How long does it take to feel well

[pokey449]

After one goes on a gluten free diet how long does it take to feel well. I don’t mean not having symptoms. I mean how does it take for you to have a renewed sense of well-being?  

[knitty kitty]

Here's an article that explains how the "feel-good" brain chemicals are made in your intestines and how thiamine (vitamin B1) can help heal the intestines, relieve inflammation, and make those "sense of well-being" brain chemicals.

"Thiamine Deficiency - A Potential Cause of SIBO and other Gut Dysfunction?"

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

 

[Scott Adams]

I think this varies greatly from person to person, and depends on how much damage was done to your intestines, but for me I began feeling better immediately. My full recovery took a couple of years, and I also had to temporarily eliminate several other foods in addition to gluten to recover. 

[pokey449]

My lower GI tract is doing OK. No cramping, bloating and minimal gas. No diarrhea but I keep having stomach nausea, day and night with that irritated feeling like I have to much acid on my stomach. I think its excessive acid secretion from coming off the PPI I was on for so long, but I'm not sure. Then there is the fatigue and malaise. I feel very tired and sick basically. My upper endoscopy and abdominal CT showed nothing of concern to explain this. I and I think my doctors are baffled. 

[CMCM]

I'm a bit past 5 weeks gluten and dairy free, and feeling enormously better now (day 37)  but I'm definitely not there 100% yet.  I'll be interested to see when I feel consistently great, but I think it will be awhile, perhaps months.  There were only small, incremental improvements for the first 3 weeks or so, then about week 4 I began to really notice how much better I felt.  I guess no one can predict the timeline of healing as we're all so different.

[pokey449]

1 hour ago, CMCM said:

I'm a bit past 5 weeks gluten and dairy free, and feeling enormously better now (day 37)  but I'm definitely not there 100% yet.  I'll be interested to see when I feel consistently great, but I think it will be awhile, perhaps months.  There were only small, incremental improvements for the first 3 weeks or so, then about week 4 I began to really notice how much better I felt.  I guess no one can predict the timeline of healing as we're all so different.

 

1 hour ago, CMCM said:

I'm a bit past 5 weeks gluten and dairy free, and feeling enormously better now (day 37)  but I'm definitely not there 100% yet.  I'll be interested to see when I feel consistently great, but I think it will be awhile, perhaps months.  There were only small, incremental improvements for the first 3 weeks or so, then about week 4 I began to really notice how much better I felt.  I guess no one can predict the timeline of healing as we're all so different.

Ive been on a low FODMAP diet and dairy free for 6 months. I thought I was gluten free for the same amount of time except for learning that my oatmeal was not likely gluten free. I switched to certified gluten free oatmeal for a couple weeks now. I had SIBO back in August and was treated successfully for that and went off my PPI then as well. Been off it for several months. I feel worse now than I've ever felt. The nausea is debilitating. Have it day and night. Had a CT of the abdomen a week ago, nothing significant was found. I don't know if my SIBO has come back or what, but my sxs are not like before I was treated for SIBO when I was bloated and cramping. Just nauseated now. I'm miserable and don't know what to do. 

[CMCM]

1 hour ago, pokey449 said:

 

Ive been on a low FODMAP diet and dairy free for 6 months. I thought I was gluten free for the same amount of time except for learning that my oatmeal was not likely gluten free. I switched to certified gluten free oatmeal for a couple weeks now. I had SIBO back in August and was treated successfully for that and went off my PPI then as well. Been off it for several months. I feel worse now than I've ever felt. The nausea is debilitating. Have it day and night. Had a CT of the abdomen a week ago, nothing significant was found. I don't know if my SIBO has come back or what, but my sxs are not like before I was treated for SIBO when I was bloated and cramping. Just nauseated now. I'm miserable and don't know what to do. 

This is all so frustrating to figure out, as you well know.  For the time being, in addition to being gluten-free and dairy free, I'm not eating oatmeal either, even though it's a gluten-free product.  Some people appear to also react to the oat gluten, so I'm not taking chances.  I have been eating cream of rice with banana and blueberries (not every day, though) and so far it doesn't seem to  bother me, but ideally I'd like to go for at least a few months at some point with no grains of any sort, including corn (which DOES affect me).  Also no starches such as found in all the gluten-free foods, because I definitely know I don't do well with those.  

[pokey449]

11 minutes ago, CMCM said:

This is all so frustrating to figure out, as you well know.  For the time being, in addition to being gluten-free and dairy free, I'm not eating oatmeal either, even though it's a gluten-free product.  Some people appear to also react to the oat gluten, so I'm not taking chances.  I have been eating cream of rice with banana and blueberries (not every day, though) and so far it doesn't seem to  bother me, but ideally I'd like to go for at least a few months at some point with no grains of any sort, including corn (which DOES affect me).  Also no starches such as found in all the gluten-free foods, because I definitely know I don't do well with those.  

