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

Am I Regressing?

Jen H

By Jen H
in Coping with Celiac Disease

Recommended Posts

Jen H Contributor
Jen H
Posted

Hi everyone,

I found out I have celiac disease over a month ago. I've followed the gluten-free diet faithfully since then and I was feeling better after 2 weeks. I am starting to have stomach pain, nausea, brain fog, and exhaustion again and I was wondering if it is normal to have symptoms during the healing process? Did anyone begin to make progress and then have symptoms again?

Jen

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

Celiac.com Sponsor (A8-M):


rmmadden Contributor
rmmadden
Posted

Jen,

This happens all the time. I've been gluten-free for 9-months now and I still go up-and-down with the symptoms. Everyone is different blah, blah, blah....you know the drill by now. I'm hoping that as time goes by and my intestine's heal more that I can live without celiac disease occupying my EVERY THOUGHT. That being said I honestly don't believe I'll ever be without some celiac disease related symptoms going on so I just try to make the best of it.

Best of Luck!

Cleveland Bob B)

Jen H Contributor
Jen H
Posted
  • Author

Thanks, Cleveland Bob. I have been so careful about reading labels I'm becoming paranoid. It took about a year for doctors to figure out my diagnosis, so I guess I can't expect my symptoms to go away overnight. I"m just glad to know that this is a normal part of the process.

Jen

drewsant Rookie
drewsant
Posted
Hi everyone,

I found out I have celiac disease over a month ago.  I've followed the gluten-free diet faithfully since then and I was feeling better after 2 weeks.  I am starting to have stomach pain, nausea, brain fog, and exhaustion again and I was wondering if it is normal to have symptoms during the healing process?  Did anyone begin to make progress and then have symptoms again? 

Jen

<{POST_SNAPBACK}>

I was doing great for about a month, then the last week or so I've had big stomach problems again, and missed parts of 2 days of work, today included. I'm starting to feel a little paranoid as well, or that I really don't have Celiac and it's something else entirely.

ravenwoodglass Mentor
ravenwoodglass
Posted
I was doing great for about a month, then the last week or so I've had big stomach problems again, and missed parts of 2 days of work, today included. I'm starting to feel a little paranoid as well, or that I really don't have Celiac and it's something else entirely.

<{POST_SNAPBACK}>

Check diligently for a source of cross contamination or a hidden gluten source. Have you made your kitchen gluten-free or are you trying to cook in a gluten filled kitchen? Make sure you get a new toaster and clean like the health deptartment is coming if gluten containing foods are still in use in your home. It is best for the newly diagnosed to try and avoid fast food places, as a former head chef I can attest to the fact that some food service workers are not all that cooperative about observing the things neccessary for us like changing gloves and wiping serfaces before preparing our food. Don't drink soda out of a speed bar, if you go out for a beverage make it in a can or bottle to be safe. My son kept getting sick whenever he went to play pool, we finally realized it was the speed bar at the tavern he played at. Don't lose heart, contamination is all over out there, I learned the hard way that unless it is labeled gluten-free I need to call the company before I consume. Good luck.

KaitiUSA Enthusiast
KaitiUSA
Posted

I have been gluten free for almost 2 years and it took me a while to get back to normal. I would go a week feeling great and then have a few bad days. I was so up and down for quite some time.

Just make sure everything is gluten free(not only food but products like cosmetics, shampoos, soaps,lotions, etc)

Other than that you just have to give your body some time. Just think about the years of damage and chaos that your body had to go through fighting it. Now your body is healing and it can be a long and hard process. Everyone is different with times it takes for symptoms to go away.

Jen H Contributor
Jen H
Posted
  • Author

Thanks for the replies. Do you think am I unintentially glutening myself or is my body just taking time to heal? This is probably a dumb question, but why are the soda speed bars potentially harmful? Is it because other sodas have gluten in them and there can be cross contamination? Do you eventually get to a point where you feel healthy almost everyday?

