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koliver

Not Sure If I Should Go In For Testing?

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Hi all, I'm new to the forum and the world of gluten intolerance/celiacs! I have a few close friends who either have allergies or fully diagnosed celiacs, but for various reasons they aren't easily contactable at the moment so I thought I'd look for some advice here. I don't have health insurance, nor am I very keen on doctors in general, so I wanted to get other folks' opinions before going through the expense and serious annoyance of exploring testing for gluten intolerance/celiacs. 

 

I was (supposedly) born lactose intolerant (very colicky, lots of stomach problems and crying) and had soy milk as an infant, but apparently 'grew out' of it to a certain extent. I can, and occasionally do, eat diary products but if I'm being honest I feel a lot better when I abstain from them completely so for the past few years I stay away from them apart from some cheese here and there which has helped. I've had insomnia for literally as long as I can remember. It takes me hours and hours to fall asleep each night unless I 'medicate', and I always wake up multiple times. But even when that isn't such an issue and I sleep a full 8-10 hours, I still feel constantly exhausted. I have pretty bad anxiety and have had issues with depression for over a decade, and the anxiety for even longer (I'm in my early twenties). I think I may be anemic as I always have multiple bruises with no apparent cause, but it makes no sense as I'm a vegetarian and am very careful about consuming iron rich foods every day and in good quantities (kale, other dark leafy greens, and so on). Sometimes in college I got mysterious bouts of hives with no known cause, and when I was younger and eating even more gluten, and much more consistently, than I do now I had these weird tiny red dot rashes for months but I was super self conscious about it and for whatever reason never told anyone as they sort of came and went it never really got checked out. For many years I seriously cut down on my gluten intake simply because I cut out carbs in a big way from my diet, but in the past year or so I've started eating them fairly frequently and in larger quantities. And I've noticed whenever I drink beer and some other alcohols as well (perhaps other ones with grains? I've never really trakced it) I get really congested/runny nose, am tired, etc. But I have a deep love for beer, and new found love for carbs, so I sort of went into denial about any of these issues being connected. The past couple of days I did a cleanse and only ate raw foods (not recommended, to be honest), but last night I went out with friends to this all vegan joint and basically all of their meat substitutes were seitan (for those unfamiliar, it's literally ONLY made from gluten. It's like boiled bread dough that's seasoned basically). So I had this sandwich with regular bread and heaps of seitan and waffle fries and then went to the bar, and that was all I consumed that day apart from a dairy and gluten free smoothie. This morning after 9 hours of sleep (with super weird dreams, but who knows if thats connected) I've been exhausted and feel very foggy brained all day, and immediately when I woke up in the morning had weird cramps and diarrhea. So I'm beginning to think that gluten may be the culprit? 

 

Sorry for the long post, but any advice? Do any of these symptoms happen for you guys? 

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Koliver,

 

Welcome to the board.  I won't make any assumptions about how much you had to drink with your friends but that could be part of your brain fog :-)  Seriously though, your concerns are legit.  I cannot tell you for sure that you are are celiac or not without labs and a biopsy.

 

Even though you are eating iron rich foods, you could very well be anemic.  If you are celiac, you may be consuming iron but not absorbing it.  As for the skin irritation, celiac or not, it does seem that people who deal with regular rashes/breakouts respond well to a gluten free diet.

 

As for your love of carbs and beer; you can still technically eat loads of carbs on a gluten free diet.  If you start purchasing gluten free substitutes and mixes you can still eat the desserts/pastries/pastas you enjoy.  As for the beer, yes, your craft beer days are going to be pretty much gone.  However, Estrella makes a great gluten-free beer and Red Bridge is a mainstream gluten-free beer.  I love the Estrella.  I am not really drinking these days because I am working on accelerating my recovery.

 

So my suggestion is this...  You know your body.  If you think you are celiac, eliminate gluten for several months.  See if your symptoms improve.  I am considered a silent celiac so it took a long time for my intermittent symptoms to add up and its taken some time for them to go away.  My deamidated gliadin (celiac marker for someone who is Absent IGA) went from 83 to 15 which is fantastic-but it has taken almost a year to do it.  So it takes awhile.  The quickest way to know is to get the blood panel but if you don't do doctors and don't have insurance your other option is to just go gluten-free for several months and see how it goes.  If you are not committed to being gluten-free 100% of that time though, don't bother because it will be a waste of your time.  If you eat it just once per month, your body will keep acting like you are consuming it.

 

Good luck!

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I agree with eer03 that you know your own body so if you think gluten is a problem, it very well could be BUT I disagree about going gluten-free now. If it does turn out that you do better on the gluten-free diet and think you should be tesed for celiac, then you will ave to resume eating gluten for a couple of months to have accurate tests. I think it would make more sense to test first and then go gluten-free. Go gluten-free even if the tests are negative because non-celiac gluten intolerance (NCGI) could be involved and there is no test for that except for a positive response to the gluten-free diet.

Best wishes.

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I agree with Nicole. Get tested before going gluten free. From what I see on here, people regret going gluten free and never having a diagnosis. And they don't want to eat gluten for 3 months to get tested once they are feeling better gluten-free.

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Thanks for the responses! Ha, I don't drink much any more -- maybe one or two drinks if I go out, so it definitely wasn't just a hangover! I've also noticed that it feels like my bones hurt, which sounds kind of odd. But especially my knees just seem to ache. I have an appt for next month for unrelated things, so I think I will just continue eating it until then and get the blood tests. And if I don't test positive for celiac then maybe I will just try going gluten free for a few months and see if it helps, or if all of these issues are somehow related to something else going on! 

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