Hello all,
I was diagnosed this spring with mastocytic enterocolitis. This is a relatively new diagnosis (first mentioned in medical literature in 2006) so I was wondering if anyone else shares this diagnosis. If so, I would be interested in hearing about your experience.
Thanks in advance and good health to all!
Mastocytic Enterocolitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to the group. We've had one or two "suspected cases", but so far, I'm not aware of anyone here who has been diagnosed with it. A lot of GI docs are probably still unaware of it, at this point, so they wouldn't even be likely to order the special stain necessary to identify it in the biopsy samples. IOW, I doubt that anyone here has even been "checked" for it.
You may be interested in this discussion from a few months ago:
http://www.perskyfarms.com/phpBB2/viewt ... erocolitis
Again, welcome aboard,
Tex
Welcome to the group. We've had one or two "suspected cases", but so far, I'm not aware of anyone here who has been diagnosed with it. A lot of GI docs are probably still unaware of it, at this point, so they wouldn't even be likely to order the special stain necessary to identify it in the biopsy samples. IOW, I doubt that anyone here has even been "checked" for it.
You may be interested in this discussion from a few months ago:
http://www.perskyfarms.com/phpBB2/viewt ... erocolitis
Again, welcome aboard,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I just read through faithberry's old thread. It makes me wonder if this is what I have since I appear to have numerous intolerances to both foods and drugs. My sister has chronic urticaria and chronic C - possibly same problem with a different expression. When I finally do get a colonoscopy I need to demand they check for ME as well. I found it interesting that faithberry was double DQ1 as well.
BTW, welcome to our group jme22. I am curious to know more about your symptoms and intolerances.
Mary Beth
BTW, welcome to our group jme22. I am curious to know more about your symptoms and intolerances.
Mary Beth
Mary Beth,
Until more is known about it, I believe that doctors should be considering it as a possibility, (and testing for it), for anyone with "unexplained" GI issues. After all, all it takes to check for it is to re-stain a sample with the proper stain, and analyze it under the microscope. That shouldn't cost much, in terms of either time or money.
Tex
Until more is known about it, I believe that doctors should be considering it as a possibility, (and testing for it), for anyone with "unexplained" GI issues. After all, all it takes to check for it is to re-stain a sample with the proper stain, and analyze it under the microscope. That shouldn't cost much, in terms of either time or money.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you all for the warm welcome and to you in particular Tex for the link. It's difficult gathering information on a condition that is recently recognized and not well documented in medical literature. As my GI doc often tells me, "we're still learning" when it comes to understanding ME. I guess he and I will learn together.
Here's my journey with ME...perhaps this may help somone else -
About a year ago I started having chronic bouts of very bad nausea. (Stop you in your tracks type of nausea.) I lived off of ginger ale and crackers for months. In November (as I was about to board a plane...great timing) I was hit by the absolute worse D that I had ever experienced. Urgency that can only be described as "OMG...I need to RUN to the BR, not walk!" That episode started a month log battle with D, alternating with C, and terrible nausea coupled with extreme fatigue. Unfortunately, right about this time I developed a DVT in my right leg (after flying from the east coast to the west coast and back again) which then became the focus of my GI involvement. (DVTs can be caused by a mass on one of the many organs in our abdominal cavity.) Because I was having so many GI symptoms and dealing with a DVT, the doctor looked everywhere for any type of mass that could have caused both the clot and the GI problems. I had every scan and xray known to man looking for a mass. Luckily, NO mass was found. But, ironically thanks to my DVT (likely from flying) we ruled out any type of tumor that could have been contributing to my GI symptoms. Great news, of course, but still no answer on why I was having the GI symptoms.
After the DVT was resolved I started the process of trying to find out what was causing the many GI (D, alernating with C, horrendous bloating, abdominal pain, nausea) symptoms. My rheumie (I have mixed connective tissue disease) ran some blood work and the results indicated IBD. He sent me off to the GI doc (where I should have been much earlier had it not been for the DVT) for evaluation. In the spring I finally had my colonoscopy. My doc remarked that my tissue looked healthy but he (thankfully) is very well versed on MC, so he biopsied numerous areas looking for a variety of culprits. He had the biopsy stained for ME and the results came back positive. Just this week I spoke with my second opinion doc at Hopkins and he confirmed the diagnosis after they also tested my tissue from the colonoscopy. (I took possession of the original colonoscopy slides and tissue sample and hand carried them up to Hopkins for retesting. Luckily, I live in the DC/Baltimore area.) So, the verdict is in and confirmed, ME is in fact the culprit.
