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Hello, my name is Maggie and I'm 18 years old. For about 4 years at least, I have been dealing with some random symptoms and pains. I have been tested for almost everything including lupus, RA, lymes disease, IBS (not tested just diagnosed), diabetes, the list could go on. I was tested for celiac four years ago by a doctor who specialized in alt. medicine. The blood test was negative and no other tests were done. At that point, I didn't push because first of all I was young and second people were starting to think my symptoms were in my head I think. So here I am still not knowing what is wrong and starting to doubt myself.

So let me first say that my cousin and great grandmother both suffer from celiac disease. If I had to guess, I would say that other members of my family suffer as well but just have not been tested. My symptoms are strange which is why I am nervous to go in and get tested for celiac disease. I experience migraines very frequently, joint pain- some of which is constant (like in my wrist and ankle) and some of which flares up, bloating, gas, constipation, stomach pain that comes with the bloating/etc, bladder/kidney? issues (in which I have to go all the time, I feel like I still have to go, burning, frequent UTI's) and I also feel fatigued, weak, dizzy, lightheaded often.

What I guess I am looking for is responses from people who have experienced anything like this to simply let me know I am not crazy because I am certainly starting to feel that way. I have been talking with my chiropractor (he knows so much about celiac disease as well as other autoimmune diseases) and he felt that celiac was a possibility for me so he suggested I try going gluten-free for a month or so (before I start college in the fall) and seeing ow I felt. I have been reading around and found that I should NOT go gluten-free if I plan on getting tested. So I also wanted to know what you all thought about me not getting tested for a while. The thing is, I feel dumb because every test my doctor has done has been negative and I have a huge fear that my celiac disease test will be also. Don't get me wrong, I don't want to have celiac, I see my cousin struggle BUT there comes a point that you just want them to figure out something so you can start to feel better, physically and mentally. I hope this sounds the way I intended it to!

I am sorry for the length and I really look forward to talking to people who understand :)

Thank you so much for letting me get it all off my chest!

Maggie

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Hi Maggie and welcome. It is NOT all in your head and don't let anyone make you start thinking that. I know how you feel - I went through 11 doctors before I finally found one who could figure out what was wrong with me (I had never heard of celiac but luckily he was a smart guy and that's the first thing he tested me for). If I were you, I would find a new GI dr who could run the tests again for celiac, before you go gluten free, and if they come back negative, then try the diet anyway. Of course, by the time yoiu do all this you will be in college, and it will be difficult, but there are some threads on here about eating gluten-free in college. Or, if you don't really care about an official dx, then just go gluten-free right now and see if you start to feel better. Your symptoms (and the fact that you have celiac in your family) sure sound like celiac to me, but I'm not a dr (although all of us here know more than most doctors about celiac!). Good luck!

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Hey Maggie:

Glad that you have found us. I can understand you reserve in not wanting to pursue a dx for Celiac. Believe me no one here wants to have celiac, but the bottom line for all of us is better health. So many of us have been sick for years without answers. So a dx of Celiac, to me atleast, was welcome. This is something that I can have controll of with out may medications, surgery or other unmentionables.

With a strong family history and the list of you systems, Celiac may very well be a possibility.

There are two ways you can go.

1. Try the totally gluten free diet for several months and see if you see improvement in your health. A positive dietary response is a diagnosis in itself. Many people here are self-diagnosed and feel very comfortable with it.

2. Continue to eat gluten and go for the blood test and perhaps and endoscopy. Both test can be inconclusive. They can rule celiac in, but they cannot rule it out.

I would think that you might want to resolve this before school starts so you know which direction to go.

The diet may seem overwhelming in the beginning, but it is very doable. The reward for diligence is a future without pain or unwelcome irreversible complications.

Hope this was helpful.

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I just wanted to add a small piece of advice that if you can't get things figured out before heading to university you might want to try student health services at your university if they have one. I didn't have celiac disease while in university but I always found the doctors at health services where I went to school to be great. And if your school is a good size there will probably be quite a few doctors to try if the first one you see doesn't seem too knowledgeable about Celiac. I don't know if it's the case everywhere but I found that most of the doctors there were quite new/young and it I think newer doctors might be more likely to have the updated facts of Celiac (i.e. that it is not rare and not just a childhood disorder).

Good luck to you and enjoy University. You don't realize how great university is until it's over so I hope you can get diagnosed and get well enough to enjoy your time at school.

Alex

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I'd suggest you find a gastro doctor familiar with celiac - maybe you could see your relatives' doctor? - and give it one more try. Request the full celiac blood panel and the biopsy. If results are inconclusive, I'd still give the gluten free diet a try to see if that resolves your symptoms.

Don't let anyone tell you what you feel is "all in your head" or make light of your situation. Your body's trying to tell you something is not right. It's up to you to find a supportive doctor who will help you figure out what's going on. College is going to be tough if you have to deal with on-going health issues. I know because I struggled with "IBS" and limped through while eating a terrible diet and popping anti-spasmodics. (I didn't know any better at the time and just did what my doctor told me to do.) You want to be able to enjoy this time in your life. I feel certain a uni cafeteria staff has dealt with special dietary requirements and food allergies... eating gluten free on campus may be easier than you think.

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The bladder issues are very familiar to me. I was getting UTI's about once a month or every other month. Then suddenly the cultures for them started to come back clean (no bacteria), even though I was having the same symptoms. It turned out to be a bladder condition called Interstitial Cystitis (but could have been other things too). If you are getting frequent UTI's, make sure they are getting cultured to verify they are caused by bacteria and not some other issue. The burning and urgency can also be caused by other things, such as pelvic floor problems (the pelvic floor is basically the muscles holding everything together down there). If you're having bowel problems, perlvic floor problems could certainly come up from that.

If your UTI's are actual bacterial UTI's, there are things you can do to help prevent them, such as drinking cranberry juice (blueberries work too), making sure to urinate right after sex, etc. I can't drink cranberry juice since it hurts my bladder, but I take cranberry pills after sex. It helps prevent bacteria from sticking to the bladder wall and causing infections.

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