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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Glutened By Tylenol Extra Strenghth
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12 posts in this topic

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.

 

http://www.theceliacdiva.com/gluten-free-headache-medicine/

 

http://www.healthnowmedical.com/blog/2011/04/15/tylenol-gluten-intolerance-linked-to-liver-failure/

 

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.)

 

 

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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.

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was it brand name, or generic?

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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. :'-(

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

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... 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.
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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.

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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. :'-(

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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.

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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.

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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.

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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. :'-(
 

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