Jump to content
  • 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

Dr Glutenator


Tallforagirl

Recommended Posts

Tallforagirl Rookie

I was recently diagnosed, and am still trying to recover from the symptoms of Coeliac, mainly for me that has been nausea.

My doctor has me as his one and only Coeliac patient, and on Friday prescribed me some anti-nausea medication. Whilst waiting for him to print the prescription, I asked him whether the medication was gluten free. He didn't say anything and I assumed he'd heard me.

Today I took half of one of the tablets, and then thought I'd better double check the ingredients, as the packet didn't specify "gluten free".

I was dissappointed and angry to find that one of non active ingredients is WHEAT STARCH.

Glutened by my doctor.

Fellow Coeliacs be reminded by this: double check stuff, don't take anyone's word for it (especially a non-Coeliac).

Lucky I only took half a tablet, and will not take any more. Will definitely NOT be going back to that doctor again.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

The labeling for medications stinks. You would be amazed at how many of them contain wheat. You have the right idea--check 'em all before you take 'em.

ravenwoodglass Mentor

If you are happy with this doctor otherwise please keep him. You most likely will not be able to find a doctor who does know for sure if a script is gluten-free anyway. The labeling regs for drugs and supplements are very lax and when it comes to the binders and inactive ingredients well they can be changed at will. What you need to do is to find a good pharmacy that will take the time to check. In addition you should always get the actual fact sheet that comes with the drug and then call the company that makes it yourself if you have any doubt. If a drug is generic then it will need to be checked at each refill. If it is a name brand drug still under patent restrictions the binders will have to stay the same as long as that patent is in place. It is best to always double check if you use a gluten free drug list as those are out of date the day they are printed.

ek327 Newbie

I would find someone new. I am a nurse practitioner, and I do check online regarding gluten free status of meds that I am prescribing for my celiac patients. I also note that on the prescription so that the pharmacy is aware if they are filling it with a generic equivalent.

Maybe it helps that my daughter and I are celiac, and I am aware...

Lisa16 Collaborator

Unfoprtunately this disease means that you are going to have to protect yourself this way too. It is true many doctors do not know.

There is, however, a list of gluten free drugs online that is pretty handy-- just google it. It might not be up to date, so if your drug isn't there, call the manufacturer. One generic company (the name escapes me right now)always uses corn or rice starch and one is iffy (TEVA-- some are safe, some not). Some pharmacies only deal in one generic brand.

You will also need to make friends with your pharmacist and they can check for you. Strangely, a number of pharmacies are not connected to the internet and cannot check that way. But they can call.

I will tell you a "funny" story. My ortho guy ordered prednisone for me. But the only gluten free format that had was a slightly different formulation. So after calling the doctor and confirming they could change the script a little bit, TWO pharmacists got out an enormous book (this thing probably weighed 30 pounds!) and calculators and starting doing a "steroid conversion" by hand. They gave me the dose and I went home. I took it.

The next day they called to tell me they had accidentally given me a DOUBLE initial dose. Sheesh! A mistake liek this can kill you.

With this disease these things are going to happen and you have to watch your own back. My current doctor is not the most celiac saavy either. It is just the reality of it.

Lisa

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.