ME is complex, so I will give you my VERY basic understanding. Mast cells are a part of our immune system. One of their many functions is to release histamine (think allergies) when they are stimulated. Although mast cells are normally found in our lower GI, patients with ME have too many mast cells, which is where the problem comes in. The number of mast cells present can only be determined through special staining of biopsy tissue. The staining looks specifically for tryptase, which is a component of the mast cell. If the number of mast cells found in the biopsy tissue reaches a certain level, (20+) the patient is diagnosed with ME.
When mast cells are too abundant in the lower GI and are releasing histamine patients can experience D, sometimes alternating with C; abdominal bloating (very bad for me); nausea; vomiting and abdominal pain. There can also be non-GI symptoms as well. This may be why in my case, my asthma and allergy symptoms resurfaced this past year as my body reacted to the increased amount of histamine being released by the mast cells. Although medical literature doesn't discuss allergy symptoms as part of the ME picture, I'm very suspicious this is why my allergy symptoms worsened. It just seems like too much of a coincidence that I have too many mast cells in my gut releasing histamine and at the same time am experiencing an unexplained return of asthma and allergy symptoms.
We are fine tuning my medication now that I have a definitive diagnosis. I'm on Zyrtec, (H1 anti-histamine) Xantac, (H2 anti-histamine) starting on Entocort next week and possibly going on Cromolyn (mast cell stabilizer) as well. Hopefully, this will help me to feel better once and for all. I'm battling with upper GI symptoms now (GERD, back pain, difficulty swallowing,...) which don't seem to be responding too much. (Recent endoscope indicated GERD and gastritis.) Again, the GI doc is "suspicious" these symptoms are related to ME, but he can't say definitively because "we're still learning" about ME. I hear this over and over again, guess I'll have to get used to it.
I've also given up gluten as I feel it was contributing to my nausea and allergy symptoms. Although my GI doc doesn't feel this is necessary, I think gluten was making me feel worse. I tried to go back on it after being off of it for awhile and found myself with bad nausea again, plus itchy mouth, lips and throat. Enough evidence as far as I'm conerned...no more gluten.
I hope my experience will help others with significant GI symptoms reinforce with their doctors the importance of a) taking biopsies during a colonoscopy even when tissue looks healthy and b) including the special staining of tissue for ME. I'm grateful and thankful beyond words to my GI doc for looking beyond the obvious and testing me for even the rare and unusual. I hate to think where I would be without him.
Now I will continue my care with both my GI doc and also the allergist/immunologist at Hopkins. (Allergists deal with mast cells so they consult on the mast cell involvement...just another complex twist.) I'll keep you posted and thanks again for the warm welcome.
Wishing you all good health,
Julie
Here's my journey with ME...perhaps this may help somone else -
About a year ago I started having chronic bouts of very bad nausea. (Stop you in your tracks type of nausea.) I lived off of ginger ale and crackers for months. In November (as I was about to board a plane...great timing) I was hit by the absolute worse D that I had ever experienced. Urgency that can only be described as "OMG...I need to RUN to the BR, not walk!" That episode started a month log battle with D, alternating with C, and terrible nausea coupled with extreme fatigue. Unfortunately, right about this time I developed a DVT in my right leg (after flying from the east coast to the west coast and back again) which then became the focus of my GI involvement. (DVTs can be caused by a mass on one of the many organs in our abdominal cavity.) Because I was having so many GI symptoms and dealing with a DVT, the doctor looked everywhere for any type of mass that could have caused both the clot and the GI problems. I had every scan and xray known to man looking for a mass. Luckily, NO mass was found. But, ironically thanks to my DVT (likely from flying) we ruled out any type of tumor that could have been contributing to my GI symptoms. Great news, of course, but still no answer on why I was having the GI symptoms.
