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

New Set Of Problems


HeatherPK

Recommended Posts

HeatherPK Newbie

As part of ongoing autoimmune health issues - I was diagnosed as coeliac last year. I had already been told I had an autoimmune liver disease which to be honest took precidence in my mind as to its seriousness and I sort of passed off the gluten issue - so I'd give up bread was my immediate thought! However, just before christmas I had alot of problems that were obviously down to me not taking my diet seriously and I was getting worse - so I reluctantly started gluten free eating and I was amazed how much better I felt and quickly. My most obvious symtoms - chronic bloating, stomach pains and diarreah eased within a week. But my issue now - several months on - is I have developed a cycle of constipation now - my system shuts down for almost a week - and then I spend nearly a whole day in the loo - only then to swing back the other way. I now feel weakened by this - I find to take things to help with the problem like lactulose for eg just causes a reoccurance of diarreah once my system decides to actually work - I thought maybe it might be just my system readjusting - i just feel miserable having worked hard to stick to a gluten free diet and now getting new problems which I don't seem to have much control over

any advice gratefully received - I'm a vegetarian and have an autoimmune liver disease called PBC so I am compromised in taking supplements

thank you for listening - Heather


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Are still eating/drinking dairy? Are you using a lot of soy? Either one could be causing your problems. You may be intolerant to dairy and/or soy as well as gluten.

YoloGx Rookie
As part of ongoing autoimmune health issues - I was diagnosed as coeliac last year. I had already been told I had an autoimmune liver disease which to be honest took precidence in my mind as to its seriousness and I sort of passed off the gluten issue - so I'd give up bread was my immediate thought! However, just before christmas I had alot of problems that were obviously down to me not taking my diet seriously and I was getting worse - so I reluctantly started gluten free eating and I was amazed how much better I felt and quickly. My most obvious symtoms - chronic bloating, stomach pains and diarreah eased within a week. But my issue now - several months on - is I have developed a cycle of constipation now - my system shuts down for almost a week - and then I spend nearly a whole day in the loo - only then to swing back the other way. I now feel weakened by this - I find to take things to help with the problem like lactulose for eg just causes a reoccurance of diarreah once my system decides to actually work - I thought maybe it might be just my system readjusting - i just feel miserable having worked hard to stick to a gluten free diet and now getting new problems which I don't seem to have much control over

any advice gratefully received - I'm a vegetarian and have an autoimmune liver disease called PBC so I am compromised in taking supplements

thank you for listening - Heather

I suggest taking some herbs. The best for this I think are the soothing herbs marshmallow root and/or slippery elm. Caps are the easiest however you can also cook them up.

The slippery elm in particular is gloppy but healing. Put a tablespoon or two in small amount of water and mix til smooth. Then add a cup or two of water. Whisk with a wire whisk or egg beater. Cook 10 miuntes on a low boil, stirring every once in a while.

I need to do this myself I think when I react to trace glutenings. It may be you too are having some kind of cross contamination gluten issues. This can be ruinous as it has been for me. Bear with it and try the above soothing herbs and somehow try to calm down the nerves.

I went to see an acupuncturist and she really helped by the way. Just wish I had enough money to see her more frequently.

I also think meditation helps to calm and strengthen the nervous system. Skullcap, chamomile, rosemary and lavender can also help restore the nerves too. I thiknk the nerves are always involved when one has a immune system reaction.

With your liver situation you really might consider detox herbs such as dandelion root or milk thistle, yellow dock or Oregon grape root, one week on and one week off. When you are up to it saunas are great.

Mud packs too on the feet and hands will pull out toxins so your liver doesn't get trashed. You should add a little vinegar or lemon juice to the bentonite when you are making a paste with water. Just leave on for 15 minutes; don't do this more than every other day.

Also, like was just suggested by the previous poster, avoid any milk products for now and consider avoiding soy. They often cause these kind of problems at first--and create a food and reaction diary so you can determine what its what. With a veg diet you should find out what you are and aren't sensitive to. I had to go off it myself because I was allergic to most vegetarian forms of protein for instance. Everyone is different however. But a fast or simple diet at first with just vegetables you don't normally eat and slowly add things in every two days or so can help determine what is what.

Exercise really helps quite a lot too when you are up to it. Again start with the yoga and stretching, graduate to walks and then start little weights before doing anything more strenuous.

You also might have a case of fungus and/or candida. Let us know if you do or not and I will make some more suggestions.

I believe the herbs for me at least along with diet helped me the most. And certainly if bought in bulk by a safe supplier they are very inexpensive and safe for most people although there are those that have difficulty with them too like with anything.

I have considered homeopathy but if you go that route avoid anything with alcohol in it. If you have a lactose sensitivity that could be a problem with their pastilles. However you might be able to work with a homeopath to get past this with some alternative water based homeopathic remedies.

Good luck! I have had many similar problems and yet did get through it.

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. - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    2. - trents replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

    4. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

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

    • Total Members
      133,621
    • Most Online (within 30 mins)
      7,748

    vikkigoe
    Newest Member
    vikkigoe
    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

    • Florence Lillian
      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    • trents
      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    • knitty kitty
      @HectorConvector, Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.   I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.   Please Read... Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein https://pubmed.ncbi.nlm.nih.gov/40859220/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • Scott Adams
      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
×
×
  • 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.