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

Glutened By Tylenol Extra Strenghth

biancad

Recommended Posts

biancad Newbie
biancad
Posted

I've been gluten free for 12 days. Last night after my second outing since the hospital I took one Tylenol Extra Strength for a headache and joint pain. I was finally feeling better overall but very fatigued before last night.

 

After taking a tylenol, I have chest pain, shortness of breath, pressure in my chest, panic, fear to sleep, stomachache, nausea and numbness with stiffness in my left hand. I had previously read that Tylenol was gluten free on a gluten-free meds website. After the attack I re-read the bottle and read "Starch". I then found the following links.

 

Open Original Shared Link

 

Open Original Shared Link

 

I'm a mess today. Just like I was in the hospital 13 days ago. I'm scared that I've gone back to stage one. I hope it wears off soon so I can feel better and start feeling my left hand again. Anyone have the same experience?

 

B.

P.S-

Was on a limited gluten diet prior to hospitalizations.

Blood tests came back negative for gluten antibodies.

Genetic test pending.

Appt. with GI doc next week. (Nervous about a scope.)

 

 

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

I use Tylenol from time to time with no problem. The last I knew, the starch was cornstarch (as it almost invariably is in North America).

An aside: if you have already gone gluten-free, then a scope is probably pointless as it will likely be negative even if you do have celiac disease. That said, at 12 days gluten-free, you may still be healing and could have a random reaction to just about anything.

frieze Community Regular
frieze
Posted

was it brand name, or generic?

biancad Newbie
biancad
Posted
  • Author

It was name brand. But the links I posted above reflect that someone called Tylenol recently and they will not guarantee that their end product is gluten free. When I'm well, I will contact the gluten-free medicine website to ask them to update this fact. Until then, I will be recovering from a horrible set back. :'-(

biancad Newbie
biancad
Posted
  • Author

BTW, the label reads corn starch AND starch. :'-(

psawyer Proficient
psawyer
Posted

... someone called Tylenol recently and they will not guarantee that their end product is gluten free.

Of course they won't. That would create a legal liability (guarantee). Since they don't test their ingredients, they won't take legal responsibility for a possible error by one of their suppliers. That is a standard CYA disclaimer that you will see with almost every mainstream product, whether food or medication.
Adalaide Mentor
Adalaide
Posted

There is no manufacturer, to date, that I have contacted that guarantees that their drugs are gluten free. (And I have contacted a lot of manufacturers, both for otc and prescription.) This is for the reason Peter stated, because it creates a legal liability. Most I have spoken to will state that they don't use any gluten containing ingredients in a product but don't test the final product. I have never had a problem taking any such products.

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

Celiac.com Sponsor (A8-M):


biancad Newbie
biancad
Posted
  • Author

The bottle is brands new. Tylenol Extra Strength. Corn starch, powdered cellulose, pre gelatinized starch, shellac, sodium starch glycolate are the items posted. I'm not sure than why I'd have such a horrible reaction. :'-(

kareng Grand Master
kareng
Posted

The bottle is brands new. Tylenol Extra Strength. Corn starch, powdered cellulose, pre gelatinized starch, shellac, sodium starch glycolate are the items posted. I'm not sure than why I'd have such a horrible reaction. :'-(

Maybe you are having some other issues? You did already feel horrible when you took it.

psawyer Proficient
psawyer
Posted

Read ingredients carefully. Commas separate the ingredients. “Pre gelatinized starch” is not the same thing as “starch” – each and every word in the phrases delimited by the commas must be considered as part of the ingredient name. The entire name must be considered when matching to other lists. BTW, it is still corn starch, although pre-gelatanized, based on my knowledge.

dilettantesteph Collaborator
dilettantesteph
Posted

I'm sorry that you got glutened and hope that you will feel better soon.  From hard experience, I can tell you that it is really difficult to know where glutenings are coming from.  In my case, it takes about a day to know and by that time there are lots of possibilities.  This is especially true early on.  It will help to keep track with a food/symptom journal.  Be patient.  It gets easier as time goes on.

biancad Newbie
biancad
Posted
  • Author

Thank you for the replies. I was honestly feeling better before the Tylenol. I just had a minor headache, fatigue and joint aches. Now I feel like I have a spike stuck through the left side of my head and extreme nausea. The neuropathy is back as well. I honestly don't think I could feel worse unless you added back the "false" heart attack symptoms that I had that landed me in the ER in the first place.

 

I am dying to get the genetic results and current liver panel back from the labs next week. I am hoping to avoid a liver biopsy as well since the liver panel is high 60s when it should be in the teens.

 

I'm scared, frustrated and angry that this is happening to me. I know you all understand that. Given that I've never been sick my entire life, nor have I ever been hospitalized, this has come as an absolute shock to my family and I. Fingers crossed that I recover sometime soon, resume my normal active life and return to my job.

Thank you all for your support. It's a lonely place to be right now. :'-(
 

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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

      yes i do take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the...
    2. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    3. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
    4. trents
      - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    5. trents
      - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      yes i do take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      Is it gluten?

      By trents · Posted

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
×
×
  • 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.