Come On Already. (a Long Post, Sorry)

[LynziMarie]

I just finished posting my introduction, and I figured I will just keep on posting!!

I am waiting for the initial test results to come in and have an allergy test tomorrow, and I'll be completely honest, I'm really hoping it is simply a gluten sensitivity or allergy, not necessarily Celiacs, but the alternatives are much less easy to control and a lot scarier. Things like Cushing's Disease, a couple different cancers, and a few other auto immune diseases.

I actually never considered Celiacs to be an option for me, simply because I assumed it would mean weight loss. But, now that I'm reading more about this, I've realized that's not necessarily true. I have had trouble with my weight since I was five or even younger. I mean I have dieted since 9 years old, and always been active. I figure skated for over six years and kept gaining weight. Things actually seemed to subside a little around the age of 13, and I began to drop a ton of weight very fast. But, when I was 15, I suffered a very severe heat stroke and severe dehydration and everything started up again, only about 100 times worse. Not only did I gain about 100 lbs. in one year, I had to leave public high school because my body was in so much stress that I would sweat to the point I looked as if I had just stepped out of a shower, even if just sitting still, and I would pass out at least four times a week. Then, if that isn't weird enough, the really weird stuff began happening. I have days that my stomach is so swollen and bloated that my pants won't fit. It's very painful and quite uncomfortable. I hate to get graphic, but I'm sure I'm not the first or last, but... I must... If I'm not constipated, I have the exact opposite. Very severe diarrhea. My menstrual cycles are extremely irregular to the point for the most part, I just don't have one. I drink at least 8 cups, if not more, water a day and will only pee twice maybe three times (if I'm lucky). There will be days that I don't pee at all. But I sweat even in the middle of winter and I never actually feel hot, in fact I often have very cold feet and a cold nose. Nighttime is worse, my stomach cramps up, and I cannot sleep for anything. My lower back is always killing me no matter what I've done or haven't done that day, not even pain medication will dull it any. There are nights I am so exhausted I'm certain I will fall asleep in a second, and I won't fall asleep until 2 in the morning... there have been a few nights that I don't sleep at all, until 7 am. When I finally do fall asleep, it's very restless, filled with very crazy dreams. I seem to have restless ARM syndrome or something like it. My arms always throb or fall asleep at night, making very hard for me to relax.

Even when I was a baby I was constipated very badly, and to this day I get severe canker sores that not even the best medicines can get rid of. The skin of the tips of my fingers always blister and starts to peel off, I am constantly fighting with hangnails and extremely itchy skin, and weird rashes. Basically, I'm ALWAYS in pain. Headaches gallore. I just can't handle it anymore. I'm just starting college and getting ready to get on with my life.... but I can't without getting my health under control. I literally feel like an 80 year old woman trapped in an obese 18 year old body.

Unfortunately, I know that Celiacs is hereditary, and I happen to be a donor conceived child, so half of my family history is a mystery. That makes it super fun to be grasping for straws. HAH.

Anyways, I really hope to figure everything out soon, so I can get my life started. And I hope I can learn alot from talking to others dealing with similar issues and problems.

OH... I almost forgot the whole reason I even went back to my doctor. (I'd pretty much given up after the 8th different doctor/specialist) Well, I went to the eye doctor because I had been suffering from my eyes burning really badly. Turns out he was the one that sparked that thing in me that had given up on ever figuring out what is wrong with me. He was very concerned at how dry my eyes were, he told my mom that he's only ever seen eyes this dry in 80 year olds. He gave me three perscriptions and asked if I had any auto-immune or inflammatory diseases because my eyes were so dry it concerned him and he suggested I see my general physician because such dry eyes can be indicative of several things. So I went and tried out my dad's doctor (who is actually also an allergist, go figure!) and he is actually very baffled, and is the first doctor to admit that to me. He was the one who suggested we travel down the testing for Celiacs path... so... here we are!! Isn't that fun!! I'd been to endocrinologists, gastroenterologist, obesity specialists, and three seperate generals to find out that the doctor who could possibly save me from Hell was under my nose all the time. Wow.

[Mother of Jibril]

Welcome to the group!

Two things come to mind... a thyroid disorder and Sjogren's syndrome.

The thyroid does a LOT of really important things in your body... it regulates your temperature, heart rate, blood pressure, reproductive hormones, and metabolism. Hypothyroidism can lead to hair loss, weight gain, constipation, feeling cold all the time, fainting from low blood pressure, depression, dry skin, and heavy, irregular periods. If you haven't tested for this already, ask to be tested for TSH and thyroid antibodies (TPO, TgAb).

Sjogren's symdrome is characterized by dry eyes and a dry mouth, but it can dry out all kinds of things in your body... nose, throat, lungs, genital area, scalp, etc... It's also considered a form of arthritis, so some people notice joint pain. Here's a really excellent article I found that explains how to diagnose Sjogren's and how to tell it apart from related disorders (especially rheumatoid arthritis and lupus): Open Original Shared Link

It's definitely reasonable to check out celiac disease too! Even if your blood test comes back negative, you should think about giving the gluten-free diet a try to see how you feel.

