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

How Long Did It Take Before You Started Reacting To Being Glutened


zus888

Recommended Posts

zus888 Contributor

I'm just wondering. How long did it take (after starting the diet) for you to start noticing when you were glutened? Also did you have symptoms prior to going on the diet?

I'm asymptomatic (though I'm always fatigued and people do make comments regularly about my inability to remember anything), and am wondering if there will be a point where I start reacting to gluten and when that typically is? I know everyone's reaction is different, but I'm wondering if there's an average timeframe.


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



Celiac.com Sponsor (A8-M):



SGWhiskers Collaborator

I had neuro symptoms and felt more awake after several weeks and was functional again by 3 months. My memory improved some around 18 months, but it is still weaker than it was. I discovered that almost immediately after going gluten free, my neuro symptoms showed little bits of improvement, but that when I made mistakes I had more pain and fatigue again.

I'm not sure if this helps, since I wasn't asymptomatic, but it sounds like you are not entirely asymptomatic either. Unlike many posters here, my cross contamination reactions did not bring on symptoms that were worse than prior to diagnosis. My reactions have continued to get milder and milder since diagnosis. Although comparing those days to normal days, it feels like someone shot me in the head whereas I was used to that feeling before.

eatmeat4good Enthusiast

I know within 24 hours of being accidentally glutened. I get depressed, spacey, foggy, angry, tired, headache, strangely no stomach problems, but terrible mood problems and a migraine headache that lasts about 3 days. Some people don't have symptoms or can't tell that they do. My son was only gluten free for 4 days and then challenged it and he immediately got sharp stomach pains and described it as shards of glass or a knofe stabbing him in the belly. Now when glutened accidentally that is what he gets, plus a 24 hour nap. He is absolutely fatigued and cannot be woken. It is an absolute stupor. I am always shocked to hear that people can be without symptoms when glutened, because our symptoms are really loud and clear. Well, loud and clear ONLY now that we know what is causing it. We both went years with these symptoms wondering what the heck was wrong with us.

If you are asymptomatic, or you just have and memory problems, you may only notice that these get better slowly over time. You might begin to connect bouts of fatigue or spaciness with being glutened, but that is not always the case.

zus888 Contributor

Yeah, I'm only at the beginning of my diet and am not sure when I'll start noticing if I've been glutened. I have heard of people who seem to not have symptoms to suddenly start having them after being on the diet, but I'm not sure how far along in the diet they were before they started being able to tell.

love2travel Mentor

I've been gluten-free for just over a month EXCEPT just found out that a product that was gluten-free online (and via phone call) was NOT gluten-free after all (received an email from the company apologizing). They are corn tortilla chips and I ate them three times in the last month and had zero reaction to them. Zip. Zilch. So I THOUGHT I was totally gluten-free but I had those dumb chips. Still have had no reaction to anything else. On my gluten challenge for three months after being totally gluten-free five months same thing - not one single reaction. It's a weird thing, alright. :huh:

zus888 Contributor

I'm bumping this up to see if there's anyone else who has anything to add. I'll soon be 2 weeks gluten-free, and I have had no signs of being glutened. That could be because it's too soon to tell, I haven't been glutened yet, or I have silent celiac. I'm wondering if there's a point at which I should be able to know if I am a silent celiac or not. Surely, I'm going to get glutened. I'm just wondering how long most people are gluten-free before they start reacting to being glutened.

Strawberry-Jam Enthusiast

I don't know! I'm on week 3/4 and I still don't know what my symptoms are. I'm still having near-constant gas, headaches, and some other things, but, idk... I had a bite of bread yesterday on accident and I haven't really suffered anything unusual from it so far... and I've been so paranoid from CC, but I don't guess CC is hurting me yet?

I too am wondering how long it will take me to start getting really sensitive to the CC I am being paranoid about already!


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

I'm wondering the same thing as I've been gluten-free for six weeks. I know I was accidentally glutened twice (was informed by a company that their gluten-free product was no longer gluten-free after I ingested it) but nothing happened. No symptoms at all. It's nerve wracking as I cannot tell whether I have been glutened besides those two times. :huh:

Archived

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

  • 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,406
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.