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

Need Emotional Support/help!


Ladycates

Recommended Posts

Ladycates Apprentice

Hi! Both my husband and son were diagnosed with Celiac disease almost 3 years ago. Since then, our house has been gluten-free. I haven't personally touched gluten since the dx either.

I feel like I'm having such a HUGE struggle with the emotional issues from the disease. I feel sorry for us and I know that's not healthy. I get angry and frustrated with it.

For example, our entire family is going on vacation to a beach house with my inlaws. There will be 3 other kiddos there that are celiac free. It hurts me deeply when they all go out to dinner and we have to stay behind and cook and clean up. I know that I can't expect them to stay and eat with us ... heck, then I have to cook for 7 more people ... but it's just such a separation and I'm just SOOO sensitive to this. It depresses me. It makes me mad that they can go enjoy themselves and we're stuck cooking and cleaning. They get to take their kids out to the local ice cream shop for cones and we have to stay behind. It just SUCKS and I WANT to be able to let it go and have fun but I'm struggling. Advice? Will this feeling ever go away???


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Before you go on the vacation find out what restaurants there are close by then call and see if they have gluten free menus. Many places do now. Do the same for the ice cream shops. If you can't check before you go then maybe on the first afternoon there you could take a side trip into town and scope out what is available.

conniebky Collaborator

Before you go on the vacation find out what restaurants there are close by then call and see if they have gluten free menus. Many places do now. Do the same for the ice cream shops. If you can't check before you go then maybe on the first afternoon there you could take a side trip into town and scope out what is available.

Yes, I agree with Raven. I've been shocked by how accommodating places have been, even just explain the situation, and believe me, it's NOT the first time they've heard it, and they will work with you. I've not had anyone look at me like I'm crazy except that girl at McDonald's when I asked about their ice cream.

Even just go and get a salad and stick of bottle of Wish Bone gluten-free in your purse, at least you get to go out and enjoy friends and summer, right? I do that and I don't give a rip who thinks I'm crazy, I'd rather be laughed at than sick.

Go out and enjoy, ask questions, enjoy.

Ladycates Apprentice

Yes, I agree with Raven. I've been shocked by how accommodating places have been, even just explain the situation, and believe me, it's NOT the first time they've heard it, and they will work with you. I've not had anyone look at me like I'm crazy except that girl at McDonald's when I asked about their ice cream.

Even just go and get a salad and stick of bottle of Wish Bone gluten-free in your purse, at least you get to go out and enjoy friends and summer, right? I do that and I don't give a rip who thinks I'm crazy, I'd rather be laughed at than sick.

Go out and enjoy, ask questions, enjoy.

Thanks guys! If it were just me and the hubby, that'd be easy! But I have a 6 and 2 year old, both, who will need to be fed more than a salad after a long day of playing at the beach. Eating at places that are gluten-free are much pricier than the usual places ... so that's a factor, too.

I'd just like to be able to deal with it emotionally and just move on. I'm just so sensitive about it all.

mzprettypia Newbie

Hi all,

I am new to this and just started my gluten-free journey recently & what a difference in the way I feel. My mother ,sister & I have had symptoms after eating certain foods That we could not understand. Well, after hearing and reading Elizabeth Hasselback's book and her experience...I was hooked. I truly believe my family has struggled from celiac disease and just thought it was the way we were.."sensitive tummies".

I AM SOOO HAPPY SKY VODKA AND WINES ARE Gluten-Free!!!!

I am so happy to find this site. Let's keep each other informed & motivated. My skin even feels better!

From, So Cal at the beach,

Pia

Jestgar Rising Star

I never eat salad when I go out. There are usually multiple options, if you find the right place.

jackay Enthusiast

If your kiddos can tolerate dairy, there are a lot of ice creams that are gluten free. A lot of places can tell you the ingredients in their ice cream. Sure they'll have to have it in a dish, but they can still have it as a treat. If they can't go out for a meal, hopefully they can enjoy ice cream with the others.

If it has been three years since you have all gone gluten free, may I suggest you talk to someone professionally about how this is depressing you. Three years is a long time to feel to suffer the emotional side of this.

Good luck!


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



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

There are so many places that will accomodate you, why are you staying home cooking and cleaning? Do the calling ahead of time and plan places you can eat out. Call managers ahead of time.

Recently I was so stressed because a big group of friends were in town and they made reservations at Bucca Di Beppo, Italian! How could I eat at an Italian restaurant with celiac? But I called the place anyway and lo and behold, they have a gluten free menu there, on paper, where I can read it and choose like normal people. I did call the manager to oversee my order and told her I'm extra sensitive. Everything was great and I've eaten there twice now without any problems.

There are options are ice cream stores too. We eat ice cream out. I check ingredients and have them get a clean scooper if I feel I need to.

Make the effort and eat out with your family. You are not a prisoner to this disease!

sandsurfgirl Collaborator

If your kiddos can tolerate dairy, there are a lot of ice creams that are gluten free. A lot of places can tell you the ingredients in their ice cream. Sure they'll have to have it in a dish, but they can still have it as a treat. If they can't go out for a meal, hopefully they can enjoy ice cream with the others.

If it has been three years since you have all gone gluten free, may I suggest you talk to someone professionally about how this is depressing you. Three years is a long time to feel to suffer the emotional side of this.

Good luck!

I agree about getting counseling if you are still depressed about it. Also is your information correct about what does and does not contain gluten? There is some big misinformation out there that makes people think they can't eat things that are safe. Caramel coloring is safe but people think it's not. Maltodextrin is safe. Go to the safe and forbidden foods lists on this site and make sure you aren't avoiding things you don't have to avoid.

Tina B Apprentice

Hi all,

I am new to this and just started my gluten-free journey recently & what a difference in the way I feel. My mother ,sister & I have had symptoms after eating certain foods That we could not understand. Well, after hearing and reading Elizabeth Hasselback's book and her experience...I was hooked. I truly believe my family has struggled from celiac disease and just thought it was the way we were.."sensitive tummies".

I AM SOOO HAPPY SKY VODKA AND WINES ARE Gluten-Free!!!!

I am so happy to find this site. Let's keep each other informed & motivated. My skin even feels better!

From, So Cal at the beach,

Pia

Also Lukasowa, Chopin and Ciroc vodka, not to mention rum and tequila!!

cassP Contributor

Outback has gluten free options- and it's delish!

Connie- i THINK McD's ice cream is gluten-free... ive been on there site a few times this month- to triple check on the fries -has wheat :(... and to see if the new frappes were safe- they are. i think the ice cream is good as long as u dont add in some kind of cookie piece to the mcflurry

sb2178 Enthusiast

If the ice cream place tells you they don't have the ingredient list, make them pull the canister out and look at it. Hershey's definitely has it printed right there. Sorbets are also an option if dairy is an issue.

And, can you get hubby to cook? or at least clean up? Sounds like you usually do the cooking at home too, so maybe YOU need the vacation from housework. If not, check out prepared food options. Fries, frozen veg, and hamburgers? Soup and crackers?

Good luck. It can also be frustrating in the opposite way and have relatives over react and buy everything labeled gluten free (without finding out what's edible) for a two day visit! When, seriously, you would have been just fine with some boiled potatoes and plain, unseasoned veg, cheese, etc.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,909
    • Most Online (within 30 mins)
      7,748

    Hmart
    Newest Member
    Hmart
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.