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

Can My Response To Gluten Change With Time?

rustycat

Recommended Posts

rustycat Rookie
rustycat
Posted

The first time that I was accidentally glutened, I had my usual reaction of anxiety, joint pain and severe C.

Yesterday, I think I might have been accidentally glutened, but my reaction was a bit of anxiety and painful gas with no C or joint pain at all.

I'm wondering if anyone experiences very different reactions and what they think can cause them to be so varied. I've been assuming that my reaction would always be the same.

I didn't eat anything yesterday that I hadn't eaten in the past week or so with no problems, so any glutening would have been due to cc in my kitchen from an extremely small amount of gluten. My cooking area, utensils and pots are all dedicated gluten free.

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

Celiac.com Sponsor (A8-M):


dhd2000 Newbie
dhd2000
Posted

Hi, my symptoms have definitely chaged over time. I used to have DH (the skin rash associated with celiacs), heart palpatations, anxiety, the big C... I don't get DH at all anymore, but now I can get stomach cramps, gas, bloating, the big D or C, anxiety... Strangely, it's not always the same symptom and I can't figure out a pattern. I have gotten much better about avoiding gluten at all costs though, so the reactions are rare now.

Dee in NC

cassP Contributor
cassP
Posted

i dont know if there's any rhyme or reason to it... i had a few symptoms that were fairly consistent.... (painful gas/"C"/bloating/itchy/irritable/super sleepy or "high"/acid reflux)... but i also had random crazy symptoms like Tachycardia with OVERHEATING & NAUSEA... or CRAZY anxiety..

and of course the BMS were stereotypical but more "C" than "D"... or combined.

before i first went mostly off gluten- i had severe excema on my foot for 5 years- miserable... i would wake up in the middle of the night to itch it... i would have to make myself stop because it would end up bleeding. thank God i never got that again... and now i have a small thing of DH- not too bad.

but ya- symptoms can vary greatly and be very surprising whether on gluten or being accidentally glutened after being gluten free

oh, and there was also a 2 year period where i had the worst Post Nasal drip... ok, i'll stop, lol

MelindaLee Contributor
MelindaLee
Posted

I only know of 1 time I certainly had gluten after going gluten-free. That time, I had the full gamet of neurological and gi symptoms. Other times, when I have suspected CC, I have had cramping, and some irregularity, and headaches, not usually my other neurological symptoms. My joints will also get achy...but not real bad. Each time it's similar, but not the same. Not sure if that helps :blink:

rustycat Rookie
rustycat
Posted
  • Author

Thanks very much for the input. It sounds like I'm not the only one who gets different symptoms.

It has been a couple of months since I became completely gluten free, so I wonder if my villi are healing and maybe that's why my reactions are different. The painful gassy reaction is something that I had years ago (although I didn't know that gluten was the cause), but not recently.

CMCM Rising Star
CMCM
Posted

I absolutely believe your symptoms CAN vary. Mine certainly have! I think possibly the variety of symptoms I experience have something to do with the nature of the food I eat, things in combination, and it's not strictly due to gluten, but rather gluten AND other things I'm sensitive to. I can get gas, or the big D, or heartburn, or joint pain, or sometimes a horrible facial rash, or quite often mouth sores within an hour or two (or sooner). It's all over the board with me, and not usually the same two times running.

On the other hand, my mom, who has the most severe reactions possible to gluten, she gets violent ill within a half hour of accidentally getting any gluten at all, no matter who small the amount may be. I'm glad I don't react like she does!

SGWhiskers Collaborator
SGWhiskers
Posted

My reactions got milder, but were all variations on the symptoms I had before going gluten-free. I did notice that other food intolerances that were not obvious before, started showing up as different kinds of milder non-typical for me reactions. I keep a gluten-free house as well and still manage to cross contaminate myself every month or two from something that should have been safe. Keep up the vigilance and the food diary. Between the two, you will get it figured out.

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

Celiac.com Sponsor (A8-M):


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

      Are Lindt chocolate balls gluten free?

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

      Are Lindt chocolate balls gluten free?

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

      My only proof

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

      My only proof

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

      Are Lindt chocolate balls gluten free?

      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.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748
    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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.