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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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On 9/24/2017 at 12:30 PM, SevereCD02 said:

So, where to begin... I was officially diagnosed with Celiac Disease about 2.5 years ago and have been trying to fully heal since then. I knew prior that I had celiac disease but didn't know how serious being gluten free needed to be if you have it. My intestines got so damaged that I had no energy (needed about 12 hours of sleep a day when I normally would sleep 8) and could barely function. I ended up having to quit my job because of how much time I had missed (had used all FMLA, vacation, etc) and spent about 5-6 months recovering till I had enough energy to work a 32 hour/week job but even then was calling out because of gluten exposure.

The biggest problem for me has been Rx medication. Food has been hardly an issue at all, at least in comparison. I currently take 2 types of prescriptions and have had problems with both over the past 2.5 years; Hypothyroid medication (T3/T4) & SSRI for depression/energy. I used to go between Paxil and Cymbalta. I would be on one for about 9 months, switch to the other, and repeat (because of the immune system's "short term memory"). I've had a lot of trouble with generic brands and more recently have been using only name brands because they are the only ones now that are listed as Gluten Free on glutenfreedrugs.com, but, now I seem to be having problems with them as well.

My doctor has told me that I'm very sensitive to gluten (I think she said I've ranged from an 8-12?). I'm not sure what scale she was referring to, but I know I'm very sensitive based on how my body's reacted to the smallest amount of gluten. When I ingest gluten, my body seems to react by my gallbladder producing a lot more bile (this is most noticeable about 8 hours after I consume gluten), which causes me to have severe diarrhea for about a week (it's basically all liquid). I take my Rx medications everyday, so it's non-stop diarrhea, which makes it hard to stay hydrated. The more water I drink, the more I just end up ****ing it out. I've been taking Benadryl at night because I heard it can help with upset stomach for people with celiac disease. Before I started taking the Benadryl at night I was waking up after about 6 hours of sleeping with extreme stomach pain (too much bile in my stomach?) and having to rush to the bathroom, and would be in there for about an hour.

I'm very in tune to knowing when I'm getting gluten exposure for 2 reasons: 1) the slightest amount will cause my stool to get softer and I can smell a difference when I go to the bathroom (my guess is it's from the bile, which has a strong odor), and 2) the amount of long acting insulin required for me per day is less depending on how damaged my small intestines are (I have type 1 Diabetes).

I started taking Cymbalta 60 mg about 2 weeks ago and notice severe gluten exposure. I was on it for about 5 days and stopped taking it for a day to see if the symptoms lessened and I couldn't see a difference from only a day. I tried to stop taking it for 2 days but the withdrawl symptoms were too severe (intense sadness/hopelessness, strong suicidal thoughts, etc) and I don't even remember if the gluten exposure symptoms lessened because I could barely function mentally. I'm pretty sure that's where the gluten is coming from because it was the biggest change at the time. I had actually switched from a generic Cymbalta (duloxetine by Mylan) slightly early from my 9 month usual switch because I was having gluten symptoms (at the time, glutenfreedrugs.com listed it on their list but soon changed it to "now questionable").

I'm currently trying Zoloft (been on it for about 3 days now) and the gluten symptoms seem to be slightly less but I won't know for at least another few days. Plus, I don't know if it's actually going to work for me (depression wise). I was going between Paxil & Cymbalta for about 15 years and they were working for me very well (as far as depression) up until recently (because of gluten). I know I've tried Celexa, Lexipro, & Wellbutrin in the past and cannot take them because they either make things worse or the negative side effects outweigh the benefits. I may have tried another type or two of SSRI but it's been so long that I can't remember for sure.

