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

Healing Timeline: Is This Back And Forth Normal?

margotb

By margotb
in Coping with Celiac Disease

Recommended Posts

margotb Rookie
margotb
Posted

Hello everyone. I know that everyone's healing process is different, but I just wanted to ask and get a sense of how I am doing compared to others.

I did my biopsy after a six-week gluten challenge March 28. The biopsy revealed moderate to severe intestinal damage. During the last four weeks of my gluten challenge I felt horrible: very low energy, persistent colds (one after the other), muscle aches, and so on.

Now it's been almost a month since I have been gluten-free again. I have had about 5 or 6 good days when I felt good energy and the ability to exercise and generally not feel like I have to put in a huge effort to shower, dress, and get out there and participate in life.

But then after the good days I have bad days again. A cold comes back. I wake up feeling so exhausted. I am nervous that I am glutening myself unknowingly, but also unsure about whether this is the healing process and maybe it's a step forward, a step back for a while.

I guess no one knows for sure whether the ups and downs are the ups and downs of healing or whether it is the result of accidental glutening (since it can be so hard to know about gluten), but curious about your experiences with the healing process.

(By contrast, I went off gluten for 2.5 months after my blood test and I think I felt better within about 2-3 weeks and didn't feel quite as many relapses. But maybe this extra gluten challenge damaged me so it will take more time to recover.)

Thoughts?

Thank you in advance!

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

I can't answer that question for you but I will say some people feel good almost instantly while others are still healing after two years.We all are very different.There ups & downs for many... Think of it this way:it took years of food abuse to your body so it could take years to heal al lthe damage. Be patient. Also asyou become more in tune with what your body is telling you, you may find that other foods bother you & you never noticed before.Nightshades are big problems for many. Along with soy products.( products with soy additives ...some react to corn as it seems we gluten-free people tend to go to corn products...it becomes an elimination diet to find out what gives us grief.

Hopeyou feel better soon

srall Contributor
srall
Posted

I agree with above poster. I found many more food sensitivities, esp. corn. I'm a year in and I still have bad days (like today). Don't know if I ate something or it's just still part of the healing. It is frustrating. I think a month in is pretty new, esp with that diagnosis.

Archived

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

Go to topic listing
  • 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

    • Liquid lunch
      Medicinal mushrooms 🍄

      By Liquid lunch · Posted

      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
      Endoscopy

      By Scott Adams · Posted

      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
      Biopsy results after 1,5 gfd

      By Scott Adams · Posted

      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
    • Scott Adams
      Help with results

      By Scott Adams · Posted

      Your symptoms—headaches, dizziness, nausea, irregular bowel movements, anemia, and menstrual changes—along with a family history of celiac disease, strongly suggest celiac disease could be the cause. The mild duodenal changes seen in your biopsy are consistent with early or mild celiac disease, though they could also be due to other factors. The improvement in bowel movements after cutting out gluten is a positive sign, but other symptoms like headaches and dizziness may take longer to resolve as your body heals. It’s important to continue a strict gluten-free diet and discuss further testing, such as celiac antibody blood tests or a follow-up biopsy, with your doctor to confirm the diagnosis. Many people experience a gradual improvement in symptoms over weeks to months, so patience and strict adherence to the diet are key. You’re not alone in this process, and support from celiac communities can be very helpful. 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
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Scott Adams · Posted

      For people with celiac disease and corn intolerance, most salts, including table salt with dextrose, are generally safe in small amounts, as the dextrose is typically highly processed and unlikely to contain problematic corn proteins. However, if you’re highly sensitive, you might consider switching to pure kosher or Himalayan salt, which don’t contain additives. While bringing your own salt to restaurants or avoiding seasoned foods can feel overwhelming, it’s a practical step if you’re concerned. Many people with corn intolerance tolerate trace amounts of dextrose in salt without issues, but individual sensitivity varies. If your current salt isn’t causing symptoms, it’s likely fine to continue using it, especially given your financial constraints and the challenges of managing dietary restrictions. Focus on what works for you and prioritize avoiding larger sources of corn, like cornstarch.
×
×
  • Create New...