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

Feel Worse Before Feel Better?


mangomagic

Recommended Posts

mangomagic Newbie

I've started to phase out gluten from my diet, but I actually feel worse than I usually do. My symptoms are nausea, upset stomach and vomiting. Has anyone else had this problem? How long before I should feel better?


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



Celiac.com Sponsor (A8-M):



runningcrazy Contributor

I've started to phase out gluten from my diet, but I actually feel worse than I usually do. My symptoms are nausea, upset stomach and vomiting. Has anyone else had this problem? How long before I should feel better?

Phase out? Do you mean there is still some? Whether its a piece of bread or a droplet of flour, you need to completely eliminate gluten. Period.

If you are completely gluten free, yes, it is probably gluten-withdrawal. When my mom went gluten free she had headache, brain fogginess, and feeling tired for a week or so.

It took me 4 months before my symptoms went away(stomach issues mostly)

sandsurfgirl Collaborator

Since I went completely gluten free 6 days ago I have gone from being a pretty intelligent person to living up to my blonde hair's reputation. I am so DITZY. I feel like I'm tipsy or something my brain is so foggy. I'm still having dizzy spells and tiredness too, but my GI issues have improved as of last night.

Korwyn Explorer

Since I went completely gluten free 6 days ago I have gone from being a pretty intelligent person to living up to my blonde hair's reputation. I am so DITZY. I feel like I'm tipsy or something my brain is so foggy. I'm still having dizzy spells and tiredness too, but my GI issues have improved as of last night.

There is for many people a withdrawal period. I didn't notice it because I'd been so sick that I felt wonderful. But after that there was a period where I felt SO good I felt like I was high! (My wife was a little worried in fact) That lasted about two weeks, then I crashed and had a rough patch for a little bit but it turned around. I've talked to other's with Celiac disease who were aware of both. There is some research (if you read the book Gut And Psychology Syndrome) which indicates that the and 33-mer protein fragment that is the bad boy in all of this contributes to an opioid like effect on the brain chemistry. This is also why many people have a cyclic window of up-down-up-down with a varying length and periodicity (depending on the individual). It may be similar to the physiologic and psychologic withdrawal cycle experienced by those coming off of various drugs.

Just remember that the up and down is normal. The brain fog can be really scary sometimes. I didn't have the brain fog until about four months AFTER I went gluten-free. I was totally freaked out. It is slowly getting better (I'm on 10 months gluten-free/CF/SF) but it was very scary for me. Vitamin and mineral supplements (watch for hidden gluten, casein, soy) help a lot, and I take about 3 tablespoons of extra virgin organic coconut oil a day. That has helped a tremendous amount.

sandsurfgirl Collaborator

I'm feeling much better today, day 7 gluten free. I homeschool my 5 year old and I have a 2 year old. I was able to teach and do all sorts of fun things all morning until lunch with no fatigue and no tiredness or need to take breaks. Usually I take a lot of breaks and I feel like garbage. The dizziness was all gone until now. Most of my GI symptoms are gone or very mild at this point.

I was so patient today too. Trying to teach an antsy 5 year old boy while a 2 year old girl is getting into everything, ripping up papers and drawing on the table can be trying LOL, but I had so much patience today. Things that made me feel stressed before just didn't bother me.

So there IS light at the end of the tunnel. Last night I got super fatigued all of a sudden and I just HAD to lay down right then and there. I figure that after years of my body literally destroying my intestines in order to shut out gluten, it's going to have to work very hard to do these repairs and it needs all my resources in my gut and not in my brain. LOL!!! So I slept.

I am VERY hungry too. I'm eating all day long. Simple, healthy food, but I need to eat constantly. I read that your have been malnourished for so long, your body wants good food and it wants it NOW. Funny enough, I tracked my calories and they were much lower than I normally eat, even though I'm constantly eating since the food I'm taking in is so healthy.

I cut out soy and dairy too. They are just too hard to digest. I didnt' cut out corn, but I hardly eat it, so I'm not doing corn tortillas or anything like that. I ate a gluten free brownie and it made me feel awful a couple of days ago so I'm not doing the gluten-free breads and stuff either. Too many ingredients and still many are junk food.

Tinkyada rice pasta was tolerated well by me and it tasted great last night for dinner. I used olive oil to sautee some shallots in a pan, added some peas and a little salt and a bit of chicken broth, then sauteed the cooked rice pasta in that mixture. Really yummy!