After the DVT was resolved I started the process of trying to find out what was causing the many GI (D, alernating with C, horrendous bloating, abdominal pain, nausea) symptoms. My rheumie (I have mixed connective tissue disease) ran some blood work and the results indicated IBD. He sent me off to the GI doc (where I should have been much earlier had it not been for the DVT) for evaluation. In the spring I finally had my colonoscopy. My doc remarked that my tissue looked healthy but he (thankfully) is very well versed on MC, so he biopsied numerous areas looking for a variety of culprits. He had the biopsy stained for ME and the results came back positive. Just this week I spoke with my second opinion doc at Hopkins and he confirmed the diagnosis after they also tested my tissue from the colonoscopy. (I took possession of the original colonoscopy slides and tissue sample and hand carried them up to Hopkins for retesting. Luckily, I live in the DC/Baltimore area.) So, the verdict is in and confirmed, ME is in fact the culprit.
ME is complex, so I will give you my VERY basic understanding. Mast cells are a part of our immune system. One of their many functions is to release histamine (think allergies) when they are stimulated. Although mast cells are normally found in our lower GI, patients with ME have too many mast cells, which is where the problem comes in. The number of mast cells present can only be determined through special staining of biopsy tissue. The staining looks specifically for tryptase, which is a component of the mast cell. If the number of mast cells found in the biopsy tissue reaches a certain level, (20+) the patient is diagnosed with ME.
When mast cells are too abundant in the lower GI and are releasing histamine patients can experience D, sometimes alternating with C; abdominal bloating (very bad for me); nausea; vomiting and abdominal pain. There can also be non-GI symptoms as well. This may be why in my case, my asthma and allergy symptoms resurfaced this past year as my body reacted to the increased amount of histamine being released by the mast cells. Although medical literature doesn't discuss allergy symptoms as part of the ME picture, I'm very suspicious this is why my allergy symptoms worsened. It just seems like too much of a coincidence that I have too many mast cells in my gut releasing histamine and at the same time am experiencing an unexplained return of asthma and allergy symptoms.
We are fine tuning my medication now that I have a definitive diagnosis. I'm on Zyrtec, (H1 anti-histamine) Xantac, (H2 anti-histamine) starting on Entocort next week and possibly going on Cromolyn (mast cell stabilizer) as well. Hopefully, this will help me to feel better once and for all. I'm battling with upper GI symptoms now (GERD, back pain, difficulty swallowing,...) which don't seem to be responding too much. (Recent endoscope indicated GERD and gastritis.) Again, the GI doc is "suspicious" these symptoms are related to ME, but he can't say definitively because "we're still learning" about ME. I hear this over and over again, guess I'll have to get used to it.
I've also given up gluten as I feel it was contributing to my nausea and allergy symptoms. Although my GI doc doesn't feel this is necessary, I think gluten was making me feel worse. I tried to go back on it after being off of it for awhile and found myself with bad nausea again, plus itchy mouth, lips and throat. Enough evidence as far as I'm conerned...no more gluten.
I hope my experience will help others with significant GI symptoms reinforce with their doctors the importance of a) taking biopsies during a colonoscopy even when tissue looks healthy and b) including the special staining of tissue for ME. I'm grateful and thankful beyond words to my GI doc for looking beyond the obvious and testing me for even the rare and unusual. I hate to think where I would be without him.
Now I will continue my care with both my GI doc and also the allergist/immunologist at Hopkins. (Allergists deal with mast cells so they consult on the mast cell involvement...just another complex twist.) I'll keep you posted and thanks again for the warm welcome.
Wishing you all good health,
Julie
Julie,
Thanks for sharing. Hopefully the meds you are starting will help control symptoms.
I am starting to get my lower GI symptoms under control, but now upper GI problems are becoming more evident. I have had swallowing difficulties for a few years but they are getting worse. Lately I am noticing lots of coughing episodes after eating certain foods and lots of mucous production. I have had GERD in the past but my new elimination diet controls that. I also notice breathing difficulty at times and wonder if it's the beginning of asthma.
I have an appt with a new GI in 10 days and want biopsies from one end to the other. I wonder about mast cells and eosinophlic disorders.
I am curious . . . did you have IgE blood tests for food allergies? Are you on a low histamine diet and did the allergist recommend this?
Mary Beth
Thanks for sharing. Hopefully the meds you are starting will help control symptoms.
I am starting to get my lower GI symptoms under control, but now upper GI problems are becoming more evident. I have had swallowing difficulties for a few years but they are getting worse. Lately I am noticing lots of coughing episodes after eating certain foods and lots of mucous production. I have had GERD in the past but my new elimination diet controls that. I also notice breathing difficulty at times and wonder if it's the beginning of asthma.
