Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Getting Scared Over Unexplained Symptoms

closure

Recommended Posts

closure Newbie
closure
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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

closure Newbie
closure
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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


closure Newbie
closure
Posted
  • 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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,062
    • Most Online (within 30 mins)
      7,748
    Robinlee
    Newest Member
    Robinlee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      I also want to mention that using prednisone would likely also make the endoscopy results invalid. This steroid will cause gut healing and could mask the damage caused by celiac disease. 
    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
×
×
  • Create New...