Also, don't phase out. Go gluten free 100%. Don't eat out for awhile until your body is strong. Just give your body time to heal. It's like a war zone in those intestines. Let your soldiers come home and rest.

sandsurfgirl Collaborator

There is for many people a withdrawal period. I didn't notice it because I'd been so sick that I felt wonderful. But after that there was a period where I felt SO good I felt like I was high! (My wife was a little worried in fact) That lasted about two weeks, then I crashed and had a rough patch for a little bit but it turned around. I've talked to other's with Celiac disease who were aware of both. There is some research (if you read the book Gut And Psychology Syndrome) which indicates that the and 33-mer protein fragment that is the bad boy in all of this contributes to an opioid like effect on the brain chemistry. This is also why many people have a cyclic window of up-down-up-down with a varying length and periodicity (depending on the individual). It may be similar to the physiologic and psychologic withdrawal cycle experienced by those coming off of various drugs.

Just remember that the up and down is normal. The brain fog can be really scary sometimes. I didn't have the brain fog until about four months AFTER I went gluten-free. I was totally freaked out. It is slowly getting better (I'm on 10 months gluten-free/CF/SF) but it was very scary for me. Vitamin and mineral supplements (watch for hidden gluten, casein, soy) help a lot, and I take about 3 tablespoons of extra virgin organic coconut oil a day. That has helped a tremendous amount.

Which coconut oil are you taking? I tried it a long time ago because I have hypothyroid and trouble losing weight, which it's supposed to help. I took one spoonful and it made me throw up so violently I thought my guts would explode. Then the Whole Foods person said the one I bought is not good and to try another one but after that I was pretty much done.I'm not allergic. I can eat coconut fine.

Korwyn Explorer

Which coconut oil are you taking? I tried it a long time ago because I have hypothyroid and trouble losing weight, which it's supposed to help. I took one spoonful and it made me throw up so violently I thought my guts would explode. Then the Whole Foods person said the one I bought is not good and to try another one but after that I was pretty much done.I'm not allergic. I can eat coconut fine.

I'll get the name for you after I go to the store tomorrow. We ran out a couple days ago and it isn't payday yet. :( I blend it into our morning breakfast drink which usually consists of an (organic) fuji apple (anything but red delicious), frozen bananna, some kale, collard greens, red swiss chard, a carrot, some adams organic natural peanut butter, flax meal, coconut oil, a small handful of some kind of berry (black, blue, straw). If my wife is gone I throw in spinach or romaine lettuce. She can't eat either one. I use almond, hemp, or rice milk to get it to a nice consistency. So the coconut oil is pretty palatable. I can't take it straight. I tried that and the oil content was just too much for my stomach. I have a friend that drinks the stuff straight though!

I have to pick and choose what is organic and what isn't because it is so pricey, but after reading up on apples and reading an article by some apple growers we decided that we would buy organic apples or none at all. The amount of pesticide used on non-organic apples is unbelievable.

I make enough 'green' drink (sometimes it is red, sometimes tan or brown depending on what I put in) for two big 16 oz glasses. We each have one, and then I usually eat a handful of almonds and craisins or another apple around 10 or so. That pretty much takes care of my morning meal.


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



Celiac.com Sponsor (A8-M):



Korwyn Explorer

I've started to phase out gluten from my diet, but I actually feel worse than I usually do. My symptoms are nausea, upset stomach and vomiting. Has anyone else had this problem? How long before I should feel better?

Phasing out is bad. You will have some days where you don't have any gluten and your body will start to heal. Then you re-introduce some gluten and your body will react even worse. I don't want to scare you or discourage you, but gluten-free is all or nothing.

sandsurfgirl Collaborator

I'll get the name for you after I go to the store tomorrow. We ran out a couple days ago and it isn't payday yet. :( I blend it into our morning breakfast drink which usually consists of an (organic) fuji apple (anything but red delicious), frozen bananna, some kale, collard greens, red swiss chard, a carrot, some adams organic natural peanut butter, flax meal, coconut oil, a small handful of some kind of berry (black, blue, straw). If my wife is gone I throw in spinach or romaine lettuce. She can't eat either one. I use almond, hemp, or rice milk to get it to a nice consistency. So the coconut oil is pretty palatable. I can't take it straight. I tried that and the oil content was just too much for my stomach. I have a friend that drinks the stuff straight though!

I have to pick and choose what is organic and what isn't because it is so pricey, but after reading up on apples and reading an article by some apple growers we decided that we would buy organic apples or none at all. The amount of pesticide used on non-organic apples is unbelievable.

I make enough 'green' drink (sometimes it is red, sometimes tan or brown depending on what I put in) for two big 16 oz glasses. We each have one, and then I usually eat a handful of almonds and craisins or another apple around 10 or so. That pretty much takes care of my morning meal.

Crazy me. I just took the stuff straight. No wonder!