I have an appt with a new GI in 10 days and want biopsies from one end to the other. I wonder about mast cells and eosinophlic disorders.
I am curious . . . did you have IgE blood tests for food allergies? Are you on a low histamine diet and did the allergist recommend this?
Mary Beth
Dear Julie
A late welcome!! Thank you for your very informative post. My GI doc was also great to test properly for MC last November and I am extremely thankful for that. But, he did not do a mast cell check. It strikes me you have very cooperative doctors with open minds. I would much prefer an honest "we are still learning" approach, than doctors closed to possibilities that are not in the "book".
Best regards, ant
A late welcome!! Thank you for your very informative post. My GI doc was also great to test properly for MC last November and I am extremely thankful for that. But, he did not do a mast cell check. It strikes me you have very cooperative doctors with open minds. I would much prefer an honest "we are still learning" approach, than doctors closed to possibilities that are not in the "book".
Best regards, ant
Hi Julie,
The symptoms of ME and MC are very, very similar, though the treatment is different. At least, the treatment recognized by the medical community, is different between the two issues. I wonder, though, if gluuten and certain other proteins in the diet might be a common trigger. IOW, it's possible that the dietary treatment might well be the same - cut out your food intolerances, to reduce the proliferation of mast cells, just as eliminating trigger foods, will eliminate the source of inflammation for those who have MC.
Be aware that virtually all but a handful of GI docs will always claim that there is no reason to avoid gluten in the diet, unless a patient is a diagnosed celiac. The members of this board have to deal with that problem regularly. GI docs just don't seem to be able to grasp the connection between diet and digestive system diseases.
I'm kind of curious why your doctor did not prescribe cromolyn sodium, (Gastrocrom), since that's considered to be the most specific therapy for mastocytic enterocolitis, (it stabilizes mast cells to try to prevent them from releasing their chemical mediators in the first place).
Thanks for all the insight and information.
Tex
The symptoms of ME and MC are very, very similar, though the treatment is different. At least, the treatment recognized by the medical community, is different between the two issues. I wonder, though, if gluuten and certain other proteins in the diet might be a common trigger. IOW, it's possible that the dietary treatment might well be the same - cut out your food intolerances, to reduce the proliferation of mast cells, just as eliminating trigger foods, will eliminate the source of inflammation for those who have MC.
Be aware that virtually all but a handful of GI docs will always claim that there is no reason to avoid gluten in the diet, unless a patient is a diagnosed celiac. The members of this board have to deal with that problem regularly. GI docs just don't seem to be able to grasp the connection between diet and digestive system diseases.
I'm kind of curious why your doctor did not prescribe cromolyn sodium, (Gastrocrom), since that's considered to be the most specific therapy for mastocytic enterocolitis, (it stabilizes mast cells to try to prevent them from releasing their chemical mediators in the first place).
Thanks for all the insight and information.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Hi Julie,
I also have mast cell issues, but we don't yet know where. I definitely have gut issues! My serum tryptase is elevated (now at 22.5), that's a marker for elevated mast cells and mastocytosis. Usually it's not elevated in ME, but they don't have enough experience with ME yet to know that for certain.
I'm curious what blood test your doctor did as a marker for IBD and what number your mast cells were at on your intestinal biopsy?
In case you don't know, mast cells can migrate into the stomach (most doctors don't know). Did they stain your upper endoscopy for mast cells?
I surely hope your symptoms are a product of the ME and do not indicate mastocytosis but you may not want to exclude the possibility entirely with all the symptoms you are having. Here's a link for you if you want to find out about more mastocytosis. They have a really great information page on mastocytosis. You may want to get your serum tryptase tested if the allergist hasn't done that already. It's a very good marker for mastocytosis, but not the only diagnostic criteria.
The Mastocytosis Society
www.tmsforacure.org
It seems like you have a great team of doctors! There's a mastocytosis expert at NIH, Dean Metcalfe, in case you need to check that out. Also, Dr. Greenberger in Boston (at Brigham's Women's Hospital) is very knowledgeable about gut mast cells issues, in case your doctor wants to consult with someone. The people at TMS can give you the contact info.
Glad you are on the right track and getting some good help.
Faith
PS Tex, sometimes Entorcort is used to treat mast cells in the gut, but often gastrocrom is tried first.
I also have mast cell issues, but we don't yet know where. I definitely have gut issues! My serum tryptase is elevated (now at 22.5), that's a marker for elevated mast cells and mastocytosis. Usually it's not elevated in ME, but they don't have enough experience with ME yet to know that for certain.
