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

Newly Diagnosed....mayber

nmelf

Recommended Posts

nmelf Newbie
nmelf
Posted

Hi there, I am brand new to this. I was diagnosed with Fibromyalgia in 1993. Diagnosed with IBS in 2004. Had migrains since early childhood. Suffer chronic pain, chronic fatigue, "fibro fog", depression, irritability, bloating, transient light headedness. Most of the fun things associated with Fibromyalgia.

Saw my cardiologist's nurse practioner who said, " you don't have fibro and IBS you have Celiac disease." Told me to ask my doc to run the "blood tests". Doc agreed...tests came back "positive". I have no idea what was positive about them. Have no idea what I should be even asking about. Any guidance in this would be MOST appreciated.

I have done my best to go on a gluten-free diet. Have done a pretty fair job except for hidden things. I would like the biopsy to evaluate the severity of the condition but doc is resistant to it. Again, any help I receive would be really appreciated.

47 y/o. feels like 147!

nmelf :(

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

If you've gone gluten free, a biopsy may give you a false negative at this point. I would encourage you to continue reading this site, continue learning more about what you need to avoid to stay gluten free, and learning as much as you can.

There's a steep learning curve to going gluten free, and it takes time to do it. And it takes time to make the transition in life - it's easier for some and harder for others in the social realm. We're here to help with whatever we can (though we all certainly have our own style ;) ).

The good news is that you may see many of your symptoms improve. I'm (sometimes excessively) a realist, however, and would encourage you not to get your hopes up that all your symptoms will go away. Some people may have migraines and fibro at the same time as celiac (I was diagnosed with both after I had been on a gluten free diet for two years and five years, respectively), but many people find they were misdiagnosed, and properly treating their celiac disease (and sometimes additional food intolerances) does deal with the majority of their problems.

Anyway, welcome. It's a tough journey, and it may take time to feel better, but you're already on your way!

ravenwoodglass Mentor
ravenwoodglass
Posted

You have a good doctor who is not going to subject you to needless dangerous procedures to confirm something he already knows. That is fantastic news. Maybe they are learning.

You have found a great place for information and support. Welcome. Read as much as you can on this board and another good place for info is this site, the celiac sprue association's

Open Original Shared Link

This board has a lot of very knowledgable folks on it so feel free to ask any questions you need to. Nothing is off limits. I hope you heal quickly but often the first couple of months are touch and go. With all the CC issues with processed food you can take that literally. :D There is a learning curve to the diet, it is really more of a lifestyle change for many of us, but it is very doable once you get used to it.

GlutenWrangler Contributor
GlutenWrangler
Posted

I would take your doctor's word for it. A biopsy may or may not show damage at this point, and it probably wouldn't change your doctor's mind if it didn't show anything. The point is that celiac antibodies are present in your blood, and the blood tests are very specific to celiac disease. I know that it can be confusing, but if you can get the results from your doctor, you could post them on this site, and we could interpret them for you. We're all here to help, so if you have any questions, don't hesitate to ask! Good luck!

-Brian

Archived

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

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


  • Member Statistics

    • Total Members
      131,893
    • Most Online (within 30 mins)
      7,748
    Sgp
    Newest Member
    Sgp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.