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. - Russ H replied to Ginger38's topic in Related Issues & Disorders
      27

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,707
    • Most Online (within 30 mins)
      7,748

    Ben Cohen
    Newest Member
    Ben Cohen
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      Shingles vaccination also provides some protection against dementia: https://www.nihr.ac.uk/news/major-study-finds-new-shingles-vaccine-could-lower-risk-dementia
    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
×
×
  • 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.