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 At This And Coping With Doubts, Second Thoughts And Increased Stomach Pain...


Mica

Recommended Posts

Mica Rookie

I tested through Enterolab and was found to have elevated IGA antibodies at 12 with less than 10 being normal, my TTG levels were normal but I also have one of the main celiac genes and a gluten sensitivity gene as well. I immediately went gluten free. But then a few days later my doctor asked me to visit a gastroenterologist with her group for further testing. I, however, had to return to eating gluten to test with him. I refused the appointment and continued eating gluten free, telling myself that the Enterolab results, along with my frequent constipation, heartburn, flatulence, eczema, hives and hypothyroidism were enough.

Two weeks later....I started having doubts and caved! I went back to eating gluten with the intention of scheduling an appointment with the gastroenterologist. I ate normally for 2 weeks and realized how bad I felt!!!

Frequent headaches, flatulence, constipation and stomach pain which I can only describe as feeling like my insides were swollen. It seems like I became much more sensitive to gluten after just 2 weeks of eliminating it from my diet. Is this possible? I am starting to feel like my mind is playing tricks on me.

I am gluten free again for 2 days now...but I worry about more doubts in the future.

Sincerely,

Mica


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



Celiac.com Sponsor (A8-M):



firegazing Newbie
It seems like I became much more sensitive to gluten after just 2 weeks of eliminating it from my diet. Is this possible? I am starting to feel like my mind is playing tricks on me.

I'm not diagnosed, but yes--I think this is completely possible!

I spent 2 months gluten-free and when I started to eat gluten again, I got sick like you wouldn't believe! Nausea, diarrhea, hands and feet so swollen I couldn't walk or make a fist, strange rashes, intense brain-fog, and so on.

If you feel that you need a doctor's confirmation in order to believe in yourself, maybe it is a good idea to go ahead and gluten yourself up again so that you can get a diagnosis. That's what I'm trying to do right now. I want objective evidence of my troubles.

ShayFL Enthusiast

It sounds like you have your answer. But if you think you will live in "doubt" forever even though you are feeling better, then gluten up and get tested.

Lockheed Apprentice

Okay I always refer to the frog in boiling water situation. I don't think you actually become more sensitive so to speak but your body has a more noticeable reaction for several reasons: 1) your immune system is no longer suppressed on a daily basis by the offending agent, so it is functioning better and can give a better reaction to attack and remove toxins from the body 2) because you now know what it feels like to feel well, you really notice when you feel bad. Like a frog if you slowly turn the heat up he'll sit in the water and boil to death, but if you throw a frog in hot water he'll fight to stay alive.

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. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

    2. - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

    3. - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

    4. - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

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

    • Total Members
      133,633
    • Most Online (within 30 mins)
      7,748

    envydaddy
    Newest Member
    envydaddy
    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

    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   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://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
    • 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
×
×
  • 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.