I'm curious what blood test your doctor did as a marker for IBD and what number your mast cells were at on your intestinal biopsy?
In case you don't know, mast cells can migrate into the stomach (most doctors don't know). Did they stain your upper endoscopy for mast cells?
I surely hope your symptoms are a product of the ME and do not indicate mastocytosis but you may not want to exclude the possibility entirely with all the symptoms you are having. Here's a link for you if you want to find out about more mastocytosis. They have a really great information page on mastocytosis. You may want to get your serum tryptase tested if the allergist hasn't done that already. It's a very good marker for mastocytosis, but not the only diagnostic criteria.
The Mastocytosis Society
www.tmsforacure.org
It seems like you have a great team of doctors! There's a mastocytosis expert at NIH, Dean Metcalfe, in case you need to check that out. Also, Dr. Greenberger in Boston (at Brigham's Women's Hospital) is very knowledgeable about gut mast cells issues, in case your doctor wants to consult with someone. The people at TMS can give you the contact info.
Glad you are on the right track and getting some good help.
Faith
PS Tex, sometimes Entorcort is used to treat mast cells in the gut, but often gastrocrom is tried first.
Faith
LC (in remission)
LC (in remission)
Hello all,
Thanks so much for the support and guidance! I feel very alone with this diagnosis, so it’s great to have such kind and informative responses from the MC community.
A few thoughts on issues that were asked about…
IgE testing for food allergies...Allergist doesn't seem too concerned about this issue and how it may relate to ME. He said that a true food allergy would be obvious as it causes dramatic and sudden symptoms after the offending food is eaten. I've never had this response to any food. (Happily!) However, that is not to say that ME doesn't involve food sensitivity or intolerance which can cause the mast cells to act up. No suggestion from the allergist about the low histamine diet either.
Cromolyn?...not yet. At this time my GI doc has held off prescribing it until he consults with the allergist. I got the sense that my GI doc rarely (never?) prescribes cromolyn so he wants to talk it over with the allergist first. He said I would likely use it in the form of an inhaler (Intal) and would have to learn how to swallow the "puff" from the inhaler as opposed to inhaling it into my lungs. The reason for swallowing the puff would be so it reaches my gut and doesn't wander off into my lungs. Weird, right?
IBD marker in my blood work was "Saccharomyces cerevisiae, IgG". Normal range is 0.0 to 24.9, mine was 47.0. This result along with my symptoms is what set me on my way to the GI specialist.
Number of mast cells in my biopsy ranged within the low to mid 20's depending upon which section of the colon it came from. I think anything above 20 is considered abnormal. I would be curious to know if this number could rise and fall depending upon the activity level of the disease.
Faith, thanks for the info on SM. The GI doc has been very concerned that I was dealing with SM which is why it has taken awhile to get me on the right path with the GI symptoms. I was evaluated for SM by two allergist; a local allergist who consulted with Dr. Metcalfe and the other one, the physician at Hopkins. The first allergist was very nice, but not very knowledgeable about SM. The physician at Hopkins, Dr. Bochner, was far more knowledgeable. He concluded that it is likely not SM for the following reasons: normal serum tryptase level, no skin involvement evident and the shape of the mast cells is not what he would expect from a patient with SM. Therefore, he recommended no bone marrow biopsy (BMB) at this time. I'm relieved that I get to avoid the BMB, but I wish I knew more definitively that I'm not dealing with SM. I have some non GI symptoms that still make me a little wary about completely ruling out SM, but I'm willing to take a "watchful waiting" approach. (Plus, with the meds I'm taking for ME, I'm essentially going to be taking the same meds as I would for SM, so I'm trying not to worry too much about it.)
I’m having a terrible time right now with upper GI symptoms. I’m calling my GI doc tomorrow and asking to be put back on Nexium. The Xantac is not touching the upper GI issues, so hopefully I can take both Nexium and Xantac in conjunction with Zyrtec and Singulair. I’m also going to ask for an update on when I can start on the cromolyn. I’ve been feeling so poorly this week that I’m ready for the full arsenal to get rid of these symptoms!
I’ll keep you posted and many thanks again for the suggestions, support and guidance!
Be well,
Julie
Thanks so much for the support and guidance! I feel very alone with this diagnosis, so it’s great to have such kind and informative responses from the MC community.
