didn't realize how devastating it can be to be gluten free for a while and then accidentally ingest gluten. Now that I have done so a couple of times (accidentally) and confirmed my diagnosis (unscientifically), I feel as if my perspective can be of use.

I think your parents were a bit insensitive to your situation. Absolutely. However, at the same time, we have to be vigilant ourselves because we are the only ones who will suffer the consequences of gluten ingestion. I would chalk this up to a lesson learned that you have to be your own advocate. Before I figured out that I had a problem with gluten, I had heard about celiac disease but I had no idea what the consequences were and had other things to deal with so didn't learn more. Once I figured out that that I had to be on a gluten free diet, I realized that if I never had this problem, I would still be in the dark about the disease (or whatever you want to call it).

If others in your household can eat the stollen, then I would just tell your mother, in calm, nonjudgemental terms, that you gave the stollen to your children/husband or whoever it was that could eat it and that they enjoyed it. And maybe throw in a comment that you wish you could still eat it but you can't anymore. Depending on your mother, she may get it or not. If not, just keep giving the stollen to your family and keep on going. I do miss so many things that I can no longer eat but honestly I just don't care any more. I focus on what I can eat. This holiday season has been challenging because it is the first one I have had since going gluten free but my well being is so much more important that treats.

I think the most important thing for us as people who can't eat gluten, is to accept it, and move on with all that we still have that are blessings. I can still eat ice cream, potato chips, chocolate, and so much more :) And I am learning about gluten free baking so I am going to add to that list of things I can eat. Anything else is really just pouting. And I refuse to do that. We are so blessed to be able to pick and choose what we can eat, instead of wishing we had food to eat.

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Lisa Mentor

I think the most important thing for us as people who can't eat gluten, is to accept it, and move on with all that we still have that are blessings. I can still eat ice cream, potato chips, chocolate, and so much more :) And I am learning about gluten free baking so I am going to add to that list of things I can eat. Anything else is really just pouting. And I refuse to do that. We are so blessed to be able to pick and choose what we can eat, instead of wishing we had food to eat.

I especially love this part of your post. :D Where do you live Monael? xxxooo

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mushroom Proficient

A well-reasoned post, Monael. I, too, try to focus on the cans rather than the cannots, since the cannots can get a bit overwhelming. And a positive attitude beats a negative one any day, as I keep tryhing to tell my SO. :) We can still respect our parents while rejecting the food they offer us which we cannot have. And ask them to rrespect that rejection as taking care of our health and not rejecting them and their love for us.

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Juliebove Rising Star

Gluten isn't an issue for me but if it were, I wouldn't have eaten any. I would have given it away or thrown it away. Myself I have food allergies and diabetes. People still give me foods I can not eat. Such as cookies. And fancy egg containing gluten filled pasta. My daughter has the gluten issue.

People just don't think. And when they get older like my mom is, they can't remember what it is you can't eat. And in the case of gluten, it seems some people will never get it.

Sorry that you got sick.

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    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Would like to gain weight


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    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
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