Mastocytic Enterocolitis Diagnosis - Questions

[rlw]

About a month ago, I was diagnosed with Mastocytic Enterocolitis. I have had the blood test to screen for Systemic Mastocytosis, but I don’t have the results yet. I have no reason to suspect I will test positive. My GI doctor told me that the only ME patients he has that have the systemic version were diagnosed with it prior to having GI symptoms, which I found reassuring.

My doctor put me on Zyrtec, Zantac and Gastrocrom. The Zyrtec made me very sleepy, so he replaced that with Singulair after about a week. From what I have read, this combination is pretty standard treatment.

I thought I had asked all my questions at my first post-diagnosis appointment, but now I have a few more and I don’t go back for a follow up for a couple of months. This looks like a good place to look for answers.

The most nagging question I have is whether ME is chronic or curable. I was under the impression that after three months I should be cured or at least be well on the way. The more I think about what my doctor actually said as opposed to what I inferred, I’m thinking this may be a chronic condition. I think what he really meant is that my symptoms should be under control by my next appointment, not that I will be cured. Am I going to need medications to keep my symptoms under control for the rest of my life? Do the medications reduce the number of mast cells (temporarily or permanently), or just keep them from causing problems?

I’m not sure I am taking the Gastrocrom correctly. Do you put it in a glass of water as the insert says, or do you take it right out of the vials as my pharmacist suggested? Does it matter? My doctor told me that I don’t have to wait 30 minutes after I take it before I can eat. However, I sometimes don’t remember to take it until after I have started to eat. Is it still effective if I have already eaten something prior to taking it? Is it ok to eat a snack without taking it or should I only eat after I’ve taken it?

My doctor told me that medication may not be enough and that I may need to try an elimination diet. That makes me wonder if I start an elimination diet, will the medications still be necessary. I’m not sure how well I would be able to stick to an elimination diet, but if it would mean that I wouldn’t need something as expensive as Gastrocrom, I would be more motivated. For those of you that use an elimination diet, do you still need medications?

I’ve been on these medications for about three weeks. I am finding that they have helped some, but I still never have a regular BM. I don’t have diarrhea as severe as I used to, but I still have to make an occasional mad dash and sometimes bounce back and forth between loose stools and constipation even within a 24 hour period. I still experience bloating and cramping, though no longer after every meal. I have had edema for a couple of months, which has improved considerably. I still have fatigue and joint pain, which may or may not be related. Is this the best I can expect at this point? Will the medications help more over time? Is it possible that I need some changes in the medications? I'm wondering if switching from Zyrtec to Singulair was the right choice.

I have more questions, but I think I’ll stop for now. I’m really glad I found this site, especially since ME is supposedly a very rare disorder. I appreciate the time of all who read this post.

[tex]

Hi,

Welcome to our internet family. Not only is ME a rather rare disorder, but it is quite new, (as far as medical community awareness and diagnostic guidelines are concerned), so I'm rather surprised that your GI doc can claim to have a plurality of patients with the condition. If he actually has more than one or two, I would question the "rare" status assigned to the disease.

The bad news is that the disease is permanent, (once the genes are triggered, there is no known way to untrigger them, so to speak). However, the symptoms can be controlled. I'm not an expert on ME, but I believe that you will find it necessary to make significant dietary changes, in order to obtain a satisfactory level of remission. Hopefully, if you can track down all of your problem foods, and eliminate them from your diet, you will be able to do without any meds, in the long run, though they may be helpful in the short term.

I don't believe any of those meds work by reducing the number of mast cells - they work by preventing them from granulating, (releasing histamines).

Here's the proper way to take Gastrocrom:

Gastrocrom should be administered as a solution at least 1/2 hour before meals and at bedtime after preparation according to the following directions:

1. Break open ampule(s) and squeeze liquid contents of ampule(s) into a glass of water.
2. Stir solution.
3. Drink all of the liquid.

For an illustration of the preparation process, scroll down the page at this link:

http://www.drugs.com/pro/gastrocrom.html

I would assume that failure to follow this procedure will result in drastically reduced effectiveness, (unless, of course, you fine tune your diet to eliminate the problem foods).

If you will click on the red link that is located toward the top, and centered on every page on our site, (the one that says, "Search The Archives of This Discussion Board", and do a search for the keywords "mastocytic enterocolitis", (and select the "Search for all terms" option), you should find a number of past discussions about this topic, which may help to answer some of your questions about it. The posts by faithberry, jme22, and mbeezie are probably the most comprehensive discussions, but the article by Dr. Scot Lewey is a very good introduction, if you haven't already seen it. Mary Beth, (mbeezie), is a licensed dietitian, who has these issues herself, so she is an excellent source of information, regarding the use of diet to control the symptoms of this condition.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[Robbie]

Welcome! I cannot offer much help, because I'm new, too, other than to say --- listen to Tex - he knows his stuff!!

