Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Hidden Gluten in distilled vinegar

    2. - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

    3. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    4. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,853
    • Most Online (within 30 mins)
      7,748

    Keithyboy
    Newest Member
    Keithyboy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
    • Dawn Meyers
      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
×
×
  • Create New...