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

Your Bowels Are Like Berlin Post War


alesusy

Recommended Posts

alesusy Explorer

That's what my Gastro doctor told me today when I complained that three months and a half gluten-free, I still have- often -  bad or very bad days. "Three months is nothing. You haven't even started rebuilding yet, you're just moving out the ruins" he said.

 

He also said I might have other problems apart from celiac, of course, but we cannot start understanting if I do nor sorting them out until my gut is better (including testing for other allergies). And that the key word is Patience. And that I certainly have to eat simple things, avoid processed foods and anything which patently does not agree with me, and that I have to eat in a good way if possible - not wolfing my food down nor eating in front of my computer if possible and most certainly not having dinner just before going to bed because that's super work for my feeble gut just when he would like to go to sleep as well (it's definitely a "he" for me), so that obviously I'm getting up tired in the morning. And that possibly some of my problems might not go away, and then we'll have to investigate why, but we cannot do that before my villis are back to normal.

 

And that in his experience, for an adult, it might take anything from six months to 3 years, but more often between 12 to 18 months. Besides, he said, we don't know how long you've been celiac - how long the condition has worked, that is - before I started having symptoms: it might be some months, it might be several years. Basically, having destroyed villis (I'm classified as a 3-B) does not enable us to understand in how bad a shape my gut actually is.

 

As you all always say to newbies: hang in there, it will get better. I'm hanging, guys... I just wanted to share all this with you. I particularly liked the metaphore:-). He also said something about having to rebuild the Berlin Wall (to stop the leaky gut) and I didn't make him notice that he was mixing up his historical periods... It's hard to be patient, but in a way, it's nice to know that it just takes time.

 

(he also said that yes, it is possible that someone might be sensitive to gluten under 20 parts per million, in rare cases, but that if I'm having allergic reactions it is more probably to something else but that's hard to sort out until my gut feels better. So I'll keep my food diary and eliminate everything which looks suspect. It' going to be a long road, babies...)

 

a.


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



Celiac.com Sponsor (A8-M):



GFreeMO Proficient

Thanks!  That is exactly what I needed to hear today.  

Celiac Mindwarp Community Regular

Smart Doctor. I am a fan of the mixed metaphor. I especially like to get hold of wrong end of the stick and proceed to beat about the bush with it. Luckily you doc doesn't.

Good luck with healing (not sure if I can squeeze a reunification reference in here)

Mw

Weeber47 Newbie

I appreciate this post. I've only been gluten free completely for just over a month, and I feel the same with only a little added energy. On particularly bad days I wonder if I have been glutened or if I am doing wrong. I have another doctors appointment next week and was going to bring that up, but this helped me realize this might take time. I guess I am just a little impatient.

CaliSparrow Collaborator

Excellent post! Thank you for passing on your doctor's advice. He sounds like a knowledgeable doctor. Waiting to confirm the unknowns until after healing is wise and I'm going to heed his advice. It seems very sound.

Cali

*corrected misspelling ;)

alesusy Explorer

What I'm trying to do is:

I keep a food diary

I don't drink alcohol at all (if I'm out with friends I might try a quarter of a glass but no more than that)

I have almost entirely eliminated coffee and tea, but also Coca Cola and drink orange juice for breakfast

I'm trying to have very little processed food, I bake my own bread and muffins

Non gluten pasta in limited quantities, quinoa rice etc

Lots of fresh fruit and vegetables, simple protein food (chicken, beef, fish; parmesan cheese on pasta because I'm lactose intolerant - for now? - but parmesan when seasoned has no lactose)

No dairy (I'm intolerant)

 

In restaurants I explain everything and typycally eat grilled meat and roasted potatoes, maybe some of my own bread

Travelling is the worse because I do bring stuff with me but it must be processed food (crackers and the like) and I have to rely on apples and bananas....

 

alessandra

dsr1 Newbie

Thanks for the info alesusy.

I have been on a gluten free diet for 21 months and thought I had 'cracked it' but for the last 9 months my old symptons have returned. My life once again revolves around the nearest loo! This forum is a blessing as I have learned more about my condition from fellow sufferers than any visit to my local doctor here in the UK.

David


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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      13

      My only proof

    2. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

    3. - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,401
    • Most Online (within 30 mins)
      7,748

    DLPen
    Newest Member
    DLPen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
×
×
  • 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.