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
      104,695
    • Total Posts
      921,778
  • Topics

  • Posts

    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,700
    • Most Online
      3,093

    Newest Member
    JessZ08
    Joined