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, Not Sure If Celiac Or Not.

Pro

By Pro
in Introduce Yourself / Share Stuff

Recommended Posts

Pro Newbie
Pro
Posted

Hi everyone, I go by Prohibit on the internet. Fitting since I think my food choices are about to be prohibited. I am 22 years old and have been struggling with anxiety for a few years now. I just got married on April 20th, and we went to Disney World for our honeymoon (we are actually driving back to Oklahoma right now). So here is where my story starts.. we're on our way to our honeymoon, and after a few hours of driving my hand goes completely numb / tingly. I didn't think anything of it of course. So then since day one of being at Disney World I was having some problems when we ate. My stomach would start to hurt really bad (sharp pains), and I'd have to go to the bathroom for a while afterwards. Well.. as the week long honeymoon got closer to end I started to realize this was happening every time I ate. On top of this, I feel very worn out / tired a lot and very early. It's almost as rest does nothing for me. Up until now I just thought maybe I'm a complainer or something. After looking at the symptoms list I feel like someone grabbed the book of my life and copied bits and pieces out of it. I have always had problems gaining weight and have always been pretty small. I am 5'5 and usually weigh 120-130 lbs. Right now I am at 150, feel very bloated, and notice a lot of weight gain around my neck and face. I get bumps under my skin on my neck and face that are like zits/pimples without a head and they eventually just go away. Also have problems with neck rashes when I shave, and have never been able to rid myself of acne. Since this last week I have had foul diarrhea and constipation + gas. Today I haven't eaten anything with gluten and am feeling better. My wrist has been hurting a bit, and the back of my foot. I never could do well in high school, couldn't concentrate so I dropped out and joined the navy to be discharged one year later because of my anxiety. I seriously feel like I'm on an emotional rollercoaster. The past week I've been very irritable after eating and sometimes snapping on my wife when it isn't necessary. I've lost my appetite because I can only associate it with pain. On top of things, I think I might be sterile but not 100% sure. My stomach has also been very "rumbly". I also have some tooth discoloration for most of my life. Is it normal to not have these stomach problems until my 20s? My right hand is tingling now as in typing this.

I wanted to ask you that have been diagnosed if you think there's a good chance I have this or not. I plan to go get tested soon, but don't have insurance so I'm waiting it out.

If I have it, it would explain a ton of things in my life. My wife and I have best friends that are married, and the wife has celiac disease. I never realized how big of a deal it is or what she goes through, and have major respect for all of you. Nobody should go through this.

So, do I continue to eat gluten and feel terrible? My best friend says don't start gluten free diet unless I know I have it, but I don't want to torture myself. I start to hurt before even finishing my meal. At first I thought food poisoning, but wide has had 0 issues and we ate all the same things up until today. I seek your guidance.

Now that all the gruesome details are out of the way. I work as a contractor for oil companies taking pictures of legal documents in courthouses. In my free time I am a web administrator and run a fan based mobile gaming community with over 15,000 members since July 2011. I also am an administrator for the band 311's forums. We have three pomeranians that are very good boys and don't bark all the time. One is black, one brown, and one white. They are too smart for their own good. When you have to put a crate upside down, with the door against the fridge to keep them from letting themselves out, you have a problem lol. Hope you are all having a great evening.

Ray

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

Celiac.com Sponsor (A8-M):


Pro Newbie
Pro
Posted
  • Author

Sorry about typos and or poor grammar. Big posts aren't meant to be made on phones.

psawyer Proficient
psawyer
Posted

Big posts aren't meant to be made on phones.

:blink:
Pro Newbie
Pro
Posted
  • Author

:blink:

Well, it wouldn't have been bad, but I was using my wife's phone and her phone's keyboard isn't nearly as accurate as mine is.

mushroom Proficient
mushroom
Posted

I have nothing but admiration for your phone keyboarding skills. As a mature lady with big hands that tend to run arthritic, those keyboards do not hack it for mr, plus my long fingernails :rolleyes: to balance out the swollen stubbiness

But back to your problem. How long do you say you and your wife have been friends??? Did she not tell you her problems before this? Or did you not listen? Or did you not not think they had any application to your life up till now?? :blink: Or all of the above?

