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

Symptoms Worse After Going Gluten Free

Bugsly

By Bugsly
in Coping with Celiac Disease

Recommended Posts

Bugsly Newbie
Bugsly
Posted

Hi everyone.

I am new here and tried to search the threads but did not find an answer to my question. I apologize if this is a bit redundent.

What I am curious about is recently I went gluten and corn free (I am intollerant to any type of corn and was scope diagnosed with celiac)...well I accidently got "glutened" at a family dinner. Now, before when I was eating gluten the symptoms were not NEAR as bad as they were after being off gluten. Does that make sense? Does anyone have any thoughts?

Thank you in advance!!!!

Jill

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Many many people report the same thing. For some, it's a lifelong thing, for others it goes away after some time gluten-free.

And welcome to the forum.:)

mbrookes Community Regular
mbrookes
Posted

I have been free for 3 1/2 years and got glutened last Tuesday. It is the worst of my complete experience... diarreah, nausea, severe headache. Finally this afternoon I feel a little better, but I am so bloated I can barely wear my clothes. Is this normal? I have been glutened before, but never anything like this.

Bugsly Newbie
Bugsly
Posted
  • Author

It's so wierd that symptoms are worse after going gluten free....

Thanks for the welcome into the forum :) I am the only celiac in my family and it would be nice to have other people understand and share experiences.

cassP Contributor
cassP
Posted

im sure its safe to go ahead and say that MOST of us have experienced this... in layperson terms- i THINK it's because the body has gotten healthy again and now the immune system is more vigilant and quick to identify the poison.

but when you think about it- it kind of happens with other things too- alcohol, ciggarettes... after abstaining for so long- once you have some- the body is like WHOAH .. WTH

T.H. Community Regular
T.H.
Posted

Oh yeah - my whole family is the same way. There are four confirmed celiacs in my family, and we've all had reactions grow worse after going gluten free, sometimes significantly so. My daughter didn't even HAVE noticeable symptoms - just chronic fatigue type of things. Now, 1 year gluten-free, if she gets gluten, she has extremely painful stomach aches, her arms and legs get shaky and weak, and she has other issues as well.

It's really a bit crazy, isn't it? :blink:

Oh, one other thing to keep an eye on, just in case? A couple of the celiacs in my family also have grown either more sensitive to gluten as time goes on, or the reactions are occurring now to gluten levels that didn't used to cause them. My daughter reacts now to things that she could have just fine a few months back, for example. I have heard of other celiacs having this happen, as well.

The one bright spot, I figure, is that it's very motivating to stay gluten free, yeah? ;)

Marz Enthusiast
Marz
Posted

Welcome to the board, and congrats in getting a firm diagnosis of celiac disease - not that it's a great diagnosis, but now you know what's wrong with you at least ;)

Yup, this happened to me as well. Before going gluten-free my symptoms were pretty random - I could eat a pizza and feel fine afterward. Now that I'm gluten-free, eating even a spoonful of something containing gluten will start a bad reaction within 30 minutes, and symptoms can last a few hours (GI-wise) to days later (Neurologically/psychologically).

I also react to much, much smaller amounts of gluten - don't be surprised that as you become more experienced with avoiding gluten, that you start reacting to food that previously you could handle fine (that contain traces of gluten/made in a factory that processes wheat etc).

You may be lucky and find that your reaction will get a bit less extreme once your body is healed, and you may not be as sensitive to trace amounts, but you still need to be vigilant.

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

Celiac.com Sponsor (A8-M):


Bugsly Newbie
Bugsly
Posted
  • Author

Wow, thank you so much everyone. I am excited to be here and to learn more.

I actually was diagnosed with celiac when I was 2 years old. I missed 4 years of school when my body got so run down. I was getting daily IV's to suplement vitamins and nutrition. Then when I was about 16, my symptoms started disapearing and my Dr. at teh time told me my celiac was in remission. So basically long story short, I went off of the diet and NOW I am paying for it. I lost half my hair, have not had a period in over 2 1/2 years, among other things. Only recently has my cramping, the big D, bloating, and severe pain returened. Well, after going gluten free I am obviously doing MUCH MUCH better. I just thought it was curious that my reactions after accidently getting glutened appeared more quickly and with more power.

Anyway, thanks for the info and support. I am looking forward to getting to know everyone here better and learning from all of your experiences :)

Jill

sahm-i-am Apprentice
sahm-i-am
Posted

Welcome Jill! This is a GREAT resource for gluten sensitive folks like us. I am the only

Celiac (so far) in my family and it is nice to have a place to come to come vent and celebrate.

One thing I have learned in my short 6 months with Celiacs is that everybody's body reacts differently, symptoms range, and healing times vary. AND, doctors don't know a whole lot about it because of these facts and serious research is so new. They are learning more every day and things will change over time as they learn more. It is good to keep reading and stay informed, even after years living with it. You will never know it all.

Take care!

Wendi

sandsurfgirl Collaborator
sandsurfgirl
Posted

That doctor should lose his license!!! Celiac does NOT go into remission. ARGh that makes me angry.

Anyway, yes the reactions get way worse. I used to be random too. Sometimes i would eat pizza and feel fine and others get sick. However, I was ALWAYS just sort of sick, so maybe I was reacting and not realizing it because I had so many symptoms all the time.

Now if I get a small amount of gluten I'm sick and miserable. My body has no tolerance for it.

You need to contact that doctor and tell the idiot moron what he did to you by saying you can eat gluten!!! I'm not for lawsuits, but this is so blatantly bad I'd consult an attorney. Seriously, and usually I'm so against that sort of thing, but he damaged you. What he did was just so wrong.

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.