What symptoms are you having 

[CMCM]

17 minutes ago, pokey449 said:

What symptoms are you having 

The usual digestive woes.  Also neuropathy in both feet, which is already feeling a bit better.  When all this started again Dec. 28, I had vertigo, then dizziness for a week after that, nausea and vomiting at that time, terrible upper abdominal pain with anything I ate, the worst I've ever had, nausea, and even now I feel a bit queasy when I first wake up and I usually don't feel like eating for awhile.  So bit by bit this is improving.  I just have to be so careful about what and how much I eat.  Any food and I still get this feeling like I'm about to get that digestive pain  (GERD or whatever it is).  When I get that, a PPI usually helps, but I don't take that except on rare occasions.  I've been eating very limited foods the last 6 weeks.

 

[Scott Adams]

I've had neuropathy issues to some degree for almost 25 years, even though I've been taking supplements that are supposed to help with it. It wasn't until I started taking benfotiamine (a type of B1 that absorbs better), and magnesium citrate during the past year that I've finally stated seeing improvement with it.

[CMCM]

Several years ago my doctor suggested I try a prescription vitamin combo called Metanx, described as this:  Metanx is a prescription medical food made by Alfasigma that contains L-methylfolate, methylcobalamin and pyridoxal 5'-phosphate. It is a vitamin B supplement. Metanx is indicated for the dietary management of peripheral neuropathy.

They claim the prescription level folate is an activated type not found in the usual folic acid supplements.  I took it for a couple of years....perhaps it helped some, but my gluten consumption wasn't under control then and I wasn't aware that the neuropathy could be connected with gluten, so that is part of my picture.  I stopped taking it maybe a year ago, then about 3 months ago I started taking it again because my neuropathy had gotten so bad...it had gone beyond being annoying to hurting.  For me, my neuropathy is definitely a bit better as the hurting is again gone and it's back to being annoying, but at this point I attribute the quick improvement to the lack of gluten in my diet as the improvement has occurred in only the last couple of weeks.  The Metanx takes far longer to see results as it supposedly facilitates the regeneration of damaged nerves, which is a slow process.  I'm going to keep taking it for the next year and see what I think.  Coupled with a strict gluten free diet, the Metanx may work better than it did before.  

The benfotiamine (B1) that you mentioned is interesting.  Where you do get it, is it a prescription or OTC? 

[Scott Adams]

It's OTC and used mostly for diabetics. I got it here, but it's currently out of stock:

https://www.amazon.com/dp/B0747S6Z49

[knitty kitty]

Thought these might be of interest....

Nutritional Neuropathies

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

And...

Vitamin B1 Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/books/NBK537204/

 

[Beverage]

It took me awhile, but not until I addressed the vitamin deficiencies created with Celiacs. 

I just posted this for someone else:

I had big D deficiencies (take D3 and K2, the K helps absorb the D), B vitamin deficiencies, especially B12 and B1 (thiamin). 

KnittyKitty has posted a LOT about B vitamins. Try searching for those posts and you will dig up a lot of info. 

it's not about just taking vitamins, most are junk, have fillers, are not forms of those vitamins that your body can absorb and use. But taking the right forms of each vitamin makes a huge difference, you have to learn about what actually gets absorbed and works.  Also I strongly prefer capsules or gel caps, not hard tablets.  Make sure they are labeled gluten free of course.

I recommend a naturopathic doctor if that is available to you.  I have also learned a lot of reading articles by Dr. Jonathan Wright (naturopathic doctor here in the NorthWest USA, has many books and known world wide), also I follow the Youtubes by Peter Osborne (he has a lot of info about the right forms of each vitamin).  Search out articles and youtubes by these guys.

When I was first diagnosed in 2015, I dropped so much weight after going gluten free, I literally looked like I was ready to just drop over and die, it really scared me to look in the mirror.  I was one that was overweight with eating gluten, it caused so much inflammation and puffyness.  And when I stopped eating gluten, I was losing several pounds of water a day.  In a month, I dropped 30 lbs, underneath I was a skeleton, no muscle.  I remember the shock on peoples' faces when they saw me for the first time in awhile.   I'm 64 now (female), built back muscle, and now do 20 push ups a day, walk a few miles a day, and working up to getting back into my old Pilates machine routine.  It takes awhile, go slowly, but vitamins, and the right form of the vitamins really really helps.

