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Ketotifen Fumarate And Other Mast Cell Stabilisers


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22 replies to this topic

#16 GottaSki

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Posted 19 October 2013 - 08:47 PM

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!
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#17 IrishHeart

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Posted 20 October 2013 - 04:09 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#18 cyclinglady

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Posted 20 October 2013 - 04:11 PM

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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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#19 stri8ed

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Posted 02 November 2013 - 03:22 PM

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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#20 IrishHeart

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Posted 02 November 2013 - 03:45 PM

There are ways to do this without meds (for those who cannot tolerate drugs)

 

Read here:

 

http://thelowhistami...ng-supplements/

 

works for me.


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 jebby

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Posted 23 November 2013 - 03:15 PM

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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#22 IrishHeart

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Posted 23 November 2013 - 05:02 PM

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.webvitami...CFcFj7AodOBUA2A

 

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.

 

:)


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#23 GottaSki

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Posted 24 November 2013 - 01:18 PM

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.


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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