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 Celiac.com!
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

jerseyangel Proficient
I need some help. I started on a new medicine about 4 days ago. It is NABUMETONE, generic for RELAFEN. I feel like I am being glutened from it. I have stopped taking it as of today to see if my symptoms change back to normal. I know am 99% sure I have not gotten any thing else that is gluten. But what I need to know is if any one knows what is in this or if any one knows where I can look on the internet to find the ingredients.

Thank you,

Grump

Grump--

Generics are heinous! I took the generic form of a medication I had been taking for years--and I had a terrible allergic reaction. My doctor even postponed tests I was to have until the whole thing is out of my system.

The best way to find out about the gluten is to call the manufacturer directly. Different companies make different versions of generics.

The name of the manufacturer is sometimes right on the Rx label--CVS does that. If not, the pharmacist will be able to tell you who made it and possibly their phone #.

If not, google the company and get the number that way. I have never had a problem speaking to a nurse or pharmacist at these companies about gluten--they can tell you for sure.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
tom Contributor
Oh no- not one day- more like 5

D'oh! What was I thinking? I know that bad day that was posted about was a couple days ago. Somehow the last couple days flew by. :rolleyes:

Link to comment
Share on other sites
Mtndog Collaborator
I need some help. I started on a new medicine about 4 days ago. It is NABUMETONE, generic for RELAFEN. I feel like I am being glutened from it. I have stopped taking it as of today to see if my symptoms change back to normal. I know am 99% sure I have not gotten any thing else that is gluten. But what I need to know is if any one knows what is in this or if any one knows where I can look on the internet to find the ingredients.

Thank you,

Grump

Grump- My doc prescribed it as an anti-inflammatory. I seem to take it without a problem but haven't taken it very often. Here's a list of gluten-free drugs:Open Original Shared Link

It says relafen is gluten-free but doesn't mention nabumetone. Hmmm...what's the pharmaceutical company that makes yours?

Oh here- I found this:Tablets for Oral Administration: Each oval-shaped, film-coated tablet contains 500 mg or 750 mg of nabumetone. Inactive ingredients consist of hypromellose, microcrystalline cellulose, polyethylene glycol, polysorbate 80, sodium lauryl sulfate, sodium starch glycolate, and titanium dioxide. The 750-mg tablets also contain iron oxides.

onOpen Original Shared Link

Link to comment
Share on other sites
tom Contributor
It makes sense....I would think that if you're taking something which is working really well at controlling a certain infection or managing something else going on in your body...it seems like it could possibly prevent it from showing up in testing.

I can't imagine an argument against that. Makes perfect sense.

Stupid mercury and yeast have turned off my internal heater. :angry:

I was cold to the core for yrs. When it finally started going away (candida treatment) I remember hearing a song that became my theme song for that era.

"Coming in From the Cold" by Bob Marley and covered well by many.

Priceless.

Link to comment
Share on other sites
tom Contributor
Sorry, I probably made that difficult by spelling it wrong! :lol:

Yeah I was gonna say "shouldn't there be an N?"

I've been watching too much tv for far too long to have not seen a few Munchy episodes.

Link to comment
Share on other sites
DingoGirl Enthusiast
"Coming in From the Cold" by Bob Marley and covered well by many.

Priceless.

:o for a minute you were about to scare me again....if you made a reference to JONI MITCHELL's Coming in from the Cold.....I would have fallen off my chair.

;)

Link to comment
Share on other sites
tom Contributor
:o for a minute you were about to scare me again....if you made a reference to JONI MITCHELL's Coming in from the Cold.....I would have fallen off my chair.

;)

Heheh since I thought Bob's song had been covered so much, I was SO sure I'd be able to say "I hope u had a strategically placed pillow or fluffy dingo" but no.

Had to look it up and I think hers is "Come in from the Cold"

Dang!

Sounds like the lyrics should apply tho.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



dlp252 Apprentice
I need some help. I started on a new medicine about 4 days ago. It is NABUMETONE, generic for RELAFEN. I feel like I am being glutened from it. I have stopped taking it as of today to see if my symptoms change back to normal. I know am 99% sure I have not gotten any thing else that is gluten. But what I need to know is if any one knows what is in this or if any one knows where I can look on the internet to find the ingredients.