Yes, it does sound like you have a problem with gluten. Yes, I think you should find out whether you have celiac disease - this will be your last chance before going gluten free :o You do need to be eating gluten for the testing to be accurate, but if you are a brand new celiac there is a chance you may not yet have enough antibodies to register a positive on the blood test or may not have done enough intestinal damage for it to show up on the biopsy if they do one for you.

Either way, if I may venture an opinion, knowing that you two are newlly married and who knows how experienced at sharing living quarters, you would be doing your wife a huge favor by not bringing gluten into the house (it wiill make her life a heckuva lot easier, and safer), and it sounds like, whether you test positive or negative, that you will benefit from o gluten free life too -- a win/win situation if ever I heard one. Plus you can kiss each other freely without having to bother with tooth brushing :lol:

Go to your doctor as soon as you get insurance and ask for a full celiac panel. And in the meantime, keep your gluten away from your wife and don't kiss her without brushing your teeth :ph34r:

And by the way, welcome to the forum, Pro(hibit)

Pro Newbie
Pro
Posted
  • Author

I have nothing but admiration for your phone keyboarding skills. As a mature lady with big hands that tend to run arthritic, those keyboards do not hack it for mr, plus my long fingernails :rolleyes: to balance out the swollen stubbiness

But back to your problem. How long do you say you and your wife have been friends??? Did she not tell you her problems before this? Or did you not listen? Or did you not not think they had any application to your life up till now?? :blink: Or all of the above?

Yes, it does sound like you have a problem with gluten. Yes, I think you should find out whether you have celiac disease - this will be your last chance before going gluten free :o You do need to be eating gluten for the testing to be accurate, but if you are a brand new celiac there is a chance you may not yet have enough antibodies to register a positive on the blood test or may not have done enough intestinal damage for it to show up on the biopsy if they do one for you.

Either way, if I may venture an opinion, knowing that you two are newlly married and who knows how experienced at sharing living quarters, you would be doing your wife a huge favor by not bringing gluten into the house (it wiill make her life a heckuva lot easier, and safer), and it sounds like, whether you test positive or negative, that you will benefit from o gluten free life too -- a win/win situation if ever I heard one. Plus you can kiss each other freely without having to bother with tooth brushing :lol:

Go to your doctor as soon as you get insurance and ask for a full celiac panel. And in the meantime, keep your gluten away from your wife and don't kiss her without brushing your teeth :ph34r:

And by the way, welcome to the forum, Pro(hibit)

Thank you for the warm welcome. I know the way I said it was pretty confusing and probably wrong, but my wife doesn't have it, or atleast we don't think she does. It's my best friend's wife (whom is also my wife's best friend) that I was referring to. I am going to call a doctor listed on this site Monday to see how much it will cost me to get tested. I don't know how much longer I can handle these pains and side effects, so I hope to get in as soon as possible. I feel like every time I eat I am just punching myself in the stomach. By the way, they have heat sensitive nails for your phone now ;) Only reason I know is because I have sold cell phones for most of my so-far adult working life.

Thanks again for your response and welcome :) I appreciate it.

AVR1962 Collaborator
AVR1962
Posted

No worries about the typos, lol, I have plenty with the computer keyboard.....a telephone would be a definate challenge!

Welcome! Here's a few things to consider. If you think this could be a possibility I would make an appt with your doc to speak to him/her. If they decide to test for celiac realize you have to be eating gluten.....going off gluten and then testing will mess up your test results. However, that said, the testing process is not real accurate and if you have been reading you may have come across that.

Something to think about too is if it was dairy or gluten that you think was bothering you, it could be one of both. On your oown you can try an experiment.....take both dairy and gluten out of your diet for about 6 weeks. At the end of that time try one while you continue to avoid the other and see if the one you are trying bothers you. Once you ahve your answer on that one then stop eating that food, try the other. It is a good way to see which one, or both, are giving you issues. You may have a gluten intolerence and not celiac too. I have 2 adult daughters on gluten-free/dairy free diets....neither ever tested but seeing how one does vs the other it would be my guess one has celiac and the other in gluten intolerent.

Good luck to you!

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748
    Betty Siebert
    Newest Member
    Betty Siebert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.