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Ketotifen Fumarate And Other Mast Cell Stabilisers
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I stumbled across a couple of articles about curing leaky gut with the help of mast cell stabilisers over the last few months and finally got my hands on some Ketotifen. I've been talking it for 3-4 days now and have already overcome the extreme sleepyness it caused on the first day.

 

Because I have multiple problems I'm never sure what's the best way about fixing things but as I most of the time have a pronounce burn in the small intestine after eating almost anything and very high IgE and Eosinophil levels I always thought a mast cell stabilizer maybe quite likely to help me out.

 

Well so far I'm happy to announce that I can eat 100% pain free, I was hoping the enlarge lymph node in my neck would have gone down in size with the pain but it's actually got bigger as if I was having a bad reaction to something (but the lack of pain tells me I am certainly not..) so this is something I don't understand unless the Ketotifen has broken all the eosinophils in my blood all the sudden (I've read it does cause mature eosinophils to break down). So maybe I need to see what happens in a couple weeks time.

 

Anyway other things have changed, my persistent sores caused be excessive histamine and itching, which had been only mild on my previous anti histamines has totally stopped with the Ketotifen, to the point of me having noticeably clearer eyes these last few days.

 

I'm guessing that's because Ketotifen partially blocks H4 and the general anti histamines do not. I've gained weight, more than you would imagine possible in a couple of days and my usual going to the toilet a few times a day has also stopped. I'm guessing again just because the histamine levels have dropped off. It feels quite amazing to be able to eat what seems like anything without pain although I'm continuing on the SCD style diet for the most part so I get a combined drug+diet healing.

 

I found this protocol I found on the net worth reading too..

 

I'm not taking the cromolyn, only the Ketotifen so far. I've already been following this basic idea but without the mast cell stabilser it was just soooo slow.

 

--------------------------------------------------------------------------------------------------------------------

 

Treatments for "Leaky Gut Syndrome"

 

Histamine Reducers:

1. Ketotifen (Zaditen) 1mg by Sandoz.

- Compounded at Clark's Pharmacy (not commercially available in US).

- Antihistamine that reduces the harmful effects of histamine that allows the mucous layer to come back and heal the intestinal wall.

- Generally taken: 1-2 tablets (ours is a liquid subspension) 3 times daily 30 minutes before meals for about six months or up to twelve months depending on severity.

2.Cromolyn Sodium (Gastro Crom) 100mg by fisons or Cromolyn Sodium powder by various compounding pharmacies.

- Reduces mast cells from releasing histamine.

- This treatment does not generally work well in adults by itself.

- Generally taken: Dissolve 1/8 tsp in water 3 times daily 30 minutes before meals.

 

Parasitic and Antifungal Treatments:

1. Tinidazole 500mg by various manufactures and various compounding pharmacies.

- Used for chronic giardiasis and amoeda.

Generally taken for Giardiasis: Adults- 4 capsules all at once with a meal one time only (some doctors repeat it in ten days). Children- dose at 50mg per kg all at once with a meal one time only

2. Appropriate antibiotics / antifungals to treat identified intestinal parasites / yeast.

 

GI Healers:

1. Glutamine by various manufactures.

- Found in high concentrations in the small intestinal tract and is the preferred fuel.

- Generally taken: 1-5 gms per meal up to 15 gms per day.

2. Probiotics (friendly GI bacteria)

- Use only human strains and / or saccrharomyces boulardii.

- Generally taken: 1-2 capsules daily with meals.

3. Abstain from gluten if gluten intolerance.

- Extremely small amounts of gluten can cause major mucousal damage if gluten intolerance.

4. Stress Management.

5. Digestive enzymes.

- Breaks down protein and less pretein molecules (i.e. polypeptides) get absorbed into the blood stream.

6. Rotating foods and avoiding foods that irritate the digestive tract.

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Does Ketotifen act as a systemic mast cell stabilizer, or only in the gut?  I suffer terribly from inhalant allergies.  I use Nasalcrom and it helps some, but I was wondering if there is a systemic mast cell stabilizer. 

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Very interesting. Please update this thread as time passes.

I have been able to improve some of my Histamine issues with diet and antihistamines along with heat management .... but have not been able to safely add any foods back....thought perhaps I would be able to by now...as I have been on my very limited diet for nearly two years.

