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

How To Deal With Those Who Don't Understand


NYC-GFRN

Recommended Posts

NYC-GFRN Newbie

I am newly diagnosed and have been off gluten and wheat for over a week with great improvements but not total relief. my partner gets impatient with me if i have symptoms and don't feel up to doing usual activities and says that i only get this way (meaning having symptoms) around him and implies that i am somehow doing this intentionally--today i had a product that contained wheat without knowing it did-l did a search after i started experiencing symptoms and found that what i ate was not gluten-free/WF). i am so hurt because he rarely has any GI distress or reactions to foods so of course how could he understand? how do you handle this? it was hard enough but a relief to get an answer to why i was having my constant symptoms but i need support not to feel bad. has anyone else experienced this?

thanks! :P


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

It makes life really hard when we don't get the support we want from our loved ones. It is early days yet. We can hope that you can teach him how much gluten hurts you and how hard you are trying to avoid it; enlist his support in keeping you gluten free and see if you can win him over that way. That's the best I can offer. If he sees you are really serious, that you are really suffering when you accidentally ingest gluten, then you can perhaps get him on your side. When you find your partner unsupportive the worst thing you can do is wimp and whine;you must be assertive and tell him/her that this is what you need to stay healthy. If they can't respect that then they don't deserve you, plain and simple. It is not your fault!!

NYC-GFRN Newbie
It makes life really hard when we don't get the support we want from our loved ones. It is early days yet. We can hope that you can teach him how much gluten hurts you and how hard you are trying to avoid it; enlist his support in keeping you gluten free and see if you can win him over that way. That's the best I can offer. If he sees you are really serious, that you are really suffering when you accidentally ingest gluten, then you can perhaps get him on your side. When you find your partner unsupportive the worst thing you can do is wimp and whine;you must be assertive and tell him/her that this is what you need to stay healthy. If they can't respect that then they don't deserve you, plain and simple. It is not your fault!!

Thanks so much Mushroom!! I will give it a shot. I definitely feel better after reading your reply! Have a great night :D !

tarnalberry Community Regular

I don't have a lot of patience for that sort of stuff. I'd probably say something along the lines of "wow, are you really that self centered that you think MY feeling like sh$! revolves around you? really?" I would then probably point out all the times I did participate in the "usual activities", and add "if I really wanted to pretend I was sick just to get out of seeing you, don't you think I'd pick something easier to fake and that still let me eat decent pizza?"

Might be a little heavy handed, but I have no patience for those who think you should live in their body, mind, and pace.

msmini14 Enthusiast

lol Tarnalberry, that would have been something I would say.

I think Mushroom gave good advice. It took awhile for my dh (back then he was my bf) to understand that it is a priority for me to eat gluten-free. Most people need to learn about the disease and what it does to us before they can see it from your point of veiw.

If he still wishes to be this insecure with your health then I would move on.

I still suggest explaing this situation to him, it will take him and yourself awhile to catch on but hang in there.

Ahorsesoul Enthusiast

IMO, I don't think it's an issue with food or education of the effects of gluten. It's respect.

If a person respects you they respect your views (doesn't mean they agree with you) and your limitations (what you eat, what you believe in and physical limitations).

Yes, education can help but if it's they don't respect you it will not matter. The problem will be their excuse that you are too much trouble.

I had a friend who had several health problems (probably all because she was in her late 60s before someone re-read her chart and found out she was celiac). She was allergic to horses and had asthma so bad that she'd end up in the hospital after being around either. She had been told by her doctors to not even visit people who had horses and not to be around anyone who smoked.

When we'd go to visit, we always took a shower, washed our hair and put on clean clothes because we had horses. My dh smoked but never smoked while we visited her, even if her dh was smoking in the same room as she was in. It was out of respect for her health. It did not matter to us that she and her dh did not respect her health.

And yes, she did die because of her lack of respect of her health not from old age. I miss her a lot but she did teach me a very vauable lesson about respect.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,929
    • Most Online (within 30 mins)
      7,748

    Mike Rowicki
    Newest Member
    Mike Rowicki
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • 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.