A few thoughts on issues that were asked about…
IgE testing for food allergies...Allergist doesn't seem too concerned about this issue and how it may relate to ME. He said that a true food allergy would be obvious as it causes dramatic and sudden symptoms after the offending food is eaten. I've never had this response to any food. (Happily!) However, that is not to say that ME doesn't involve food sensitivity or intolerance which can cause the mast cells to act up. No suggestion from the allergist about the low histamine diet either.
Cromolyn?...not yet. At this time my GI doc has held off prescribing it until he consults with the allergist. I got the sense that my GI doc rarely (never?) prescribes cromolyn so he wants to talk it over with the allergist first. He said I would likely use it in the form of an inhaler (Intal) and would have to learn how to swallow the "puff" from the inhaler as opposed to inhaling it into my lungs. The reason for swallowing the puff would be so it reaches my gut and doesn't wander off into my lungs. Weird, right?
IBD marker in my blood work was "Saccharomyces cerevisiae, IgG". Normal range is 0.0 to 24.9, mine was 47.0. This result along with my symptoms is what set me on my way to the GI specialist.
Number of mast cells in my biopsy ranged within the low to mid 20's depending upon which section of the colon it came from. I think anything above 20 is considered abnormal. I would be curious to know if this number could rise and fall depending upon the activity level of the disease.
Faith, thanks for the info on SM. The GI doc has been very concerned that I was dealing with SM which is why it has taken awhile to get me on the right path with the GI symptoms. I was evaluated for SM by two allergist; a local allergist who consulted with Dr. Metcalfe and the other one, the physician at Hopkins. The first allergist was very nice, but not very knowledgeable about SM. The physician at Hopkins, Dr. Bochner, was far more knowledgeable. He concluded that it is likely not SM for the following reasons: normal serum tryptase level, no skin involvement evident and the shape of the mast cells is not what he would expect from a patient with SM. Therefore, he recommended no bone marrow biopsy (BMB) at this time. I'm relieved that I get to avoid the BMB, but I wish I knew more definitively that I'm not dealing with SM. I have some non GI symptoms that still make me a little wary about completely ruling out SM, but I'm willing to take a "watchful waiting" approach. (Plus, with the meds I'm taking for ME, I'm essentially going to be taking the same meds as I would for SM, so I'm trying not to worry too much about it.)
I’m having a terrible time right now with upper GI symptoms. I’m calling my GI doc tomorrow and asking to be put back on Nexium. The Xantac is not touching the upper GI issues, so hopefully I can take both Nexium and Xantac in conjunction with Zyrtec and Singulair. I’m also going to ask for an update on when I can start on the cromolyn. I’ve been feeling so poorly this week that I’m ready for the full arsenal to get rid of these symptoms!
I’ll keep you posted and many thanks again for the suggestions, support and guidance!
Be well,
Julie
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Hopeliveshere
- Little Blue Penguin
- Posts: 31
- Joined: Sat Apr 25, 2009 8:54 pm
Hmmm. I'm finding all of this talk on mast cells & ME interesting. Julie, I hope you are feeling better. Your talk of your upper GI symptoms makes me shudder as I consider my own last year...and pray it doesn't happen again before I can get this whole thing under control.
My upper GI symtoms have been the most perplexing to me, and the mention of your upper symptoms along with this diagnosis makes me wonder if it isn't a possibility for me. I wonder if the Eosinophilic Center in Cinci still has my slides and whether they can stain for this.
FWIW, Gastrocrom is a frequently prescribed drug for Eosinophilic Esophagitis/Gastroenteritis. From my EG yahoogroup, it seems that quite a few folks are on it. Most have reported success in their upper GI symptoms.
I feel like I have a very 'grippy' gut with loads of gas that is unable to be expelled.
Both bloodwork (taken serially for nearly a year) and endoscopy revealed large numbers of eosinophils in my esophagus & stomach. I know that eosinophils and mast cells are not the same, but it appears they work in concert...
Hope to find more information out soon...
My upper GI symtoms have been the most perplexing to me, and the mention of your upper symptoms along with this diagnosis makes me wonder if it isn't a possibility for me. I wonder if the Eosinophilic Center in Cinci still has my slides and whether they can stain for this.
