Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Sick And Frustrated


Adalaide

Recommended Posts

Adalaide Mentor

So it took some time but I think I do reasonably okay. I deal with things as they come up and do really well with laughing things off and taking them in stride when things go poorly. I even joked about how sick I am. I'm pretty competitive by nature and my husband was also sick. Well I was to the doctor today and apparently I have a sinus infection because I had to get sick better than him. B)

Unfortunately I couldn't get an appointment until 2 this afternoon. I knew what that meant when I made it. It meant that most if not all drug manufacturers would be closed by the time I got done. Pharmacists don't have the time, patience or frankly enough of a clue about what the heck gluten is to make a call to see if a drug is gluten free. I wouldn't trust one to call for me. Why? Well, because of the response I got today from Sandoz when I called about my z-pack. (Apparently I've developed an allergic reaction to penicillin, oh lucky me.)

So, there I am in the waiting room using every ounce of breath I can muster to scream into the phone. I barely manage to get my voice above a whisper and have to repeat myself several times to the rep before she understands why I'm calling. Finally, she says that they don't test their final product or certify anything as gluten free. Their supplier has notified them that their xanthum gum is wheat derived but that they consider their final product gluten free. She concludes by telling me that therefore Sandoz considers this drug to be gluten free.

Um... what freaking planet do you have to be from to think you can convince me to take a pill made of wheat?!?! Also, I'm pretty sure any pharmacist who made that call would have told me it was gluten free and I would have filled it and then not been able to figure out why I was getting so much sicker. So I guess that is fair warning to those who trust pharmacists to make that call. Don't.

But anyway. I've about had it. I've been sick since Thursday. I haven't been able to speak for 4 days. I've lost 5 pounds over the weekend. I haven't eaten because my throat hurts so much I can't bear the thought of food. I haven't slept for more than 4 extremely interrupted hours a day since Thursday. And then some moron on the phone makes me repeat myself like 100 times and tells me pills made of wheat are gluten free. I'd scream if I even could!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast
<_<:ph34r::angry:
kareng Grand Master

If you can't get another that you feel safe with, you are choosing to maybe loose your hearing, go into the hospital, pneumonia, suffer for another week or so until it gets so bad you will have to have IV antibiotics?

I would have taken it. At least a couple of doses until tomorrow and the doc coulsd order something else or I could get a different nrand from a different pharmacy.

If there was still wheat in the drop of xantham gum in a pill, its very very very small. I believe xantham gum, from any source, is considered gluten-free as it is so processed. Will see what I can find out.,

Xantham gum is on the safe list. I think any wheat that may have ever been near it is processed out.

kareng Grand Master

Have you tried a sinus rinse? Like tis one? Open Original Shared Link

My son had a sinus infection and it helps alot. More than alot! The ENT said not to use a nettie pot because it sometimes sends the water thru too fast. Use the kind with the squirt bottles. My son says to do it it a hot shower. Its messy and gross.

I think you can get those Cepachol throat srpays that numb the throat. Suck on popsicles.

Cepachol looks gluten-free but chloraseptic says it is

Open Original Shared Link

Jodster72 Rookie

Adelaide:(

Sure hope your feeling better soon!!!!

I know that since all my issues started last year I have mysteriously become allergic to every antibiotic they've tried lol

So I suffer or suffer !!!

Sending you speedy get wells and hoping you can get something else o replace it quickly:)

Jody

nvsmom Community Regular

(((HUGS))) :(

Adalaide Mentor

I do use a throat spray, it's not particularly effective for more than a few minutes at a time at this point and I am probably using far more than any doctor would be comfortable with me using but whatever. Don't use for more than 2 days? Yeah, got that covered times 2. Spit it out? I'm pretty sure once you've sprayed it directly onto the back of your throat we're way past spitting. If it wasn't safe to actually consume it wouldn't be meant to be put in your mouth. And I'll keep right on telling myself that.

It took feeling like I was on death's doorstep over the weekend to get me to use flonase. I don't do water on my face and frankly unless there is a gun to my head I'm not putting water up my nose. I get that those are great for some people and my best friend swears by them. If they work for someone else I think that's just super. It's just a thing.

I was able to get something I am comfortable taking. I'm gonna be honest though. I'm sicker than I've been in 5 years, in a sick sort of way not a celiac sort of way. I will not risk taking my immune system from hyper drive (which isn't working anyway) to completely whacked out by throwing wheat at it. No matter how "safe" it supposedly is. I'm pretty sure I'm in no state to do any sort of critical thinking and until I can look it up for myself the last think I'll do is trust some random person on the phone getting paid minimum wage to tell me that her company's product is perfectly safe for me and I should buy it. Given a choice between two pills where one is made of wheat and one isn't, I'll take the one that isn't every time. Even if the one that is is theoretically perfectly safe.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Oh that sticks :(

I'm allergic to penicillian (and its family), septra (and its family), and azethromaicin. Reactions from any one of those is not fun (first two gave me very bad hives for a week and the last set my body a fire).

Warm tea and honey for that throat should help.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Aretaeus Cappadocia commented on Scott Adams's article in Summer 2026 Issue
      1

      New Study Finds 1 in 10 Celiac Patients May Have Additional Autoimmune Disorders (+Video)

    2. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    4. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,058
    • Most Online (within 30 mins)
      10,442

    Sandi Barnes
    Newest Member
    Sandi Barnes
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    • xxnonamexx
      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth 
    • Aretaeus Cappadocia
      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with. 
    • Scott Adams
      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
×
×
  • Create New...