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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.