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

Anyone Feel Better After First Going Gluten-free, Then Worse Again?

GFinMN

Recommended Posts

GFinMN Apprentice
GFinMN
Posted

Hi there,

I was dx w/ celiac 2 mos. ago and felt great after going gluten-free. But then about 6 weeks into the gluten-free diet and feeling great, I got worse and am having new symptoms. I feel dizzy and foggy immediately after eating anything and it continues for several hours. My blood sugars were checked multiple times pre-diagnosis and were always very normal. I am also bloated and don't have much of an appetite, which really sucks because the first six weeks going gluten free were awesome as my appetite was back to normal. I am definitely not getting any cross contamation. I eat at home every night and have just been doing the basics of meat, potato, veggie until the stomach heals.

Just wondering if anyone else had new symptoms develop after being diagnosed and feeling really great for a while. Also, any other causes for this dizziness/foggy feeling and lack of an appetite? I have read about developing new food allergies, but I don't know that those would make you dizzy and spaced out - they would be more gastro symptoms, correct?

Thank you!

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

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

Both gluten and dairy make me feel dizzy and spaced out so don't rule it out.

After you've been on the diet for a while, you get more sensitive because your body doesn't have to deal with a constant battering any more. So it might be that you're reacting to a minute amount in a medicine, or in your make up or shampoo etc. OR you are starting to notice a reaction to another food that was previously suppressed by the gluten reaction. OR you had a crumb somewhere two weeks ago and you're just not quite over it yet. Don't discount that either, it can take that long.

If you start to suspect another food, I'd first start with a few days without dairy and see if that helps.

Finally, the healing process comes with it's ups and downs, sometimes it just takes time.

Pauliina

GFinMN Apprentice
GFinMN
Posted
  • Author

thank you so much for the reply! that's good to know about dairy. i have been off lactose but have been drinking Lactaid milk.

Both gluten and dairy make me feel dizzy and spaced out so don't rule it out.

After you've been on the diet for a while, you get more sensitive because your body doesn't have to deal with a constant battering any more. So it might be that you're reacting to a minute amount in a medicine, or in your make up or shampoo etc. OR you are starting to notice a reaction to another food that was previously suppressed by the gluten reaction. OR you had a crumb somewhere two weeks ago and you're just not quite over it yet. Don't discount that either, it can take that long.

If you start to suspect another food, I'd first start with a few days without dairy and see if that helps.

Finally, the healing process comes with it's ups and downs, sometimes it just takes time.

Pauliina

kabowman Explorer
kabowman
Posted

Yes I did. That is when I discovered my many other food intolerances. Once I removed gluten, I realized that other things were bothering me too.

However, I do not have a celiac disease dx, I tried the gluten free diet and, amazingly got better.

I think yeast was a hard one to figure out - it makes me sleepy and foggy. Another one I have that is not listed below is the calcium suppliment that is added to non-dairy milks and OJs. Not sure what it is derived from but I can't stomach it, litterally ;)

I also have given up using most styrofoam because for some reason, most bother me, not all but enough to limit what I use to only what I get from my butcher for my whole chicken.

Mango04 Enthusiast
Mango04
Posted

I've heard that it's common to feel suddnely worse about 6 weeks in, as that's when your body might start to really detox. Cutting out dairy is a good suggestion though.

chick2ba Apprentice
chick2ba
Posted
I was dx w/ celiac 2 mos. ago and felt great after going gluten-free. But then about 6 weeks into the gluten-free diet and feeling great, I got worse and am having new symptoms.

YES! I followed the same pattern.. good for 2-3 months, then all the old symptoms + some came creeping back into my life. It was so depressing and frustrating.

I found taking out dairy (lactose) made a HUGE difference. I suggest starting a very detailed food diary to help pinpoint contamination sources. I used a number system to quantify my health (1 was very bad and 10 was awesome). I was so indignant that gluten was finding its way into my body.. I was so super super careful with everything, that I figured it was impossible! Keeping the diary made me realize a product or two (Pamela's cookies, etc) were setting me off every single time. Be aware that you might be reacting to things you NEVER DREAMED POSSIBLE!! Also, as your body becomes even more sensitive, you will begin to react to new, different products. The diary is/was very helpful and helped me "connect the dots".

I hope you feel better soon. I'm glad to report my health has improved tremendously since I removed the 2-3 contaminated products from my diet. It's a long road (over a year into the diet), but so worth it. Please realize it will gradually get better once you weed out contaminates and other triggers.

mftnchn Explorer
mftnchn
Posted

Hi, I am about 1 month into the gluten-free diet, both gluten and milk free. I have found it to be a very up and down road, with some improvement for awhile with constipation, but mostly worse.

