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Gluten contamination and other meds

Jennancognito

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Jennancognito Newbie
Jennancognito
Posted

I recently had an attack - something I ate was apparently contaminated with gluten. I went through a period of difficulty eating, pain, and weight loss over a month. But that's not the issue, that's celiac for you. I'm bipolar, and it seems my medications (like my nutrients) didn't absorb as they should. So I went through of month of deep depression, where I could barely move and barely take care of myself. My doctors have no solutions. I'm scared - I can't take a month out of my life because a mistake was made. I am so so so careful.

I've searched online but I just come up with warnings on gluten in pills. My situation is just miserable. What would you do if you were reliant on a medication to live?

I'm not even asking what to do; there's obviously no solution. Just if anyone has this problem, and how they get by without being afraid of everything they eat.

I guess I'm just curious who else worries about this.

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Victoria1234 Experienced
Victoria1234
Posted

I worry a lot. I'm on latuda for bipolar. As far as I know I'm doing well on not getting glutened so I haven't had your exact issue. But I worry I will. I'm currently on 20mg and taking at night with food for absorption. I worked my way down on it as it was making me deadened. Maybe if you switched meds that weren't so sensitive to celiac it would be better? Latuda costs a fortune but I'm using a coupon from their website so it's $15 a month. 

Ennis-TX Grand Master
Ennis-TX
Posted

I had to change over to taking a bunch of B-vitamins, magnesium, and CBD oils for my issues with bipolar and depression. Most of my bipolar issues leveled out once off gluten, still have a few swings every now and then.   But my issue is I am also highly allergic to corn......corn starch is a common binder in medicines so I have to be quite careful. In some cases the starch is processed in a way to remove the proteins that trigger my reaction. I can normally figure out by biting into the pills and chewing and checking for blood blisters in my mouth. Same with other forms of it in other foods etc. Seems quite hit and miss depending on how it is processed and sourced.    

My biggest fear and it has been talked about here before, but when you go to a hospital even if on your record you have celiac they will bring you food with gluten. -_- THIS scares the crap out of me that if I am out of it and eat the stuff. I ended up ordering custom red medical dog tags with my allergens, blood type, AI diseases, and emergency contact info. I also informed my family to bring me a stock of gluten-free protein bars and meal shakes if I get stuck in a hospital.

Funny thing is my depression hits hard every evening, and I end up just eating cups and cups of protein shake, ice cream and indulge in that comfort. >.> feel much better afterwards but sometimes I eat too much lol.

TexasJen Collaborator
TexasJen
Posted

You don't mention which medications you are on but several medications come in other forms besides pills:  There are sublingual strips, pills and liquids, injectables, and transdermal skin patches. All of these have their pluses and minuses but they would get around the issue of malabsorption due to a celiac flare.  You might talk to your GP/psychiatrist at your next appointment about these options?

kareng Grand Master
kareng
Posted

I saw a study ( not really the right word) and posted it before.  Someone looked at about 800 meds and only 11 had any verifiable gluten.  I think gluten is a very low risk in most perscriptiom medications.  

cyclinglady Grand Master
cyclinglady
Posted

Here is the most current gluten free drug list for 2017.  It is a work in progress, though.  There are fewer drugs on this current list than on his previous list, but I expect  the pharmacist is still working in it.  Check this list, if your medication is not on it, ask your own pharmacist to research for you.  Once he/she has come up with a few acceptable medications, call the manufacturers yourself.  As long as there are no gluten ingredients, you should be fine.  Then ask your doctor to prescribe them.  

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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