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


Marlene

Recommended Posts

Marlene Contributor

So this weekend we are having my family's annual get-together turkey dinner. I was actually looking forward to going because other than stuffing and gravy, I can eat everything that we usually have at these dinners. (I would be bringing my own dessert.) Last night my sister calls. She is in charge of what everyone has to bring this year and she decided to make it a pot-luck dinner. We will still be having turkey but instead of the usual fare, she wants everyone to bring a casserole, and salad or dessert. I told her that was too bad since that means I will probably only be able to eat turkey and whatever food I bring along. Her response? "So??" Yup, that is what she said. I just stood there on the phone, mouth hanging down to the floor in complete silence. She has a daughter who is diabetic so I really thought that of all people, she would understand about food restrictions. I realize that I am only one person in a large family but I was very hurt by her response. Potlucks are a nightmare for me. I tried explaining to her why this is but I don't know if I got through. She told me to get her a recipe and she would try to make something that I could have too. She then suggested a casserole which is smothered in cheese. I can't have dairy. I told her not to bother. I realize that these people don't live with this every day but after the last family get-together a few months ago where there was not one single thing that I could eat, I am getting really discouraged.

Am I over-reacting or would you have been hurt by her attitude as well? I don't think people who can eat anything realize how isolating it can be to always be "different" when it comes to social events that focus on food.

Maybe the best way to look at this is to realize that people are basically self-centered and I should not hope for understanding from anyone. Not even family, not even my sister who I have always been quite close to. Even though every time they have come to my house, I always made sure I had the right food/ beverages on hand for her diabetic daughter.

I am sorry this ended up being such a long post. I am just feeling very sad today.

Marlene


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I understand completely, though I wish I didn't!

I think it's easiest to expect NOTHING. That way when someone goes out of their way for you, you will appreciate it. It saves you from being constantly disappointed. It's just shocking and disappointing to find out people don't care ... especially when it's someone you thought did.

ptkds Community Regular

I am so sorry about this. I know the feeling w/ potlucks. We have potlucks at church alot and I dread those because ppl will always give my toddler food or allow their toddler to "share" with her.

You can always say that you can't go because you are scared you will get sick, or take all of your own food and make a point of saying how hurt you are that you can't eat w/ them anymore!

Good Luck

ptkds

Creative-Soul Newbie
I think it's easiest to expect NOTHING. That way when someone goes out of their way for you, you will appreciate it. It saves you from being constantly disappointed. It's just shocking and disappointing to find out people don't care ... especially when it's someone you thought did.

I'm with CarlaB...it's best not to expect anything from other people; that way when they are understanding, its a blessing, but when they don't, we won't be all crushed. Also, rememeber how hard it is for us to navigate this way of life sometimes, especially in the beginning; it takes a real commitment on the part of others (and compassion & empathy) make the effort to learn about our condition and all the precautions we need to take for our health - it's not as if we're doing something to purposely make our lives miserable! :angry:

Even though you think that you're sister should be more understanding because of her daughter, sometimes it's hard for people to relate their experiences to other people...do you understand what I mean?

kbabe1968 Enthusiast

:( sorry. People can be so cruel!

I'm concerned about my first family gathering since going gluten-free. BUT....

My husband has gout, so I'm ALWAYS concious of what's available to him for eating. To the point where I usually bring something I know is safe.

I'm am the complete opposite when I know someone has specific dietary concerns. I have a friend who has a daughter with severe milk allergies (even to soy and other stuff too). I always call her before she comes over, plan what we're going to have for lunch, go over the ingredients to make sure that there not one thing that would cause a reaction, etc.

Or if someone was vegetarian or diabetic, i would ALWAYS make sure there were special things. I would always not make a big deal about it, either. We had one friend who was a vegetarian (she ate dairy). If we were having a BBQ, i'd always make sure I had a pack of veggie burgers and dogs, and definitely a salad.

This year for christmas I did a whole bunch of baking for diabetics. I found ways to make almond biscotti and hot chocolate mix with splenda instaed of sugar! (now I'll need to learn how to bake glutenfree).

:)

I would say in the future...bring something you know you can have. I know that's a pain, but at least you'll eat.

SORRY she was so cruel!

tarnalberry Community Regular

So "I'm sorry, I won't be attending. I'm not quite prepared to deal with my family emotionally abandoning me like that right now," isn't a response you're likely to give? ;)

I agree - expect nothing. Some people are selfish, some people don't understand. This Christmas, my inlaws and all of us kids were invited to an old family friends place. The hostess is a big cook, and while we told her we'd be bringing food that I could have (brought over a veggie lasagna, beet and ginger salad, a green salad, and baked apples), she still tried to make things gluten free. But the risotto had organic Swanson's broth (not gluten-free), the mashed potatoes had Rice Dream (not gluten-free), and I didn't even ask about the other things.

The next day, by brother in law, who IS very supportive, noted that he never realized how difficult it can be for me in someone else's kitchen, even when they try to cook gluten free. (I'd like to think that part of that is because I make it look so darn easy in my own kitchen. :P)

Point is - even the people who do get it, don't necessarily get it completely. I can't blame them, though - the level of paranoia we practice with very common items that are extraordinarily hidden from daily view is usually considered unhealthy.

Nooner Newbie

Bring your own plate of gluten free, tasty food that can be microwaved when you're ready to eat, and enjoy yourself.

I'm going to be the devil's advocate here - your sister may just have been having a bad day. Or something else could have been going on. We all get wrapped up in our own dramas occaisionally. Don't write her off just yet. Take charge of your situation, bring your own food, and make a gluten free, diabetic friendly dessert her daughter can enjoy.

And maybe next year you can host the family dinner, and make the whole darn thing gluten free! :)


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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.