I had positive tests for excessive mast cells in my GI tract following a colonoscopy.  I have confirmed SM, so my tryptase is always high.  My GI doctor said that he finds high numbers of mast cells, confirmed by biopsy, in a lot of patients (over 500 so far, I believe).  He said he gets an 80% cure rate with his regimen for treatment, including Gastrocrom, probiotics, antihistamines, etc.  That number is for people with MCAS, not for SM.  When he finds excess mast cells, he has them stained and checked for signs of SM.

Hi Futurehope,

I have high eosinophils in my esophagus and was diagnosed with Eosinophilic Esophagitis.  I do have a lot of problems with throat swelling with foods.  No one has tested my biopsies for mast cells, but I'm not sure it would matter in my treatment.  I am seeing Dr. Afrin tomorrow and will ask him about that.  I eat organic wheat and feel like I would have died without it the last 2 winters.  I lose weight with reactions, and homemade cookies (with chocolate chips) are one of the only things I could eat that helped me keep weight on.  We are all so individual with this disease.  What can hurt one of us, can help another.  Do you have "safe" foods you can eat without having a reaction?  Are you on many meds?

I take Zantac and antihistamines, and surprisingly to me, Singulair helps my throat, as does the Zantac.  I also took a swallowed Flovent inhaler and went into remission from my EoE after using the inhaler for 2 months.  I haven't been using the inhaler, and don't notice much of a difference.  I know your mast cells are lower down in your GI tract, but makes sense you would have problems in the lower portion then.  I hope this helps a little Sarah

Hi futurehope,

He said he wouldn't do any staining on the biopsies at this point because it wouldn't change my treatment at all.  He also feels that I might not have actual EoE, but just the severe angioedema in my throat.  He stressed that he was not a GI doctor and just speculating, but I think I agree.  I can feel the swelling go up and down, and antihistamines help more than the EoE treatment.  I am working on taking the Singulair twice/day now, instead of once, and will try to add quercetin in next.  How have you been doing?   --Sarah

Futurehope,

I saw Dr. Scot Lewey in Colorado Springs.  I believe he knows Dr. Miner.

Sarah,

This article came in one of the newsletters I get from Dr. Lewey.  If you can't open the link, let me know and I'll try to forward the entire article.

One problem some people have who have been off of many foods for a long time is that their bodies stop producing the enzymes to digest those things.  One example is vegetarians.  They get sick sometimes if they get a meat product because their bodies can no longer digest it.  In order to get back on more foods and to have the body be able to process them, one needs to start back on one food at a time and to start with tiny amounts, e.g., 1/2 tsp. of the food.  Then very slowly increase over a period of time.  

Of course, if someone's getting anaphylaxis from something, that food shouldn't be continued.  But, if it's simply increasing some lesser GI symptoms, it might be worth continuing and see if the body will begin to handle it.  If it would feel better, the bit of food could be mixed with a pint of water.  Cooked food might be easier to try, as cooking can break it down a bit.

Has anyone ever suggested gastrocrom or swallowed steroids for the EE?  I'm not on here a lot lately due to family health issues, so you may have already posted that.  Just wondering if either of those had helped or could.

You may have already gotten this information from this link, but it's a discussion of using specific types of elimination diets and the success a high percent of patients have had with them for eosinophilic esophagitis.  

[ftp]http://www.healio.com/gastroenterology/esophagus/news/online/%7B272cc238-0ed0-4aa5-a999-a7d6062106c9%7D/eoe-patients-achieved-remission-with-four-food-group-elimination-diet?sc_trk=internalsearch/ftp]

Joan,

Thanks for the tip on the quercetin--I didn't know it caused stomach upset.  I'm sorry to hear about your family health issues.  I hope it gets better soon.  I did take Flovent (swallowed) for a while, but don't notice a huge difference when I don't take it.  It makes sense about the enzymes.  I did add carrots back to my diet a month ago and can now increase the amount without problems.  I will have to do the same when I try meat again.  Good luck with everything--Sarah