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 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. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.