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

Do Any Usa Doctors Prescribe Oral Ketotifen?


Laura Wesson

Recommended Posts

Laura Wesson Apprentice

Ketotifen is a good systemic mast cell stabilizer and antihistamine that in oral form apparently works well for food allergies.  I have many, many food allergies, not the kind that show up on skin or blood tests.  And too many foods are off limits for me now.  So I'm looking at medications that might enable me to eat foods I couldn't eat otherwise. 

I know that cromolyn helps to reduce the food reaction.  But I heard that ketotifen is better. 

But in oral form, ketotifen isn't available in the USA, except from some compounding pharmacies.  To get it from a compounding pharmacy, I probably need a doctor's prescription. 

You can buy ketotifen online, but I've only see the tablets, which have ingredients like corn starch and lactose that I'm allergic to.

So are there doctors in the USA who will prescribe it?  Or would I have to see a doctor in Canada? 


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



Celiac.com Sponsor (A8-M):



foam Apprentice

You are better off just importing it. It's not available in Australia either so I by it from Japan, it's cheap and arrives quickly, 100 capsules is like 30 dollars. I found it to have massively good antihistamine effects. Normally I'm doing 10mg Zyrtec and 20mg claratyne daily. But Ketotifen at 1mg three times a day was much more effective as an antihistamine. It wasn't as effective as an eosinophil blocker which is the only reason I changed back to to the zyrtec/claratyne mix. If I only had a leaky gut and not other problems as well I'd use the Ketotifen for sure.

 

I'm starting on Pemirolast potassium next week which is a little known mast cell blocker among other properties which might be more suitable for me, probably I'll mix it with claratyne.

 

You can buy your Ketotifen here in a capsule Open Original Shared Link

 

Just remember it WILL make you very sleepy for a few days until you build tolerance, then you will feel amazing.

stri8ed Rookie

Yes, there are. My doctor (in Chicago) prescribed it for me, though I had to explicitly ask him to, as he was not very familiar with it. Given that Ketotifen has a Open Original Shared Link in the treatment of food allergies, I see no reason why a doctor would not be willing prescribe it.

 

Unfortunately for me, I did not tolerate Ketotifen well, so I dropped it after a few weeks. I still have tons left over. Right now im experimenting with different doses of Cromolyn, to try and get a working situation.

 

I seem to have a similar situation like yourself, where I have dozens of food allergies (almost immediate onset), which don't show up in prick-tests. I have been able to prevent new allergies by following a low-protein rotation diet, however I have become so sensitive to even traces of any of my existing allergens, that I pretty much have reactions (albeit milder) after eating any meals. I have an appointment soon with an expert immunologist, and I am hoping he can bring some new ideas to the table.

 

Something I have been reading up on recently is xolair (Omalizumab). Its essentially an injectable antibody that binds to the IGE antibodies in human serum, thus preventing those antibodies from binding to mast cells, which in turn leads to diminished allergic reactions. It has some pretty impressive results in clinical studies, though it has most been mostly used for asthmatics. Interestingly, it has been proven to be effective Open Original Shared Link where the immune problems where not IGE mediated. The downside is, the treatment is crazy expensive, and relatively new, and not much studies have been done with food allergies. 

foam Apprentice

Xolair will get rid of high IgE levels for sure but it's expensive and it's not a permanent fix. Food Allergy Herbal formula 2 (FAHF-2) also drops IgE levels. There's ongoing studies in the States about that, it's seems to work very well in all the studies so far.

 

Cetirizine will drop IgE levels also, if you don't have an immune system disorder that's always making IgE like me then I think Zyrtec alone will do the job within a few months. In one study I read it only took about 3 months to drop the typical asthmatics IgE levels from ~1000 back to a reference range of sub 200.

 

I'm trying Vitamin D3 at 10,000 units a day currently. Last year I managed to drop from IgE levels from 4200 to 2000 but it's stalled at 2000, I'm not sure why I can't get it under 2000 but I was taking a lot of vitamin D last year so I'm back on that now.

 

Ketotifen worked like a charm to make me symptomless for all my problems, I could eat what I wanted and had no itching etc. It just didn't do what I wanted it to do. I still have lots left so perhaps I should try it mixed with other antihistamines and see what it does longer term. It was a good couple of months after I took it for three weeks for any pain to return to my gut and I'm still pretty good now but it's been a year since I ate corn and most other grains now and that's helping. But yes no doubt Ketotifen is very effective in lowering the reactions.

