Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> New here and looking for help http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1389131079 Message started by livewithhope on 01/07/14 at 09:44:39

Title: New here and looking for help
Post by livewithhope on 01/07/14 at 09:44:39

I'm new here and wanted to share my story. I am a 46 year old female. In March of 2013 I thought I was getting a uti, was tested and no infection was present. Over the next several days my symptoms got so bad I went to the ER and was given a ct scan. It showed a uterine fibroid. Within a few weeks I had a hysterectomy. The doctors thought my symptoms were due to the fibroid and there was some concern of whether my ovary was involved. So, while they were in there we decided that I might as well have my uterus removed. The pathologists found mast cells in the fibroid. I was sent to an oncologist who did a bone marrow biopsy which was normal. He said he was gong to be cautious with me and have me return in 6 months. During those 6 months I developed heart burn and a burning sensation in my stomach. I have also continued to have issues with my bladder that seem to be related to what I eat and I have noticed an increase in my heart rate with some foods. I have done some researching and put myself on a low histamine diet. I went back to the oncologist in December for my 6 month appointment and told him of my symptoms and he told me that the mast cells were invading my organs. He gave me a prescription for gerd and said to come back in a year.

It has been a scary 10 months for me. I haven't been very happy with my doctors at all. I didn't even know that the bmb was to test me for mast cell leukemia and systemic mastocytosis. So, this is where I am at. I did a ton of research on the internet which just scared me and confused me. I live everyday afraid and I don't know what to think.

Title: Re: New here and looking for help
Post by Spartako on 01/07/14 at 16:31:27

What are your test results?

According to Dr. Larry Afrin, MD, a professor at the University of South Carolina who is one of the world’s experts on MCAS, testing should consist of the following:

1.Complete blood cell count with manual differential, comprehensive metabolic panel, and a serum magnesium level (these are usually part of a doctor’s evaluation for a patient presenting with any type of chronic illness). Coagulation studies and serum immunoglobulin levels may need to be done depending on presenting symptoms.
2.Blood tests consisting of serum tryptase and plasma histamine levels. If the tryptase is greater than 20 ng/mL, then a patient must be evaluated for systemic mastocytosis. In MCAS the tryptase, although often elevated, is almost always less than 20 mg/dL.
3.Plasma prostaglandin D2 (PGD2) and heparin levels.
4.Chilled 24 hour urine sample for PGD2 and methylhistamine.

Title: Re: New here and looking for help
Post by livewithhope on 01/08/14 at 10:07:02

Thank you for the suggestions. I did go to another oncologist for a second opinion. He asked me a lot of questions about my health. Felt my glands and scratched my skin. Said I didn't have SM. Said he wasn't sure what was wrong with my bladder or what was causing the heartburn. He didn't even feel that I needed to be seen any more. I
asked the second oncologist about trypase tests and he said they aren't reliable. In my research, I have done some reading on Interstitial Cystitis. Apparently mast cells are involved with that. Wondering how many on here have bladder issues.

Title: Re: New here and looking for help
Post by kesasur on 01/08/14 at 10:58:47

HI,

This summer (before I was diagnosed w/ MCAS) I had an "itchy/twitchy" bladder just at the end of voiding. No burning, pain, blood, or "odor" that would be consistent w/ a UTI.
Urine dips were negative...but the pain started to radiate to my kidneys, first on one side then around my back then to the other side. Serious tenderness w/ tapping on them even lightly never mind the thump they like to give them.
I ended up at the ED- and after culture they determined I had a UTI and I took levaquin for 3 days (bad choice for MCAS as it turns out..) - guess what? Next month same symptoms. Again, no UTI. and again, no uti. Sigh. Since starting Allegra and gastrochrom this has not been a problem. The naturopath I was seeing at the time said, "I hope you aren't getting a cystitis." - though again this was all pre-diagnosis. I had many a doctor/health care provider stumped.
Like you and so many others here I had to do my own research and find a doc who actually knew what this was- to get diagnosed. I suppose some would say "if you search long enough you'll find someone to tell you what you want to hear" (yes, someone said this to me....) but when the pieces fit- what are you left with.
I was commenting to my husband that in school they taught us, "when you hear hoof beats think horses, not zebras". Well, guess what? We are zebras. Sometimes the docs really need to think zebras when all else has failed... not just "it's all in your head" or "see you next year".

I hope you are able to find someone who you can relate to and trust and who can guide you wisely.

Kelley

Title: Re: New here and looking for help
Post by livewithhope on 01/08/14 at 11:48:00

It is hard and I don't have much support from family so I just keep everything to myself. I guess my big fear is that this is cancer. I try to stay off the internet as that doesn't help.

