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

Low B12, Tinea Veriscolor, Gluten Problems?

hazelbrown10

Recommended Posts

hazelbrown10 Rookie
hazelbrown10
Posted

Hi everyone,

I'm glad I found this forum! Hopefully you're not all sick of reading "what's going on?" type posts.

I have suspected gluten problems for a few years now, after having all the usual symptoms - tummy aches, digestive issues, fatigue, fuzzy head, need to eat all the time. I first noticed these problems in 2006 after going through the worst cold ever, or perhaps it was bronchitis. In 2008 I went gluten-free for a summer (and felt awesome!) and during that time had the tTG test done and the doc said "no celiac!" Cool, so I ate gluten again. Now I know that I should have been eating gluten at the time of the test, so the doctor was wrong to say it didn't matter. The result was 1, so "negative" level. I just found that out by going to the office and asking for a copy of the test last week.

Two years later I am still feeling the same, but the fuzzy head and hunger is the worst now. Believe it or not, only the gynecologist actually cared about my symptoms, which also include tingly fingers/feet. She ordered iron and B12 levels taken, iron was normal but B12 was only 277. So she says take supplements, which I am doing. I have also had what a nurse said is "tinea versicolor" on the sides of my trunk for about a year, and no prescription shampoos or even tea tree oil got rid of it.

This summer I went gluten-free again, and within days all of my symptoms are gone except foot tingling, and the tinea versicolor is almost gone too! That's what has surprised me the most, since it has stubbornly remained no matter what I did before going gluten-free.

I am wondering what you guys think - should I go back on gluten for a month or so, and then insist on the complete celiac panel? I'm aggravated that my doc thinks being gluten-free is OK for the celiac tests, AND that she only ran ONE test! I have read about being IgA deficient, but since she didn't order the total IgA I don't know if that's a possibility or not. Arg! Coupled with the low B12 - and I'm only 26 and NOT a vegetarian or dairy-free! So why would that happen? - and tinea, I think the doctors should be trying harder to figure out what's going on. I don't even know if my doctor knows about the tinea OR the B12, since I was examined by different people for those. Modern medicine is bumming me out!

I will continue to be gluten-free after the tests no matter the results, but what I've heard about risks for other autoimmune diseases if it IS celiac, I'd just rather know for sure.

Thanks for any advice! You all seem much more informed than my doctor :)

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Only you can make the choice to gluten yourself for testing. You would need to go back to a full gluten diet for 2 to 3 months for testing. If you see a recurrance of your issues when you add gluten back in then you really have your answer, IMHO. You still may have a false negative result on the testing even after the challenge.

While once we have one autoimmune disease we can have a tendency to develop others I think your chances do go down if you are celiac and compliant with the diet. Not saying you never would develop another for sure, some of us do.

elainer Newbie
elainer
Posted

You can get a stool test done for Celiac without going back on gluten, by going to enterolab.com. This is what my son & husband used because our Dr's do not know anything about celiac, and didn't believe the symptoms my son was having had anything to do with celiac. I was diagnosed 5 years before them by a holistic Dr. who is no longer practicing. She is the one who told me about the site. Hope this helps.

sherrylynn Contributor
sherrylynn
Posted

Don't know if this will help, but my mom had Tiena versachola and she had it for more than 10 years. It finally went away after she had to have chemotherapy for breast cancer. It has not come back since then. She was told that it is a fungal infection but tea tree oil and selsun blue did not help it go away.

I don't recommend going on chemo to get rid of it though. The chemo ruined her memory.

hazelbrown10 Rookie
hazelbrown10
Posted
  • Author

Hi everyone,

Thanks for the comments. I will post an update if the doctor says anything useful, which hopefully she will. In the meantime I will remain gluten free :)

Tinea versicolor... it's a weird thing. It's not gross or anything, just THERE... inexplicable! Tea tree oil didn't work for me either, though it smelled like it was strong enough to kill anything ;)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.