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I Think It's Sad When Pharmacists Can't Read Anymore...

Ashley

By Ashley
in Coping with Celiac Disease

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Ashley Enthusiast
Ashley
Posted

I got placed on some antibiotics for swelling, mucus in the sinus (got circular flow in the left in frontal sinus, if it doesn't clear, more sinus surgery, yippee!!! <_< ) So, the doctor highly recommended I went on probiotics for the time I take it. Went to the pharmacy, got the 'scripts filled and I asked, just to be safe, if the product was gluten-free and explained what gluten was, what it was in ect. The lady goes asks this guy and comes back and says "There's whey in it, and it's from wheat." I really wanted to scream out "DUNCE!!!" So, my mom and I went back and forward with the lady until we said fine, just give us the stupid(that word not said but thought more than once) probiotic anyway.

The back reads: "Lactobacillus GG is grown on whey and will contain trace levels of (less than 15 ppm capsule) of casein and whey, which are proteins found in milk.

MILK!!! Grr...it gets so frustrating sometimes, because people can be so ignorant, so, there's probably been a bunch of times were I’ve gotten something with gluten or deprived of something that actually DIDN'T have gluten in it...

So, the moral is, better recheck it yourself. I'd be happy to read some the experiences of others with problems like this, a lot of them are funny because it really shows how people are really clueless! :lol:

-Ash

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flagbabyds Collaborator
flagbabyds
Posted

I completely agree. Just good that you read the ingredients anyway. I am fortunate to have a pharmacist, who when she gets a prescripton in my name, immediately calls the company to make sure it is gluten-free/CF and then puts a note on it so if I come to pick it up when she is not working, then they know that it is gluten-free and I can have it. It is very helpful to make friends with a pharmacist and ask them to call the companies on the products you are not sure of.

mmaccartney Explorer
mmaccartney
Posted

I typically go to a pharamacy at a loacl supermarket as the lead pharmacist is great! She will research the ingredients of a medicine for me and even still provides me the ingredients to double check!

Not all of the pharmacists there are good though. One guy was a particular ass. I told him that I couldn't have WRBO or milk and if the medicine contained it I could not have it. He said ok and filled it. When I came back I asked him again if the medicine had WRBO or milk. He responded with "I don't know, I have no way of telling." I said "Can I have the ingredients list then so that I can check?" he said "No, we don't have the ingredients." (I knew this was a lie, the lead Pharma checks every time and gives me the list!). I responded with "OK then, those items are poisonous to me, can I return the medicine if I find that it contains those items when I call the company?" he said "No, we cannot allow returns of medicine"

What an incosiderate jerk! Needless to say I left without the medicine (which he then had to account for somehow, and reverse the sale, etc!) and the very next day I contacted the lead pharmacist and told her all about it. She was quite angry to say the least!

plantime Contributor
plantime
Posted

I love my pharmacist and my little, hometown pharmacy. They check everything for me. Yes, it does cost me more than going to Walmart or Walgreens, but I am quite willing to pay extra for the help and service. My health is worth it!

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      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
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      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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