Jump to content
  • 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):

New Here - Need A Little Advice.


Kamagrian

Recommended Posts

Kamagrian Newbie

Hi there,

It's my first post here, and I may not even be welcome or belong! Apologies if this is the case. :-)

First, a little medical history! I'm female, in my late 30s, and have had an "interesting" variety of medical issues in the last few years. These include two episodes of severe acute pancreatitis (no reason found), a few episodes of gastritis and oesophagitis including one serious enough to land me in hospital, and so on. After several unpleasant attacks of abdominal pain, sudden urgent need for the loo (sorry if that's TMI!) and some mucus/blood, I had a colonoscopy a few months ago which showed minor inflammation and led to a diagnosis of severe IBS, but nothing more worrying. Incidentally, I also have fibromyalgia and have suffered from depression at various points.

After the diagnosis, I started to pay more attention to which foods seemed to affect me. I noticed most obviously that if I have toast or other bread-type stuff for breakfast, I get lower abdominal cramps, stomach ache and at least mild diarrhoea, all starting within an hour of eating, followed by exhaustion. I love and even crave bread, so this isn't good!

This morning I decided to do the BioCard test, which came up negative. Given that it purports to be 93% accurate, I'm therefore presuming that I don't have Coeliac Disease - I'd been a little concerned because autoimmune problems (Crohn's Disease, hypothyroid disease) run in my family.

So I suppose the question, after all that long-windedness (sorry!) is: where do I go from here? Given that I'm not Coeliac, so that's not what's causing my pain, bloating and other unsavoury digestive symptoms, I'm not sure what to do best to help myself. I don't believe in cutting out food groups without established cause (I hate fad diets, and so on), but I can't afford the York test, don't wish to come across as a hypochondriac to my doctors and can't go on feeling so gut-sore.

Any advice or information gratefully received!

Gill x

EDIT: Given the stuff I just read casting some doubt on the York tests, maybe it's a good thing I didn't have the money, anyway! ;-)


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



Celiac.com Sponsor (A8-M):



jmrogers31 Contributor

Hi there,

It's my first post here, and I may not even be welcome or belong! Apologies if this is the case. :-)

First, a little medical history! I'm female, in my late 30s, and have had an "interesting" variety of medical issues in the last few years. These include two episodes of severe acute pancreatitis (no reason found), a few episodes of gastritis and oesophagitis including one serious enough to land me in hospital, and so on. After several unpleasant attacks of abdominal pain, sudden urgent need for the loo (sorry if that's TMI!) and some mucus/blood, I had a colonoscopy a few months ago which showed minor inflammation and led to a diagnosis of severe IBS, but nothing more worrying. Incidentally, I also have fibromyalgia and have suffered from depression at various points.

After the diagnosis, I started to pay more attention to which foods seemed to affect me. I noticed most obviously that if I have toast or other bread-type stuff for breakfast, I get lower abdominal cramps, stomach ache and at least mild diarrhoea, all starting within an hour of eating, followed by exhaustion. I love and even crave bread, so this isn't good!

This morning I decided to do the BioCard test, which came up negative. Given that it purports to be 93% accurate, I'm therefore presuming that I don't have Coeliac Disease - I'd been a little concerned because autoimmune problems (Crohn's Disease, hypothyroid disease) run in my family.

So I suppose the question, after all that long-windedness (sorry!) is: where do I go from here? Given that I'm not Coeliac, so that's not what's causing my pain, bloating and other unsavoury digestive symptoms, I'm not sure what to do best to help myself. I don't believe in cutting out food groups without established cause (I hate fad diets, and so on), but I can't afford the York test, don't wish to come across as a hypochondriac to my doctors and can't go on feeling so gut-sore.

Any advice or information gratefully received!

Gill x

EDIT: Given the stuff I just read casting some doubt on the York tests, maybe it's a good thing I didn't have the money, anyway! ;-)

That sounds pretty awful. I know you said you don't believe in cutting out food groups with cause, but I think you have a long list of causes. I would strongly consider an elimination diet. I am thinking of trying that myself to see if that helps me. The gluten elimination help tremendously but I still have some issues and it is very common to be sensitive to more than one thing. Two weeks of your life where you have to cut back may be more than worth it if you can figure out your triggers.

Hawthorn Rookie

Hi and welcome

Even if it isn't celiacs that is causing you pain, it could be gluten intolerance. That is my official diagnosis after years of being ill (mentally). The physical didn't start until march last year. I went on an elimination diet out of sheer desperation and lo and behold things improved without the gluten, and eventually dairy had to go too.

So much has come into line now I'm not on gluten...psoriasis and eczema seriously in remission, no medication needed for depression/anxiety/insomnia, hormonal problems have settled right down. After taking a gluten challenge to attempt to get diagnosed properly (moment of madness and one I seriously regret now because I still have stomach problems a month later) I realised I don't actually need a formal diagnosis really.....the fact that I feel like I am dying when eating gluten is good enough reason for me to cut it out.

Had someone suggested that to me two years ago, I'm pretty sure I would have been sceptical too, but the proof is in the (gluten free of course) pudding.

For what it's worth, I adored gluteny foods too. Craved them, absolutely, and for a while after going gluten free I thought I would go crazy. But, it does settle down and now I wouldn't trade feeling well for anything. If you have stomach problems, suspect it could be gluten, which you do obviously, then you are doing yourself a huge favour by trying an elimination diet. It is not a fad diet if you improve without gluten.

After all of the problems I had mentally and physically, not one person in the huge amount of medical people I have seen over the last ten years even suggested it could be a food problem until I myself discovered it. Not one. I trust my bodys judgement on this one, because the medical community seems to favour treating symptoms rather than cause.

Good luck, whatever you decide to do...but I would say you have nothing to lose, and everything to gain, if this is the problem. Only one way to find out ;)

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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    4. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

    5. - knitty kitty replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

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

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
×
×
  • Create New...