Jump to content
  • 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

Confused About Symptons - Need Help!


nuttmegs17

Recommended Posts

nuttmegs17 Apprentice

I have been feeling bad for well over a year. My symptons have lately increased and I have been going for my doctor for quite some time now with no luck. My symptons at first were IBS-constipation but we have since felt that it is more than that. I have had an autoimmune disorder (currently in remission): Graves disease. So many of my symptons (noted later) made me think it was flaring up again but my Thryoid tests come back fine....I am set to see a GI doc at the end of the month. I had done resaerch on my own and decided to cut out gluten dairy soy and since doing so SOME of my symptons went away but not all. I have since decided to go back on wheat at my doc and this boards suggestion so that I can be properly tested.

Background

Last summer my stomach issues kicked up a notch and I noticed that I was not dropping weight despite a VERY active lifestyle (cycling 11 miles /day, running 5-10 miles other days) etc and eating an incredible healthy diet. It was disoncerting to say the least

Symptons

gas

constipation - suffered all my life, but in the last couple of years can only go about every 3 days

bloating - the kind that is so uncomfortable you cant stand up and have to call into work

distended stomach - looked like I was 9 months pregant and then some

hot flashes - esp at night..my sheets would be soaked and couldnt sleep(made me think of graves)

During the day I am experiencing hot and cold flashes (again reminded me of graves)

Newer but VERY disconcerting symptons:

1. face is slightly swollen. Not grotesquely but my husband and mother even noticed it looks off (reminded me of graves)

last few days I have noticed oiley stools (havent really looked before so dont know if this is really new)

2. GAINING weight despite healthy/active lifestyle (and no not muscle mass!)

I am at the end of my rope. I know there is much work to be done before I get any conclusive answers but does anyone have any feedback/advice or notice any similarities with their experiences. I am wary of continue on gluten if it is indeed my problem - should I continue to eat it before I see my GI guy?

Thanks!


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

It depends how bad you want the testing and diagnosis.

All of your symptoms seem to say you need to quit gluten yesterday.

I had the swollen face too for years.

Just now 5 months into gluten free is all of my swelling and inflammation calming down and my face looks normal.

If you are gonna test, do it quickly so you can go gluten free and see if it helps all of your symptoms that are consistent with Celiac/Gluten Intolerance.

nuttmegs17 Apprentice

That is good to hear - i am anxious to get this sorted out. I am just being held up due to the dr's schedule being jam packed - it makes it hard to get to everything quickly! I know this will be a long road :(

etta694 Explorer

Yes, constipation, night sweats 5 yrs ago, bloating, distention, intestinal discomfort, exhaustion... etc. I gave up on the doctors after 5 yrs of going every few months.. Too many tests for other things came back normal and I wasn't willing to go for blood tests (and eat gluten again) once I started eating gluten free.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,118
    • Most Online (within 30 mins)
      7,748

    Cwbtex
    Newest Member
    Cwbtex
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.