:) Jen

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks for the replies.  Do you think am I unintentially glutening myself or is my body just taking time to heal?  This is probably a dumb question, but why are the soda speed bars potentially harmful?  Is it because other sodas have gluten in them and there can be cross contamination?  Do you eventually get to a point where you feel healthy almost everyday?

:) Jen

<{POST_SNAPBACK}>

It is not just the cross contamination issue, although thats enough, Many fountain mixes are formulated differently from the stuff you buy in the store., most places won't stand on their head for you to read the labels and it's kind of a safe not sorry senario. Also for me I don't know what is in Sanitabs that are used in the 3rd rinse (read they sit in this, it is not rinsed off) and I have always gotten an upset stomach from bar glasses. Take heart though you will feel better, it takes us each different amounts of time to heal but healing will come and this is a great place for advice. I know I have learned a lot from everyone. :)

Jen H Contributor
Jen H
Posted
  • Author

Ravenwoodglass,

that's funny you mentioned the soda fountain. When I go out to a local bar with my friends I usually get a sprite. Each time I come home with stomach pain. I never put it together. I kept mentioning it to my husband, but we both thought it was just coincidental. I'll have to bring my own from now on.

:) Jen

drewsant Rookie
drewsant
Posted
Check diligently for a source of cross contamination or a hidden gluten source. Have you made your kitchen gluten-free or are you trying to cook in a gluten filled kitchen? Make sure you get a new toaster and clean like the health deptartment is coming if gluten containing foods are still in use in your home. It is best for the newly diagnosed to try and avoid fast food places, as a former head chef I can attest to the fact that some food service workers are not all that cooperative about observing the things neccessary for us like changing gloves and wiping serfaces before preparing our food. Don't drink soda out of a speed bar, if you go out for a beverage make it in a can or bottle to be safe.  My son kept getting sick whenever he went to play pool, we finally realized it was the speed bar at the tavern he played at.  Don't lose heart, contamination is all over out there, I learned the hard way that unless it is labeled gluten-free I need to call the company before I consume. Good luck.

<{POST_SNAPBACK}>

I live alone, and don't have anything in my house tht has gluten to my knowledge. I don't even own toaster, don't eat bread of any kind to be toasted anymore. I've been eating basically just fruits and vegetables, and fresh meat. And gluten-free chocolate, otherwise I'd probably go crazy. Checked my shampoo and soap, and all is gluten-free, and I don't wear makeup, so not getting it there. I'm thinking it may be something else, because I did really well for almost a month. I think i'm going to start keeping a food diary and symptom diary to see if it may be some other food that I have an intolerance to.

Tigg Newbie
Tigg
Posted
Hi everyone,

I found out I have celiac disease over a month ago.  I've followed the gluten-free diet faithfully since then and I was feeling better after 2 weeks.  I am starting to have stomach pain, nausea, brain fog, and exhaustion again and I was wondering if it is normal to have symptoms during the healing process?  Did anyone begin to make progress and then have symptoms again? 

Jen

<{POST_SNAPBACK}>

Wow same kinda guestion I have. I have been gluten-free since MAR 2000. At that time I lived on a small barrier Island in NC. The availablity of just simple luxury foods such as premade sandwich foods, pasta...ect... was VERY limited. Although I never was hungery. Made everything by myself. A yr. and a half ago I moved to a larger city with more available premade foods. Plus noted a change around that time in the safe and forbidden list.

I gained 50 lbs....in 6 months! I look pregnant! BM habbits are approx. 5 lose stools a day.

What have I done wrong? Have the same as you...stomach pain, brain fog and exhaustion. <_<

Anyone can help us.......???? ideas????

Tig

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. xxnonamexx
      - 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

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

      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...
    4. 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...
    5. 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...
  • 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):

  • Upcoming Events

  • Posts

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

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      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
      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:    
×
×
  • 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.