Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Help/advice


Swd

Recommended Posts

Swd Newbie

Hello, this is my first ever post to please bare with if this is in the wrong category.. been diagnosed since jan this year after multiple test last year .. do my best to stick to a gluten-free diet and dont eat what i shouldn't.. if i am consuming gluten cross contamination could be only reason id say. In the last 7 days i have jad a real bad stomach, a tight, gripping feeling getting worse when I eat .. last few days constipation .. finally ph9ned docs today and have had a blood test oit off given the current world situation but feel my constant worrying and anxiety probably not helping me and my mood with family. Hooe this is ok.any advice or others suffered similar. Male 32 years old.


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



Celiac.com Sponsor (A8-M):



notme Experienced

what sort of blood test did you put off?  how were you diagnosed with celiac?  are you eating out at restaurants/getting take out very much?    

i have had blood work done during this health crisis with no problems.  my doctor's office has strict protocols in place limiting their office capacity.  i only interacted with the 'vampire' lolz 

Swd Newbie

I was diagnosed with a biopsy in January.. when i said put off that was only phoning the doctors this time thinking my symptoms in the last week would improve but unfortunately it has lasted a week now. I have been for my bloods taking today. Don't get takeouts often at all as there is very limited foods you can have from such places. Thanks for your reply

notme Experienced

here is a helpful place to start looking for ways to manage our diet better.  it takes a bit to get "good" at it, lolz, don't feel alone.  the struggle is real, but not impossible.  i think i didn't eat out/take out for a solid year.  yeah, at first i was like:  o, yeah, no big deal, i'll just order off the gluten-free menu.  haaaa ha ha, there are a million and one ways to get cross contaminated when you're trusting somebody else to feed you safely!  

also, maybe start a food journal - everything you eat, and how you feel - you may need to skip dairy for awhile, and you might be sensitive to raw fruits/veggies for a while until you heal some.  depending on how long you went undiagnosed it may take some time.  i am still seeing improvements (mostly neurological now, it's the last to leave the party lolz) after 10 years on the gluten-free diet.  take heart and have patience.  welcome to the club you never wanted to join ;) 

Swd Newbie

Thanks for your reply again, the diary a good idea.. i do think milk doesn't help me i must admit for some strange reason so will avoid for a while .. have also given up on the gluten free oats for breakfast as a possible cause for my recent discomfort  .. trusting others to cook gluten-free meals without cross contamination is hard

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):




  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Emma2322
      No! She is not going on gluten-related problems. I'm here just to know about IVF treatment because she wants to ensure before treatment If it's safe.
    • trents
      Welcome to the forum, @Emma2322! Can you give us some context here? This online community exists to support those with gluten-related disorders such as celiac disease and gluten sensitivity. Does your cousin suffer from a gluten-related disorder?
    • trents
      Welcome to this online community, @Mina H! 1. Apart from any consideration of crypt hyperplasia, villous atrophy is the hallmark of celiac disease. There are some other things that can cause villous atrophy such as an intolerance to cow's milk protein (CMP), chronic NSAID use, a certain blood pressure med, certain parasitic intestinal infections and a few other medical conditions but they are relatively unlikely compared to celiac disease being the cause, especially in view of the accompanying symptoms you list. 2. The endoscopy with biopsy is still considered to be the gold standard of celiac disease diagnosis, not blood antibody testing. Blood antibody testing is in some ways the "rule out" step for determining whether or not to move on to the second and more definitive stage of diagnosis, namely, the endoscopy/biopsy. There is a movement afoot to diagnose celiac disease based on blood antibody testing alone but only when the TTG-IGA score reach 10x mormal. 3. All the symptoms you describe are classic and scream of celiac disease. If your healthcare system in Japan is unable or unwilling to grant you an official diagnosis based on the biopsy results and your symptoms, your next step would be to engage with the gluten free diet and see if your symptoms improve over a period of weeks/months.
    • Emma2322
      My name is Emma and I'm 36. I am here to learn about IVF treatment because my cousin is going to do her IVF but I heard from many people it's very hazardous. Could anybody tell me if she should go for treatment or not?
    • Mina H
      Hi. My biopsy results just came back and it's a little confusing. Here's what the report says (I translated it myself from Japanese): Biopsy report -Chronic duodenitis -The mucosa shows mild to moderate lymphocytic infiltration, and the villi are partially shortened and atrophic. -Mild lymphocytic infiltration is seen in the surface and crypt epithelium. -Crypt hyperplasia is not clearly present, but the findings are considered not inconsistent with celiac disease. (My note: Japanese people like this kind of statement) -No findings of granulomas, specific infectious disease, or malignancy are observed   The GI said he didn't see anything special during the upper endoscopy but sent samples (not sure how many samples he took) for biopsy. 1. So, my question is, does the biopsy report makes sense? (Villi atrophy and lymphocytes are present, but no clear crypt hyperplasia? Can it still be considered MARSH 3a (because of villi atrophy?) and therefore suggestive of Celiac?   I have to say, althought not completely gluten free, recently, I've been trying to avoid gluten when cooking for myself but I would eat pizza or cheese cake or cookies or pasta now and then, maybe at least one-two times a week. I'm quite shocked because ever since I learned that I have a Celiac gene, althought not strict complete gluten free, I really tried not to eat bread or pasta or pizza every meal or everyday (even changed my soy souce to flour-free Tamari sauce), but it was enough to damage the villi. I think many Asian condiments contain gluten, even some vinegar in Japan... 2. Another question is the biopsy result alone enough to confirm I am Celiac, since getting a blood test is not readily available and expensive to do in the country I'm living in (Japan)? Or should I continue eating gluten and wait 8 weeks and pay out-of-pocket for the antibodies test too (super expensive to me though ($500 USD, even endoscopy is practically free/cheap here) because the blood draw will be done by a clinic in Tokyo, but the sample has to be sent to a US lab)? Hoever, I live very far from Tokyo or large cities so there will also be travel costs. *** Background Info: I'm Asian female living in Japan where Celiac is thought to be very rare, so the blood test for antibodies is not readily available even through doctors. I'm not Japanese, by the way. I learned several years ago that I am HLA-DQ2.5 positive (heterozygous). Symptoms: Recently, I've been feeling off whenever I ate something with gluten. But the symptoms were vague like having to run into bathroom, constipation (I suppose more constipation than diarrhea), brain fog/dizziness, tiredness/daytime sleepiness, gassy/bloating or cramps, random abdominal pain (I thought it was due to ovulation or something). I thought it was IBS or something. I also had acid reflux sometimes, successfully controlled or healed through acid watcher's diet etc. The most problematic symptom for me was acid reflux or LPR/silent reflux (I did a Peptest and there was pepsin detected in my saliva even when I didn't particularly felt heartburn!), I thought it was because I ate dark chocolate and drank spearmint tea everyday so stopped. Reflux is why I went to the GI to ask for uppper endoscopy.
×
×
  • Create New...