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

It's Just Stress...or Fibromyalgia...or...

Brattitude

Recommended Posts

Brattitude Newbie
Brattitude
Posted

These are the conversations I have had with my doctor for a couple of years now. The most recent is fibromyalgia because the blood tests came back negative for rheumatoid arthritis. After talking with a co-worker and disclosing that I am definitely allergic to malt, she said I should look into gluten being the problem. I then did some research and ended up having 90% of the symptoms listed.

Why has nobody ever brought this up as a possibility before? I have been scuttled from one specialist to the next with all of them telling me there is definitely something wrong but they don't know what because all of the tests have come back perfectly normal.

I have been gluten-free (as best as I can tell) for 4.5 days and I am already less tired and I haven't had a headache in 2 days (a record).

In a strange way I was hoping I wouldn't feel better because the diet is so difficult, so I'm having mixed feelings about feeling better.

I guess I'll just keep going on the diet and see how things progress. It's nice to see I'm not entirely crazy though (or alone).

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

Celiac.com Sponsor (A8-M):


mom2one Newbie
mom2one
Posted

I could of wrote that post, I am so confused and just trying to process this all. I am sure someone here can help you and point you in the right direction.

I wish you luck, and I too have been feeling better and having more energy as well.

ravenwoodglass Mentor
ravenwoodglass
Posted

Why has it not been brought up before? Because doctors are clueless about anything that is not relieved by a prescription. I suffered for almost all my life. I told doctors as a child that eating made me feel bad but only got tested for diabetes, over and over and over and over. Once I was almost dead doctors finally thought to test for celiac but because I am one of the 'lucky' 30% who don't show up positive in blood tests the diet was never even mentioned.

The diet is difficult at first but it is doable, especially once you start to feel the results. For me the diet was a miracle and after I got through the first couple of weeks of withdrawl the benefits I have gotten have given me a new life. Too bad it took 40 + years to diagnose me, my life and my childrens would have been so different if I had been diagnosed promptly.

healthygirl Contributor
healthygirl
Posted

What I found, and I think others have as well, is that when you go off the gluten free diet you feel so lousy with the return of symptoms , that you can't wait to go back to gluten free. There are so many great gluten free products out there, it is just a matter of sourcing the stores in your area that carry the products and figuring out which products you like. As well, I look at it as a reason to eat healthier. It gives you the opportunity to eat more whole foods (fresh cuts of meat, fresh fruit and veggies and I love rice and sweet potatoes). I know when you are dealing with all the fatigue, the thought of even starting to figure out what to cook let alone starting into cooking meals from scratch is overwhelming, but as you start to feel better try to set aside some time to experiment with your meals. Good luck!!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    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
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @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
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      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
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      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
      My only proof

      By Scott Adams · Posted

      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
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      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.