I have gleaned from this board that sometimes that is the case, that we become more sensitive, and that we just have to hang in there for the long haul.

Today I figured out that all my hair care products have gluten (I have been using Nioxin since significant hair loss a year and a half ago and love it). Rats!!!! I have no access to anything to replace it, and figure what I find here locally might be worse. Sooo, I am doing my hair over the sink, wearing gloves, with my face in a towel, and trying to be very careful. Seems the fogginess and fatigue is already better today.

We are all so careful, and it is frustrating to find out we are still getting gluten.

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

Celiac.com Sponsor (A8-M):


spunky Contributor
spunky
Posted

I was already dairy free when I went gluten free. But going gluten free even apart from any possible dairy issues was a LOT of ups and downs for me, for many months. By one full year, things were pretty much settled down, although still improving pretty steadily. That's when it started getting all kind of messed up again, and I had an idea maybe it was soy. I dropped all the soy, things turned around again in 2 1/2 weeks.

Now it's been 15 months gluten free, two or three months soy free, never having done dairy for the past couple of decades anyway...feeling amazingly well. Still sometimes have some unwelcome gas, rumbling, or whatnot, but nothing anywhere near what it used to be, and more really good days than anything else...it's still gradually improving.

Those first 6 months gluten free, though, there were some BAD times, lots of ups and downs. It was tough. You gotta hang on and wait it out. If things aren't at least better during the second half of the first year, it might be time to really wonder about other intolerances popping up. Just my personal opinion, based on my own experience during this past almost year and a half.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      Thanks again, I'll keep pressing on. 🤞
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient". It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light. If not absorbed, excreted. Absorption of riboflavin will improve...
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      321

      Terrible Neurological Symptoms

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are...
    4. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins. I am 10-days into taking this already. My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day. I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where...
    5. knitty kitty
      - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      Oh, dear, the niacin flush! I've heard repeatedly that the worse the flush, the more your body needs the niacin. If you stick with it, the flushing will not be as bad in a few days. Another way to correct low Niacin level is to take 100 mg of Niacin (nicotinic acid, the flushing kind) every three hours for several days. I've done this myself, and...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,590
    • Most Online (within 30 mins)
      7,748
    Danny Mc
    Newest Member
    Danny Mc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      Oh, dear, the niacin flush!  I've heard repeatedly that the worse the flush, the more your body needs the niacin.  If you stick with it, the flushing will not be as bad in a few days.   Another way to correct low Niacin level is to take 100 mg of Niacin (nicotinic acid, the flushing kind) every three hours for several days.  I've done this myself, and found the flushing is very short lived.   Stay hydrated.  The B's are water soluble, so if not needed, they'll be excreted. Hang tight, you'll be okay!
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Step off the gas. I'm in the U. S.  That was what I remember my doctor telling me thirty years ago.  Things may have changed since then.  If I've "misremembered," I apologize.  I'm human.  Things are different on the other side of the pond.  Here we go by mg/dl.  The smaller incremental changes are more noticeable using mg/dl.   Also, I adopted a Ketogenic diet.  Ketogenic diets don't spike blood glucose as much, and therefore return to fasting levels sooner.  My own experience is my postprandial blood glucose level returned to fasting levels an hour after the end of a meal on a Ketogenic diet.  I was asking if the thiamine you take is thiamine hydrochloride or Benfotiamine or Thiamine TTFD.  Thiamine Mononitrate is not well absorbed nor utilized by the body.  I learned that amounts larger than 100 mgs of thiamine hydrochloride needs to be taken in thiamine deficiency.   500mgs thiamine hydrochloride is recommended by the World Health Organization for several days and look for health improvement.  Thiamine is safe and nontoxic even in higher amounts. When thiamine is taken in high doses, there's a big change in energy availability, especially in the brain, where pain is registered.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function.  Thiamine has analgesic properties.   I learned about high dose thiamine from Dr. Derek Lonsdale and Dr. Chandler Marrs through their website hormonesmatter.com.  I have taken high dose thiamine to correct my deficiency about fifteen years ago.  I could feel myself dying, I was so sick and in pain.  I was grasping at straws.  No harm, no foul, just to try it and see, right?  I tried it and that made all the difference.  High dose thiamine made astounding health improvements within a very short period of time for me.  I wonder if 500 mg of thiamine hydrochloride would have the same effect on you.
×
×
  • 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.