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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.

Carbamazepine Or Tegretol
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3 posts in this topic

I was just diagnosed with trigeminal neuralgia--a painful disorder involving the largest nerve in your face. The treatment the doctor prescribed is Tegretol, which is one of the various forms of carbamazepine, an anti-seizure medication. Have any of you taken this? Have you had problems with it. It looked like the ingredients were ok as far as celiac is concerned though I do need to call, but it seems like this is a serious med, and I wanted to know if you have had any problems with it in the past. Apparently, I need to get a medic alert bracelet with my dose since there are serious interaction risks with other drugs commonly administered in emergency situations.

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Here's a link to the PI (prescribing information). (You'll actually have to scroll down and click 'more' next to the drug name.) I find it useful to google these (with the syntax "prescribing information <drug name>" when I take something new.

While the inactive ingredient listing in the PI does mention starch, it is often NOT wheat starch. As you noted, however, it is absolutely best to call, as it could be.

Make sure to read the Contraindications and Warnings section, as well as the two sections Agents That May Affect Tegretol Plasma Levels and Effect of Tegretol on Plasma Levels of Concomitant Agents so that you know what other medications will change the effective dosage of this one (like Claritin, Advil, and grapefruit juice, among other prescription drugs) and what other medications this one will change the dosage of (tylenol, corticosteroids, some antibiotics, and birth control, among other prescription drugs).

If you're not used to reading PI's *PLEASE remember to take the information in context*. It reports *a lot* of information. And it can sound scarier than the true picture. It's useful for reference, but don't let it make you paranoid about the drug either. The FDA requires a lot of warning and cautionary information - and with good cause - but if you're not used to reading them, they can easily scare you. There's information there to work with, but not to panic over. It's good to be informed, but still work with your doctor on the application of that knowledge. (I don't know if you're familiar with reading these things or not, so this bit may be totally unnecessary for you.)

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Here's a link to the PI (prescribing information). (You'll actually have to scroll down and click 'more' next to the drug name.) I find it useful to google these (with the syntax "prescribing information <drug name>" when I take something new.

While the inactive ingredient listing in the PI does mention starch, it is often NOT wheat starch. As you noted, however, it is absolutely best to call, as it could be.

Make sure to read the Contraindications and Warnings section, as well as the two sections Agents That May Affect Tegretol Plasma Levels and Effect of Tegretol on Plasma Levels of Concomitant Agents so that you know what other medications will change the effective dosage of this one (like Claritin, Advil, and grapefruit juice, among other prescription drugs) and what other medications this one will change the dosage of (tylenol, corticosteroids, some antibiotics, and birth control, among other prescription drugs).

If you're not used to reading PI's *PLEASE remember to take the information in context*. It reports *a lot* of information. And it can sound scarier than the true picture. It's useful for reference, but don't let it make you paranoid about the drug either. The FDA requires a lot of warning and cautionary information - and with good cause - but if you're not used to reading them, they can easily scare you. There's information there to work with, but not to panic over. It's good to be informed, but still work with your doctor on the application of that knowledge. (I don't know if you're familiar with reading these things or not, so this bit may be totally unnecessary for you.)

Thanks for the info, tarnalberry. I actually did read this yesterday, for the most part--I skimmed some parts of it (yes, definitely some scary worst-case scenarios even though those don't apply to everyone), but it is always good to let people know that this is out there. I googled it as well. I'm definitely going to have to double check on the birth control since I believe that mine is estrogen-based rather than progestin-based.

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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