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

Gluten Free Since August 10 2012 - Feeling Tired


Canadian

Recommended Posts

Canadian Newbie

Hello all,

I have had chronic rhintis for 5 years or so now and have been taking nasal steroids to deal with it. I wanted to be able to not have to use the nasal sprays so I did a sensitivity test on aug 10 and it came up with gluten as something I had a bad sensitivity too. I cut out gluten and other things right away.

So I tried not using the nasal sprays much while going gluten free so I could gauge what would happen. After about 4 or 5 days I felt absolutely wonderful. My sinuses were quite clear and I did not really have much brain fog which I used to get quite a bit. Although I did have licorice on August 19 which I did not know contained gluten until after I had ate it. I noticed I did not feel so great that night and the next day was really quite bad and I had a lot of brain fog. Since the licorice I have not had any gluten products that I know of and am rarely taking the nasal sprays.

The problem I am facing now is fatigue. For the last week or so, I have slept my normal 7 or 8 hours, but when I wake up in the morning, I feel like I have barely slept at all and I feel fatigued for the whole day. But I assume this is just one type of withdrawal symptom that is possible. I understand that my fatigue is supposed to go away eventually, but it is very difficult to deal with.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It could be withdrawl but it also could be your body is still fighting the glutening you had. Some of us can take quite a while to go through the full cascade of symptoms that they get. And those symptoms can be different for different people. I was glutened about a month ago and just started feeling normal a couple days ago.

1desperateladysaved Proficient

One thing I feel about natural remedies like diet: If there is any reaction at all it is good. If you feel good or bad something is happening.

I had about a week of bliss before falling into withdrawl or foggy dizziness of dispair. I don't know if it was withdrawl or contact with gluten and other problem foods.

I was doing something right before I got off gluten. I was on an excellent diet and supplements. I had improved in health the past 5 years. I am only about 4 months grain free. I have had some really great days lately; I have had confusing bad days. I am always trying to figure out what went wrong. I believe my supplements are one of the reasons I am improving. I have 30 years to make up for.

My foggy dizziness left at about 3 months. My last reaction to somethingoranother resulted in no fogginess.

I am not saying that you will have the same results, but there is hope. Hang on for the ride.

I hope you can learn and stay on your diet. I hope you will soon be writing about an awesome day. But if you aren't (yet) hang in there because there is hope. You can write and tell if it seems unfair you are still foggy 3 months.

Lastly, I hope you can enjoy gluten free licorice one day.

Diana

txplowgirl Enthusiast

It could be withdrawal or it could be an intolerance. A lot of secondary intolerances pop up when going gluten free.

Dairy causes my sinus's to act up so bad my sinus's swell as well as the roof of my mouth swells and blisters pop up. When that happens I usually have about a week and a half of pure heck.

Archived

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

  • 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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - 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

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      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
      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
      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:    
×
×
  • 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.