Thank you,

Grump

I found this PDF file which has all sorts of info, but it MAY depend on the non-active ingredients which probably depends on manufacturer.

Open Original Shared Link

Link to comment
Share on other sites
CarlaB Enthusiast
Grump- My doc prescribed it as an anti-inflammatory. I seem to take it without a problem but haven't taken it very often.

Don't underestimate your anti-inflammatory. It's also a cyst-buster. It could be the culprit in the herx ... did you start the two at the same time? If yours is Plaquenil, I'd take it regularly because it busts cysts and is an old anti-malarial drug (think "babesia").

Link to comment
Share on other sites
AndreaB Contributor
Oh no- not one day- more like 5 (started literally immediately after I took my first pill). Scared the heck out of me. I'm feeling a *little* better today.

called my LLMD and haven't heard back. Just wondering if the first is the worst. Or if I should brace myself for ALL of them.

Hugs Bev. :wub:

Glad this herx is starting to end. Let us know what your doc says.

Saxy Spice. :lol:

Yep, I think that fits too. :P

I also asked her why she thinks I got soooo messed up from the mercury to begin with?? She said that most likely I was having problems with the detox pathway long before I got sick....that I was probably already at a full load...the mercury just totally pushed me over the edge....it was the last straw.

Thats basically the same thing both Anna and Dr. S. had said about it.

Even Dr Rick (though at first he didnt believe mercury was the underlying cause) had said that things piled up and even though it was one thing that broke the camels back.... many things were going on before my body reached that point.

You never know when that straw is going to come.

It sounds like the LED is very promising for you from what you've said. I don't think it'll be any easier than everyone on abx for the lyme, but you will get better. :) I believe that.

He took me out for some fresh air and that was the first time he thought he could marry me. :blink: When I was sick. I guess it was his vocation to care for me. :rolleyes:

Little did he know. That's a cute story though. :)

Link to comment
Share on other sites
dlp252 Apprentice
Yay Donna! What song?

I sing with a small group at my church and they have elected me to sing a solo...never done that before. Can you say TERRIFIED!! Can you say gagacious!!! :lol:

Actually I just got an email and we have been moved to August 5! PHEW!!!!!

Link to comment
Share on other sites
CarlaB Enthusiast

Donna, just bring five of your BEST friends (well, second best, WE're your best!!) to the Church. Then sing your solo in front of them.

When you go back to sing for a bunch of people you don't know as well, it will be much easier.

It's always harder for me to play if I see my friends in the congregation so I just don't look. LOL

Link to comment
Share on other sites
AndreaB Contributor
OMGosh!!! Super hyperventilation going on here... I may have to sing my solo as soon as June 24th! It was scarey enough when I thought I had a couple of months to go...that's like NEXT weekend.

Okay, I need everyone's expert weaseling out techniques! :P

Just don't look at anyone if it scares you. Singing solo is scary but it CAN be done. I found it easier not to look at anyone, just look slighly over their heads. Do what you gotta do for survival. YOU CAN DO IT!

Hold on - I had to respond to a plethora of interrogatory postings!!

You didn't HAVE to, but we much appreciate it. :)

I sing with a small group at my church and they have elected me to sing a solo...never done that before. Can you say TERRIFIED!! Can you say gagacious!!! :lol:

Actually I just got an email and we have been moved to August 5! PHEW!!!!!

Yay for an extra month!

Link to comment
Share on other sites
Mtndog Collaborator
Don't underestimate your anti-inflammatory. It's also a cyst-buster. It could be the culprit in the herx ... did you start the two at the same time? If yours is Plaquenil, I'd take it regularly because it busts cysts and is an old anti-malarial drug (think "babesia").

Oh- it wasn't my Lyme doc- it was the doc I saw for arthritis. Interesting though.

I start plaquenil in 10 days :ph34r:

Donna- YOU ARE GONNA ROCK THEIR SOULS!

Link to comment
Share on other sites
CarlaB Enthusiast
Yeah I was gonna say "shouldn't there be an N?"

