Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Okay Sooo Do I Ahve celiac disease Or Am I Sick In Head?
0

7 posts in this topic

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! :(

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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
0

  • Forum Statistics

    • Total Topics
      104,375
    • Total Posts
      920,571
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,451
    • Most Online
      1,763

    Newest Member
    Chelsealarita
    Joined