I'm making this post to try and get some advice, or even just words of encouragement, on any generic Rx versions of Cymbalta (and Paxil as well, but I won't be taking it for a while so it's less relevant at this point) that people have recently had success with. I've searched online & this site but haven't been able to find anything recent about these medications (most of the posts I've found are from many years ago). I'm scared. Scared of all the times I want to kill myself in any given day because of not taking an SSRI to try and reduce the gluten exposure. Scared that things will get as bad as they've gotten before and I will have to quit my job again. Scared to cry because I'll become even more dehydrated and may not be able to keep fluid in me because of my body is currently not being able to absorb water the way I need it to. The past 3 years have been really tough and I don't really know where to turn at this point. Sorry if this post isn't the most organised. I'm currently an emotional wreck while typing this and at least trying to get out all the important info.

Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Pedialyte Advanced Care+
Benadryl

Hello

Corn acts like gluten in many gluten sensitive people. It has the same genetic make up as gluten. Schar products and almost everything has corn in it.  Look at the corn forums, their is a bunch of names it goes under- maltodextrin, maize, do some research.  If my son eats anything corny, he has anxiety, depression etc. You might be one of those that are reacting to corn and all the names it is under and the massive products that it is in.  Good luck. Best of health.

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39 minutes ago, PammyAnne said:

I didn't even get to the end of your post yet because I was struck by your saying you took Benadryl. Benadryl contains gluten! I found out after I had taken some (generic store version) for an allergic reaction to toothpaste. After I got worse, I checked on the store brand and found it contained gluten, so I went to buy some name brand Benadryl and called their customer information number from the store because nothing on the packaging or the ingredient list indicated gluten. But the woman I spoke to said none of the Benadryl products--tablets, capsules, etc.-- were gluten free. I asked her why would a product that people take to lessen an allergic reaction contain a known allergen? She said they do not claim to be for that use. 

Gluten in medications is extremely rare. Just because a company does not want to test for gluten, does not mean it isn't gluten-free.

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Hmm, I haven't taken it for several days @PammyAnne. I had never tried it before up until a few days ago so I have no idea if it actually was causing anything. 

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1 hour ago, PammyAnne said:

I didn't even get to the end of your post yet because I was struck by your saying you took Benadryl. Benadryl contains gluten! I found out after I had taken some (generic store version) for an allergic reaction to toothpaste. After I got worse, I checked on the store brand and found it contained gluten, so I went to buy some name brand Benadryl and called their customer information number from the store because nothing on the packaging or the ingredient list indicated gluten. But the woman I spoke to said none of the Benadryl products--tablets, capsules, etc.-- were gluten free. I asked her why would a product that people take to lessen an allergic reaction contain a known allergen? She said they do not claim to be for that use. 

PammyAnne, I bet you asked her if Benadryl was gluten free. So she said no because it's a cya statement. Since they don't test it, they cover their rear by saying no. Their lawyers tell companies to do that. Like Karen said, just because it doesn't say gluten free on it, doesn't mean it contains wheat, barley or rye. You would have done better to have asked her if it contains wheat, barley or rye. I know it sounds ridiculous but that's they way the lawyers tell them to do it so they don't get sued. Also, it sounds like the person you spoke with was fairly new. Most of the time they will say they don't use any gluten ingredients in the product but it is not gluten free.

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My first question is always "is it gluten-free"?  If the answer is yes, then it's thank you and hang up. If it's no, then I ask if the product actually contains gluten, i.e., wheat, barley or rye, or if it's produced in a facility that also processes those ingredients, or if they just can't speak for the handling practices of their suppliers.  (I'm familiar with the legal departments' CYA statements. I tried to get info on gluten in my cosmetics, but that's a different post!) But I want to know if it's a definitely-contains-gluten, in which case I'll put it on my "do not buy" list or if it's a "maybe-trace-cross-contamination" and if it's something I really, really want, I might try it and see if it bothers me.  Benadryl's rep told me it did contain gluten.  I didn't pursue the matter any further as to the specific grain, I just wrote it on my "do not buy" list. And expressed my frustration and disappointment that they chose to include a known allergen in their product.  They may not market it or claim it's for allergic reactions, but they must be aware that many people's first thought when they seem to be having an allergic reaction is to take a Benadryl. And that they should at least indicate on the packaging that it did contain gluten. It shouldn't take having to call during business hours, Monday thru Friday, to be able to find out there's gluten in the product. Maybe she was a new rep, but she said she'd pass on my comments (for all the good it'll do!!) So that's the experience I'm drawing from.