I would have edited my mistake, but someone had already quoted me.

Oh- it wasn't my Lyme doc- it was the doc I saw for arthritis. Interesting though.

I start plaquenil in 10 days :ph34r:

It's the Plaquenil that is the cyst buster ... I don't know about the other stuff, I thought you were talking about the Plaquenil.

The Plaquenil should help with the joint pain ... some people herx from it. I don't think I did ... but I started the amoxy within a few days.

Link to comment
Share on other sites
CarlaB Enthusiast

Chloe is doing the six hour urine collection. She came to me and said that I didn't tell her what to do if she overflows the cup! :o:o:o:lol: I told her to go to the bathroom more often! :P She's having a blast ... not really, but she's being a good sport about it.

Link to comment
Share on other sites
AndreaB Contributor
She's having a blast ... not really, but she's being a good sport about it.

I'm glad she's being a good sport. :)

Any word on the Igenex yet, or anything else?

Link to comment
Share on other sites
tabasco32 Apprentice

Hey Rachel

I'm glad you are doing o.k. That's a lot of info. Sometimes I wish a doctor knew what was

really going on with me. It seem everyday is worse more pain and constipation and symptoms.

I know the constipation comes from mercury stealing our magnesium. It also can cause muscle cramps in legs and such. I am going to the new naturopath. They saY I am a perfect candidate for their mercury treatment. Have you heard of preventium.com?

They have rexonal nf which is needed as a sulfer amino acids for mercury? And magmax for constipation? I want to try these. I hate this lower left and right abdominal pain. I really don't

think my doctor now knows much about mercury treatment.

Have you ever heard of methionine. It helps keep mercury from reaching the brain.

lisa

Link to comment
Share on other sites
CarlaB Enthusiast

Andrea, no word yet on the IGeneX.

Can agave syrup be used on the candida diet? I've read it's low glycemic, so I'm thinking yes ... but anyone know for sure?

I was given a raw fudge recipe that I wanted to try. If it's good, I'll post it ... it has raw cacao beans, almond butter, coconut oil, agave syrup, vanilla, and sea salt.

Link to comment
Share on other sites
tabasco32 Apprentice

Rachel

How can I get a hold of seeing your doctor in SF?

Link to comment
Share on other sites
AndreaB Contributor
I was given a raw fudge recipe that I wanted to try. If it's good, I'll post it ... it has raw cacao beans, almond butter, coconut oil, agave syrup, vanilla, and sea salt.

It sounds good. I know nothing about the candida diet though. :P

Lisa,

I think it would be great if you could be seen by Rachel's doctor. I'm really worried about you not seeing someone who knows what they are doing. Same thing I felt with Mia's last doctor.

Link to comment
Share on other sites
AndreaB Contributor

I see you Alison. Why don't you try posting? I wouldn't think you've been locked out.

Link to comment
Share on other sites
AndreaB Contributor

Oh, I forgot to mention. We normally buy Maranantha Sesame Tahini for T and S, preferrable organic. Wild Oats has been out so I went to Fred Meyer today and inquired about it. They said it had been recalled due to e-coli. :o

I bought cashew butter for her. She had some today, while S had some of what we have left of the sesame. So far so good. I hope T does ok with this. I know she can eat cashews occasionally (or things with cashews in it), just don't know about daily.

Hope Maranantha almond butter is ok.......

Link to comment
Share on other sites
tom Contributor
Can agave syrup be used on the candida diet? I've read it's low glycemic, so I'm thinking yes ... but anyone know for sure?

Well . . . . . . .for a strict candida diet, I'd have to say it's not allowed. (Wish I could say otherwise)

I think the strict diet is 'no glycemic'.

Even a carrot is too sweet.

I didn't touch a dessert for more than a year. :(

Link to comment
Share on other sites
tom Contributor
Hope Maranantha almond butter is ok.......

Ow I think that's the one I almost broke a tooth on from pieces of shells in it.

I think it was months later when ANOTHER jar had shell bits in it too!

Never a problem w/ WhF 365 brand.

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,069
    • Most Online (within 30 mins)
      7,748

    angie78
    Newest Member
    angie78
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...