Getting Scared Over Unexplained Symptoms

[closure]

I posted here a while back and I'm here again still sick. A quick list of symptoms...

severely bloated stomach. looks like I'm 9 months pregnant, but in my stomach instead of my uterus. That's the only way I can think to describe it. I'm just getting bigger and more uncomfortable and we're getting scared that maybe it's a tumor or something because my boyfriend's friend had a tumor and this is how her stomach looked before diagnosis. worst case scenerio I know.

rash on stomach that comes and goes...very itchy, doesn't spread and in the 2 years I've had it no one else has ever "caught" it.

mouth sores that come and go...also going on about 2 years

severe diarrhea

some rectal bleeding off and on

super dry skin as of late. my arms are dry, white, and flaky. even with lotion after a while it's just as bad as before the lotion

been to the ER 3 times for dehydration

severe swelling of ankles, feet, knees

joint pain, muscle aches

heart palpatations

dizziness

those are the major ones I guess. I had a colonoscopy because they were worried about crohns, but they found nothing. did multiple biopsies throughout the colon just to make sure and not a thing. can't figure out where the bleeding is from. I was seeing a colon/rectal surgeon for all of this.

have my first appt with a gastro doc on Sept 9. the bloating in my stomach is making me nervous though and I think I'm going to call in the AM to see if they can get me in sooner.

I called my family doc today and they agreed to at least run a celiac panel. I don't know exactly what they tested, but hoping something shows up and is treatable. I know the blood work isn't always right so that's disappointing, but I'm just happy they're at least trying something.

my dad suggested that I go to the ER because of how large my stomach is getting, but I don't feel like sitting there for 10 hours, which is how long I was there last month with dizziness and the usual stomach problems and they put me at the end of the list...I guess I wasn't that big of a priority. if I just go in there for stomach bloating I'm sure I'll be laughed out of the place.

don't know what else to do...scared and sick...all the time.

[ravenwoodglass]

I do so wish GI doctors would do endos the same time that they do the colonoscopy. It would only add a few minutes to the procedure and folks would have a much better chance of getting an answer. But then they wouldn't be able to get paid for two procedures.

Your right about going to the ER just for bloating. They might not laugh you out of the place but chances are you would be sitting there for a reallllllllly long time. ER's should really be used for emergencies like when you have nonstop D and are dehydrated.

I would encourage you to give the diet a good very strict try after you do all the testing that you want to do or that they will agree to. You don't need a doctors permission to eat gluten free and the only tests that the diet will interfer with are the ones for celiac. If there is something going on other than celiac or gluten intolerance being gluten free will not make it worse and may actually put some autoimmune disorders in remission. You have nothing to lose with the diet but your pain.

[ShayFL]

I concur....get all of the testing done as soon as you can. Then start the diet and see if it helps you. There really is nothing to lose.

[closure]

thanks guys. you mentioned autoimmune diseases...I have one already, hashimoto's.

should I wait til after Sept 9 when I see the GI before going gluten free? I'm probably going to call them now and see if they can get me in sooner though. I don't want to have celiac, but who does...you know? it would just be good to have an answer and have a treatment plan. I've never met my GI before so I hope he's a good one. I always seem to find the quacks though.

[ShayFL]

If you read through enough threads here, you will find that Hashi's and Celiac/Gluten Intolerance are married to each other.

[ravenwoodglass]

thanks guys. you mentioned autoimmune diseases...I have one already, hashimoto's.

should I wait til after Sept 9 when I see the GI before going gluten free? I'm probably going to call them now and see if they can get me in sooner though. I don't want to have celiac, but who does...you know? it would just be good to have an answer and have a treatment plan. I've never met my GI before so I hope he's a good one. I always seem to find the quacks though.

If you plan on having him do an endoscopy and biopsy on you for diagnosis then you need to stay on a full gluten diet until after the endoscopy. You do need to realize though that biopsies are not for sure and for certain. They can firmly tell you that you do have celiac but a negative is not a for sure that you don't.

The only treatment for celiac or gluten intolerance is the avoidance of gluten. If you need a firm doctor derived diagnosis then do keep on the gluten until you are done with testing. If your own response to the diet is all you need to keep you compliant then go ahead and start the diet. Some of us have a very quick healing and you may find there is not really any need to even go to the appointment if your issues have resolved. In addition some doctors are waking up and recognizing the validity of dietary response in diagnosis. Especially ones who see a patient that they saw every other week for something or other all of a sudden only coming in for routine physicals.

[CarlaB]

If your celiac tests come out negative, here's something else to consider. Open Original Shared Link

[closure]

thanks again guys. *hugs*

I'll have to look around for threads about hashimoto's.

called the GI's office...couldn't get me in any sooner, but at least put me on the cancellation list. I guess I'll just wait it out.