Title: Re: New here and looking for help
Post by Spartako on 01/08/14 at 15:00:05

I had almost 10 tryptase tests at 2 different labors and all where in little range. So I think they are quite accurate but do not give a clear answer what the problem is. It can either mean you have too much mast cells somewhere or they just released some tryptase. So the test should be repeated some times.
People with MCAS often do not have hightend tryptase! The other tests noted are more significant.
In my case tryptase level was never under 11 but after provocation with food at about 15. Which clearly shows that there was some ill behaviour of mast cells. But it also means that I got too many mast cells because normally tryptase should be 3-4.
I was C-Kit D816V negative and had no signs of SM in bone marrow. So I must have one of the other mutations associated with MCAS which are even less researched...

Title: Re: New here and looking for help
Post by livewithhope on 01/09/14 at 10:58:17

How many of you have issues with heartburn and stomach acid issues?

Title: Re: New here and looking for help
Post by DeborahW, Founder on 01/09/14 at 15:32:24

Hi. I'm just dropping in for a quick welcome and to give you a bit of advice. (I'm really sick right now with a respiratory virus, so don't want to be on the computer long.)

Try Zantac twice a day and see if that helps. Zantac 150 mg or 300 mg twice a day is very standard for our mast cell docs to put us on for GI troubles. It really helps many of us! Also, other standard mast cell antihistamines are Allegra (180 mg) and Zyrtec (10 mg). For example I take Zantac and Allegra in the morning and Zantac and Zyrtec in the late afternoon. These meds really keep my mast cells under control!

Deborah

Title: Re: New here and looking for help
Post by DeborahW, Founder on 01/09/14 at 15:42:09

Forgot to mention that you shouldn't worry about Cancer. Mast cell disease is NOT Cancer. It is an annoying and sometimes debilitating disease, but that is it. Your oncologists are convinced that you don't have Cancer, so breathe a sigh of relief and focus on being your own investigator to figuring out if you have a mast cell disorder. If you tell us where you live (country and state), then we can make recommendations of the real mast cell specialists who can help you.

Title: Re: New here and looking for help
Post by livewithhope on 01/10/14 at 13:24:30

Thank you for all of your responses. I am from Wisconsin so if any one knows of any doctors, please let me know.

Title: Re: New here and looking for help
Post by DeborahW, Founder on 01/10/14 at 14:36:19

Most of us end up having to travel to one of the few actual mast cell specialists in the country. I always recommend going to see Dr. Cem Akin or Dr. Marianna Castells at Brigham and Young Hospital in Boston. They both started the Center for Mast Cell Disorders, and they are the 2 leading researchers/specialists in the field. I am a patient of Dr. Akin, and he totally improved my life with diagnosing me and putting me on the right meds to stabilize me and allow to enjoy day to day life with my kiddos. (I don't live anywhere near Boston either, but it's worth the trip to get a good gameplan of what to do.)

Title: Re: New here and looking for help
Post by livewithhope on 01/29/14 at 11:22:34

I have a new doctor who is reviewing all of my medical records and will be looking at the slides from my surgery and bm biopsy. He also wants me to have the tryptase test. After they review everything they will let me know what the next step is.

Title: Re: New here and looking for help
Post by Joan on 01/29/14 at 19:53:20

Mast cell disorders are often diagnosed after everything worse is ruled out. That is why you were tested for cancers and other disorders/diseases. Some symptoms can be the same, and the testing rules in or out other possibilities.

It's not unusual to have mast cells in organs and in the GI tract, including the stomach and even the esophagus. They appear in places where there is inflammation. In many patients anti-inflammatory medicines are helpful in addition to the H1 and H2 antihistamines that Deb described. Some people do well on aspirin or ibuprofen or naproxen. Atarax (hydroxyzine) can be helpful for bladder problems, such as cystitis (which isn't necessarily an infection. It can be solely inflammation.)

Certain foods can aggravate cystitis, which you've probably figured out already. But also, high histamine foods and other triggers can cause indigestion, reflux, and hyper-acidity. Everyone seems to have at least slightly different triggers, and figuring out what those are will be key to recovery. If you keep a food and symptom diary, you might be able to figure out what's irritating your systems.

Good luck, and keep us posted on how you're doing. Most of all, try to lower your stress level. That seems to be a universal trigger for mast cell symptoms.

Title: Re: New here and looking for help
Post by livewithhope on 02/01/14 at 07:12:48

Thank you for the info. I went to the lab and had blood drawn for the tryptase. I guess I will know those results this next week.