FWIW, Gastrocrom is a frequently prescribed drug for Eosinophilic Esophagitis/Gastroenteritis. From my EG yahoogroup, it seems that quite a few folks are on it. Most have reported success in their upper GI symptoms.
I feel like I have a very 'grippy' gut with loads of gas that is unable to be expelled.
Both bloodwork (taken serially for nearly a year) and endoscopy revealed large numbers of eosinophils in my esophagus & stomach. I know that eosinophils and mast cells are not the same, but it appears they work in concert...
Hope to find more information out soon...
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
-
faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Kimberly,
You are right, eisonophils and mast cells are not the same, but in some research I've seen mast cells are also implicated in eisonpohil disorders. You might google both of them together and see if you come up with any of the studies. You could ask your doctor to check your serum tryptase level (a good marker for mast cells) to see if its elevated. If it is, then you might want to take a mast cell stabilizer: gastrocrom or ketotifen. Gastrocrom helps most the GI symptoms, but also some other symptoms. Ketotifen helps systemically and is a good antihistamine too. You have to order it from Canada though. Glad my blog helped a bit.
Good luck! Faith
You are right, eisonophils and mast cells are not the same, but in some research I've seen mast cells are also implicated in eisonpohil disorders. You might google both of them together and see if you come up with any of the studies. You could ask your doctor to check your serum tryptase level (a good marker for mast cells) to see if its elevated. If it is, then you might want to take a mast cell stabilizer: gastrocrom or ketotifen. Gastrocrom helps most the GI symptoms, but also some other symptoms. Ketotifen helps systemically and is a good antihistamine too. You have to order it from Canada though. Glad my blog helped a bit.
Good luck! Faith
Faith
LC (in remission)
LC (in remission)
Hi all,
Thanks for the inquiries and good wishes. I’m definitely feeling better than my last post. I started back on Nexium and within a few days of doing that my upper GI symptoms were much better.
I saw my GI doc this past week and overall he was pleased with how I’m doing as my symptoms are less severe/frequent now. He and I talked about my going on Gastrochrom. He was thinking about starting it next month and at the same time weaning me off the Entocort. I asked if there was a down side to my starting Gastrochrom now so we can try to get my symptoms reduced even further. (IOW, why wait?) He said he didn’t think there was a downside to that plan, but he did remind me that there is some trial and error involved in the treatment of ME since it is a relatively new diagnosis. Most of what I have read (and there isn’t much) talks about ME patients taking Gastrochrom without much mention of Entocort. I’m due to start on the Gastrochrom in the next few days and maintain the Entocort dose, at least for now.
At this point, I’m dealing with sporadic upper and lower GI symptoms. Some days are good with few symptoms and some days aren’t as good. But, I am definitely moving in the right direction. I’m also contending with an occasional allergic response (itching face, runny nose, wheezing) to certain foods. It’s very weird as I’ve always had allergies, but never in response to foods for the most part. As I’ve said before I’m suspicious this is also part of the mast cell issue, although this type of response is not mentioned in ME literature. (Perhaps the allergic symptoms are just a coincidence.) Either way, I keep Benadryl and an Epi-pen with me now at the doctor’s suggestion. I’ll be interested to see if the allergy symptoms calm down once I start the Gastrochrom.
Looking back, I’m so much better off now than I was a year ago when I was always sick and simply did not know why. (I'm so grateful for the thoroughness of my GI doc who sent the biopsy for ME. I simply can't state that enough times!) I’m confident that in time we will get all the meds figured out and I’ll be fully on the road to recovery. For now it’s Entocort, Nexium, Zyrtec, Singulair and Xantac as needed with Gastrochrom to begin within the next few days. Hopefully, we are on the right track! I’ll keep you posted.
Thanks again for asking about my progress...I appreciate the support.
Be well,
Julie
P.S. If you are at all suspicious that ME may be involved in your particular situation, by all means talk to your doctor about it. My GI doc tells me (and Tex suggested the same) that not that many docs even know to test for ME, so you may be introducing a new condition to him/her. Arm yourself with information and then ask your doc to screen you for the condition, as it is always best to do a "rule in or rule out".
Thanks for the inquiries and good wishes. I’m definitely feeling better than my last post. I started back on Nexium and within a few days of doing that my upper GI symptoms were much better.
