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

Trying ...


fripp017

Recommended Posts

fripp017 Apprentice

Warning : This may be a large post of venting, but I hope someone can relate to it.

So, I found out I had Celiac Disease February 2009. It wasn't a big deal at first. I thought that all I needed to do was change my diet and life would go on... WRONG!!! I had my two children tested, just to be safe. I'm glad I did because the blood results show signs of Celiac and we will be seeing a pediatric GI specialist for them soon. I feel awful because I am the one whose genes made them sick. I can deal with it, but now my babies will never remember what birthday cake really tastes like, or get to eat the oreos they love so much. I feel horrible as the parent of sick children and as the person who made them sick.

On top of that, I have been trying work off the weight I gained while I was trying to get diagnosed. I have barely lost anything!!! I had to work to lose weight before, but this is ridiculous!!! I am so frustrated! I just keep thinking about life before ... I had no idea how good I had it.

Also, my husband is in the Navy. He is on a submarine and he has been in and out to sea this whole time. He found out the results of my childrens' tests via email. It's hard not to have someone there to support you through such a large change. People don't know what Celiac Disease is. It isn't well known and most people don't look at me and think, "wow she is sick." For my own family to invite me out to dinner and I have to remind them what I can't eat and why I don't eat out anymore. It's crazy. They act like it isn't a big deal and they often tell me just to have a little bit of "whatever" when they don't want to work around me and my illness. I have to remind them of the months I spent being ill and visiting the doctors. Not even my husband has been very kind about the situation. He hasn't been home long enough to see how hard it has been for me. I wish he was here, but I don't really know if he would help or make it worse. We are also looking at getting new orders and moving in a few months, on top of all the stress and change I already have been dealing with - by myself. He won't even be here for packing, cleaning, or any other prep that I will have to do.

So, I saw my doctor today to get some paper work done and he asked me how it was going. I told him all of the stress I have been dealing with and how I was feeling kinda down. So, he tries to be positive and tell me that at least I pushed to figure out what was wrong with me so now my children will be taken care of before anything gets out of hand. All I can think of is how horrible a person I am for giving it to them. So, in the end he sends me home to consider seeking help for depression! Crazy! I was diagnosed with depression within the last year, but I would honestly attribute that to the Celiac Disease. It can be a symptom and why wouldn't I be depressed - I felt sick and tired all the time! I am just stressed! That is why I wanted to put this post up. Just to let out alittle steam so I don't have to go visit anyone. Sheesh!

Thanks for letting me vent!

:)


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

It really is hard going gluten-free, especially when it is a family thing, too. My Mom, my Brother, and I all have Celiac Disease. To be honest, our lives would have been MUCH better if we were diagnosed young. Going through school sick is the worst. At least when you know the problem, you can own it as part of your life, share it, and be healthy. There are also plenty of things your kids can have- just gluten-free. There are gluten-free versions of Oreos and birthday cake! You are saving them a lifetime of troubles and lower immune systems. Plus, you are saving yourself from the pain you have been in.

I found support through groups, but mostly this website. You will feel alone for a long time but soon this diet becomes your normal. You find places to eat out and have fun. However, family is a different story. They just don't get it most of the time.

This new lifestyle will take A LOT of time to get used to, but it is well worth it. Good luck and come here often!

Amyleigh0007 Enthusiast

Having your children diagnosed young is a wonderful thing! They will grow up eating foods that are much better for them. Perhaps they will even choose a banana for a snack when the other children choose cupcakes. That is a good thing! Going gluten free now and catching Celiac disease before it can harm them makes you a very responsible parent. My 9 year old son suffered for years and was a very sick little boy until he was diagnosed with Celiac disease. I am more guilty over that then the fact that I passed the Celiac gene on to him. You are blessed that your children will not get deathly ill because you are being proactive and catching the disease before it can cause harm.

You need to keep yourself healthy and stay positive for your children's sake. If they see mom depressed and sad over having to eat gluten free than they will feel that way too. Even if you don't have an ounce of enthusiasm for eating gluten free, fake it for your kids. Pretend it's the healthiest, best way to eat and pretty soon you may start to believe it!

ang1e0251 Contributor

Maybe if your husband and your family could come on the forum and read some things they might understand a little better what you're going through. Have you looked for a support group for celiac disease in your area? I know you'll be moving but even a few meetings with people who know what you're facing can be helpful. Maybe you'll even make some friends who can help you with that packing!

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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,217
    • Most Online (within 30 mins)
      7,748

    Sutto
    Newest Member
    Sutto
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.