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

Are Improvements Steady After Starting gluten-free Diet, Or Are There Ups And Downs?


StacyA

Recommended Posts

StacyA Enthusiast

I've read recent and old posts, and I see that it varies on how long it takes until people feel better after going gluten-free - but is the improvement steady, or are there ups and downs? I'm a week and a half into gluten-free - and I was amazed at how quickly my abdominal bloating and gurgling decreased, however today the bloating and gurgling is back, so I don't whether to look for a possible glutenization or if it's part of standard ups and downs.

(I made meatballs today with what I thought were all gluten-free items, and I froze a ton of them, so if they're the culprit I'll cry: ground turkey, ground beef, ground pork, Heinz ketchup and wors. sauce - and I called Heinz about the wors. sauce since it wasn't on their website and I was told it's gluten-free - and spices from my spice drawer that should all be okay.) I used an old electric teflon skillet that I actually threw away after I was done because it was too scratched up.

Are ups and downs expected or suspicious?


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

I think it's different for everyone, but I have definitely had ups and downs. I felt fantastic after 3 days :rolleyes: Then about week into it, I got bloated. I had never been bloated before. Then the strange digestive sounds and gas began. I never gurgled before the gluten-free diet, but my tummy became a symphony. And terrible gas- I was afraid to get too close to people :huh:

I also gained a ton of weight via fluid retention. It's been 7 weeks and hasn't really gone away yet.

Mostly though, I feel incredibly good, unless I accidently gluten myself, which has happened a couple of times. I am hopeful that everything will simmer down and get back to "normal."

Good luck to you! I've learned so much in the last 2 months, and everyone here is a friend!

lovegrov Collaborator

The ingredients sound OK but the teflon pan might not have been. There are those who say scratched up teflon retains gluten. If symptoms return after you eat the meatballs again, I think you'd have to consider tossing them.

richard

babysteps Contributor

For me, gurgling would be gluten, not an up-and-down. But there are ups & downs! And everyone's body is different.

Are you eating dairy? I was fine with dairy, and am now, but after a week gluten-free decided to cut it out for a while (many posters have noted initial dairy issues when going gluten-free). I tried dairy after 6 wks or so gluten-free and it was okay again by then.

Good luck!

LDJofDenver Apprentice

Definitely ups and downs, and an occasional accidental glutening. It's a process. I saw some things improve immediately! Almost all my neuro problems (pins and needles, ataxia, brain fog) have gone away completely (it's about a year now, since gluten-free). My GI doc said it could be up to two years (the healing process), which might depend on the level of damage, how long you've had it, how old you are when diagnosed, etc.

Other than the teflon pan, could there have been other cross contamination possibilities? Even toast crumbs can hurt you. I even got a new hand mixer after taking a good look at the one I've had 15 years -- as clean as I am, and as much as I carefully cleaned that mixer over the years, you can see trace elements of flour/batter up in any opening/vents, etc.

Wolicki Enthusiast
For me, gurgling would be gluten, not an up-and-down. But there are ups & downs! And everyone's body is different.

Are you eating dairy? I was fine with dairy, and am now, but after a week gluten-free decided to cut it out for a while (many posters have noted initial dairy issues when going gluten-free). I tried dairy after 6 wks or so gluten-free and it was okay again by then.

.

Good luck!

This confuses me. Most say they had gurgling before going gluten-free. I never had gurgling til after. It seems to be getting better, but it's still a symphony in my tummy. Any thoughts?

redsidekick Apprentice

I don't have thoughts on why, but agree with you. No gurgling before I went gluten free, but it started about a month after I went gluten free and now after 7 months has started to subside considerably. Even when I didn't have any cc issue, my stomach would rumble.

And to the post title, yes, I had ups and downs, for every 2 steps forward feeling better, there was one step back. It got really frustrating when you thought you turned a corner, and then bam, stomach pain again, or muscle twitching, bloating, etc. I had to remind myself not to look back over the past week, but what was it like a month, two months earlier. When I saw the big picture, I saw definite improvement, the problems were not as bad as those that first sent me to the doctor.


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast
I don't have thoughts on why, but agree with you. No gurgling before I went gluten free, but it started about a month after I went gluten free and now after 7 months has started to subside considerably. Even when I didn't have any cc issue, my stomach would rumble.

And to the post title, yes, I had ups and downs, for every 2 steps forward feeling better, there was one step back. It got really frustrating when you thought you turned a corner, and then bam, stomach pain again, or muscle twitching, bloating, etc. I had to remind myself not to look back over the past week, but what was it like a month, two months earlier. When I saw the big picture, I saw definite improvement, the problems were not as bad as those that first sent me to the doctor.

Yes, it i s so frustrating to go through all the adjustments your body has to make, but I will take these new problems any day compared to what it as like before! I never, ever had bloating, gas or edema before, but I do now, 2 months after gluten-free. About 2 weeks after going gluten-free, I gained 25 pounds, literally overnight :angry: Most of it is still with me :angry: , 7 weeks later :( The bloating and gas pain was almost unbearable for about 3 weeks :( , then I started tooting- all the time! Very feminine, yes? :(

:( But you are right. In the grand scheme of things, I am much better today than I was 2 months ago, for sure! But it sure would make me :D to have this extra fluid gone!