[GFqueen17]

Even if your blood test comes back negative, you should think about giving the gluten-free diet a try to see how you feel.

I definately agree, I would try it no matter what.

[LynziMarie]

Welcome to the group!

Two things come to mind... a thyroid disorder and Sjogren's syndrome.

The thyroid does a LOT of really important things in your body... it regulates your temperature, heart rate, blood pressure, reproductive hormones, and metabolism. Hypothyroidism can lead to hair loss, weight gain, constipation, feeling cold all the time, fainting from low blood pressure, depression, dry skin, and heavy, irregular periods. If you haven't tested for this already, ask to be tested for TSH and thyroid antibodies (TPO, TgAb).

Sjogren's symdrome is characterized by dry eyes and a dry mouth, but it can dry out all kinds of things in your body... nose, throat, lungs, genital area, scalp, etc... It's also considered a form of arthritis, so some people notice joint pain. Here's a really excellent article I found that explains how to diagnose Sjogren's and how to tell it apart from related disorders (especially rheumatoid arthritis and lupus): Open Original Shared Link

It's definitely reasonable to check out celiac disease too! Even if your blood test comes back negative, you should think about giving the gluten-free diet a try to see how you feel.

wow thanks!!

I have been tested for so many things it's hard to remember! haha I know my thyroid was borderline but not high enough for anyone to do anything about it. But that's been the case with a ton of things with me. I was being tested for Cushing's Disease, but everything came out negative, and I don't have any visible tumors. So if it is that, it's just waiting until something can be done. GREAT. I do need to do some research on that Sjogren's syndrome! hmm... It's amazing how many things can just go wrong, isn't it? I can't tell you how many nights I lay awake wishing that the next day I can just feel good. Just once. Ugh.

I've been trying the gluten-free diet for about a week now, and I do feel quite a difference. But, it's hard for me to tell if maybe it's just a psycho thingamajig or if it's real. After being told for so long, starting when I was really young, that nothing's really wrong with me and it's all in my head. I'm not so sure anymore what's going on.

But thank you so much for your feedback!! I'll talk to my doc tomorrow when I go in for my allergy test!

I have to say, though, some of the gluten-free foods are really good!! I actually prefer the rice bread over regular bread! It's sweeter!! haha

[ang1e0251]

Honey, don't ever let them say it's all in your head. I'll bet most of us on this site have been told that. It's not true we were just sick! You know something is wrong. I'm so-o-o glad you're feeling better on the gluten-free diet. I agree that a lot of your symptoms sound like thyroid. I think the website others recommended was stopthethyroidmadness.com (?). I hope I gave you the right name.

Hang in there. You have come to the right place and we will listen to everything you need to say.

[lizard00]

I would also say THYROID. If it was borderline, perhaps that should have been pursued more.

So, have the doctors ran a celiac panel on you? If you said in one of your posts, I apologize. I just read this one and didn't see it. Because I read your other post about allergies... and not being allergic doesn't mean that you don't have celiac.

And like someone else said, if your test comes back negative, you can always try the diet to see if it helps.

Hope you get some answers soon!

[nasalady]

Welcome to the group! I'm sorry to here about your health problems....you're definitely too young to be having to deal with such issues! I'm fairly new here myself....there are lots of very knowledgeable people here who can help you so it's a great place to come with questions.

Everyone else has been suggesting that you be tested for thyroid problems and/or Sjogren's; I concur. I have several autoimmune diseases myself including Hashimoto's thyroiditis, so your symptoms sound familiar.

Another thing you might want to be tested for is fibromyalgia. Some of the symptoms you describe (including the dry eyes) can accompany fibro. A rheumatologist would be able to rule this out.

Take care,

JoAnn

[minton]

Borderline thyroid is enough reason to treat it. You may have a goiter or just hypothyroid for whatever reason. I was told my tests were normal low for years and my first visit to an endocrinologist, he just looked at me and saw the goiter. Given that you say you are obese, a goiter may be hard to see or feel for. I highly suggest second, third, fourth and as many opinions as it takes. Remember, normal or borderline for the average joe may be extremely low for you.

Obesity can be a symptom too. My doctor told me that some people cant hold weight but others, the body can't eliminate it so it becomes fat waste. My body did that. I can't tell you the number of diets I tried that failed.

Not sure how heavy you are but sweating may be weight related. I do know plenty of obese people that have sweating trouble. In my family where obesity is rampant, everyone drinks one beer a day. Those who don't tend to sweat. They make gluten free beers and you may want to try it.

Your symptoms sound similar to what I went through. I will tell you that when I was finally diagnosed, I had Celiac, anemia, restless leg syndrome (more like restless body!), depression, ADHD, and thyroid goiter. It does not sound like anemia or ADHD is an issue for you though. And I wouldn't blame you for being depressed if you are. I was 17 and collapsing in school from the pain...I remember how upsetting it was and I'm sure you can relate.

Try magnesium for your restless arms (ask a doctor first!) and B complex (ask agian!) for your temperature issues. It sounds weird but if you aren't absorbing it, you can have odd nerve symptoms including temperature oddities and magnesium right before bed helps relax so that the arms or legs dont move so much.