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

Another question about recovery time. Need some reassurance!

Maddiecl

Recommended Posts

Maddiecl Explorer
Maddiecl
Posted

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Most forum members will tell you that recovery can take up to a year or longer.  I think, in theory, the villi can rejuvenate themselves within weeks.  But it takes time for systemic issues to resolve and time to learn the gluten free diet.  I think doctors tend to forget that celiac disease goes beyond the gut.   It is not uncommon for antibodies found in the bloodstream up to a year or more later.  So, you are doing just fine!  Be patient (so hard, I know).  

selectivefocus Enthusiast
selectivefocus
Posted
8 hours ago, Maddiecl said:

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

 

 

I've been gluten free 13 months.  Many of my issues have resolved, but I've gained a lot of other food issues in the wake of eliminating gluten because my gut was so damaged and my immune system was so overactive. My daughters have now joined me in this awful club. It takes a long time. I'd say in the first month my DH on my hands disappeared and my liver and spleen stopped hurting.  But I'm still healing. 

Millerbabe Newbie
Millerbabe
Posted
8 hours ago, Maddiecl said:

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

 

 

I would like to say once you stick to a decent diet that works for you it will get so much better. Feel better and not gassy . I stopped eating dairy and peanuts. I follow a blood type diet. Lifestyle change not a diet..

 

Maddiecl Explorer
Maddiecl
Posted
  • Author

Thank you all for the replies! I really appreciate it!

Archived

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

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


  • Member Statistics

    • Total Members
      127,925
    • Most Online (within 30 mins)
      7,748
    LJ11
    Newest Member
    LJ11
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Confused with test results

      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      Water filters and gluten

      By MaryMJ · Posted

      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      What should I do with these test results?

      By trents · Posted

      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
×
×
  • Create New...