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https://pillbox.nlm.nih.gov/pillimage/search.php

This is the official website which lists all of the inactive ingredients in all brands of medicine. Ask your pharmacist for the NDC number of the brand they are using on everything you take. When you pull that brand of your medicine up click on MORE INFORMATION and it will list every inactive ingredient, which is where you could find hidden gluten. It's a wonderful resource and many are not aware how to find this list for every drug. Hope this helps you. 

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My apologies to Starcaster2358, I didn't mean to go off on a tangent.  You mentioned taking Benadryl at night, I just wanted to bring it to your attention as something you might want to check on.  Their rep did tell me, possibly inaccurately, that it definitely contained gluten. (It's a popular and inexpensive binder, I've found it in a lot of my OTC meds, sometimes listed in the ingredients, sometimes not), It could be adding to your troubles.

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7 hours ago, PammyAnne said:

My apologies to Starcaster2358, I didn't mean to go off on a tangent.  You mentioned taking Benadryl at night, I just wanted to bring it to your attention as something you might want to check on.  Their rep did tell me, possibly inaccurately, that it definitely contained gluten. (It's a popular and inexpensive binder, I've found it in a lot of my OTC meds, sometimes listed in the ingredients, sometimes not), It could be adding to your troubles.

If you wanted this to be helpful, you would tell us which product contained gluten.  Benadryl makes so many different items - pills, syrup, capsules, etc.  I doubt they all contain gluten.  

I keep trying to find the study that was done of many medications and they only found actual gluten in a tiny number.

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9 minutes ago, kareng said:

If you wanted this to be helpful, you would tell us which product contained gluten.  Benadryl makes so many different items - pills, syrup, capsules, etc.  I doubt they all contain gluten.  

I keep trying to find the study that was done of many medications and they only found actual gluten in a tiny number.

https://www.glutenfreewatchdog.org/product/benadryl-allergy-not-labeled-gluten-free/475

 

Report Date: 05/12/2016

The sample was tested using both the sandwich and competitive R5 ELISAs. 

Sandwich R5 ELISA: Both extractions tested below the lower limit of quantification for the assay used of 5 ppm gluten.

Competitive R5 ELISA: The gluten level of the two extractions is 12 ppm and 13 ppm.

>.> Mixed test, but below 20ppm so by FDA standards gluten-free, not something I would suggest for super sensitive people. Again this was one lot test from 2016 I doubt that batch is still on shelves. But no telling of the gluten content in what is on shelves now.

PS GlutenFreeWatchDog is a paid site, but the owner uses the money to pay for lab testing of products, running the site, etc. She is recently involved in filing a petition with the FDA and regulating gluten free labeling better. The site is worth the money as they post about contamination in products, and test products weekly.

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I spoke with my Dr today about MAOI's and she doesn't know much about them so I'll be looking for a psychiatrist/psychologist. She did have some samples of Trintellix that I can try. It's apparently a kind of mix between an SSRI & MAOI. It's a fairly new drug (used to be called Brintellix). I wasn't able to find Trintellix on pill box by name search. Has anyone tried it or at least know if it's gluten free? It's not listed on glutenfreedrugs.com either.

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1 hour ago, SevereCD02 said:

I spoke with my Dr today about MAOI's and she doesn't know much about them so I'll be looking for a psychiatrist/psychologist. She did have some samples of Trintellix that I can try. It's apparently a kind of mix between an SSRI & MAOI. It's a fairly new drug (used to be called Brintellix). I wasn't able to find Trintellix on pill box by name search. Has anyone tried it or at least know if it's gluten free? It's not listed on glutenfreedrugs.com either.

