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SevereCD02 posted a topic in Gluten-Free Foods, Products, Shopping & MedicationsSo, 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
Soooooo, how many of you realized that Sodium Starch Glycolate (a common filler in EVERYTHING) is considered gluten and toxic to those of us who have severe Celiac? I learned the hard way..... After being bitten by what they think was a deer tick (had a round bullseye rash) I was put on what was supposed to be a gluten free drug. I was SICKER after taking the drug...dawned on me I had better research the filler ingredients. Turns out to those very sensitive, SODIUM STARCH GLYCOLATE is in the same family as gluten and cannot be tolerated. Now.....go to www.glutenfreedrugs.com and they list SO many drugs that indeed CONTAIN this hidden gluten! I have been getting sick and not understanding why.....now I know. Please let everyone know about this hidden substance that should be included in the GLUTEN TOXIC SUBSTANCES that make us so very sick