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

New Here And Going Through Changes...

TammyJean

By TammyJean
in Coping with Celiac Disease

Recommended Posts

TammyJean Newbie
TammyJean
Posted

Hi All,

I just found out that I have Celiacs and have now been gluten free for 1 week. The first few days were really hard but I think I am getting good at determining where hidden gluten is. I personally had bad bloating/gas and an upset stomach after having eating gluten...but now that I have been off of it I have started having HORRIBLE heartburn (so bad it feels like a tight belt around my chest and sometimes I feel the indigestion under my ribs) it has been constant for 3 days. I have NEVER had heartburn before. Did any of you go through withdrawal symptoms or weird changes like this when you changed your diet. I am taking probiotic, prilosec and digestive enzymes, and am leaving now to pick up a few more gut repair vitamins and herbs. Thank god I have a friend (who is a nurse) who has had this for 8 years so the transition is easier. Just wondering if this is all normal to go through these changes and what you all went through. *My gas/bloating is better, but this heartburn is all new! Any advice is greatly appreciated.

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

Celiac.com Sponsor (A8-M):


The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Hi All,

I just found out that I have Celiacs and have now been gluten free for 1 week. The first few days were really hard but I think I am getting good at determining where hidden gluten is. I personally had bad bloating/gas and an upset stomach after having eating gluten...but now that I have been off of it I have started having HORRIBLE heartburn (so bad it feels like a tight belt around my chest and sometimes I feel the indigestion under my ribs) it has been constant for 3 days. I have NEVER had heartburn before. Did any of you go through withdrawal symptoms or weird changes like this when you changed your diet. I am taking probiotic, prilosec and digestive enzymes, and am leaving now to pick up a few more gut repair vitamins and herbs. Thank god I have a friend (who is a nurse) who has had this for 8 years so the transition is easier. Just wondering if this is all normal to go through these changes and what you all went through. *My gas/bloating is better, but this heartburn is all new! Any advice is greatly appreciated.

No doubt folks with similar experiences giving up gluten will show up any minute, but I had an odd experience more recently giving up other things. Giving up gluten was no problem for me at all, but last month I gave up dairy and fruits and more recently gave up soy. Suddenly, tomato sauce, which never gave me any trouble at all, started causing very significant acid reflux. So I'd say any change in your diet, however seemingly minor (I wasn't using much soy, and when I gave it up was when the tomato problem started) can cause surprising effects in your digestive system.

Hope it clears up soon, and welcome to the board.

Gfresh404 Enthusiast
Gfresh404
Posted
Hi All,

I just found out that I have Celiacs and have now been gluten free for 1 week. The first few days were really hard but I think I am getting good at determining where hidden gluten is. I personally had bad bloating/gas and an upset stomach after having eating gluten...but now that I have been off of it I have started having HORRIBLE heartburn (so bad it feels like a tight belt around my chest and sometimes I feel the indigestion under my ribs) it has been constant for 3 days. I have NEVER had heartburn before. Did any of you go through withdrawal symptoms or weird changes like this when you changed your diet. I am taking probiotic, prilosec and digestive enzymes, and am leaving now to pick up a few more gut repair vitamins and herbs. Thank god I have a friend (who is a nurse) who has had this for 8 years so the transition is easier. Just wondering if this is all normal to go through these changes and what you all went through. *My gas/bloating is better, but this heartburn is all new! Any advice is greatly appreciated.

Any kind of sudden change in anyone's diet is going to cause some kind of upset. So yes, what you are experiencing is very common and should pass rather quickly.

I have been gluten free for nearly 9 months and still get the occasional heartburn if I eat a lot of grains.

You also might want to consider the fact that too many digestive enzymes and probiotics could create too much stomach acid, which could be the cause of your heartburn. It is unlikely though, as heartburn is usually due to not enough stomach acid. But it is still something to look into.