They have a web site. I looked at the ingredients and they look to be safe.  Here is a link to the companies FAQ section. A pharmacist should be able to say for sure if the are gluten free.

https://us.trintellix.com/about/frequently-asked-questions

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Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Pedialyte Advanced Care+
Benadryl

Hello SevereCD..........I, too, am a very sensitive Celiac so your acronym hit home with me!  :)  I'll address your concerns about meds......

I use Benadryl every single night because of allergies.  I take the Children's liquid version because I have more control over dosing with a liquid and I am not a person to take many meds at all and am thin so when I do, I usually take children's doses because they work for me at that dose.  The children's version is 25mg per teaspoon, which is half the dose of the adult stuff.  It is gluten free 100% because if it weren't, after using it every day for awhile, I would be dead from diarrhea. :o  I do not know if the adult version (pills) are gluten free because I never take them.  I also use the Fast Melt/chewables version of them (kids) when I travel and those are gluten free also.  You can take 2 teaspoons of it if you want the adult dose.  Usually with meds, taking plain tablets is safer and most likely gluten free than taking something like Liqui-gel type caps.  But, as always, read those labels and learn ingredients because company reps have no clue what is gluten free or not unless they have Celiac themselves or the company actually labels it gluten free.  In 12 years gluten free, I have come across very little medication (plain tablets) that contain gluten.  Manufacturers are wising up to this and some have changed ingredients to be gluten free.

https://www.benadryl.com/products/childrens-benadryl-allergy-liquid#ingredients

Schar breads are all done in dedicated facilities and they are a leader in the gluten free food world so the bread is gluten free.  You might have a problem with another ingredient in it.  I have had the Schar breads and they are actually pretty good.

Ensure is gluten free BUT read the ingredients.  The stuff is crap.  It contains Carrageenan , which can be a major intestinal irritant for many people......as in diarrhea.  You would be better off making your own power shakes with natural ingredients that agree with you. Do you have a problem with dairy?  I still do, after 12 years gluten-free, and have to eat dairy lite.  I use soy milk for power shakes because the milk kills me.

Pedialyte........ahhhhhhh, my favorite hydrater when I was first diagnosed!  It looks like the advanced version is gluten free but it also contains pre-biotics.  Those are normally a very good thing to take but if your gut is still compromised, it might be too soon to be taking them.  They can cause problems for some people so maybe try the plain version of Pedialyte?  I never had a problem with that even when first diagnosed when my gut was a mess.

As for thyroid meds, I use Nature-throid and that is gluten free. I have been taking it for YEARS with zero issues.

I hope this helps you and that you feel better soon!

 

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On 10/3/2017 at 5:23 AM, kareng said:

If you wanted this to be helpful, you would tell us which product contained gluten.  Benadryl makes so many different items - pills, syrup, capsules, etc.  I doubt they all contain gluten.  

I keep trying to find the study that was done of many medications and they only found actual gluten in a tiny number.

 

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Dear kareng, in my original post I mentioned the Benadryl rep stated none of their formulations (tablets, capsules etc) were gluten free.  Is that helpful enough for you? (And I've already addressed above the difference between the company not wanting to make the claim of gluten free for legal reasons and definitely stating a product does have gluten; the rep stated that gluten is an ingredient).

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17 minutes ago, PammyAnne said:

Dear kareng, in my original post I mentioned the Benadryl rep stated none of their formulations (tablets, capsules etc) were gluten free.  Is that helpful enough for you? (And I've already addressed above the difference between the company not wanting to make the claim of gluten free for legal reasons and definitely stating a product does have gluten; the rep stated that gluten is an ingredient).

For instance- there is no gluten in these ingredients on the tablets -

  • Ingredient Name
    Diphenhydramine HCl 25 mg

    Ingredient Purpose
    Antihistamine

    Inactive Ingredients
    carnauba wax, croscarmellose sodium, D&C red no. 27 aluminum lake, dibasic calcium phosphate, hypromellose, magnesium stearate, microcrystalline cellulose, polyethylene glycol, polysorbate 80, titanium dioxide

    Each tablet contains: calcium 20 mg

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