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

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

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

was it brand name, or generic?

biancad Newbie

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

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

psawyer Proficient

... 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

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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748

    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
    • knitty kitty
      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.