Mast Cell Inflammatory/mastocytic Enterocolitis Disease

[jillb]

My Dr is treating me for this disease. It is commonly found with people with the celiac gene and gluten intolerance. I tested negative for celiac but still was having worsening syptoms. I am seeing an allergist now to determine other allergens, but common ones that are triggers are fermented foods, citric, coffee, chocolate, wheat. Does anyone else have this?

This is a great website that describes the details:

Open Original Shared Link

[Owen'sMom]

This is interesting, makes me wonder if my son could have it. He also tested negative for celiac but has both genes. And he definitly tolerates foods better since taking Zyrtec every day. I guess I will have to discuss this with his doctor, although all allergy testing came back negative.

[jillb]

This is interesting, makes me wonder if my son could have it. He also tested negative for celiac but has both genes. And he definitly tolerates foods better since taking Zyrtec every day. I guess I will have to discuss this with his doctor, although all allergy testing came back negative.

Yes, the zyrtec and zantac helped alot too for me in addition to the nexium I was already taking. I have the celiac gene in my family and asthma. The allergist said that having asmtha or hayfever in family can also lead to other food allergies because I still have problems beyond the wheat.

[Owen'sMom]

Asthma and hayfever do run in our family. I myself suffer from both and also food allergies. I printed out some articles and will take it to his ped at his check-up and will request that they check the slides that are left from his scope last year. If they can't do it they can send them somewhere else do get it done.

[jillb]

Asthma and hayfever do run in our family. I myself suffer from both and also food allergies. I printed out some articles and will take it to his ped at his check-up and will request that they check the slides that are left from his scope last year. If they can't do it they can send them somewhere else do get it done.

I had an old biopsy by another dr. pulled and the mast cell still did not show up. My Dr said the cells come and go and if he would have taken the biopsy they put your hand in cold water to stress the body and make the cells show up during the procedure. So, despite my negative test results, he is treating me based on symptoms. Just something to consider.

[Owen'sMom]

That is good to know. Thank you so much for the information.

[BMac]

My Dr is treating me for this disease. It is commonly found with people with the celiac gene and gluten intolerance. I tested negative for celiac but still was having worsening syptoms. I am seeing an allergist now to determine other allergens, but common ones that are triggers are fermented foods, citric, coffee, chocolate, wheat. Does anyone else have this?

This is a great website that describes the details:

Open Original Shared Link

Hi Jillb -- I'm a bit late in replying as I only found your post by searching for mostocytic enterocolitis. My doctor recently told me that I had this too. As a matter of coincidence, my doctor is the guy whose website you mentioned. Anyway, I tested negative for celiac, but had a positive blood test for DQ2. I've been gluten free since December and I am still not symptom free. My symptoms seem pretty mild and isolated compared to a lot of other people on this site - so I'm very fortunate in that respect. My only symptoms are frequent bowel movements (6 to 7 times a day, almost always before 11am) as well as a lot of flatulence, but very little pain or bloating. Going gluten free has certainly helped my symptoms a lot - but they have not disappeared. I wonder if I have other food allergies as well - I have yet to be tested. After reading your comment about coffee and chocolate, I started reading more posts on these foods. I would hate to think I have to give up coffee and chocolate! But if it helps, I'll do it.

I'm wondering how things are going for you and what your allergist told you? My Dr. also prescribed Gastrocrom, but I have not taken it yet as it's hard to find around here and even with insurance a bit pricey. But I think that is my next step. Have you tried this med? Is anyone else out there on Gastrocrom?

[Matilda]

My doctor recommended quercetin, which is a supplement derived from fruit, which acts as a mast cell stabilizer. That might help.

Matilda

[jillb]

Hi Jillb -- I'm a bit late in replying as I only found your post by searching for mostocytic enterocolitis. My doctor recently told me that I had this too. As a matter of coincidence, my doctor is the guy whose website you mentioned. Anyway, I tested negative for celiac, but had a positive blood test for DQ2. I've been gluten free since December and I am still not symptom free. My symptoms seem pretty mild and isolated compared to a lot of other people on this site - so I'm very fortunate in that respect. My only symptoms are frequent bowel movements (6 to 7 times a day, almost always before 11am) as well as a lot of flatulence, but very little pain or bloating. Going gluten free has certainly helped my symptoms a lot - but they have not disappeared. I wonder if I have other food allergies as well - I have yet to be tested. After reading your comment about coffee and chocolate, I started reading more posts on these foods. I would hate to think I have to give up coffee and chocolate! But if it helps, I'll do it.

I'm wondering how things are going for you and what your allergist told you? My Dr. also prescribed Gastrocrom, but I have not taken it yet as it's hard to find around here and even with insurance a bit pricey. But I think that is my next step. Have you tried this med? Is anyone else out there on Gastrocrom?

