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


T.H.

Recommended Posts

T.H. Community Regular

So how does your family react to your super-sensitivity? Supportive? Doubtful? Aggressive on your behalf or against you? What's been your experience?

And how do you deal with problems that crop up with this?

How do you deal with the limitations placed on you vs. what your family can do and experience?


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

For me, food allergies ran rampant in my family so we all are aware that this person can't have this or that which is nice in a way. However, of all the family I seemed to be doing the best and seemed to escape the allergies and then it hit me like a ton of bricks all at once and then was worse than everyone else, and that I think my whole family (including me) is still kind of boggled by.

My husband is very very forgetful and thinks I can just anything or anywhere but he is getting it. It's been slow for him too, we have been married 19 years.

My limitations seem more with friends and being invited to their house for a meal, or going out for a meal. I used to not say anything but now I talk about it and I have been able to inform several of my friends of what I am dealing with. They understand and it helps.

Roda Rising Star

I wouldn't call myself a super sensitive..YET! :P However I am finding I am becoming more sensitive to lower levels than previous. As far as my immediate family, everyone is supportive. Myself and both my boys are gluten free. I am finding that my youngest(who is celiac) is getting more sensitive to low levels of CC also. Older son(non celiac gluten intolerent)I "think" is a lot less sensitive than his brother and I and it appears he can tolerate gluten free products that may or do have gluten free oat CC. His brother and I don't tolerate those things at all. Hubby is pretty supportive. I know at times he gets anoyed because of the inconvenience, but it is not directed toward anyone. Luckily he doesn't care if we go out to eat often. We were pretty much home bodies to begin with. When we do go places I always pack a cooler with food for everyone. I haven't turned down many social invites, but then again, we didn't get many before. We have a few friends that we go to their house and they understand. We don't travel much, only to my parent's and inlaw's houses, so that hasn't been an issue. We do like camping and to make it easier, we make things up ahead of time or eat safe things out of a can. Not great food, but hey, we are camping and don't want to drag everything with us. I tend to invite people to my home for dinner more now because I know I can safely eat. Hubby and I got an invite 1st weekend in Nov. to a pig roast. We accepted the invite even though my hubby will be the only one eating. I'll pack something similar for the boys and I. I don't want to give anyone the impression I can't do something because of celiac. We will go and have a good 'ol country time visiting with everyone. It does take more planning than in the past and the spontaneity is gone.

Di2011 Enthusiast

My mum has had a big turn around in her attitude. A few months ago she said my issues weren't serious enough to be celiac. I got so sick of it that I eventually bit the bullet and showed her the worst of DH and scars. Mine has been head to knees and my knees, thighs and upper arms are plain awful looking ((still healing & scarred)). I also made a point of telling her way more than she needed to know about my digestion system!!

Now she drops by with gluten-free products she spends hours shopping around for! She even admitted to me that she has started cutting down on the wheat products and she is looking better for it.

AVR1962 Collaborator

My mum has had a big turn around in her attitude. A few months ago she said my issues weren't serious enough to be celiac. I got so sick of it that I eventually bit the bullet and showed her the worst of DH and scars. Mine has been head to knees and my knees, thighs and upper arms are plain awful looking ((still healing & scarred)). I also made a point of telling her way more than she needed to know about my digestion system!!

Now she drops by with gluten-free products she spends hours shopping around for! She even admitted to me that she has started cutting down on the wheat products and she is looking better for it.

I am glad to hear this! I think sometimes we shelter our friends and family from what we don't want them to know about us, or be concerned about, and then we don't understand that they don't know more. This is something I had to realize and I had to learn to open up more about what I was dealing with and what I was going thru to help others understand. It is very confusing for ourselves, let alone someone else. Good for you showing your mom your DH issues and as hard as it maybe to to talk about, maybe your mom has a better understanding what you have been thru now.

dilettantesteph Collaborator

It's interesting how they start off not believing it, and then they end up gluten free themselves. They find out that they had been very sick without realizing it. My dad had always had D problems, and so had his dad. When I got them, it seemed like some inherited thing, which it was. We just didn't know that it could go away.

It's funny how you don't want to give things up. Then, when you do, you realize that giving these things up is nothing compared to how much better it makes you feel.

Many of us have been sick a long time trying various things to treat it. We can tell before there are outward indications that this time we have finally figured it out. When it becomes obvious to others they become more supportive.

lizard00 Enthusiast

I'm pretty much a PIA when I've been glutened, so my family is pretty protective over me! :ph34r::lol:

Seriously though, they really are protective. They saw me when I was at my sickest and know the real effects of gluten on me. On top of which I have the genetics on both sides of my family, so a couple of my other family members are gluten-free also. And they all know that a crumb will make me sick. I consider myself very blessed!


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



Celiac.com Sponsor (A8-M):



Di2011 Enthusiast

And my son (9y/o) checks labels when we go to the store and encourages me not to itch too much!!! He is my biggest champion. I think he can see how much less I need to sleep, I'm not nearly so lethargic or grumpy and he sees I itch less since going gluten-free - so it is quite obvious to him that he prefers 'this' mum around :D

A friend of mine baked a gluten-free orange cake to bring to a gathering of school fete organisers!! It was still warm and yum-o. I've been very tentative and adverse to anything that looked baked, pasta-like etc but it was such a nice thought I couldn't resist. ((Even better that I had no effects from eating it!!))

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    5. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.