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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.

Celiac And Pain Meds
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6 posts in this topic

Hi,

 

This is my first post so hopefully I've read enough before posting! :)

 

I was recently diagnosed with celiac after a multi-year saga. I have a lot of neurological and joint pain which they think will be solved by the gluten-free diet, and are hoping I don't also have fibro!

 

I've been gluten-free for a week and have started feeling better, however, this morning, late morning, I started feeling really ucky again -- gas pains in my stomach, foggy head, etc. This is about the time that my pain meds (I take oxycontin because I absolutely cannot tolerate anything else -- I wish I had other options!) would be hitting my small intestine. The only other thing I'd had to eat was coffee with half and half and certified gluten-free/non-contaminated yogurt.

 

How terrible if the pain meds I depend on are going to exacerbate the problem. I looked at glutenfreedrugs.com but they only had information on oxycodone (which is 'quick release' instead of 'extended release,' and tends to get me more "high", not exactly something I can take at work), and my GI and pharmacy seem not to know of any brands that are certified gluten-free for oxycontin either. 

 

Help? If I get a brand name, I can have it dispensed as 'medically necessary' and the pharmacy will order it, but I can't find any reliable resources and I wouldn't know even which manufacturers to call... 

 

Thank you!

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You may have to call the manufacturer to find out. The thing to do is, take your prescription to the pharmacy and ask what company makes the pills.  they may have a phone number for them , too.  You then call and ask.  Sometimes you can find the info on their website, too.  Some companies will not come out and say "gluten-free".  They have some kind of legal statement that the product has no gluten ingredients but they don't guarantee.  Sometimes, a company won't say something is gluten-free because they don't test for gluten.  I have found very few medications to have gluten so you should be able to find a gluten-free pain reliever.

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Welcome! :)

 

I second what Karen said.  Oxycontin and a lot of pain meds can be very harsh on your stomach and many people cannot tolerate them on an empty stomach.  If you find that the one you have now doesn't have gluten, you may want to take it with more solid foods like gluten-free crackers or pretzels, whatever suits your fancy, and see if that helps.  As your intestines heal up from being gluten-free, you may have increased absorption of everything, including your pain meds.  With something super potent the difference may be pretty noticeable or more quick to come about, possibly making you think you have brain fog when they really kick in.  Also, you may want to pay close attention to how dairy makes you feel... try eating the same meal of yogurt and coffee on an empty stomach without the pain meds and see if the same thing happens.

 

To find out whether or not your current pain meds are gluten-free, check out the prescription bottle.  Somewhere on there or maybe the papers that come with it, is a manufacturer name.  Do an internet search and find their website and a phone number and give them a call.  Usually they can give you an answer right away.  Like Karen said, it is not common for gluten to be in drugs, and a lot of them are not certified, but just don't have any gluten ingredients, and that is okay.  

 

I really hope you do start to see some improvement with your neuro symptoms after going gluten-free!  It may take a while so just stick to the diet as strictly as you can, avoid eating out and such for now.  You also may want to limit your dairy intake for the first three months of healing, especially if your biopsy showed bad damage.  You seemed to have read a lot already, which is awesome, and if you have any more questions or need help feel free to ask! :)

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seconding the posters above. i also take pain medication for chronic pain, and i've called several manufacturers (in the US, the manufacturer, even of generics, should be listed on your bottle, then google the customer service number for that company). You may have to be persistent, and ask for a list of ALL The ingredients in the medication. Then ask again about anything that might be grain-derived. One manufacturer actually took several days to research and get back to me, but usually they can answer right away. I've found it also helps to disclaimer your questions with something like "i understand you don't test your final products for gluten content, so you can't guarantee anything is glutenfree. right now i'm just asking about specific ingredients or potential sources of contamination so my doctor and i can make the most informed decision."

 

dairy is suspect to me (especially in the early stages of healing), so maybe try taking your meds with a gluten-free and DF snack instead and see how they go down.

 

for what it's worth, i've actually gone WAY down in my pain medication usage since my intestines are healing up. i am on the much milder hydrocodone, but at one point i was taking 40mg/day, and now i'm usually around 15mg per day. that's even with being a LOT more active than i was at my sickest. (my pain meds are for a spinal cord injury that will only continue to worsen, and won't improve, so i can't say i've healed that up or anything.) i hope you can get some relief, too!

 

best of luck. this board has been so helpful, i just can't say enough good things about it. you've found a good crowd :)

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Brand name Vicodin is gluten free.  I think the generics are also but I always ask for brand name because I know it is.  I have had tons of dental work and am extremely sensitive to minute amounts of gluten and this works well for me.  I am also a light weight who will get stomach upset from most pain killers but this one works great on pain and does not upset my gut.  Make sure to take pain meds with a snack or on a full stomach!

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You may have to call the manufacturer to find out. The thing to do is, take your prescription to the pharmacy and ask what company makes the pills.  they may have a phone number for them , too.  You then call and ask.  Sometimes you can find the info on their website, too.  Some companies will not come out and say "gluten-free".  They have some kind of legal statement that the product has no gluten ingredients but they don't guarantee.  Sometimes, a company won't say something is gluten-free because they don't test for gluten.  I have found very few medications to have gluten so you should be able to find a gluten-free pain reliever.

Something else you might want to consider... I had to quit all forms of caffeine especially coffee :P  I miss it so much !  And cannot tolerate any dairy at all!!   Both these things bring on my symptoms as well as eggs and potatoes or anything with them in it :P   I really hope you can find out some positive results for your pain meds as I am on Topamax and could not imagine having to live with the pain if I had to stop that or go on the 'search' again uugg!   Good luck to you :D 

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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