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

Apparently I need support

Sick, Tired, and Broken

Recommended Posts

Sick, Tired, and Broken Newbie
Sick, Tired, and Broken
Posted

Hi everyone,

I came across this site to find out if celiacs become bedridden as I was. I was extremely ill for 5 years, and relatively ill the 5 before that. I've never been diagnosed with celiac, but am convinced I have it. I'm gluten free, but also realized I get very ill from corn and nearly every other grain except rice. I'm out for at least a week if I'm exposed. 

Reading that I'm not the only person going through this yo-yo experience of being exposed to something hit me like a ton of bricks. I've been so alone, so completely traumatized, so misunderstood, so out of control of my body. It's just really nice to find people that understand why I can't emotionally get over this, even though I'm now through the worst of it.

The devastation on my ability to think clearly, my relationships, feelings of safety and independence, finances, happiness, virtually every aspect of my life--it's very difficult for most to understand the extent of my trauma.

Can someone please chime in and let me know what you went through?

 

thanks.

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

Celiac.com Sponsor (A8-M):


weluvgators Explorer
weluvgators
Posted

You are not alone!  Gluten intolerance and celiac disease can affect us each in different ways, but there are many similarities amongst groups of us - maybe genetic similarities?  The fact that it is known to attack organs, and many have been implicated in different people, is just astounding to me - yet getting people to relate to its severity can be so difficult.  It seems that it can be hard to comprehend when you haven't suffered personally.  I was not bedridden when we figured things out, but there are several (and many that I have met along the way) that were bedridden at times due to this condition.  Hopefully as awareness of gluten issues grows, fewer will have to be bedridden before the gluten free recommendation and support are provided.

Sometimes the social cutoff seemed the hardest part of it all.  Just when you find yourself in need of help and support, you find it difficult to explain to others how to best help you . . . and not make you worse!  It can be very hard.  I found really wonderful help from the Super Sensitive crowd and those that have adopted a Gluten Contamination Elimination Diet - I think that is similar/same as the "Fasano" diet.  We are managing gluten issues in our family of five, so we have the benefit of having each other.  But it is hard.  There is a lot of medical stuff to sort through, and food sourcing and processing is a demanding task.  We have been at this for over 9 years, and we continually learn more.  Reaching out to others in the celiac and gluten free communities is really helpful.  I really enjoyed when I was able to meet with other gluten free people in my community too.  Look for a local support group, or find someone in your community that wants to start one!  When we lived in Illinois, we found a chiropractor and a group of her patients that was able to start a support group.  It was such a blessing!  Good luck in your journey, and thanks for reaching out to us.  My family enjoys meeting and hearing from others that can relate to our struggles!!

ravenwoodglass Mentor
ravenwoodglass
Posted

(((((((((((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))

Welcome to the board. We understand and many have been down the same long road.

Have you had your vitamin and mineral panels run? It would be a good idea if you can. Sometimes some sublingual B12 can help with the brain fog. It is worth a try if you don't take it already.

I don't have a lot of time so will have to make this short. Do be sure to read the Newbie thread at the top of the Coping section as it has a lot of valuable info.

I hope you are feeling much better soon.

Momma2PirateNPrincess Rookie
Momma2PirateNPrincess
Posted

Hang in there!!!! 

I've only been gluten-free for 15 days. I have no idea if I have celiac (had gluten sensitivity diagnosed via saliva which I know isn't the best way to test). I've never had many symptoms until 5 months ago when dizziness, anxiety attacks, fatigue, weight loss and insomnia hit out of nowhere. I pretty much stopped driving and going in public. After months of being in and out of the Drs office, ER and always being told it's just anxiety I found a functional dr. I'm still not doing much better and not 100% sure the issues were totally gluten related but it's still too soon to tell! I have good days and many bad. So just know you're not alone!!!  Don't give up and keep looking for answers! Sending hugs your way!!!

Archived

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

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


  • Member Statistics

    • Total Members
      131,670
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.