I have been juicing off and on for years with similar stuff to what you are making a shake out of. I find it helps me a lot, and now that I'm diagnosed celiac and gluten free it's been really helping with the withdrawals. I didn't juice until yesterday because it just didn't appeal to me. I'm only wanting to eat simple foods for the most part right now. Afer I juiced yesterday I felt so much better.

mangomagic Newbie

Thanks for all of my responses, I'm glad to know that I'm not the only one who felt sick and that it might only last a little while.

It wasn't really phasing out, what happened was I got my blood test results from the doctor, who referred me to a specialist and said that I should stop eating gluten. So I did, for just under a week and felt sick. But then I saw a specialist who said that I can keep eating it up until my biopsy in a couple of weeks, so I happily started eating it again but am feeling way worse. Which leads to my other question, do I have to keep eating it if it makes me sick, I read somewhere that you should keep eating gluten so that the biopsy is correct, but I'm really not well. I've left a message for the specialist to find out. What do you think?

Korwyn Explorer

Thanks for all of my responses, I'm glad to know that I'm not the only one who felt sick and that it might only last a little while.

It wasn't really phasing out, what happened was I got my blood test results from the doctor, who referred me to a specialist and said that I should stop eating gluten. So I did, for just under a week and felt sick. But then I saw a specialist who said that I can keep eating it up until my biopsy in a couple of weeks, so I happily started eating it again but am feeling way worse. Which leads to my other question, do I have to keep eating it if it makes me sick, I read somewhere that you should keep eating gluten so that the biopsy is correct, but I'm really not well. I've left a message for the specialist to find out. What do you think?

Yes. If you are going in for an endoscopic biopsy you do need to continue. Unfortunately you are in the same boat my sister was. She stopped and went gluten-free for about two weeks, then they made her eat it again for 6 weeks prior to her biopsy. 4-6 slices of wheat bread a day. Because she had stopped first and her body started to switch off the inflammatory response and begin healing, when she went back on she was much sicker than before. She did survive it, but it wasn't fun.

sandsurfgirl Collaborator

That's a tough call. Having been misdiagnoes for 40 years and ending up in the ER with a horrible attack after eating pizza and cake, there was no way in hello I was going to wait weeks for a biopsy. I went to the doc and asked for the blood test, which came back overwhelmingly positive, but I had already decided that if it came back negative I was going on the diet anyway. Biopsies can come out negative and then people get on the diet and it all clears up.

However, having a diagnosis for certain will probably lead to better compliance in the long run.

My doc wanted me to see and GI doc for a biopsy to confirm the bloodwork and I refused. I went gluten free right after I had my blood drawn.

It's an individual choice and you need to decide what your goal is and if it matters to you whether the doc has it on paper that you are celiac or if they call you gluten intolerant after you do the diet and say "Hey guess what? You were wrong all these years and now I feel better."

sandiz Apprentice

There is for many people a withdrawal period. I didn't notice it because I'd been so sick that I felt wonderful. But after that there was a period where I felt SO good I felt like I was high! (My wife was a little worried in fact) That lasted about two weeks, then I crashed and had a rough patch for a little bit but it turned around. I've talked to other's with Celiac disease who were aware of both. There is some research (if you read the book Gut And Psychology Syndrome) which indicates that the and 33-mer protein fragment that is the bad boy in all of this contributes to an opioid like effect on the brain chemistry. This is also why many people have a cyclic window of up-down-up-down with a varying length and periodicity (depending on the individual). It may be similar to the physiologic and psychologic withdrawal cycle experienced by those coming off of various drugs.

Just remember that the up and down is normal. The brain fog can be really scary sometimes. I didn't have the brain fog until about four months AFTER I went gluten-free. I was totally freaked out. It is slowly getting better (I'm on 10 months gluten-free/CF/SF) but it was very scary for me. Vitamin and mineral supplements (watch for hidden gluten, casein, soy) help a lot, and I take about 3 tablespoons of extra virgin organic coconut oil a day. That has helped a tremendous amount.

I am 2 weeks gluten-free and my brain fog went away. I was scaring myself before knowing that I was not that confused. Way more energy and bloating went away. Forgot about vodka and had Mike's hardlemonade and bad night and day. Yesterday I had a peanut butter cup and didn't sleep well and stomach feels bad.

What does the coconut oil do?

bluebonnet Explorer

I'm feeling much better today, day 7 gluten free. I homeschool my 5 year old and I have a 2 year old. I was able to teach and do all sorts of fun things all morning until lunch with no fatigue and no tiredness or need to take breaks. Usually I take a lot of breaks and I feel like garbage. The dizziness was all gone until now. Most of my GI symptoms are gone or very mild at this point.