Anywoo...interesting stuff...thanks for sharing :)

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I'm still waiting / hoping my neck will go down soon but other that. I'm symptomless as far as the gut and skin itich goes so long as I take the Ketotifen.

 

Larapiz, it must be systemic because it's measurable in the blood, the half life is 12 hours, but peaks about the 2 hour mark. It's a very cheap drug (I got mine from Japan) it's about half the price as a typical anti histamine like say Zyrtec. 

 

I'm thinking for you guys that don't have more serious complications to worry about then it would really help heal up the gut quite quickly. Well worth a shot that's for sure. By the way I've put on 2kg this week and I've been taking it for a week. I went from 57.5 to 59.5kg (126 to 131lbs)

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I'm doing a two week Nystatin challenge and blood testing in the next two weeks to see if there's improvement with that, afterwards I'll be doing the same test with Ketotifen. Very excited to see how it performs. 

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Thanks for the tip. I'll save that to my list of things to try because the Ketotifen did wonders for my gut in my non blood counted test (just on how I felt), it's a really good histamine blocker. Next week I'll start it again and see what it really does with back to back blood tests. Someone sent me some Kefir grains the other day so I'm growing that at the moment. I read a paper on it lower IgE levels... Sounds promising. 

 

http://www.kefir.it/pdf/Anti-inflammatory%20and%20anti-allergic%20effects%20of%20kefir%20in%20a%20mouse%20asthma%20model.pdf

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I did my trial on Ketotifen, it made my gut feel great and changed a few things in my white blood count but not the things I wanted to change !. My doctor has prescribed me montelukast to try now. 

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How did the nystatin challenge go?  

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Have you read the book

 

What HIT me? by Genny Masterman

 

Good info regarding histamine intolerance and why it affects people with impaired guts, like in celiac.

 

I reduced the inflammatory response in my body by limiting/eliminating high histamine foods and chemicals.

 

There are more of us with HIT and mast cell issues than most doctors think. Ski, Adalaide and I are just a few on here.

Jess, The celiac patient wrote an article on it (google her website)  She is an MD

 

My GI guy "gets it"-- but he says

the only thing to resolve it fully is gut healing and avoidance of those foods for an extended period, reintroducing small amounts

to find your tolerance level.

 

I use probiotics and Type II collagen with hyaluronic acid but have never found any other "gut-healing" supplements or anti-inflammatories or things like Histame or DAO enzymes  like Daosin or even Benadryl to be effective at all. (just my experience) In fact, benadryl makes me restless, agitated and wide awake.

Go figure.

 

Just some thoughts! Best wishes to you.

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cycling lady, the nystatin didn't hurt but it didn't show up any immediate improvements on my blood work. However... I haven't had any pain in the gut for a month or two and I'm back on fruits without any problems. The Ketotifen definitely changed my white cell count, I wouldn't say in a bad way but changed it and it not that way I was hoping :). So now I'm taking 2 loratidine in the morning and one in the night with a zyrtec for my Kimura's disease and that's fine, my tumour is actually very small these last couple of weeks well.. small compared to usual, best it's been for a few years. My gut is a lot better than I was a year ago. I'm eating limited rice, I'm eating hard cheese and yoghurt without any problems. I started making Kefir too from milk, that seemed to do good. I'm still not eating any other grains and I'm able to eat macadamia's now but haven't ventured to other nuts. I'm not eating much meat again now, mostly just some chicken and raw fish in sushi once in a while and I'm doing well on that kind of diet, no processed foods though and probably 90% raw.

 

I bought a Vitamix so doing a lot of green smoothies these days, they are very easy on my gut and lymph system in general. It seems to me the main reason for the damage/continued damage to my gut post gluten is histamine and I'm not cured by a long stretch so I'll continue with the antihistamines and this diet. 

 

P.S I seemed to have a quite bad eosinophilic reaction to montelukast when I tried it so I got rid of that. I've also been playing with herbs, I made myself some capsules of Rubia Cordifolia to see if I can get my IgE levels down further with it.