[pokey449]

I am new to this celiac business. I am having lots of nausea. Do others experience nausea in the process of getting well. I was diagnosed earlier this summer with SIBO and we treated that successfully with Xifaxan and I have been on a low FODMAP diet, no dairy and attempting gluten free as well. It was just recently that I was informed I may be celiac. I am sticking  with the diets best I can but the nausea is debilitating. I wake up at night sick to my stomach. I dont know, maybe my SIBO has come back, it has a nasty habit of doing that but Im not having bloating or diarrhea, just nausea and to much stomach acid

[Beverage]

15 minutes ago, pokey449 said:

I am new to this celiac business. I am having lots of nausea. Do others experience nausea in the process of getting well. I was diagnosed earlier this summer with SIBO and we treated that successfully with Xifaxan and I have been on a low FODMAP diet, no dairy and attempting gluten free as well. It was just recently that I was informed I may be celiac. I am sticking  with the diets best I can but the nausea is debilitating. I wake up at night sick to my stomach. I dont know, maybe my SIBO has come back, it has a nasty habit of doing that but Im not having bloating or diarrhea, just nausea and to much stomach acid

Well another thing that lingered for me was acid reflux/gerd with dry cough and wheezing. What I Iearned from Dr. Jonathan Wright is that acid reflux is 99% from too little acid, NOT too much. The food does not digest, and so rots and ferments and that causes the problems.

What helped me a lot was following this article:

https://drjockers.com/hiatal-hernia/

Do NOT take any acid controller medications, those will make it worse in the long run, and you will prevent absorbing vitamins. We need acid to break things down so that our intestines can absorb those vitamins that Celiacs need so badly.

I now only take a sip of apple cider vinegar before meals with protein (first with a little water to get used to it, now I take it straight)...YES ADD ACID.

and these DGL tables after dinner most days (needing to take less and less):

https://www.amazon.com/gp/product/B001IAJW0K/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

 

 

 

[pokey449]

Oh geez. My GI doc put me back on the PPI. Ive been back on for about 21 days. DO I need to taper again or can I just stop

[pokey449]

PS: I was off the PPI for 5 months and doing pretty well, but then the acid started coming back. Ive been taking DGL, digestive enzymes, probiotics, L Glutamine, Multi-Vit, Iberogast. Now the nausea from the acid is really bad and the PPI offers relief. This is so confusing and difficult, I dont know what to do next

[Beverage]

27 minutes ago, pokey449 said:

PS: I was off the PPI for 5 months and doing pretty well, but then the acid started coming back. Ive been taking DGL, digestive enzymes, probiotics, L Glutamine, Multi-Vit, Iberogast. Now the nausea from the acid is really bad and the PPI offers relief. This is so confusing and difficult, I dont know what to do next

I understand. An ENT doc tried to prescribe me some PPI's for my complaints about dry cough and asthma, but I refused. I still remember the look on his face when I said "but you NEEEEED ACID TO ABSORB VITAMINS..." and he nodded his head, he knew I was right.  I took over the counter antacids for a few months, but followed the advice in the article, and gradually tapered off.  The morning routine of thumping feet after drinking water helped...I think it helped move a slight hiatal hernia back into place.  But that didn't fix it all, the apple cider vinegar did the rest.  If you can, work with a naturopath. Traditional docs just want to prescribe something that reduces symptoms, not actually fixes or helps the root cause.

[MADMOM]

On 2/19/2021 at 1:51 PM, Scott Adams said:

I've had neuropathy issues to some degree for almost 25 years, even though I've been taking supplements that are supposed to help with it. It wasn't until I started taking benfotiamine (a type of B1 that absorbs better), and magnesium citrate during the past year that I've finally stated seeing improvement with it.

do u remember how high your levels were Scott??  i mean initially and how fast or slow they improved?  

[Scott Adams]

I've not had my levels checked yet for B1, so unfortunately I don't know. My assumption is that in my case, this fat soluble version of B1 is being absorbed better, and it, along with magnesium citrate, seem to be helping with this issue. On a side note, my doctor has only checked me twice for vitamin levels, and only when I asked. My doctor is aware of my neuropathy, but never recommended any vitamin or mineral level tests, I had to ask for them. 

[Posterboy]

On 2/25/2021 at 5:07 PM, MADMOM said:

do u remember how high your levels were Scott??  i mean initially and how fast or slow they improved?  

 

22 hours ago, Scott Adams said:

I've not had my levels checked yet for B1, so unfortunately I don't know. My assumption is that in my case, this fat soluble version of B1 is being absorbed better, and it, along with magnesium citrate, seem to be helping with this issue. On a side note, my doctor has only checked me twice for vitamin levels, and only when I asked. My doctor is aware of my neuropathy, but never recommended any vitamin or mineral level tests, I had to ask for them. 

Madmom,

When you combine Magnesium Citrate and/or Glycinate with Benfotiamine it is like "TNT".....

Your health explodes....

