Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sick And Frustrated

Adalaide

By Adalaide
in Coping with Celiac Disease

Recommended Posts

Adalaide Mentor
Adalaide
Posted

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

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
kareng
Posted

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
Jodster72
Posted

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
nvsmom
Posted

(((HUGS))) :(

Adalaide Mentor
Adalaide
Posted
  • Author

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
shadowicewolf
Posted

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.

Go to topic listing

  • 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. Katya773
      - Katya773 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Wholefoods 365 Organic Wheatgrass Powder

      Hi Everyone, I recently purchased this wheatgrass not realizing that it wasn’t gluten free. I had two servings before I got really sick. Abdominal cramps , diarrhea and horrible nausea. My daughter read the label and told me it wasn’t labeled gluten free. I thought this was safe because supposedly it’s healthy. I called WholeFoods and they told ...
    2. emily 1
      - emily 1 replied to emily 1's topic in Coping with Celiac Disease
      8

      Black Pepper Reactions

      Yes, unfortunately I was diagnosed about 15 years ago. Some of us I guess the gut never heals and from what I've learned you can actually have a setback which is probably the stage I am at where I actually have become more sensitive to more items.
    3. Blue Roan
      - Blue Roan replied to emily 1's topic in Coping with Celiac Disease
      8

      Black Pepper Reactions

      Hi Emily! I was just diagnosed a year ago and could not touch nuts, corn (or anything with corn-based ingredients), lactose, or black pepper in the first 8 or so months. Otherwise I had a lot of abdominal discomfort, dizziness/vertigo (especially with corn and pepper) and inflammation throughout the body. I was pretty much eating plain cooked veggies...
    4. Blue Roan
      - Blue Roan posted a topic in Related Issues & Disorders
      0

      Irregular periods AFTER going gluten-free?

      Hi there, I am 30 and was diagnosed with celiac almost a year ago after a series of severe “unexplained” abdominal episodes. Everything is improving and I am feeling so much better overall except my cycle is worse. Has anyone else had a similar experience? I got my period as a pre-teen and my cycles have been regular for as long as I can remember: ev...
    5. John Scott
      - John Scott commented on dixonpete's blog entry in Pete Dixon
      9

      A video with researcher William Parker about Helminthic Therapy

      You’ve touched on some big issues that really need evidence for a fuller understanding. I agree that we don’t need tuberculosis or trichinosis, and that the reduction in these and many other infections has undoubtedly contributed to the increase in longevity seen in the West in the past century. And yet some infections can actually be beneficial, as...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,010
    • Most Online (within 30 mins)
      7,748
    Jen44
    Newest Member
    Jen44
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Katya773
      Wholefoods 365 Organic Wheatgrass Powder

      By Katya773 · Posted

      Hi Everyone,   I recently purchased this wheatgrass not realizing that it wasn’t gluten free. I had two servings before I got really sick. Abdominal cramps , diarrhea and horrible nausea. My daughter read the label and told me it wasn’t labeled gluten free. I thought this was safe because supposedly it’s healthy. I called WholeFoods and they told me that they can find out more about the product and email me when it was picked and harvested. I was diagnosed back in 2019 and I really should know better! Anyone else had a reaction to wheatgrass powder? 
    • emily 1
      Black Pepper Reactions

      By emily 1 · Posted

      Yes, unfortunately I was diagnosed about 15 years ago. Some of us I guess the gut never heals and from what I've learned you can actually have a setback which is probably the stage I am at where I actually have become more sensitive to more items.
    • Blue Roan
      Black Pepper Reactions

      By Blue Roan · Posted

      Hi Emily! I was just diagnosed a year ago and could not touch nuts, corn (or anything with corn-based ingredients), lactose, or black pepper in the first 8 or so months. Otherwise I had a lot of abdominal discomfort, dizziness/vertigo (especially with corn and pepper) and inflammation throughout the body. I was pretty much eating plain cooked veggies and chicken for the first few months because they were safe and reliable.  Over time, I have slowly started to tolerate some of the no-no foods, but my system is still sensitive to the pepper and has a limit to corn/lactose before symptoms occur. When you’re first diagnosed, you will likely be sensitive to a lot of other foods because your gut is healing from the damage and your body needs to reset. I find that keeping a food diary  and only slowly introducing other foods back into your diet over time is helpful. It is frustrating to feel so limited, but give it some time and patience. It can take the gut years to fully heal in many cases. 
    • Blue Roan
      Irregular periods AFTER going gluten-free?

      By Blue Roan · Posted

      Hi there, I am 30 and was diagnosed with celiac almost a year ago after a series of severe “unexplained” abdominal episodes. Everything is improving and I am feeling so much better overall except my cycle is worse. Has anyone else had a similar experience?  I got my period as a pre-teen and my cycles have been regular for as long as I can remember: every 21 days, lasting 5 days. My periods were heavy and I always had severe cramping at the start that subsided after the first two days.  I went gluten-free immediately when I was diagnosed in February. At first, my cycles were the same but around July, I started noticing very crazy symptoms around that time of the month: chills all over the body, severe headaches, some hot flashes, dry mouth and then cramps starting a few days earlier than usual. My cycles also started happening later and later. This time around, I’m on Day 35 and no period so far, but still cramping/abdominal pain/nausea on and off for the past week. It has been feeling like it’s about to happen any minute but nothing. I even get the pelvic contractions/pains but nothing after. I cannot sleep from all the hormonal fluctuations and chills. I can confirm I am not pregnant.  I’ve seen the endocrinologist, OBGYN, primary, and multiple gastro doctors throughout the year. No IBD ( but possible IBS), thyroid panel normal, thyroid ultrasound normal, negative for Hashimoto’s. I had a full vitamin panel and all levels normal (no anemia or vitamin B deficiency). After some testing, the gyn thinks PCOS is highly unlikely and that my body is “still adjusting” to going gluten-free. I’ve been strict gluten-free for nearly a year though.   All of my regular labs are normal and my antibodies are on a downward trend. I am really confused because more of my research points to the gluten-free diet resulting in better cycles rather than the opposite. While my cycles are not as heavy, they’re more unpredictable and uncomfortable with all these new symptoms. 
    • Mari
      Black Pepper Reactions

      By Mari · Posted

      Hi Emily, What you described is very similar to what I experienced in coping with Celiacs. I think my first symptoms started when I was about 3 and I wasn't diagnosed until I was almost 70. I got along OK util I was about 30  when I began to have more problems that the Drs thought was an autoimmune problem that they couldn't identify. Then I worked in medical labs in Bolivia for 8 months and returned to the US with more problems such as sensitivities to chemicals and increasing food intolerances. I had always had canker sores in my mouth and nose but have not had any now  since I went strictly gluten free. Before I was gluten-free I became very sensitive to hot peppers and then I could not eat anything spicy such as cinnamon, turmeric or black peppers. I have not eaten any nightshades for years. No corn or soy.  My diet now is lamb stew with rice, squash, green beans, chard, kale, collards with salt. Then eggs , chard, spinach, black beans, summer squash, asparagus, rice and salt. I eat peanuts for snacks. I have been eating nuts but may have to stop. Coconut is OK but too much sugar is not.  I am very cautious about adding back foods to my diet but hope to add back small amounts of turmeric. Take care.
×
×
  • Create New...