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

What To Do When People Dont Listen?


hh73

Recommended Posts

hh73 Apprentice

What do you do when people insist that you eat, when they cant *really* verify they made is gluten-free, but they insist that it *is* gluten free. For example, I have a very motherly mom, and she could not verify that the spices she used to make yesterday's meal were gluten free, but she was absolutely stubborn and self-confident that they were gluten-free. I know that they were not, because I have been feeling extreme fatigue (my one and only celiac symptom) since eating her food yesterday.

How do you deal with this from the social point of view? Some people cannot accept that this is a *strict* diet and they think its better to gluten us rather than face facts! They don't want to accept they made have made a mistake as a host!


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Likely if they were plain spices, they were gluten-free. If they were a packaged mix, like a chili seasoning, they might not be gluten-free. The problem with her even slicing you an apple, is that her kitchen stuff is cc'ed. The cutting board she cuts the apple on - she cut bread on this morning. Her colander that she washed the strawberries in is also used to drain pasta. She had the pot of gluten-free beef stew simmering on the stove while she mixed flour to make biscuits, next to the pot.

My mom absolutely does not listen to anything anyone says 80% of the time. I have tried to explain why I won't eat at some place or don't want her potato salad (but the ingredients are gluten-free!) many times. She doesn't remember or "remembers" that I said I can have eggs & potatoes. With her this applies to everything. She could ask my son about his football game, and the next day ask me the same question or tell me what she wanted to hear. Its not Alzheimer's its just she is not paying attention. I try to distance myself from anything having to do with food with her.

So: other people are not responsible for your health and special diet. Inform your mom, firmly, that you will bring all the food or your own food, or some combination of that. You go to a party, eat ahead or bring a dish that's filling that you can eat. I like to bring twice baked potatoes. I either grab the first ones out of the pan or bring a separate dish with mine in it. Its filling and not too unfriendly.

tarnalberry Community Regular

I don't eat the food. Period. It's not my fault if they choose to feel upset over it; they make that decision all on their own. I will say something like "No thanks, I'm going to pass." No room for questions, no room for debate - simply your choice to not eat the food. (Though it's usually nice to add something like "I do really appreciate the thought, though. It looks lovely.")

bluebonnet Explorer

i just don't eat over sparing their feelings (moms included). moms generally want the best for you but if they don't fully understand the disease they don't *know* what the best is for you. so you just gotta be tough and more insistent then they are. EVENTUALLY they'll get it. :) oh and give them information overload.

Reba32 Rookie

Yeap, they either get it or they don't. I've tried to explain to family that I can't have even a single crumb of bread to touch my food, and then they'll serve lunch and put the gluten free bread and the "regular" bread in the same dang basket! And stick the crumb filled butter dish in front of me and then ask why I'm not eating.

hmph...

So, you take your own food, and say you don't want to seem rude or ungrateful, but you really enjoy their company, and so that you can stay a bit longer to chat, you brought your own so you're not distracted by pains in your gut. ;)

When I go to my sister's house, I try not to touch anything. At all! I'm even scared sometimes to have a cup of tea!

Maybe eventually they'll get it.

fran641 Contributor

It is a challenge to live in a different food world than most people around us. I have a dear neighbor that we always had lots of meals with. She usually invited us because she doesn't go out much. Once I couldn't eat what she cooked it took the fun out of it for her so we were invited less and less. We took food over for the dinners a lot but that didn't fill her need to feed. I hate that it turned out that way but I'm ever so grateful to be gluten free and feeling like a new person physically. I recently had a biopsy that showed no sign of disease! yeah! I've been doing this since Dec. 08 and it is working. Don't give up it is so worth it.

Ahorsesoul Enthusiast

There are people you just can't make understand. Either do not eat at their house or bring your own food. You choice is to hurt their feelings or hurt yourself. They will get over their hurt feelings without a health risk. You might not.

I do go to family/friends houses for dinners. I just do not eat their food. I bring some gluten-free food (i.e. casserole) and/or dessert. I share with them, eat my food and have a nice social time without an unhealthy risk. Everyone I know knows I will not eat their food. It's a rule. They have learned to accept this.


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



Celiac.com Sponsor (A8-M):



jackay Enthusiast

I think it is difficult for others to understand because they don't have the physical ramifications of this that we do. I don't know how understanding I would be it I didn't have this. My friends and relatives accept me bringing my own food at least. However, like many others, I get invited to meals and to go out to eat less and less.

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. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    5. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

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

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
×
×
  • 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.