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Arrgh!

spinsterwitch

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spinsterwitch Rookie
spinsterwitch
Posted

I was doing really well...even got through a trip to New Orleans (had to send food back a couple of times when my being allergic to wheat and flour got interpreted only as I couldn't eat wheat bread!) without too much hassle.

But since the trip, I've noticed a recurrance of symptoms. I'm wondering if I was starting to have symptoms on the trip as well although it was generally just minor stuff. Last week, I'd convinced myself it was PMS, but the symptoms are continuing well past that point.

The one thing new in my routine is that I had to switch to a mail-order pharmacy, and I know that at least one of the medications I'm taking is completely different (different manufacturer, different look to the pill) from what I had been getting before. What's especially troubling is that I wrote under "allergies" that I was allergic to gluten. If it is the new med, then they didn't even try.

Unfortunately, I'm feeling like crap today and can't even get in touch with my pharmacy or the drug company that made the drug.

This is more of a vent than anything else, but I'd love to have suggestions or hear other people's similar experiences.

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Takala Enthusiast
Takala
Posted

We are getting to the point in this country where we must demand that all pharmaceutical drugs have a full disclosure list of ingredients concerning allergens, and the country of origin, with a 24 hour toll free hotline to call- that has a live person who is fluent and competent on the other end.

This is because the drug companies (in cahoots with the insurance companies requiring use of cheaper generics and mail order ) are now manufacturing drugs overseas besides importing raw ingredients from overseas. There is nothing wrong with this, except that it is now leading to increasing DANGER to the consumer patient because there is no way to tell what is really in the drug. There are no laws requiring prescription drugs disclose allergens and no enforcement.

This is outrageous and it needs to stop.

skyyblues Newbie
skyyblues
Posted

I guess I am shocked by this. I am not sure why...I wouldn't think anything would suprise me anymore.... If I understand you correctly (which I hope I don't) my drugs are not screened for my listed allergens when I have my prescription filled at a local pharmacy? I know they don't have to list all ingredients under the guise of patented formulas etc... I would think that it would be mandatory though to somehow screen before dispensing medication to a person with allergic reactions? When I questioned my pharmacist regarding gluten in scripts I was currently taking I was surprised that he could not give me a straight answer. Now it may be clear as to why.. <_<

As I said I hope I misunderstand and if not my fingers will be very busy contacting everyone I can to find out why the H--- not! Thanks for any info.

Spinsterwitch, I hope you had a good time otherwise in New Orleans. It is one of my favorite places to visit.

mushroom Proficient
mushroom
Posted
As I said I hope I misunderstand

Nope. no misunderstanding there at all. That's exactly how it is. Sometimes the pharmacist can find out, sometimes not. I have been bitten by medications at least five times in the last year; one I didn't even realize because they said the side effects could be so bad that I thought it was the side effects; stopped taking it and found out later the side effects were gluten-induced. The whole thing must have been made of wheat--I like to died. One I was supposed to take as a prelude to something else totally messed up my life for months, because Pharmac (drug purchasing agency) does not import any gluten-free version into the country. :huh: I have asked my pharmacist to make sure all my scrips are gluten free, but... sometimes how can he know?

spinsterwitch Rookie
spinsterwitch
Posted
  • Author

Update: I contacted my mail order folks and was shocked to find out that they could not tell me if there was gluten in any of the drugs (nor did they say that they had made an attempt to find out). I was given a list of phone numbers for the different pharmiceutical companies to check out and sent on my way. This was particularly scary to me because another allergy I listed (which is also often an inactive ingredient) has in the past caused anaphylaxis and hives. I've sent them an e-mail questioning how safe I should consider medications that they are sending me.

The Pfizer rep I spoke to, after telling me that the med was gluten free, read a disclaimer that they cannot guarantee that minute amounts of contaminant are not present, as they do not have complete control over their suppliers.

The good (?) news is that all the drugs I was switched to are gluten free. The bad news, I don't know what's getting to me now. I guess I'll start on the rice, boiled chicken and steamed veggie regimen again and start adding things in slowly. *Sigh*

Peace,

Spins

spinsterwitch Rookie
spinsterwitch
Posted
  • Author

I forgot to add that I had a wonderful time in New Orleans. I was sad at the dietary restrictions, but by asking the right questions and not being shy about sending things back when I needed to, I did pretty well there. I've really only noticed feeling sick since returning from the trip.

Peace,

Spins

ang1e0251 Contributor
ang1e0251
Posted

That kind of points to something in your living or working situation or something you ingest at home but not on your trip. Think about that and see if it clears up. For example, you probably did not cook in your room on your trip. But at home, you do cook. Is there gluten in your house? If there is, you may need to take a hard look at your situation. You obviously can't be well living with gluten. If that doesn't sound right, what about your work situation? Does it sound like a gluteny work space?

If none of that rings true, then look at what you eat and drink. How does it differ from your trip? Do you drink water from your tap or fridge? Do you flavor your coffee or tea?

What about construction? Have you been exposed to dry wall or art or craft supplies?

It's a lot to think about but since you felt well on your trip, that will be a big clue that you can be well if conditions are right. Maybe you just need to be on endless vacation!!

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    • captaincrab55
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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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