I was so patient today too. Trying to teach an antsy 5 year old boy while a 2 year old girl is getting into everything, ripping up papers and drawing on the table can be trying LOL, but I had so much patience today. Things that made me feel stressed before just didn't bother me.

So there IS light at the end of the tunnel. Last night I got super fatigued all of a sudden and I just HAD to lay down right then and there. I figure that after years of my body literally destroying my intestines in order to shut out gluten, it's going to have to work very hard to do these repairs and it needs all my resources in my gut and not in my brain. LOL!!! So I slept.

I am VERY hungry too. I'm eating all day long. Simple, healthy food, but I need to eat constantly. I read that your have been malnourished for so long, your body wants good food and it wants it NOW. Funny enough, I tracked my calories and they were much lower than I normally eat, even though I'm constantly eating since the food I'm taking in is so healthy.

I cut out soy and dairy too. They are just too hard to digest. I didnt' cut out corn, but I hardly eat it, so I'm not doing corn tortillas or anything like that. I ate a gluten free brownie and it made me feel awful a couple of days ago so I'm not doing the gluten-free breads and stuff either. Too many ingredients and still many are junk food.

Tinkyada rice pasta was tolerated well by me and it tasted great last night for dinner. I used olive oil to sautee some shallots in a pan, added some peas and a little salt and a bit of chicken broth, then sauteed the cooked rice pasta in that mixture. Really yummy!

Also, don't phase out. Go gluten free 100%. Don't eat out for awhile until your body is strong. Just give your body time to heal. It's like a war zone in those intestines. Let your soldiers come home and rest.

we homeschool too! :) i noticed so many of you cut out dairy but what do you do for calcium? when i was 35 they told me my spine had degenerative changes and that was 2 years ago with even more bone and joint pain. how do you make sure you are protecting your bones if you aren't taking in calcium?

GFinDC Veteran

I take a calcium pill. There is calcium in some veggies also. Wiki has a list of them.

nmlove Contributor

I was so patient today too. Trying to teach an antsy 5 year old boy while a 2 year old girl is getting into everything, ripping up papers and drawing on the table can be trying LOL, but I had so much patience today. Things that made me feel stressed before just didn't bother me.

So there IS light at the end of the tunnel. Last night I got super fatigued all of a sudden and I just HAD to lay down right then and there. I figure that after years of my body literally destroying my intestines in order to shut out gluten, it's going to have to work very hard to do these repairs and it needs all my resources in my gut and not in my brain. LOL!!! So I slept.

I am VERY hungry too. I'm eating all day long. Simple, healthy food, but I need to eat constantly. I read that your have been malnourished for so long, your body wants good food and it wants it NOW. Funny enough, I tracked my calories and they were much lower than I normally eat, even though I'm constantly eating since the food I'm taking in is so healthy

SandSurfGirl - you sound like me! I'm about a week and a half into gluten-free and finally starting to turn around. Just going gluten-lite, if you will, when my boys were diagnosed in the fall, helped so much with the patience around my kids. I noticed when I did eat a lot of gluten (such as pasta or a pizza) I'd have a few days of, um, being not so nice let's say. I was already dairy/soy free because of my breastfed daughter but I do notice problems when I venture into more "junky" food, even if it's homemade. I go through a day or so of extreme hunger and then a day of not wanting to eat much. I figure it all balances out. I just need to find a good multi-vitamin as I looked at the bottle and saw soy. It was working so great too and I thought I checked it (prior to purchasing a replacement bottle). Oh well.

we homeschool too! :) i noticed so many of you cut out dairy but what do you do for calcium? when i was 35 they told me my spine had degenerative changes and that was 2 years ago with even more bone and joint pain. how do you make sure you are protecting your bones if you aren't taking in calcium?

And we homeschool too! :) My daughter's pediatrician told me to take three tums a day (use the original because I've heard mention of gluten/dairy in some flavors). Plus, I try to incorporate spinach on a daily basis as well as other calcium rich foods. I did compare my rice milk to cow's milk and it's comparable nutrition wise but I don't consume that much of it. I use it in baking and when I eat cereal (not every day).

sandsurfgirl Collaborator

Yay for homeschoolers!! Today I went to a park day and it was the first activity I've done in months where I wasn't short of breath or having random pointless anxiety. I was short of breath for months and no asthma medicine was helping. Went gluten free and hello! I can breathe normally within like 2 days. This is day 14 for me. Yesterday and today were the best so far.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,593
    • Most Online (within 30 mins)
      7,748

    Michele Roedder
    Newest Member
    Michele Roedder
    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

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.