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
MizzyLou
Posted

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
1desperateladysaved
Posted

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
bartfull
Posted

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
MizzyLou
Posted
  • Author

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
MizzyLou
Posted
  • Author

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
TraceyJo
Posted

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
dilettantesteph
Posted

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
AlwaysLearning
Posted

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
MizzyLou
Posted
  • Author

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
MizzyLou
Posted
  • Author

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
MizzyLou
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.