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Getting Scared Over Unexplained Symptoms

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Posted

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.

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ravenwoodglass Mentor
ravenwoodglass
Posted

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. :angry:

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 Enthusiast
ShayFL
Posted

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.

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Posted
  • Author

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 Enthusiast
ShayFL
Posted

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

ravenwoodglass Mentor
ravenwoodglass
Posted
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 Enthusiast
CarlaB
Posted

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

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closure Newbie
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  • Author

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.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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