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

Okay Sooo Do I Ahve celiac disease Or Am I Sick In Head?


VydorScope

Recommended Posts

VydorScope Proficient

Been thinking about this as I layon the couch in pain and lets for a min (or 5 or how ever long this takes...) ingore the IgA score of 0...and the non-postive bisopy...

Few years back I was fat. Did not look fat, not realy... but had gained about 4-5 inches in the wiast, and was pushing on 200 pounds. I have a large frame so very few ppl would have called me fat... I alos had high BP, low engery, etc. So I decided to do somthing about it. I did a LOW CARB (ie low to zero gluten by its very nature) diet, and lost 40-50 pounds. Regained my engery, and lowered my BP. I attrubited all that to the wight loss. Well I want on a "somewhat" low carb "mantiance diet" to keep my wieght under control (ie added littel gluten back in my diet), and over time my health degraded again. Found out my son had celiac disease so we all went gluten-free (mainly for convience), and my health started to improve (but did not realy notice it at the time, was sooooo gradual), then one night was out on a date with my wife and we got some pizza (its rare treat around here!) and got sick right after it.

Then after that decided to try the gluten challenge for re-testing me. My engery fell off, stools got loose, got the pains back, etc! Took the test and it came back not-celiac disease, oh wait we ingoring that... umm okay well then when gluten-free for a bit like 2 weeks, and then one sunday ate some gluten (little cakes and things at a church event), and that night had hamburger with a bun. 12-15 hours AFTER eating the cake I get all the old junk back, pain, etc etc.

SoooOOooOooOoOoOO if we ingore the nice objective tests, does that sound like celiac disease or am I sick in the head again? :huh:

I am very sick of being sick! :(


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



Celiac.com Sponsor (A8-M):



Guest nini

Vincent... I think you already know the answer to this my dear... Celiac is Genetic... Does your wife have it??? If not, then the most likely source is you. Based on your positive dietary response and subsequent negative response to being glutened, I would say that definitively shows that at the very least you are Gluten Intolerant and that is the main source of a lot of your problems. Even the experts are aware that the testing is still in developing stages, they don't have all the testing down. And no two experts ever seem to even agree on the standard for diagnosis. Listen to what your body is telling you.

I went through what you are going through. A friend told me she thought I had Celiac 6 or 7 years ago... I didn't listen. sortof. I kindof tried the diet, it kindof worked, I went back off of it... 2 miscarriages, life threatening pregnancy (very high blood pressure) and subsequent deterioration of health before ALMOST DYING before the Dr.s figured out what was wrong with me. Celiac. The very thing my friend had told me about 4 or 5 years earlier... Go Figure.

ianm Apprentice

The dietary response you have experienced is all I would need to know. I have never been tested because it is just so obvious that gluten is the problem. Since you son has it and celiac disease is genetic then that is another sign. You know what needs to be done and your body, not a medical test is telling you all that you really need to know.

tarnalberry Community Regular

Listen to your body. Celiac or not, you need to avoid the stuff! :-)

VydorScope Proficient

Reviewing this thread this am a few thoughts struck me...

1) My son did not show postive on the IgA scale either, making it likly we are both IgA deficent, and if the <insert not nice adjactives here> insurace company would allow the other tests I would test postive.

2) I have celiac disease. If I can get the ELISA test covered I will check for OTHER things, but no way am I going back on gluten for it! :o

3) I am only slighly hurt that this has not been pin'd yet :);)

The thing that bothers me a bit is... I am a son of a 100% Italian father, whose parents came over from Italy as childern via Elis Island. I ate ALOT of pasta and pizza growing up. I mean ALOT. It used to make up, prbly 75% of my diet! I never had problems like this till 3 or 4 years ago??? Thats one reason why I have been so hesitant on beliveing the celiac disease would fit me.

jerseyangel Proficient

Vincent--I'm glad you are going to keep on being gluten-free. Hopefully, you can get your tests for other possible sensitivites, but you can and will get better by being gluten-free. As you heal from the gluten, I wouldn't be surprised if the other sensitivites become more obvious and you can omit them and see how you do. After I was gluten-free for a while, thats what happened with me. I became aware that corn, for example, was a problem. Never realized it before, I guess because the gluten was causing so much trouble. I also really identified with your Italian history--my mom's mom came over from Italy when she was 4. My dad's dad also came over as a child. Both of their spouses are Italian.. We had pasta every Sunday of my life as a kid as well as bread salad, homemade soup w/ pasta--it was in everything! I always had a sensitive stomach, but my Celiac didn't really kick in until 2 years ago.

jenvan Collaborator

I agree...sometimes things can't be 'conventionally' confirmed...but if your body hates gluten, that's all you need to know.


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



Celiac.com Sponsor (A8-M):



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 Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    3. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      6

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

    5. - Silk tha Shocker posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,478
    • Most Online (within 30 mins)
      7,748

    Susan Gutenberger
    Newest Member
    Susan Gutenberger
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • Silk tha Shocker
      What is the best gluten free scanner app? I have the "gluten-free Scanner" app. I scanned an almond joy and it says it contains gluten when the package is labeled gluten free
×
×
  • 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.