I do try to follow a low histamine diet which has helped a lot. I think I'm sensitive to preservatives also. Usually heart burn starts in the morning after I've been up for about 1/2 hour whether I eat or not. I started taking a 180 mg Allegra along with the omeprazole in the morning and then I take benadryl before bed.

Title: Re: New here and looking for help
Post by livewithhope on 02/07/14 at 10:05:21

My tryptase level was 11 which the doctor considered normal. He reviewed all my records and said the amount of mast cells in the fibroid really wasn't that many. He said it's not impossible but he said nothing at this point would lead him to believe that I have SM. Thought I should have a GI scope and biopsy to see if there are any mast cells there. Again, he doesn't think there will be but he said I should have it looked at to see what is causing my daily heartburn.

Title: Re: New here and looking for help
Post by Joan on 02/07/14 at 20:50:15

I didn't see an H2 histamine blocker, such as Zantac (ranitidine) or Pepcid (famotidine) on your list of meds. If you are having histamine releases in your stomach, these medicines can help a lot. Histamine stimulates acid production in the GI system. Some people take up to 150-300 mg Zantac, twice a day or 10-20 mg Pepcid, twice a day.

Using a longer acting antihistamine, such as Zyrtec, might help you feel better in the mornings. 10 mg. is often the dose that's helpful.

Of course, as with any Rx or over the counter meds, do run these by your
doctor before starting anything new. Also, only start one new medicine at a time, one every few days.

Hope one of those works. One other thought... If the docs want you to have a colonoscopy or an oral prep before testing, be sure to talk this over with a mast cell doctor before the tests.

Title: Re: New here and looking for help
Post by livewithhope on 02/08/14 at 06:37:46

Thank you for your response. My doctor did prescribe 20mg omeprazole twice daily. I take that and an allegra in the morning and benedryl at bedtime. Usually 1/2 hour after I get up in the morning the heartburn starts and lasts until late afternoon. I try follow a low histamine diet so I'm not sure what is the trigger. I'm considering eating just a few safe foods for awhile to see if I can find out what is causing this.

This started about 11 months ago. Bladder issues and within a few weeks noticed an increased heart rate with high histamine foods. Then a few weeks later the heartburn started.

I have colonoscopies every 3 years due to family history and have never had a problem with the prep. A few months ago I had one and with every glass of prep I drank my nose got very stuffy. That had never happen in prior times.

If mast cells are found in my upper GI area does that mean that I have SM?

Title: Re: New here and looking for help
Post by Spartako on 02/08/14 at 18:21:32

A tryptase level of 11 is not normal but with systemic mastocytosis it is much higher which means you most likely have MCAS.
Healthy people have tryptase levels between 3 and 5.

CM is diagnosed by the presence of typical skin lesions and a positive skin biopsy demonstrating characteristic clusters of mast cells. The preferred method of diagnosing is via bone marrow biopsy. The World Health Organization (WHO) has established criteria for diagnosing SM, restated below:

Major Criterion:
Multifocal dense infiltrates of mast cells (>15 in aggregate) in tryptase-stained biopsy sections of the bone marrow or of another extracutaneous organ.

Minor Criterion:
1. In biopsy of bone marrow or other extracutaneous organ(s), more than 25% of the mast cells show abnormal morphology (that is, are atypical mast cell type I or are spindle-shaped) in multifocal lesions in histological examination.
2. Detection of a point mutation at codon 816 in the KIT receptor gene. This may be found in bone marrow, blood or other internal organ.
3. KIT-positive mast cells in bone marrow, blood, or other internal organs are found to express CD2 and/or CD25.
4. Serum total tryptase level persistently greater than 20 ng/mL. This criterion cannot be used if the patient has a clonal non-mast cell associated hematological disorder.

The presence of one major and one minor criteria or three minor criteria constitute the diagnosis of systemic mastocytosis.
http://tmsforacure.org/patients/mastocytosis_explained_2.php

Title: Re: New here and looking for help
Post by livewithhope on 02/09/14 at 13:17:25

Is mcas a progressive disease? Do symptoms get worse or new symptoms appear? Can this become SM? This is all so confusing but I think I read that mast cells create stomach acid. Is it possible that I have mast cells in my bladder and that is what is causing the heartburn?

Title: Re: New here and looking for help
Post by Joan on 02/09/14 at 16:52:11

The mast cells in your bladder would not be causing your heartburn, but mast cells in the stomach can. Mast cells produce histamine which stimulates the production of hydrochloric acid by the cells in the lining of the stomach. Too much histamine, too much acid.

At this point there's no reason to worry about SM. there is good reason to stay strictly on a low histamine diet for a while and see if you can figure out if and which foods are triggering your symptoms.

in a prior post, I mentioned that H2 can help with hyperacidity. Ask your doctor about that.

