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New, Not Sure If Celiac Or Not.
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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

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

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

:blink:
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: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.

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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)

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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.

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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!

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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