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Thanks for the update Foam :)

 

I've known about Histamine Intolerance for nearly a year and was improving after removing histamine containing and inducing foods along with taking Allegra twice per day and Benedryl as needed to prevent anaphylaxis.  Unfortunately, I have never been able to add any foods back and my environmental triggers increased.  In August I had yet another severe Autoimmune type flare that has yet to improve so I am currently being tested for a Mast Cell Activation Disorder.

 

Were you tested for Mastocytosis or MCAD before you started on Mast Cell Blockers?

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I need to look into this histamine thing.  I took IgG, digestive enzymes, and did an elimination diet between November and June my nutrient levels improved immensely.  I am sold on these things!

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I need to look into this histamine thing.  I took IgG, digestive enzymes, and did an elimination diet between November and June my nutrient levels improved immensely.  I am sold on these things!

I have been taking IgG for some time now and also HCL and some sort of black pepper supplement whose name escapes me.  Either starts with a "b" or a "p".  It's supposed to help you absorb the rest of your vitamins better.  I am currently sick and not sure what it is.  Started off like cold with the runny nose and mysterious tickle/itch somewhere between the nose and throat that you can't quite pinpoint.  But it has since gone more into an allergy like thing.  Watery eyes, runny nose, sneezing, cough from post nasal drip.  Also had a 6 hour stomach thing that came on twice.  But other than that, have not really been sick at all except for a massive allergy attack two years ago in the spring and a bunch of symptoms related to menopause and the subsequent low estrogen that comes with it.

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Gottaski, I haven't been tested for any mastcell disorders but it's part of Kimura's disease by default so there's probably no point chasing it up. At the moment I'm being tested for gene errors to see if there's something hard coded wrong that can be found, I had some bone marrow biopsys a few weeks ago to get material to test.

 

Over these last months I've been wondering how many people with dodgy guts either had the gut initially damaged by histamine or how many haven't recovered from celiac induced damage because of excess histamine. How many have another underlying immune system problem?, mast cell or other. I'd guess it's quite a big number of people. There's no doubt anti histamines help the gut recover but at the same time I think you want to be careful with which types you take. I was prescribed a H2 blocker the other day but you are only supposed to take it at night. That's because it lowers the PH level in your gut so much that you can get intolerances to food because of malabsorbtion which is the exact opposite of what you are trying to avoid with a dodgy gut, yet at the same time you want to stop the histamine to get time to heal.. I haven't really needed to take the H2 blocker because I'm going OK at the moment. I'm taking a lot of other antihistamines already. I take at least one cetirizine and one Loratadine (works much better mixed for me) a day and sometimes four in total with 3 of the four being Loratadine they work best for me at night when the immune response is at it's highest, I take usually 10mg cetirizine and 10mg Loratadine together at night and 2 x 10mg of Loratadine in the day if I'm getting serious and if I'm having a proper immune attack I'll take the night time dose as 10 mg cetirizine and 20mg of Loratidine but I'll only do that for a couple of days. The good thing about them is that other than making you a little tired they don't seem to have any long term health side effects. I've been taking high doses like that for a year and it's not caused any adverse effects. I have other immune problems beside the gut so there's no need for other people to take that many anti histamines but I'm just letting you know it's relatively safe if you have to. Much safer than immunosuppressors anyway. The specialist I saw recently mentioned to me some of the gut/immune specialists are giving 3 x 10 mg of cetirizine a day to kids with these kind of problems when he asked if I'd tried higher doses of that alone. I think 30mg of cetirizine over the course of a day would knock me out at least until I built up tolerance, I don't know how a little kid could tolerate it :)?. 

 

Juliebove and 1desperateladysaved, you know I wasn't even aware you can get IgG pills until your post, that's really interesting for me because I seem to be going to have an injection of human IVIg at some point to try and fix my immune system, the theory is sound and it has worked before. You post got me wondering what effect the pills would have or maybe I'll just wait for the real deal. It's very interesting stuff messing with the IGG anyway. I read once some obscure paper about auto immunity on IgG causing out of control IgE production.

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Over these last months I've been wondering how many people with dodgy guts either had the gut initially damaged by histamine or how many haven't recovered from celiac induced damage because of excess histamine. How many have another underlying immune system problem?, mast cell or other. I'd guess it's quite a big number of people.

You are not alone in these lines of thought.

Thanks again for the update!