[ant]

Dear Rlw

to the family, from Hong Kong.

All best wishes in your journey to better health, ant

[rlw]

Thank you for the warm welcome.

Tex, you have confirmed my fears. But it is better to know than to wonder.

Interestingly enough, Dr. Scot Lewey is my doctor. My GP just happened to refer me to Dr. Lewey because Dr. Lewey had done his colonoscopy. I’m not quite clear on the numbers, but I believe I am Dr. Lewey’s 50th patient with this disorder. Only two of those have SM.

At first I was very suspicious to find that my doctor’s name is all over the internet in connection with ME and that he has so many patients with a rare disorder. Now I realize that he has done a lot of research on ME and has so many patients because he is one of only a few doctors that routinely tests for mast cells. I suspect ME is not really all that rare, but most doctors aren’t testing for it. If biopsies and mast staining become routine for patients with chronic diarrhea, I think we will find ME to be not quite as rare as it seems today. I now consider myself to be very fortunate to have happened to be referred to Dr Lewey. I think he pretty much knew I had ME before he even did the biopsies. If I had gone to another GI, I probably would have been told that I have IBS.

As you suggested, I will search this site for ME. I will be especially interested to read posts by Mary Beth concerning diet.

Concerning Gastrocrom, I believe the above link contains the same information in the insert that comes with the prescription. I have been mixing it with water, but since my results have not been as good as I expected, I have been wondering if I should be taking it straight. The pharmacist told me to drink it. I doubt he has much experience with Gastrocrom though. In fact, he didn’t fill the prescription until I was there in person to verify that I really wanted it. I am hoping to hear from someone who takes Gastrocrom and can tell me how they take it.

Again, thanks for the warm welcome. It sounds as though I will have reason to stay around for a long time to come.

[tex]

I’m not quite clear on the numbers, but I believe I am Dr. Lewey’s 50th patient with this disorder. Only two of those have SM.

I can certainly believe that. Dr. Lewey is a rather unique GI doc, and he appears to stay on the cutting edge of developments. He's way ahead of most other GI docs on this disease, and food-related issues in general. We have at least one other member, who is being treated by him, (for MC, not ME).

I suspect ME is not really all that rare, but most doctors aren’t testing for it.

I definitely agree with you. That seems to be the reason why some other diseases are rare - they're simply off the radar of most doctors.

If I had gone to another GI, I probably would have been told that I have IBS.

Isn't that the sad truth? It's amazing how many of our members have been misdiagnosed with IBS, but the GI docs are getting better, as they realize that they need to take biopsy samples. Unfortunately, few pathologists seem to be aware that they need to use that special stain, (for Mast cells), on a routine basis, when checking for GI issues, and they don't even keep it on hand, but hopefully, they will soon learn to do that.

We certainly hope you stick around. We're all learning together, and we have good teachers - each other. No one understands these diseases as well as those who have to live with them on a daily basis.

Tex

[Ginny]

Welcome RLW to this great family of MC'ers! I have CC but I believe that Mast cells have played a big part in my slow recovery. Mary Beth will be a great source of information for you. You are fortunate to be seeing Dr. Lewey. I am one of those people that had a misdiagnosis of IBS for 8 months before having to see another GI and another colonoscopy!

You will find a wealth of information on this website, but more importantly you will find the support you need from fellow sufferers! Ginny

[mbeezie]

RLW,

Welcome! I too have mast cell issues and am the dietitian Tex referred to. Hopefully I can provide some insight for you.

Gastrocrom is a mast cell stabilizer (tries to prevent mast cells from dumping histamine) and zyrtec/zantac work to control the action of histamine after it has been released. There is another medication called ketotifen but it is not available in the US.

Diet is very important as some foods can trigger mast cell degranulation. An elimination diet may work - ask Dr. Lewey about doing Mediator Release Testing - he has utilized this in the past and has written about it - it helped me tremendously in designing an elimination diet to identify triggers (it was his article that lead me in that direction). There is a dietitian in Colorado you could work with - I think she knows Dr. Lewey - her name is Jan Patenaude and her speicalty is helping people figure out food sensitivities. You could also try following a histamine restricted diet to help reduce your overall histamine load. Also, it's very important ot get your vitamin D level checked and get it in the normal range if it is low.

I am currently in remission and not taking any meds, just following diet and avoiding known triggers. I will always have mast cell problems, but they are manageable. Systemic mastocytosis is rare, but I beleive ME is not as rare as once thought.

Take care,

Mary Beth

[rlw]

Oh my, you brought tears to my eyes. I am so grateful that there may be a local dietitian I can work with. I have no confidence in my ability to figure out my triggers on my own. The fact that you are able to control your mast cell issues with diet alone is very encouraging to me.