I myself am sort of a pill junky, but I have learned that it is never good to take too many supplements at one time. It is always better to start off gradually and build yourself up. Also, remember that none of these holistic "medicines" are regulated by the FDA. So it is important to buy from a trusted company and to do a little research on anything that you are taking.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have experienced the horrible pain that you are going through. The most helpful thing for me was name brand Pepto Bismal Liquid. It would stop the pain within a few minutes. Hopefully your freind has told you of the dangers of crosscontamination and has told you what kitchen items you can still use and what you need to toss or donate. Just in case she hasn't.... You need a new cutting board, if you use wooden spoons they need to be changed out to new ones, scratched teflon or old pans for gluten foods that can not be cleaned to sparkling new state need to be replaced. Don't share a toaster, get a new one for your own use if there are gluten eaters in your household make sure they use the old one not yours. You also need your own condiments, pnut butters and jelly etc. If you have spices or sugar that you might have dipped a gluteny spoon in toss them and replace. Also something may don't think about is any significant other who is eating or drinking gluten needs to throughly brush their teeth and rinse their mouth before any 'deep' kissing. Some of us also benefit from making sure all toiletries and makeup are gluten free. There is a lot to being gluten free that involves much more than just food but it gets easier in time. I hope you are feeling better soon, it is not unusual to have some ups and downs for a bit.

amandabear20 Rookie
amandabear20
Posted
Hi All,

I just found out that I have Celiacs and have now been gluten free for 1 week. The first few days were really hard but I think I am getting good at determining where hidden gluten is. I personally had bad bloating/gas and an upset stomach after having eating gluten...but now that I have been off of it I have started having HORRIBLE heartburn (so bad it feels like a tight belt around my chest and sometimes I feel the indigestion under my ribs) it has been constant for 3 days. I have NEVER had heartburn before. Did any of you go through withdrawal symptoms or weird changes like this when you changed your diet. I am taking probiotic, prilosec and digestive enzymes, and am leaving now to pick up a few more gut repair vitamins and herbs. Thank god I have a friend (who is a nurse) who has had this for 8 years so the transition is easier. Just wondering if this is all normal to go through these changes and what you all went through. *My gas/bloating is better, but this heartburn is all new! Any advice is greatly appreciated.

I am in the same situation you are. I have been gluten free for almost two weeks, and im experiencing weird heartburn and gas/diarrea only when I drink milk...but im stubborn and I won't give up milk because cereal=my best friend. I know theres soy milk but I don't feel like changing. When I was on gluten I had the same symptoms as you plus a few more (irritable, depression, migraines, fatigue). I know how you feel starting out, and I also have a couple friends that have been doing this for a lot longer so it does help. hang in there! it will get easier. I've been told the withdrawal symptoms will go away with time, because it is a healing process.

:)

ravenwoodglass Mentor
ravenwoodglass
Posted
I am in the same situation you are. I have been gluten free for almost two weeks, and im experiencing weird heartburn and gas/diarrea only when I drink milk...but im stubborn and I won't give up milk because cereal=my best friend. I know theres soy milk but I don't feel like changing. When I was on gluten I had the same symptoms as you plus a few more (irritable, depression, migraines, fatigue). I know how you feel starting out, and I also have a couple friends that have been doing this for a lot longer so it does help. hang in there! it will get easier. I've been told the withdrawal symptoms will go away with time, because it is a healing process.

:)

You really need to drop the milk for now. There are some good subs for it that are really going to be a lot better for you, at least until you heal. I personally would not switch to soy, go with a safe rice milk, NOT Rice Dream, Pacific brands is safe as is the Wegmans brand. Almond or hemp milk are also good choices. You could have casien intolerance in which case milk may remain off limits even after you have healed but at the very least you are likely dealing with lactose intolerance. The same area that is damaged by celiac is the area that is responsible for forming the enzymes you need to digest cow's milk. Chances are you will be able to add it back in when you are finished healing.

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
      133,190
    • 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

    • 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.