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Not alone at all!  ;) I figured out this issue after things did not improve for me, reading as much research as I could find  and by talking with Ski,  and we compared notes.

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cycling lady, the nystatin didn't hurt but it didn't show up any immediate improvements on my blood work. However... I haven't had any pain in the gut for a month or two and I'm back on fruits without any problems. The Ketotifen definitely changed my white cell count, I wouldn't say in a bad way but changed it and it not that way I was hoping :). So now I'm taking 2 loratidine in the morning and one in the night with a zyrtec for my Kimura's disease and that's fine, my tumour is actually very small these last couple of weeks well.. small compared to usual, best it's been for a few years. My gut is a lot better than I was a year ago. I'm eating limited rice, I'm eating hard cheese and yoghurt without any problems. I started making Kefir too from milk, that seemed to do good. I'm still not eating any other grains and I'm able to eat macadamia's now but haven't ventured to other nuts. I'm not eating much meat again now, mostly just some chicken and raw fish in sushi once in a while and I'm doing well on that kind of diet, no processed foods though and probably 90% raw.

 

I bought a Vitamix so doing a lot of green smoothies these days, they are very easy on my gut and lymph system in general. It seems to me the main reason for the damage/continued damage to my gut post gluten is histamine and I'm not cured by a long stretch so I'll continue with the antihistamines and this diet. 

 

P.S I seemed to have a quite bad eosinophilic reaction to montelukast when I tried it so I got rid of that. I've also been playing with herbs, I made myself some capsules of Rubia Cordifolia to see if I can get my IgE levels down further with it.

Thanks for your response!

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I am currently experimenting with mast-cell stabilizers (ketotifen, and cromolyn), so I will soon update this thread with results. It seems they are a highly underrated tool for managing multiple food allergies, and preventing new allergies from developing. 

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Hi all,

Not sure if this thread is still active or not, but I was diagnosed with celiac disease in 2010 and then developed a bizarre sulfite intolerance in 2012 out of the blue (through food journaling I realized that wine, dried fruits, molasses, etc. we're causing me to have flushing, wheezing, tongue numbness, irritable bowel symptoms/diarrhea, and headaches). A bunch of problems that I had never had before. Sulfites are a huge trigger for mast cells to release histamine. I was worked-up for mast cell activation this past summer and do have it (I had many of the symptoms, my symptoms improved with antihistamine treatment, and I had elevated urine prostaglandins x 2). My allergist and I worked via email consultation with Dr. Afrin at the University of South Carolina to get to the diagnosis.

I have been avoiding food triggers, taking probiotics, a compounded loratidine, which is generic Claritin, 2x/day, and I spray generic cromolyn sodium (a mast cell stabilizer) into the back of my nose 2 to 3 times a day and purposely swallow a little. I've been able to buy a huge bottle of cromolyn at my local CVS for about $17/bottle. I also take quercetin 500 mg once per day.

This has all helped a ton. I am finally back to the point where I do not wheeze after eating all of the time and I am actually able to drink an occasional glass or two of red wine. My IBS symptoms and headaches have gone away, despite my life becoming stressful in many other regards. My treatment for MCAS has made an amazing difference in my overall health and well-being.

I am in no way trying to give any medical advice on here, and I encourage you all to discuss your symptoms with your doctors, but just wanted to share my experience in case it may help someone! Happy Holidays!

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Hi all,

Not sure if this thread is still active or not, but I was diagnosed with celiac disease in 2010 and then developed a bizarre sulfite intolerance in 2012 out of the blue (through food journaling I realized that wine, dried fruits, molasses, etc. we're causing me to have flushing, wheezing, tongue numbness, irritable bowel symptoms/diarrhea, and headaches). A bunch of problems that I had never had before. Sulfites are a huge trigger for mast cells to release histamine. I was worked-up for mast cell activation this past summer and do have it (I had many of the symptoms, my symptoms improved with antihistamine treatment, and I had elevated urine prostaglandins x 2). My allergist and I worked via email consultation with Dr. Afrin at the University of South Carolina to get to the diagnosis.

I have been avoiding food triggers, taking probiotics, a compounded loratidine, which is generic Claritin, 2x/day, and I spray generic cromolyn sodium (a mast cell stabilizer) into the back of my nose 2 to 3 times a day and purposely swallow a little. I've been able to buy a huge bottle of cromolyn at my local CVS for about $17/bottle. I also take quercetin 500 mg once per day.

