Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

New Here, My Journey


AVR1962

Recommended Posts

AVR1962 Collaborator

In Nov '10 I started a herbal detox. I had been so tired, took a class about increasing metabolism and this product was being sold. 2 months into taking this mixed herb supplement I started getting REALLY sick. Ended up in ER with chest pains, heart palpitations and my blood pressure was high. Docs found nothing wrong, sent me for a stress test on my heart and wanted me to make an appt with GYN to see if any of this was related to female symptoms or menopause, I'm 48. Clean bill of health.

Meantime I was getting sicker. 2 weeks later I connected this to the supplement and went off. Doc told me it could take up to 3 months for this to completely leave my system. I was sick, sick, sick. My gallbladder, pancreas, spleen and kidneys swelled. My stomach felt like like it was raw and acid was being continually poured in. I was off-balance, extrememly forgetful, vision blurred (depth perception off). I thought I was losing my mind.

Tons of labs tests were done, they tested me for what seemed like everything under the sun, everything was negative. A family member heard my stomach one day and suggested that I try going off wheat for just 10 days and I did. What did I have to lose at this point! I actually went 3 weeks then tried bread, had a reaction. Then tried pasta and had a reaction. Told doc what I found and he then tested me for Celiac. Not knowing anything about this at the time, I realize (now) he tested me after I had restricted my gluten intake, test came back negative. While I was getting better in this time.....burning in stomach went away, I was still off-balance, my vision was blurred, and still having alot of trouble with memory.

Went to Gastro, he decided he wanted to explore the gluten intolerance more, wanted to retest me for Celiacs. All this had gone on for 4 months at this point. Every day I was off balance and struggling with memory. I was having muscle spams and twitches. Doc said that if I was having a reaction to glutens it could be possible for my minerals to be deficent and causing my twitches and spams. I started eating potassium rich foods and started taking B6, B12, zinc, magnesium and a probiotic. All of that helped. Then he wanted me to go off dairy and start loading on glutens with plans to retest me for Celiacs in 2 months.

The day after I was back on glutens I became sick all over again and as I continued I was becoming more and more sick. The burning in the stomach returned, I was bad. Day 12 I went back to Gastro and told him what was going on, asked him the importance of this test and then decided I had to go off glutens without going thru with the testing as he wanted me to continue this for 6 more weeks and I could not do it. 24 hours after being off glutens my stomach stopped burning.

This is only the second day off glutens right now. I have continued with my mineral intake. And each morning I have been taking an anti-inflamitory which has helped my vision, memory, and balance issues. They are still there but I am hoping that as my system heals these symtoms will go away too.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,203
    • Most Online (within 30 mins)
      7,748

    Barbara 1981
    Newest Member
    Barbara 1981
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • trents
      Jason, I have a bone to pick with your terminology. There is "gluten intolerance" which I believe is synonymous with celiac disease and then there is "gluten sensitivity" which comes from Non Celiac Gluten Sensitivity or NCGS for short. It is true, however, that there is still a lot of inconsistency in the use of these terms.
    • Liquid lunch
      I can’t say this will work for everyone but for me the difference is incredible so might be worth trying. I’ve never been diagnosed celiac but via an elimination diet I realised I can’t eat any lectins, gluten soy and oats are particularly problematic. If I eat them I’m in bed for a week, then heavy bleeding and extreme pain for another, followed by a third week of bleeding on and off. My skin was a mess and it snowed when I brushed my hair. Since taking reishi and cordyceps mushroom tincture I can’t believe the difference, I’ve had a lot of help from this site so I want to return the favour. I took the tincture for my guts but the most apparent effect is that I feel like my brain works again, I can’t begin to describe how wonderful it is to be able to achieve basic things, I’ve barely been able to organise getting out of bed for so long, it feels like I haven’t been hit over the head with a mallet for the first time in years. Then I glutened myself, not necessarily gluten as so many things wipe me out but definitely ate something I shouldn’t have, I took a treble dose of the tincture and almost immediately felt much better so continued with the increased dose and three days (not weeks) later was back to feeling great, no bleeding involved. My skin is better than I can remember it ever being, I feel great 😊. I spend £1.50 a day on these but it’s worth every penny, I hope this helps someone else out there reading this. I wish I’d known about them 20 years ago. best wishes everyone 🍄 
    • Scott Adams
      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
×
×
  • Create New...