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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ElenaM posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      I think I am gluten intolerant

    2. - JulieRe replied to JulieRe's topic in Related Issues & Disorders
      6

      Oral thrush question

    3. - Ceekay replied to slkrav's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Gluten free beer ?

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      6

      Oral thrush question

    5. - Scott Adams replied to oscarbolduc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Advice while waiting for testing


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748

    catsrlife
    Newest Member
    catsrlife
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ElenaM
      Hello everyone. I am Elena and am 38 years old. I suspect I have a gluten intolerance even if my celiac panel is ok. I have the following symptoms : facial flushing, Red dots not bumps în face, bloating abdominal distension, hair loss, depression anxiety even with meds and even bipolar. Fatigue extreme to the point of not being able to work. All of these after I eat gluten. Could I have non celiac gluten sensitivity? Thanks anyone else with these symptoms?
    • JulieRe
      Hi Everyone,  I do appreciate your replies to my original post.   Here is where I am now in this journey.  I am currently seeing a Naturopath.  One thing I did not post before is that I take Esomeprazole for GERD.  My Naturopath believes that the decrease in the gastric acid has allowed the yeast to grow.    She has put me on some digestive enzymes.  She also put me on Zinc, Selenium, B 12, as she felt that I was not absorbing my vitamins. I am about 5 weeks into this treatment, and I am feeling better. I did not have any trouble taking the Fluconazole.  
    • Ceekay
      I'm sure it's chemically perfect. Most of them taste lousy!        
    • Rejoicephd
      Hi @JulieRe.  I just found your post.  It seems that I am also experiencing thrush, and my doctor believes that I have fungal overgrowth in my gut, which is most likely candida.  I'm seeing my GI doctor next week, so I'm hoping she can diagnose and confirm this and then give me an antifungal treatment.  In the meantime, I have been working with a functional medicine doctor, doing a candida cleanse and taking vitamins. It's already helping to make me feel better (with some ups and downs, of course), so I do think the yeast is definitely a problem for me on top of my celiac disease and I'm hoping my GI doctor can look into this a bit further.  So, how about you?  Did the candida come back, or is it still gone following your fluconazole treatment?  Also, was it awful to take fluconazole?  I understand that taking an antifungal can cause a reaction that sometimes makes people feel sick while they're taking it.  I hope you're doing better still !
    • Scott Adams
      I'm so sorry you're going through this—the "gluten challenge" is notoriously brutal, and it's awful to deliberately make yourself sick when you've already found the answer. For the joint pain, many people find that over-the-counter anti-inflammatories like ibuprofen can help take the edge off, and using heating pads or warm baths can provide some direct relief for the aches. For the digestive misery, stick to simple, easy-to-digest foods (like plain rice, bananas, and bone broth) and drink plenty of water and electrolytes to stay hydrated. It feels like the longest month ever, but you are doing the right thing to get a clear diagnosis, which can be crucial for your long-term health and getting the proper care. Hang in there; you can get through this! This article, and the comments below it, may be helpful:    
×
×
  • 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.