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


LookingforAnswers15

Recommended Posts

LookingforAnswers15 Enthusiast

Hi all,

since the last time I wrote, I got to see a rheumatologist. However, he was not interested in listening to my symptoms but just reading my test results that are already outdated and as you know, some came back as positive. He said that I did not need to come to him since most likely nothing was wrong with me and asked me whether I saw a neurologist. God knows how much I would love that was true. I told him about my foot pain, problems with my ear (the  other doctor said it was tinnitus and also told me to go to see a rheumatologist). He told me to repeat certain tests  ANA, ENA, and also get tested for Lyme disease. I have to admit that I was surprised by this but it does not hurt to check it. 

I decided to eat healthy again. From Feb. until some time in March (all together 40 days), I ate very healthy...smoothies, fresh veggies, fruits and meats and avoided all gluten-free processed food and sweets.  A few days ago I ate some chocolate and some gluten-free processed food and I was so tired. I barely could function after work. I began reading about the importance of eating healthy when one has a chronic illness. Most of those articles mentioned avoiding gluten, sugar, and dairy. So, I decided to cut sugar out for good but i decided to have some gluten-free ice cream and chocolate today before stopping it for good. Tonight, my whole body is itching.

Has anyone had any reactions like these?

Thanks!


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



Celiac.com Sponsor (A8-M):



dharwood Rookie

Looking -

Sorry I don’t have answers for you, but I can sympathize with you. It sounds a lot like what I have been going through this last year. I also had high RF and RA numbers along with high CCP numbers. I requested a Lyme test and that came back with some positive bands and some negative. No one has interpreted it for me yet. The Rheumatologist that I have seen through the VA (I’m Retired Army) sounds like she may have went to the same school as yours. She basically said I don’t have RA because I am not showing any inflammation. My joints, mainly ankles and knees are extremely painful and all my major muscle groups are in constant achy/pain and I have no energy. I am left with Dr. Google. I have been very strict about cross contamination and my diet has been pretty limited to whole foods. I have come very close to just giving up trying to find answers, and let whatever happens, happen. But I always end up reading a post, or a news article about this or that and decide to give it a try.

Hang in there and I will be following your progress as I am always curious about WTH is going on with my poor body and if there are connections.

DHarwood

Archived

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


  • 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
      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
      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
      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
      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
      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.