Thiamine NEEDS Magnesium to be absorbed in the body.....but you need to find a highly bioavailable form as Scott found out by taking Magnesium Citrate....and the same for Thiamine....

I call it "Targeted Nutrition Therapy".....

This article explains how Befotiamine can help Neuropathies...but you won't experience the many benefits unless you take it's Co-Factor....

https://www.naturalmedicinejournal.com/journal/2018-11/thiamine-deficiency-and-diabetic-polyneuropathy

Co-Factor's are like "Deadbolts" on doors.....you unlock the door....but still cant' get in....

Magnesium unlocks the deadbolt....and the door to health swings open wide.

quoting from the above article

"Thiamine is water-soluble.26 Absorption from the gut takes place mainly from the proximal small intestine primarily via an energy-dependent active transport system.28 Only about 5% of ingested thiamine is absorbed.29"

Not even enough to make a blip....

quoting again I round up to 7x the absorption for Benfotiamine (for easy remembrance)...

"The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate"

I hope this is helpful but it is  not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[AlwaysLearning]

In addition to the autoimmune reactions we experience, gluten has been shown to be addictive, so I would expect the first two weeks of being gluten free to be rough as you go through withdrawal. But during and after those first two weeks, you should start to notice other health problems subsiding, realizing things that you thought were normal about yourself were actually being caused by gluten. 90% of the improvements I noticed after going gluten free were not digestive. 

But how you feel depends on a combination of how well you are doing at staying gluten free and how much damage needed to heal. For instance, if you had a lot of digestive problems, I would expect a few months of healing before things like vitamin deficiencies caused by malnourishment start to improve. And those vitamin deficiencies could be causing some of your symptoms, so would not improve immediately.

The better you do at staying gluten-free, the better you should feel, of course. But the flip side of that is that better you are at avoiding gluten, the stronger your reactions to those accidental glutenings can be. For instance, I never reacted to the gluten in my makeup before I went gluten free, but I did after. Learn what your early indications are that you've been glutened so that you can immediately take steps to dissipate your reaction, such as drinking more water to flush your system, or getting more rest.

I also would not overlook the psychological effects as you deal with learning a new lifestyle. Do find ways to make it more fun for yourself, such as trying new dishes to cook and don't dwell on what you can't eat. Instead, focus on all of the health problems that disappeared when you went gluten free! You want to get to the point where you can't even imagine ever being tempted to eat gluten again because you feel so fantastic without it. You can get there!

[AlwaysLearning]

I think B12 is the vitamin deficiency most related to neuropathies. 

Yes, definitely ask to have the blood draw to look for deficiencies. It is a less expensive and less invasive way to monitor healing, IMO. I had a few that were pretty bad before going gluten-free (B12, iron, D) but went away completely after, but at my worst, I was also not digesting food at all, so vitamin deficiencies would be expected.

[pokey449]

4 minutes ago, AlwaysLearning said:

In addition to the autoimmune reactions we experience, gluten has been shown to be addictive, so I would expect the first two weeks of being gluten free to be rough as you go through withdrawal. But during and after those first two weeks, you should start to notice other health problems subsiding, realizing things that you thought were normal about yourself were actually being caused by gluten. 90% of the improvements I noticed after going gluten free were not digestive. 

But how you feel depends on a combination of how well you are doing at staying gluten free and how much damage needed to heal. For instance, if you had a lot of digestive problems, I would expect a few months of healing before things like vitamin deficiencies caused by malnourishment start to improve. And those vitamin deficiencies could be causing some of your symptoms, so would not improve immediately.

The better you do at staying gluten-free, the better you should feel, of course. But the flip side of that is that better you are at avoiding gluten, the stronger your reactions to those accidental glutenings can be. For instance, I never reacted to the gluten in my makeup before I went gluten free, but I did after. Learn what your early indications are that you've been glutened so that you can immediately take steps to dissipate your reaction, such as drinking more water to flush your system, or getting more rest.

I also would not overlook the psychological effects as you deal with learning a new lifestyle. Do find ways to make it more fun for yourself, such as trying new dishes to cook and don't dwell on what you can't eat. Instead, focus on all of the health problems that disappeared when you went gluten free! You want to get to the point where you can't even imagine ever being tempted to eat gluten again because you feel so fantastic without it. You can get there!

Ive been pretty much gluten free for 6 months with the one exception of learning that the oatmeal I had been eating might have been contaminated, so 3 weeks ago I switched to certified gluten free. So far the symptoms have not improved 3 weeks later.  Id think Id see some improvement??? Also I am having to assume I am celiac as the only diagnostic parameter I have gotten thus far is mild villi blunting. Blood test were negative. Howevr I have been on a PPI for some time and had SIBO which can cause celiac as I understand?? Until I know for sure one way or another I will continue with a gluten free diet and taking my supplements