 

Anyway the Pemirolast will be here tomorrow or the next day and that stuff seems like it will have no noticeable side effects and is likely the best mast cell stabilizer so I'm excited to try it.

 

I'm on a waiting list for human IVIg anyway so I'm just filling in time trialling these drugs before the serious stuff arrives.

  • 4 weeks later...
foam Apprentice

He guys, if any of you are still going down the mast cell stabiliser path?. I've been on the Pemirolast potassium for about 3 weeks now, from the very little information I could find about it, it seems to be the either the best mast cell stabiliser going or at least equally good to cromolyn . As far as I can tell it works like a boss. Zero side effects that I'm able to feel/tell. And I haven't had any discomfort in the gut at all while not been especailly careful with my food. Not sure what's going to happen long term as I'm using it for other problems aside from a dodgy gut. We will see. I plan to take it for several months and if my blood work is improving I'll take it for a year and see what happens. I had a blood test one week into the Pemirolast and it was the best result I've had in a few years but lets not count the chickens just yet. As far as food problems go, this seems good stuff.

 

I forgot something, I'm currently the heaviest I've ever been in my life (66kg clothed), this time last year I was 55kg. Very happy about that.

StephanieL Enthusiast

If these drugs are so promising for food ALLERGIES why are the most recent studies 20 some years old and very very small?  

foam Apprentice

There are genetic factors at play in a lot of people with IBS/Leaky gut/ Too many mast cells etc 

 

There are heaps of recent studies by the way. 

 

Open Original Shared Link

Open Original Shared Link

 

I don't know if you are aware but Zyrtec is used by vets for gastro problems in animals especially in cats where it works like some kind of miracle drug. Just like there's a genetic link to celiac disease I'm sure the same can be said of hypersensitivity to foods and it's more than likely the best treatment other than not eating much for the rest of your life is a mast cell stabiliser. I tried the Ketotifen and it worked as far as making me feel good and gain weight but the drowsiness was a bit of a downer. The Pemirolast is better for me, but Ketoifen probably works great for some people and it's less expensive.

 

Worth reading this guys experiments too Open Original Shared Link and there's a mast cell disease forum that I often come across while searching for other stuff. They know a lot of things.


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



Celiac.com Sponsor (A8-M):



stri8ed Rookie

He guys, if any of you are still going down the mast cell stabiliser path?. I've been on the Pemirolast potassium for about 3 weeks now, from the very little information I could find about it, it seems to be the either the best mast cell stabiliser going or at least equally good to cromolyn . As far as I can tell it works like a boss. Zero side effects that I'm able to feel/tell. And I haven't had any discomfort in the gut at all while not been especailly careful with my food. Not sure what's going to happen long term as I'm using it for other problems aside from a dodgy gut. We will see. I plan to take it for several months and if my blood work is improving I'll take it for a year and see what happens. I had a blood test one week into the Pemirolast and it was the best result I've had in a few years but lets not count the chickens just yet. As far as food problems go, this seems good stuff.

 

I forgot something, I'm currently the heaviest I've ever been in my life (66kg clothed), this time last year I was 55kg. Very happy about that.

 

I have never heard of that before. Where did you purchase it from? Thus far, Ketotifen has failed me, and cromolyn is a bit of mixed bag. It does seem to partially relieve all my symptoms (which indicates my reactions stem from the GI tract), however I seem to react to it slightly, which gives me additional symptoms, and probably inhibits its full absorption and effectiveness. I am very interested in FAHF-2. The more I read about it, the more promising it seems. I may consider seeing Open Original Shared Link in her Open Original Shared Link in NY, and trying to get her to provide me with the formula, as it it may well take years until its on the market.

 

As I mentioned earlier, even after eliminating all my dozens of sensitivities/allergens from my diet, I still experience symptoms after eating. Hence, I really need something to work, simply so I can function properly on a day to day basis.

foam Apprentice

I got it from mimaki pharmacy same place I get everything else. Open Original Shared Link

 

I ate a full block of chocolate 2 days ago just to see what would happen as it usually makes me sick. Didn't do anything. Not that I'm going to live a life of eating chocolate but good to know I can eat it without a problem

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.