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

Continuing / New Symptoms


Atroposian

Recommended Posts

Atroposian Newbie

Hi All -

So I am a self-diagnosed celiac. I didn't understand about the tests for celiac until after I had gone off gluten and as I'm sure many have said before me, there was no way I was about to start eating it again for confirmation of the actual disease. Whether I had celiac itself or not, I knew that I felt horrible when eating gluten and that was all I needed to know.

I've been off of gluten for nearly a year now and I've seen tremendous improvement in so many areas regarding my health. I feel a hundred times better every day than I have for years. However, I am still struggling with some continued and new symptoms, mainly physical pain, nausea, and bloating. These are not nearly as debilitating as they used to be, but they are a serious issue for me. The pain is mainly in my back and very, very occasionally in my chest as a broad, radiating pain. The nausea generally occurs in the morning and the bloating is after some meals, generally ones involving some type of rice or grain.

The biggest problem is the pain in my back and sometimes chest. It doesn't really feel like a muscular soreness, if you know what I mean. At first I thought it was clearly related to going hungry for a long time (like at work, where I have an physically active and fast-paced job) but now I'm not so sure. I have even been wondering if it was stress related, but I keep feeling like it must be in some way connected with my food and digestive system. It really, really hurts. It's not just a brief, nagging pain. It's something that makes me unable to continue with my work at times. Has anyone else experienced anything like this?

I'm also wondering if anyone has tried the Specific Carbohydrate Diet. Because of these lingering and bothersome symptoms, I've been thinking about trying the grain/sugar/processed junk-free SCD in the hopes that it will help me resolve whatever my body is still struggling to process. Thoughts?

I've been stalking this forum ever since I started gluten-free living and it's been a great help so here's to hoping someone might have some input for my situation!


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

I had to go SCD (modified for my own needs) at first. I think I could make mortar and brick out of almonds, and cover it in marzipan adobe by now :D .

Keeping a food diary helps. In the past 3 years I had gotten much more adventuresome, and as a result, I was eating things that do not work for me. Tracking down the culprit ingredients was very challenging. Also, packers and manufacturers of food and ingredients constantly change how they do things in terms of gluten. There are many, many packaged foods I have had to give up because my body said they were cross contaminated, even if the food manufacturer said they were not. Also, some companies either move their facilities to ones co-processing gluten, or change suppliers, and they went from "safe" gluten free to "eat at own risk" status. One of the biggest bummers right now is where I used to get inexpensive almonds now has warnings on the bags about being processed in a wheat environment, when they didn't have that particular allergen listed before, so I have been stuck getting them somewhere else for a lot more money. I tried the almonds in the new packaging at the original store and it's a good warning. :ph34r: I may try to talk them into using a different packer and become safe again, since I have sent a lot of people there, plus I end up spending beaucoup bucks $$$ there, but I'm not optimistic. :(

GFinDC Veteran

HI Atroposian,

Welcome to the forum! The pain you describe could be an ulcer or something else. I suggest you see a doctor about it. They do have tests now for the H. Pylori bacteria, which causes most ulcers. It's worth getting tested so you know if that is the cause.

frieze Community Regular

yup, might well be an ulcer....need to get it checked out.

saintmaybe Collaborator

Depends on where the pain is. I had lower back and hip pain I at first thought was a direct result of my job working in a garden center. Then I found out my brother has ankylosing spondylitis, and lo and behold so do I. That is a WORST case scenario, and It's doubtful that's your specific issue. It could be the early stages of bursitis or sciatica, generalized inflammation of the joint. I generally eat primal, and it has helped some. It's definitely toned my migraines down to manageable levels. What's clear is that there's something else going on and you should get it checked out.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748

    Lostcha
    Newest Member
    Lostcha
    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.