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

Anyone Ever Feel Like Giving Up?


Gfresh404

Recommended Posts

domesticactivist Collaborator

It makes perfect sense that you are having a hard time... you are trying your best to do what you need to do for your health, yet you still feel like crap! Anyone, especially when dealing with depression or other mood disorders is going to feel bad.

We noticed that just being gluten-free was not enough for our family. GAPS made a big difference for us, and addressed the mental health side of the issues. You might look into it. (I have a GAPS Resources page on the blog linked from my profile). It may seem impractical to do in college, but actually if you have a crock pot, a freezer & fridge, a hot plate, a sink, and a cupboard or counter space, it's doable.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I feel like giving up too.

My Dr. questions my DX because I'm newly DXed at the age of 54. She said it should have shown up sooner if I really have it. I said I thought I had a soy sensitivity too, because I get all sorts of neuro symptoms if I ingest it. She said "soy can't do that".

My blood work was negative, but biopsy showed flattened villi and a couple of ulcerations.

I asked her for a Hashi's test because I seem to have a lot of symptoms, and she said no. She did agree to testing my TSH level though. I won't find out the results until I go back in 2 months.

My GI doesn't seem to know much about Celiac? She ordered blood tests for vitamin/mineral levels and they weren't too bad at that time. She told me to just not eat gluten and I'd be fine. When I asked about my damage and the Marsh scale she didn't know what I was talking about.

I feel tired, depressed, hopeless. On Satarday night I talked to my son on the phone and he suggested I contact the various treatment centers and see if they could recommend an experienced Dr. in my area. I told my hubby I thought I should try it. On Sunday morning I logged onto the computer to check emails, etc. Hubby came into the room and asked if I had contacted the places yet. I told him I had just logged on and hadn't even made coffee yet. He yelled at me that I wasn't trying to do anything to help myself and that I'm just a whiner..went on and on. :(

I am always vigilant about making sure I'm not consuming even traces of gluten, but my hubby and son still eat it. Neither one is the least bit careful about trying to keep it contained.

I picked up the TV remote and it was covered with bright orange powder from cheese curls they had been eating. When I told them they keep poisoning me they told me I was rediculous.

I feel like crap, and I'm tired. I don't want to eat..in fact I've gotten so I'm afraid to eat.

I'm taking a handful of vitamins/minerals every day and use melatonin to sleep.

Sometimes I think I should just stop eating/taking anything..and let nature take it's course.

I wish you were here in front of me so I could give you a hug. I'm sorry your DH is being so difficult. He should be trying to help you. Get a plastic baggie and put it over that remote. That will make it easy to clean when they get their contaminated hands all over it. This disease is hard enough to deal with by itself but when we don't have our loved ones support it makes it even harder.

Gfresh404 Enthusiast

I feel like giving up too.

My Dr. questions my DX because I'm newly DXed at the age of 54. She said it should have shown up sooner if I really have it. I said I thought I had a soy sensitivity too, because I get all sorts of neuro symptoms if I ingest it. She said "soy can't do that".

My blood work was negative, but biopsy showed flattened villi and a couple of ulcerations.

I asked her for a Hashi's test because I seem to have a lot of symptoms, and she said no. She did agree to testing my TSH level though. I won't find out the results until I go back in 2 months.

My GI doesn't seem to know much about Celiac? She ordered blood tests for vitamin/mineral levels and they weren't too bad at that time. She told me to just not eat gluten and I'd be fine. When I asked about my damage and the Marsh scale she didn't know what I was talking about.

I feel tired, depressed, hopeless. On Satarday night I talked to my son on the phone and he suggested I contact the various treatment centers and see if they could recommend an experienced Dr. in my area. I told my hubby I thought I should try it. On Sunday morning I logged onto the computer to check emails, etc. Hubby came into the room and asked if I had contacted the places yet. I told him I had just logged on and hadn't even made coffee yet. He yelled at me that I wasn't trying to do anything to help myself and that I'm just a whiner..went on and on. :(

I am always vigilant about making sure I'm not consuming even traces of gluten, but my hubby and son still eat it. Neither one is the least bit careful about trying to keep it contained.

I picked up the TV remote and it was covered with bright orange powder from cheese curls they had been eating. When I told them they keep poisoning me they told me I was rediculous.

I feel like crap, and I'm tired. I don't want to eat..in fact I've gotten so I'm afraid to eat.

I'm taking a handful of vitamins/minerals every day and use melatonin to sleep.

Sometimes I think I should just stop eating/taking anything..and let nature take it's course.

I feel ya - definitely get a new Doctor. And I would just try to explain to your Husband and Child how truly sensitive an individual can be to something. Some of my relatives thought I was nuts too when I tried to explain to them about cross-contamination. It's definitely a frustrating conversation because you don't want to be a jerk about it, but at the same time you definitely don't want to get sick. Just try to have patience and consider looking at it from their perspective. Just remember you can only control your actions - you can't control anyone else's. Hang in there, I'm sure things will get better, change is never easy.

Bubba's Mom Enthusiast

Thanks so much for understang..and for your support.

I met with a dietician that usually counsels diabetic patients. She had a lot of mis-information and didn't know the answers to some of my questions. She told me to just eat the gluten free verasions of the foods I had to give up..and Bob's Red Mill was highly recommended.

I explained the 20ppm allowed in gluten-free and how it can add up. Whole foods are best, especially at first.

I told her lots of people have problems with BRM products having cc. I explained to her why it would matter if shampoo and cosmetics contain gluten and she copied the list of those ingredients for her file. I liked her, she was just not very helpful.

I asked her if she knew any Dr.s experienced with treating Celiac, and a friend of hers is one, but isn't covered by my insurance.

I know it was an imposition, but I sent her a note asking her if she could ask her friend if he knows of any other Docs..in the hopes I can find one in my insurance plan.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Beverage
      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
×
×
  • 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.