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

I Have Regressed After Two Weeks


MizzyLou

Recommended Posts

MizzyLou Newbie

For the first ten days after going gluten free, I felt great!  My loose stools and diarrhea had stopped almost immediately and I finally felt like I could eat.  I haven't been properly diagnosed as having Celiac or a gluten sensitivity, but decided to eliminate gluten to see if it would make a difference in IBS symptoms.  After the ten days of awesomeness, I started to revert back to old bathroom habits.  I have been careful not to eat anything that isn't gluten free.  I don't eat at restaurants, and have been using cookware, etc. apart from the rest of the family's.  I haven't been taking any medication or using any new toothpaste, toiletries, etc. that I didn't use when I first went gluten free.  There is always a chance of CC, but I am even more careful now than when I first started and experienced such a good change.  Does anyone have any idea why I would be regressing like this?  It is so disappointing, as I finally felt like my life was turning around.  I am going to try to eliminate all grains for a couple days to see if that makes a difference.  My fear is that my body got use to not having gluten and is returning to it's former self.  LIke I said, I don't know if gluten was ever my problem at all.  I feel like maybe I am just screwing myself up even more.  UGH, the frustration.  Feeling like I will never escape this hell that my body is confining me to.


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

Sorry, you are going through this. It would be nice to know what is going on.   I wouldn't automatically decide it isn't working.  You may be experiencing withdrawal, other intolerances, or Cross contamination.  Don't give up.  Keep being vigilant about gluten.

 

 

 

You didn't by chance start taking magnesium?

 

Get Well,   ***

 

D

bartfull Rising Star

If you start reading a lot here you will see that this is VERY common. It's almost as if we go through a "honeymoon" period designed to let us know we are on the right track and to encourage us by letting us get a glimpse of what it feels like to feel good. Now that your body has gotten a taste of good health it has gotten down to the business of healing. It might take a while before you get to feeling really good again, but you WILL get there. Start by keeping your diet simple, keeping a food diary, and by going organic if at all possible.

MizzyLou Newbie

Sorry, you are going through this. It would be nice to know what is going on.   I wouldn't automatically decide it isn't working.  You may be experiencing withdrawal, other intolerances, or Cross contamination.  Don't give up.  Keep being vigilant about gluten.

 

 

 

You didn't by chance start taking magnesium?

 

Get Well,   ***

 

D

Thank you for your reply.  I am happy to say that I think I am back on the right track today.  Ate very simple yesterday, and no problems this morning.  I am not throwing the towel in yet, and I need to remember that I can't go into panic mode every time I have a bad couple of days! Take care.

MizzyLou Newbie

If you start reading a lot here you will see that this is VERY common. It's almost as if we go through a "honeymoon" period designed to let us know we are on the right track and to encourage us by letting us get a glimpse of what it feels like to feel good. Now that your body has gotten a taste of good health it has gotten down to the business of healing. It might take a while before you get to feeling really good again, but you WILL get there. Start by keeping your diet simple, keeping a food diary, and by going organic if at all possible.

Thanks for your reply, once again.  I definitely think I overloaded my system.  If it didn't have gluten in it, I ate it!  I guess that's what I get for thinking that all my problems would immediately disappear!  Kept it really simple yesterday, and feeling much better today.  It's fish, rice, and bananas for me!  I also ordered a digestive enzyme (gluten-free of course) that I'm looking forward to trying.  We'll see if that will help my healing body process foods a little better.  Have a great day!

