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

By Marlene
in Coping with Celiac Disease

Recommended Posts

Marlene Contributor
Marlene
Posted

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
CarlaB
Posted

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
ptkds
Posted

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
Creative-Soul
Posted
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
kbabe1968
Posted

:( 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
tarnalberry
Posted

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
Nooner
Posted

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.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    2. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    3. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    4. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    5. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
×
×
  • 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.