Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Family And Friends Wanting To Be Helpful


teemaree

Recommended Posts

teemaree Apprentice

I guess others out there may have experienced the same thing I am at present.

I am lucky, that I have a family, inlaws, and friends, that are being very supportive of my celiac..

They all could see how I have been falling apart and loosing way too much weight, and how I am just not the person I was, depression, sadness, forgetfull, and just look dreadful!

When I was finaly diagnosed, it was a relief in some ways, for them and for me. To have an actual reason as to why I was deteriorating before everyones eye.

My problem is, They are trying to be to helpfull!

They go out shopping and buy me food items, spending lots of money of them, thinking that I will love it and be so appreciative of it. And I am in a sense. I am grateful that they were so kind in thinking of me, and wanting to be helpful, and that they all love me so much, they want to see me gain weight and be healthy.

But they go to bakeries, and supermarkets etc... and see Gluten free on packages, or some bakeries specialise in gluten free products, and they buy these items for me.

With the products they buy, they don't recognize that there is other things that I have reactions too!

And the bakeries tell them, that they sell a lot of their items to celiacs, and they are fine, there is nothing wrong with them.

So my family members buy these products for me...

like Gluten free bread, and recently and beautiful queich, which was filled with vegetables ,it didn't have any kind of crust etc.. and looked to be fine...

My problem is, I had bad reactions to the things they spent a lot of money on!!

I have now learnt, that to just try and little piece of things and wait an hour or so....and see what happens. Well everytime I do that with the products they have bought me...I have gottern extreamly sick and in pain.

This not only leaves me feeling ill and sick and in pain. But also mentally challenges me.

I feel they don't believe me, when I say the item made me sick.

I sometimes know that the things has ingredients that I will react too, but just try it to appease them , because I know they were being thoughtful, and spent large sums of money on the items.

Then I get very depressed, because I feel I let them down, and I feel like they think that the sickness is all in my head.

they phone up and say how was the "item" did you like it?

and I have to say I had a bad reaction, then it hurts their feelings, and they think I am ungrateful.

But if I lie and say yeah it was good.. they go out and buy more!and waste all their money on food for me.

The other day after trying the queich that my in laws bought, I was on the lounge and in pain....

I said to my husband, I can't eat what they bought me... he rolled his eyes and shook his head.

And I felt so guilty about it.

I thought I have to proove it to him!

So as he walked past me.... I said here place your hand on my tummy ..........he put it there for a minute, and it took a bit till my stomach kicked and I said can you feel it?

He said yeah!... it sort of felt like a baby kick...

I said yeah that's it... that is constantly going on in my stomach, I feel so sick, you can hear my stomach it's saying I can't eat that item! Then I get all headachy and tired.

I hate this... I hate letting my family down when they are only trying to be helpful and loving and supportive.

Then the other issues where my family want me to go out etc... I try, but then they are left feeling guilty cause I can't eat anything... or others offer me food , and I say no thank you... and then they feel they have to tell the person that offers me the food, that I am celiac... then I feel like I have the plague or something...

Are there ways to get around these types of problems?.... or not really?

I just have to go on feeling guilty and hurting peoples feelings ?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



digmom1014 Enthusiast

At least they are trying to be supportive! I know it doesn't help much but, there are a lot of us that are still battling to have people understand.

Have you started charting your food reactions? I found that even after a year some things still get me, i.e. nuts, soy, potatoes. Maybe you aren't full on allergic to them but, you do have intolerances.

Let people nicely know that your dr. is still checking for more problems and that although you appreciate the thought/food, something is still making you sick.

Tallforagirl Rookie
Let people nicely know that your dr. is still checking for more problems and that although you appreciate the thought/food, something is still making you sick.

I'd thank them politely for their gift, but tell them you are only eating plain whole foods to start with, until things settle.

You might find by eating very plainly for a while, things do settle and you can start to try some of the gluten-free treats.

ryebaby0 Enthusiast

Ahhh, isn't this a problem? Soooo awkward!

Anyway. Write these people a lovely thank-you note and tell them you are just so sorry, but for the next 6-9 months you are concentrating on a very limited diet because everything seems to be causing a reaction (tell the truth!) but love them for the support. And then give them a list -- a 5-item list -- of what they CAN get you. Say "I so love that you want to help, and I know you are so careful, so here are five no-fail things" And give them a no-brainer list. Or tell them "if you want to help, I'd love a new book to read, or a basket of fresh fruit". Publically pine away for lettuce. Or whatever.

You have this backwards. It's not your job to make them happy. It's your job to get better. Although we've certainly been in this awkward position! As for the "not believing" -- there's always somebody who won't believe you; turn a blind eye to them. My mom would sometimes fuss about what my son would turn down (and he is picky) as potentially unsafe, and I just said "It's his body. He gets to choose what he puts in it. It's only food, not love. He knows you love him, and he loves you back, just not those cookies" She came around ~

good luck! hang in there! Your instincts sound great :)

CaraLouise Explorer

Maybe you could tell them some of your favorite products and that if they would like to get you a special item they could do that. I know how you are feeling, but I have found that if I tell them exactly what I want then everyone is happy and the gifts are well appreciated.

It is so nice to have this problem and not the other way around though. :)

Hope this helps!

JNBunnie1 Community Regular
Ahhh, isn't this a problem? Soooo awkward!

Anyway. Write these people a lovely thank-you note and tell them you are just so sorry, but for the next 6-9 months you are concentrating on a very limited diet because everything seems to be causing a reaction (tell the truth!) but love them for the support. And then give them a list -- a 5-item list -- of what they CAN get you. Say "I so love that you want to help, and I know you are so careful, so here are five no-fail things" And give them a no-brainer list. Or tell them "if you want to help, I'd love a new book to read, or a basket of fresh fruit". Publically pine away for lettuce. Or whatever.

You have this backwards. It's not your job to make them happy. It's your job to get better. Although we've certainly been in this awkward position! As for the "not believing" -- there's always somebody who won't believe you; turn a blind eye to them. My mom would sometimes fuss about what my son would turn down (and he is picky) as potentially unsafe, and I just said "It's his body. He gets to choose what he puts in it. It's only food, not love. He knows you love him, and he loves you back, just not those cookies" She came around ~

good luck! hang in there! Your instincts sound great :)

This is the best advice I 've heard in a loooong time. Thank you!

teemaree Apprentice

Thank you everyone for all your wonderful suggestions, they were more helpful than you might know..

My mother in law, rang me and asked about something she had bought me and did I like it....

I said very politely, that unfortunately it did give me a bad reaction, and used this advice

Let people nicely know that your dr. is still checking for more problems and that although you appreciate the thought/food, something is still making you sick.

I said that I am still having bad reactions to things, and the doctor and I are working to find the exact ingredients that are also causing reactions. This really helped appease my mother in law...

She even said herself, "ahh it must be something that is being used instead of the wheat and you must be allergic to that!" I agree'd with her

And she was quite understanding then...and nice about the fact I was having difficulties eating the products she was buying.

I also pointed out that I can't eat soy and so many products have soy in them, under other names...

I told her that I appreciated all the trouble that they went too, to buy the products for me...

And I get very upset, when I get bad reactions to them, because the food is lovely, but until we find what the exact products are that are causing me to react, I need to stick with the products I know that aren't causing me problems.

She was very understanding....

So thank you everyone, you did help me a lot with your suggestions. I was so unsure how to handle things. I didn't want to hurt anyone's feelings...

You guys are the best!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748

    Athenablue
    Newest Member
    Athenablue
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.