TraceyJo Newbie

This sounds like me. I had iron def anemia, elevated liver enzymes, abd pain with bloating and burping all the time. I had celiac negative blood and negative biposy. I took iron supplements for 3months and my anemia improved, did all kinds of liver function tests and they can't find anything to explain the liver enzymes ( abd sono negative). GI doctor told me nothing is wrong with me. I got sad, then mad, then decided to develop my own treatment plan since I did not get any help from doctors. I decided that I felt best when I had an empty stomach so I started only having liquids. The thought was liquids would digest faster and be easier on me. I had a colonoscopy the same day as the biopsy, so my insides were empty. After a couple days, I started feeling better, then one day I felt horrible ( bloated burping, burning pain in my right upper abd). I looked at the bottle of juice I had just finished and it had barley in it. So I decided maybe the problem was gluten after all. Stared eatting gluten-free and felt immediately better. About 2 weeks later I felt like crap again. So now is it withdraw or something else entirely ? I was so happy when I was feeling so good, because I thought this is great " I can control it" and now this....I am worried that it won't ever get better now. I've been feeling bad for about 4 days now. It's not as bad as before I went gluten-free, but it's enought to worry me. I am afraid that I won't get better and that maybe I don't have my answer, but for now I am going to stick with it and see what happens. I hope that you are feeling better and that the enzymes help you, I have not tried any supplements at all. They took me off the iron, because my hgb went up. They have no explanation for the anemia either. I'm sorry your not feeling good, but I have hope from the people that have made the same comments about feeling good initially and then bad again It gives me hope that I will improve too. We just need to hold on for awhile longer. At least that's what I'm telling myself right now.

dilettantesteph Collaborator

That happened to me too.  I got more sensitive to trace gluten contamination as time went on and I had to make modifications to my diet for the first year or so.  What really gets me is when the manufacturer changes something and I start reacting to something that was formerly safe.  It can take a long trial of elimination/challenge diets to figure out the source.  Keeping a food/symptoms journal helps a lot.  Keeping the diet simple and unprocessed helped me a lot.

 

It is easy to get overly concerned when we take a misstep.  It sure doesn't help that anxiety and depression are some of my glutening symptoms.


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



Celiac.com Sponsor (A8-M):



AlwaysLearning Collaborator

I wouldn't overlook other vitamin and mineral deficiencies as a cause of problems. Many of the problems I had hoped would improve when I went gluten free got worse instead, but seem to respond well to vitamin supplements. 
(Vitamin D and B12 both appear to be problematic for me though I'm sure there are others I haven't discovered yet).

Gluten reactions can include digestive upset, but seem to follow other regular patterns from even the smallest contamination. From what I've experienced and read, you can expect to be irritable in the first several hours, get a bad headache, then have some days of brain fog. I get this from even the tiniest bit of gluten, even if my digestion stays on track.

I know that everyone is different, but if you're not having these more classic gluten reactions, then I wouldn't rule out looking to something other than gluten as a possible cause of digestive problems. And if you are, I'd guess that you are getting gluten contamination.

How about doing a food diary, but also add to it the items that you use to prepare your foods? It could be that your new gluten-free toaster could have been contaminated when you weren't looking.

MizzyLou Newbie

This sounds like me. I had iron def anemia, elevated liver enzymes, abd pain with bloating and burping all the time. I had celiac negative blood and negative biposy. I took iron supplements for 3months and my anemia improved, did all kinds of liver function tests and they can't find anything to explain the liver enzymes ( abd sono negative). GI doctor told me nothing is wrong with me. I got sad, then mad, then decided to develop my own treatment plan since I did not get any help from doctors. I decided that I felt best when I had an empty stomach so I started only having liquids. The thought was liquids would digest faster and be easier on me. I had a colonoscopy the same day as the biopsy, so my insides were empty. After a couple days, I started feeling better, then one day I felt horrible ( bloated burping, burning pain in my right upper abd). I looked at the bottle of juice I had just finished and it had barley in it. So I decided maybe the problem was gluten after all. Stared eatting gluten-free and felt immediately better. About 2 weeks later I felt like crap again. So now is it withdraw or something else entirely ? I was so happy when I was feeling so good, because I thought this is great " I can control it" and now this....I am worried that it won't ever get better now. I've been feeling bad for about 4 days now. It's not as bad as before I went gluten-free, but it's enought to worry me. I am afraid that I won't get better and that maybe I don't have my answer, but for now I am going to stick with it and see what happens. I hope that you are feeling better and that the enzymes help you, I have not tried any supplements at all. They took me off the iron, because my hgb went up. They have no explanation for the anemia either. I'm sorry your not feeling good, but I have hope from the people that have made the same comments about feeling good initially and then bad again It gives me hope that I will improve too. We just need to hold on for awhile longer. At least that's what I'm telling myself right now.