StacyA Enthusiast

Just great. I don't think I had celiac's until 2-3 months ago, when an intestinal parasite triggered it - so I was certain my recent bloating would go away with my brand-new gluten-free diet. Now it sounds like I need to put my hipster pants away for a looooong time! Glad my husband's belly is bigger than mine (at least for now - knock on wood) - so he can't complain.

jabberwife Explorer

I'm about 2 1/2 months gluten-free, with the exception of my 1-day "challenge" (where I ate a small roll and a few bites of bulgur salad, only to find out that gluten was indeed the enemy!), and I've had ups and downs. Within the first few days, I was exhausted, I'm guessing from a withdrawal of gluten. Then I started to improve, and my digestive symptoms started to subside. However, lately they seem to have somewhat returned. I still fight C all the time, and it seems like a lot of things cause me gas and bloating, and I'm back to taking the digestive enzymes (to help with bloating and gas, hopefully), and I just started aloe vera juice in addition to my magnesium supplementation, in an effort to combat the C. But, thinking back (and also remembering my "challenge"), my neuro symptoms and the swelling/tingling in my feet have gone away. No more brain fog! So while I'm not 100% sure whether my lingering symptoms mean I still need to take something else out of my diet, or just be patient with the healing, I do know I am feeling better.

Wolicki Enthusiast
I'm about 2 1/2 months gluten-free, with the exception of my 1-day "challenge" (where I ate a small roll and a few bites of bulgur salad, only to find out that gluten was indeed the enemy!), and I've had ups and downs. Within the first few days, I was exhausted, I'm guessing from a withdrawal of gluten. Then I started to improve, and my digestive symptoms started to subside. However, lately they seem to have somewhat returned. I still fight C all the time, and it seems like a lot of things cause me gas and bloating, and I'm back to taking the digestive enzymes (to help with bloating and gas, hopefully), and I just started aloe vera juice in addition to my magnesium supplementation, in an effort to combat the C. But, thinking back (and also remembering my "challenge"), my neuro symptoms and the swelling/tingling in my feet have gone away. No more brain fog! So while I'm not 100% sure whether my lingering symptoms mean I still need to take something else out of my diet, or just be patient with the healing, I do know I am feeling better.

hang in there! I finally gave up and eliminated dairy :( and my digestive issues have subsided. I also eliminated all grains (hopefully not forever) because every time I ate them, I gurgled and tooted my way through the day :rolleyes::rolleyes::o

The food diary really helps for tracking reactions. Now if I could only get this edema to go away!!

Lost Scribe Newbie

The biggest surprise to me when I went gluten free was that I went through a 2 week "detox" period. I felt worse than ever and almost gave up. At the end of the 2 weeks, though, I was clear headed and felt better than I had in my life.

Since then, I still have ups and downs. There are days where I'm sure I've been contaminated but can't figure out how. All part of the process I suppose.

Northern Celiac Newbie

Lots of ups and downs Stacey,

Especially if you let the monster out of it's cave by inadvertantly eating gluten. It also depends on how sensitive you are as well. I am extremly sensitive so i have to be very careful. ALSO VERY IMPORTANT KEEP A FOOD DIARY. You will find it helps to track things especialy if something goes wrong. best of luck

debmidge Rising Star

Husband had ups and downs a lot for few few months in the "adjustment Period" - perhaps unintentional glutening happened. Once he got on correct track, there was still some ups and downs - total "up and downs" time was one year.

Guest Dori827

This is heartening to read. I was diagnosed 2 weeks ago, but only because of malabsorption and consequent adrenal problems. Fortunately it only took me 3 doctors to find this out. Also learned I have SEVERE dairy allergy. I am extremely conscientious and have read six books already and am feeling better about eating. HOWEVER, I rarely, if ever, had gastro issues, and now, it is terrible!! I didn't "feel" bad before (although my body wasn't happy!), but I'm discouraged by my many trips to the ladies room and the gurgling you all are talking about.

My doc said 2 months before he would re-test my nutritional markers, and I'm just hoping my gut starts feeling better...I cannot imaging living like this much longer! (and I do miss my cream cheese danish). But I lost 4 lbs in 2 weeks time, so I'm hoping that continues for another few weeks!

Wolicki Enthusiast
This is heartening to read. I was diagnosed 2 weeks ago, but only because of malabsorption and consequent adrenal problems. Fortunately it only took me 3 doctors to find this out. Also learned I have SEVERE dairy allergy. I am extremely conscientious and have read six books already and am feeling better about eating. HOWEVER, I rarely, if ever, had gastro issues, and now, it is terrible!! I didn't "feel" bad before (although my body wasn't happy!), but I'm discouraged by my many trips to the ladies room and the gurgling you all are talking about.

My doc said 2 months before he would re-test my nutritional markers, and I'm just hoping my gut starts feeling better...I cannot imaging living like this much longer! (and I do miss my cream cheese danish). But I lost 4 lbs in 2 weeks time, so I'm hoping that continues for another few weeks!

Hang in there! Probiotics and a good digestive enzyme help a lot, so get some if you haven't already. I am going to the doctor tomorrow to beg her test me for additional intolerances. It's just too hard to figure it alone. Wish me luck!

Guest Dori827
Hang in there! Probiotics and a good digestive enzyme help a lot, so get some if you haven't already. I am going to the doctor tomorrow to beg her test me for additional intolerances. It's just too hard to figure it alone. Wish me luck!

So, where do I get a good digestive enzyme? Is it in pill form? Aren't probiotics generally dairy?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • 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.