Going on an elimination diet seems overwhelming to me at this point. My husband is pre-diabetic and I am afraid that I will find that the majority of the foods I fix for him will be on my forbidden list. He eats many fresh fruits and vegetables and a lot of fish, nuts and whole grains. I need some help to figure out how to meet both our needs.

I had my vitamin D level tested about 4 years ago. It was very low. I was on a prescription supplement off and on for about a year. My level is now low-normal and I continue to take 5000 IU daily. I’m curious about why you mentioned vitamin D. Is low vitamin D a symptom of ME? How are mast cells related to vitamin D?

[rlw]

I must be very fortunate in the doctors that I have seen. I did an internet search on Mediator Release Testing and found that this is a test that I have already had. My GP is pretty cutting edge and he had me do this test a few years ago during another bout with chronic diarrhea. I had only a few foods show up in the red zone and a few in the yellow zone. There were several in the green zone. I am very careful to avoid the red zone foods, but not very good at the yellow and green zone foods. I guess my first step is to start being more careful about avoiding the yellow and green zone.

I was actually planning to ask a question about this testing. My GP brought up the possibility of repeating this test a few months ago. At the time, I wasn’t in favor of retesting because I didn’t think the results would be much different. But now I am wondering if more foods would show up. Have you had this test done more than once? Do you think the results might change?

[mbeezie]

RLW,

See Tex's recent post on vitamin D and IBDs - we all need to have normal vitamin D levels.

I think you should get back on your phase 1 MRT/LEAP diet and follow the program again, maybe more striclty this time. Yes, some sensitivities can change over time but you may not need to re-test. Did you work with a dietitian? If not you may want to follow up with Jan Patenaude - she is the most experienced dietitian regarding MRT (she basically oversees the dietitian program).

It's true that you might not like your results and not want to give up certain foods. But my experience has been that I would rather do without certain foods than have mast cell issues. BTW, my mast cell issues were not just confined to my gut - I developed other symptoms, which can happen if mast cells stay activated.

Mary Beth

[rlw]

Well, now I am confused. I just found my test results and it’s not quite what I thought. The test was for IgG and IgE antibodies and the results are shown as green, yellow and red. However, it was done by US BioTek rather than Signet and is called ELISA instead of MRT. I don’t see anything that explains what ELISA means. The report contains a “Personalized Elimination Rotation Diet Guideline”, but that guideline includes all of the foods that I tested as moderately reactive to as well as some foods I know cause a reaction. I think that is probably why I never followed that diet. I did not work with a dietitian. My GP just went over the results with me and told me to avoid anything that was in the yellow or red zone. I am assuming that a phase I LEAP diet would also eliminate these foods.

I’m not so sure my mast cell issues are limited to my gut either. I have some joint pain that I am very suspicious of. I was also diagnosed with a sleep disorder about four years ago. I’ve never fully accepted that and have always felt something else was at the root of my sleep issues. I also suffer from dizzy spells with no known cause. And of course, the edema is new, but I’m pretty sure that is an indirect result of a leaky gut. It is my hope that if I can get my GI symptoms under control, my other symptoms will also improve.

Thank you so much for taking the time to answer my many questions!

[mbeezie]

RLW,

LEAP/MRT and ELISA/IgG are distinctly different. IgG is not considered as accurate as MRT becasue it only measures IgG reactions whereas MRT reflects response from a wide range of mediators . I think the benefit of LEAP mis that you work with a dietitian who uses clinical judgement, not just test results. For example, if I were working with you, knowing that you had ME, I would impose histamine restrictions on top of your results and we would build a tailor made elimination diet. You could ask Dr. Lewey about possibly retesting.

I had insomnia for 10 years that I was told was due to the fact that I was perimenopausal. However, shortly after going gluten free my insomnia went away and has never returned. I have also had those dizzy spells - that is a sign of mast cell disorder. Fluid shifts are also not uncommon with mast cell problems. Go to www.tmsforacure.org to see a list of common symptoms.

Yes, it's all very confusing and takes time to sort out. As Tex suggested, use the search option on the forum and type in mast cells as the key words and you will find all of our previous discussions, some of which were quite extensive.

Mary Beth

[barbaranoela]

Greetings RLW sorry I missed to our family----I think they contain more info than any book can reveal----and sometimes more than a good doctor has to offer--

I Xperienced that *duh* volume of *nothing* from my first GI--staying with him for a few years cus at that time I thought whatever he could say was something to listen 2--boy was I wrong~~~~suffered many years with him--and then someone gave me the name of a GI in New York City and this is where my life started to come alive~~~

Dont give up-----check everything out and U will (as I call it) walk that *wellness road* again~~~

Barbara