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

StacyA · September 11, 2009

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?

Wolicki · September 11, 2009

I think it's different for everyone, but I have definitely had ups and downs. I felt fantastic after 3 days 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

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 · September 11, 2009

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 · September 11, 2009

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 · September 11, 2009

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 · September 12, 2009

babysteps said:
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 · September 12, 2009

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.

Wolicki · September 13, 2009

redsidekick said:
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 Most of it is still with me , 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 to have this extra fluid gone!

StacyA · September 13, 2009

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 · September 15, 2009

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 · September 16, 2009

jabberwife said:
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

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

Lost Scribe · September 16, 2009

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 · September 17, 2009

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 · September 17, 2009

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.

September 20, 2009

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 · September 20, 2009

Dori827 said:
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!

September 23, 2009

Wolicki said:
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?