Hi,

It is good to hear from someone else with this diagnosis. I too had a negative celiac test and assume I have the gene because my cousin has Celiac, but did not test for it. I get the reverse (constipation) and pain, bloating, and even a rash. I took the allergy test and it was pretty much a waste time/money. Nothing showed up, and will only show up it you are severely allergic. It at least put my mind to rest, but I hoped to find something. I am on zantac, zyrtec, and nexium and this is going well. I also take psyllium at night. You really need to stop the coffee and chocolate-there is a chemical that is in these that triggers mast cells-especially coffee. It helped for me. Gluten free helped considerably, but still had symptoms- vinegars, tomato, aged cheeses, red wine really made a difference too. I tryed a little chocolate at times on a full stomach and that seems okay once in awhile, but not on an empty stomach.

What foods did the Dr. tell you cause the flare up? Do you live in CO? I did not get put on Gastrocrom. I am interested to see how you progress.

[BMac]

Thanks for writing, Jill. I still haven't figure out how to manuever my way through this website yet. I'm not even sure what "fast reply" is but I'm guessing it will work!

Anyway, yes, I do live in Colorado and I have an appt. to see my doc again in June. He has not landed on a firm diaganoses just yet -- going on a gluten free diet was kind of a test. It was his best guess that I may have an intolerance. And I've been gluten free since December and THOUGHT it was helping, but as time goes by I'm not so sure. Even when I know I haven't eaten any gluten, I still quite often have my symptoms -- although most of the time not as severe. I tried the Gastrocrom for 10 days -- my prescription only lasted that long and even with insurance it was $70! It made my stomach feel even more unsettled, but that could just be temporary side effects. In the time I took it, I did not notice any improvement. And I can't afford to continue with it unless it's a miracle drug! So, I'm starting to wonder if maybe it's not gluten I'm allergic to, but something else. I have not been tested for food allergies. I suspect, like you, that nothing definitive will come from it. No one else in my family has been diagnosed with it. So, as an experiment last week, I ate a cheeseburger, bun and all, from Burger King. I did not have any reaction to it at all!! So, now I'm more confused then ever.

I gave up coffee for 3 days only -- but did not notice any improvement. Maybe it wasn't long enough?? And I do notice my symptoms worsen with a significant amount of chocolate. I don't know, it's still a mystery and I hope to get some more direction when I see my doc again.

Maybe I should try Zyrtec or something else along those lines? It would be nice if these things were more clear cut, wouldn't it? Keep me posted on how you're doing!

BMac

[jillb]

Thanks for writing, Jill. I still haven't figure out how to manuever my way through this website yet. I'm not even sure what "fast reply" is but I'm guessing it will work!

Anyway, yes, I do live in Colorado and I have an appt. to see my doc again in June. He has not landed on a firm diaganoses just yet -- going on a gluten free diet was kind of a test. It was his best guess that I may have an intolerance. And I've been gluten free since December and THOUGHT it was helping, but as time goes by I'm not so sure. Even when I know I haven't eaten any gluten, I still quite often have my symptoms -- although most of the time not as severe. I tried the Gastrocrom for 10 days -- my prescription only lasted that long and even with insurance it was $70! It made my stomach feel even more unsettled, but that could just be temporary side effects. In the time I took it, I did not notice any improvement. And I can't afford to continue with it unless it's a miracle drug! So, I'm starting to wonder if maybe it's not gluten I'm allergic to, but something else. I have not been tested for food allergies. I suspect, like you, that nothing definitive will come from it. No one else in my family has been diagnosed with it. So, as an experiment last week, I ate a cheeseburger, bun and all, from Burger King. I did not have any reaction to it at all!! So, now I'm more confused then ever.

I gave up coffee for 3 days only -- but did not notice any improvement. Maybe it wasn't long enough?? And I do notice my symptoms worsen with a significant amount of chocolate. I don't know, it's still a mystery and I hope to get some more direction when I see my doc again.

Maybe I should try Zyrtec or something else along those lines? It would be nice if these things were more clear cut, wouldn't it? Keep me posted on how you're doing!

BMac

[jillb]

BMAC,

I am very interested in what your Dr. has to say. Mine says it something that can come and go. But personally, I had to obstain from the certain foods for awhile for my symptoms to subside, then slowly try a little after everything has calmed down. Also, if my stomach has been real good, I have been known to be able to eat one of the bad foods. The zantac helped alot too. You can send a direct message to me by clicking on my name. I get this in my inbox right way, otherwise I have to check this posting.

Good luck and keep me posted.

[dollamasgetceliac?]

I forgot to add Asthma to my list but maybe I shouls say it is a partial list in progress I drink black tea and there for I do not have Asthma symptoms at all. A few doctors confirmed that there is something in black tea that is the same thing in a Bronchodialater. To get kids to drink it add it to the lemonaid. There is a controvery here because many Mothers of Asthmatics swear by Dr. Feingolds diet He was an Asthma Dr, in San Francisco, he would tell the parents of children with Asthma to go on his diet , many parents said that not only is their child better with Asthma and Allergies but also the children are better behaved. It is a 6 week diet basically avoiding foods with a certain acid there is more to avoid. Then you introduce these foods after a while you will know the offending food. The website if it still exists is Feingold. I think it is worth a try with a child that young, just my opinion but please ask a doctor I hate to put you through all this trouble . A good Doctor knows the name. he truly was a great Doctor.