I am so sorry to hear you are feeling so badly.  It's been a few days since I've been able to visit the website, so I am sorry for not replying earlier.  I completely share your frustration with the doctors, etc.  It is so unsettling to say the least, when everyone keeps telling you there's nothing wrong, yet your body clearly says there is.  You know, I've been reading more about the connection between the biliary system (liver, pancreas, gallbladder, etc.) and Celiac.  There have been several articles that I've run across that talks about this connection.  I don't have any links to send you now, but if you need me to I will post them for you.  I have long thought I had a problem with my pancreas or gallbladder.  I had a test that ruled out the gallbladder, but nothing other than blood work to check the pancreas.  I am wondering, have you had your gallbladder checked?  You mentioned ruq abdominal pain.  That can be caused by the gallbladder, as well as bloating and burping.  I have been having good and bad days.  Today was not so good, but it was also the start of the little monthly visit, so I am attributing the D to that.  I hope that you are eating okay.  You can't live on liquids.  I know that just the thought of eating can cause a lot of anxiety, but you have to.  I tried the supplements yesterday, and didn't notice much of a difference.  Forgot to take them to work with me today, so none so far.  We'll see.  Take care and feel better. I'm here if you need to vent. 

MizzyLou Newbie

That happened to me too.  I got more sensitive to trace gluten contamination as time went on and I had to make modifications to my diet for the first year or so.  What really gets me is when the manufacturer changes something and I start reacting to something that was formerly safe.  It can take a long trial of elimination/challenge diets to figure out the source.  Keeping a food/symptoms journal helps a lot.  Keeping the diet simple and unprocessed helped me a lot.

 

It is easy to get overly concerned when we take a misstep.  It sure doesn't help that anxiety and depression are some of my glutening symptoms.

Oh my goodness, I can totally relate to the depression and anxiety thing.  Thanks for your advice.  I can tell this is going to be a journey of trial end error.

MizzyLou Newbie

I wouldn't overlook other vitamin and mineral deficiencies as a cause of problems. Many of the problems I had hoped would improve when I went gluten free got worse instead, but seem to respond well to vitamin supplements. 

(Vitamin D and B12 both appear to be problematic for me though I'm sure there are others I haven't discovered yet).

Gluten reactions can include digestive upset, but seem to follow other regular patterns from even the smallest contamination. From what I've experienced and read, you can expect to be irritable in the first several hours, get a bad headache, then have some days of brain fog. I get this from even the tiniest bit of gluten, even if my digestion stays on track.

I know that everyone is different, but if you're not having these more classic gluten reactions, then I wouldn't rule out looking to something other than gluten as a possible cause of digestive problems. And if you are, I'd guess that you are getting gluten contamination.

How about doing a food diary, but also add to it the items that you use to prepare your foods? It could be that your new gluten-free toaster could have been contaminated when you weren't looking.

Thank you for your reply.  I definitely haven't ruled anything out yet.  The doctors just haven't been able to find anything wrong even though I keep feeling more and more rotten.  I have started a food diary.  Hopefully that will provide some answers.  Take care.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Me,Sue posted a topic in Introduce Yourself / Share Stuff
      0

      Knowing what to do when feeling unwell.

    2. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    3. - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

    5. - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,852
    • Most Online (within 30 mins)
      7,748

    LG2
    Newest Member
    LG2
    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

    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • 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.