I saw my GI doc this past week and overall he was pleased with how I’m doing as my symptoms are less severe/frequent now. He and I talked about my going on Gastrochrom. He was thinking about starting it next month and at the same time weaning me off the Entocort. I asked if there was a down side to my starting Gastrochrom now so we can try to get my symptoms reduced even further. (IOW, why wait?) He said he didn’t think there was a downside to that plan, but he did remind me that there is some trial and error involved in the treatment of ME since it is a relatively new diagnosis. Most of what I have read (and there isn’t much) talks about ME patients taking Gastrochrom without much mention of Entocort. I’m due to start on the Gastrochrom in the next few days and maintain the Entocort dose, at least for now.
At this point, I’m dealing with sporadic upper and lower GI symptoms. Some days are good with few symptoms and some days aren’t as good. But, I am definitely moving in the right direction. I’m also contending with an occasional allergic response (itching face, runny nose, wheezing) to certain foods. It’s very weird as I’ve always had allergies, but never in response to foods for the most part. As I’ve said before I’m suspicious this is also part of the mast cell issue, although this type of response is not mentioned in ME literature. (Perhaps the allergic symptoms are just a coincidence.) Either way, I keep Benadryl and an Epi-pen with me now at the doctor’s suggestion. I’ll be interested to see if the allergy symptoms calm down once I start the Gastrochrom.
Looking back, I’m so much better off now than I was a year ago when I was always sick and simply did not know why. (I'm so grateful for the thoroughness of my GI doc who sent the biopsy for ME. I simply can't state that enough times!) I’m confident that in time we will get all the meds figured out and I’ll be fully on the road to recovery. For now it’s Entocort, Nexium, Zyrtec, Singulair and Xantac as needed with Gastrochrom to begin within the next few days. Hopefully, we are on the right track! I’ll keep you posted.
Thanks again for asking about my progress...I appreciate the support.
Be well,
Julie
P.S. If you are at all suspicious that ME may be involved in your particular situation, by all means talk to your doctor about it. My GI doc tells me (and Tex suggested the same) that not that many docs even know to test for ME, so you may be introducing a new condition to him/her. Arm yourself with information and then ask your doc to screen you for the condition, as it is always best to do a "rule in or rule out".
Julie,
Have you or your doctor considered that you could have mast cell activation syndrome, rather than ME? Do you notice that you have triggers other than food? I doubt that your allergies are a coincidence. I beleive I have a mast cell issue and have discovered that I am sometimes triggered by things other than food, like PMS and certain smells (bleach, strong perfume, strong chemical smells). Symtoms wax and wane with MCAS.
I agree with Faith that you should have your tryptase level checked. I recently consulted with a gastroenterologist from Brigham and Women's Hospital in Boston (Norton Greenberger - he is very knowledgeable about mast cell disorders) and he ordered 4 tests (urine histamine and prostaglandin D2 and serum tryptase and IgE). I have many of the same symptoms as you, but have also experienced a very serious anaphylactoid reaction to a vaccine. I also now carry an EpiPen.
One thing I have found very helpful is Mediator Release Testing for food sensitivities. I was able to identify my food triggers and it took out the guesswork. My upper GI symptoms that were triggered by food are gone and I now have more formed stools, albeit not always perfect, but a definite improvement. I beleive it really helped to calm down my immune system.
I am curious - what dose of zyrtec and zantac are you taking?
Mary Beth
Have you or your doctor considered that you could have mast cell activation syndrome, rather than ME? Do you notice that you have triggers other than food? I doubt that your allergies are a coincidence. I beleive I have a mast cell issue and have discovered that I am sometimes triggered by things other than food, like PMS and certain smells (bleach, strong perfume, strong chemical smells). Symtoms wax and wane with MCAS.
I agree with Faith that you should have your tryptase level checked. I recently consulted with a gastroenterologist from Brigham and Women's Hospital in Boston (Norton Greenberger - he is very knowledgeable about mast cell disorders) and he ordered 4 tests (urine histamine and prostaglandin D2 and serum tryptase and IgE). I have many of the same symptoms as you, but have also experienced a very serious anaphylactoid reaction to a vaccine. I also now carry an EpiPen.
One thing I have found very helpful is Mediator Release Testing for food sensitivities. I was able to identify my food triggers and it took out the guesswork. My upper GI symptoms that were triggered by food are gone and I now have more formed stools, albeit not always perfect, but a definite improvement. I beleive it really helped to calm down my immune system.
I am curious - what dose of zyrtec and zantac are you taking?
Mary Beth