This has all helped a ton. I am finally back to the point where I do not wheeze after eating all of the time and I am actually able to drink an occasional glass or two of red wine. My IBS symptoms and headaches have gone away, despite my life becoming stressful in many other regards. My treatment for MCAS has made an amazing difference in my overall health and well-being.

I am in no way trying to give any medical advice on here, and I encourage you all to discuss your symptoms with your doctors, but just wanted to share my experience in case it may help someone! Happy Holidays!

 

 

Excellent! I am so happy you are feeling better, Jess!  :) It is wonderful that you can get cromolyn

at a CVS. Such a simple remedy for such horrid symptoms.  Too bad more docs do not know about this treatment.

 

 Quercetin 500 mg/day has  completely stopped those histamine responses in me and I feel so much better than I did for so long. I highly recommend this regime. Quercetin + probiotics.

My husband had terrible seasonal 

allergies his entire life and the quercetin and this complex has stopped them cold.

 

http://www.webvitamins.com/product.aspx?id=1576&utm_medium=shoppingengine&utm_source=googlebase&utm_campaign=acquisitions&gclid=CK_kkN-c_LoCFcFj7AodOBUA2A

 

As you all know, I am the probiotics pusher on here and I found Dr. Fasano's research

on the gut microbiome to be fascinating. Good guy bacteria in the gut = good defense and happy body.

 

:)

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So happy 

 

Hi all,
Not sure if this thread is still active or not, but I was diagnosed with celiac disease in 2010 and then developed a bizarre sulfite intolerance in 2012 out of the blue (through food journaling I realized that wine, dried fruits, molasses, etc. we're causing me to have flushing, wheezing, tongue numbness, irritable bowel symptoms/diarrhea, and headaches). A bunch of problems that I had never had before. Sulfites are a huge trigger for mast cells to release histamine. I was worked-up for mast cell activation this past summer and do have it (I had many of the symptoms, my symptoms improved with antihistamine treatment, and I had elevated urine prostaglandins x 2). My allergist and I worked via email consultation with Dr. Afrin at the University of South Carolina to get to the diagnosis.
I have been avoiding food triggers, taking probiotics, a compounded loratidine, which is generic Claritin, 2x/day, and I spray generic cromolyn sodium (a mast cell stabilizer) into the back of my nose 2 to 3 times a day and purposely swallow a little. I've been able to buy a huge bottle of cromolyn at my local CVS for about $17/bottle. I also take quercetin 500 mg once per day.
This has all helped a ton. I am finally back to the point where I do not wheeze after eating all of the time and I am actually able to drink an occasional glass or two of red wine. My IBS symptoms and headaches have gone away, despite my life becoming stressful in many other regards. My treatment for MCAS has made an amazing difference in my overall health and well-being.
I am in no way trying to give any medical advice on here, and I encourage you all to discuss your symptoms with your doctors, but just wanted to share my experience in case it may help someone! Happy Holidays!

 

So happy to hear of your improvement.  I'm another that discovered histamine intolerance about a year ago after having increasing allergic type reactions to an increasing number of foods along with environmental triggers - some to the point of anaphylaxis - since being diagnosed with Celiac Disease back in 2009.

 

My doctors and I have been working on Mast Cell Activation Disorder dx as well after I had a relapse from improvement from removing histamine inducing foods and taking daily antihistamines about a year ago.  Have had a single positive 24 hour prostaglandin urine and two 24 hour histamine.

 

I've been on quercetin for some time and have been trialing different micro doses of different antihistamines as I have adverse reactions to full adult doses of most antihistamines.  

 

Most recent addition was NasalCrom -- my celiac doc at UCSD suggested that cromolyn may help my severe digestive issues that have returned -- I had already read that cromolyn is one of the mast cell stabilzers used to treat MCAD -- internet research showed many patients having luck with NasalCrom and if works is much more cost effective than prescription cromolyn.  Ran into a delay with a horrid head cold this past week, but did restart the spray today.

 

Have been off probiotics for quite a while so will consider adding them back into rotation - thanks to both Jess and Irish :)

 

Hopeful.

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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