Title: Re: New here and looking for help
Post by livewithhope on 02/10/14 at 14:00:32

So having mast cells in your stomach isn't SM? Is it common to have mast cells in the stomach? I will check into H2 meds.

Title: Re: New here and looking for help
Post by Joan on 02/10/14 at 17:58:02

No, it's not necessarily SM. for example, there is another disorder, Mastocytic Enterocolitis, that can cause lots of GI symptoms. It's treated with probiotics, H2 antihistamines, and sometimes with bromelain. If you look it up and think that's what you have, there are two experts, one in Colorado and one in Oklahoma City, who can treat it.

Title: Re: New here and looking for help
Post by Spartako on 02/10/14 at 23:55:46

Mastocytic Enterocolitis is just (another) form of MCAS where more mast cells are found as usual. I do not believe that this biopsy is helpful in diagnosis, but in research it is.
Everyone has mast cells in the stomach. The problem are mutated mast cells and clusters of mutated mast cells. Mutated mast cells react easier and stronger to triggers and when they are in GI Tract you will have problems with food triggers.

MCAS is progressive as mutated mast cells get more and more. I had GI symptoms my whole life but I didn't know where the problems came from. In my 20ies I got headaches, muscle pain and crushing fatigue. I needed some time to find out which triggers to avoid and started to take ketotifen, singulair, desloratadine, milnacipran (helps for the energy and depression) which helped a little. But it still progresses...

In later years of life it becomes less burdening because mast cells die after about 10 years and less are produced. I also have hope in science and new meds like Tyrosine-kinase inhibitors. http://en.wikipedia.org/wiki/Tyrosine-kinase_inhibitor

SM may develop from MCAS but it is rare. It depends on the mutation. It is more likely with C-Kit D816V mutation. DNA sequencing will bring some more insight in the coming years.

You may want to read some scientific papers to get more first hand infos:
http://mastopedia.wordpress.com/ In my opinion it has too much articles
http://www.ncbi.nlm.nih.gov/pubmed
http://www.ncbi.nlm.nih.gov/pubmed/24192267
http://www.ncbi.nlm.nih.gov/pubmed/24098785
http://www.ncbi.nlm.nih.gov/pubmed/21418662

Afrin LB and Molderings GJ are the front-line in research of new pharmaceuticals for MCAS.

Title: Re: New here and looking for help
Post by Joan on 02/23/14 at 15:39:56

Everyone has mast cells throughout the GI tract, but some people have an over-proliferation of them, and that can be diagnosed as M.E. I asked Dr. Lewey, who has treated over 500 patients with Mastocytic Enterocolitis, and he feels M.E. will eventually be classified along with other mast cell disorders, but as of now is considered a separate, rare disorder. M.E. can occur due to an over-proliferation of mutated or non-mutated mast cells.

An over-proliferation of any type of mast cell can cause severe symptoms, because too many mediators for the body to manage are released. The value of biopsies, done during colonoscopies and endoscopic procedures, is to diagnose the over-proliferation of mast cells in the GI tract (M.E.), which is then treated with a protocol of diet, supplements, and medications. Last year Dr. Lewey said he has an 80% cure rate with his protocol on patients with M.E. So testing is important in order for people with M.E. to have a chance to be cured.

If there are many mast cells, clusters of mast cells, or malformed mast cells, then a tryptase test is done and the samples can be evaluated for gene defects that would rule in or out other diagnoses, such as SM. While symptoms in SM patients may be helped by the M.E. protocol, it will not cure SM.

Regarding MCAS, some experts feel there are abnormal genes involved in it, but the mutations have not yet been found. Others feel that it involves mast cells that malfunction and release mediators inappropriately for unknown reasons. Its diagnosis is based on patient symptoms, temporarily elevated tryptase and/or other mast cell mediators, and symptom response to antihistamines and other medications.

There are differing opinions regarding progression of MCAS. Some doctors feel it's a precursor to SM, and that those whose disease progresses were always SM. Others feel it isn't progressive and usually can be controlled effectively by medications, diet, and lifestyle modifications.

In a recent publication (to which Bruce recently posted a link), Dr. Afrin says that mast cells live from several months to several years, but he is writing about MCAS. In SM mast cells live a lot longer than normal mast cells. Because the mutated mast cells reproduce faster than they die off, the total numbers increase over time.

Spartako, I couldn't find anything written about mast cells dying after about 10 years and fewer being produced as we get older. Do you have a reference I can read? I'd like to know more about that aspect of SM. I always thought proliferation continues throughout life, but at a slower or faster pace depending on how aggressive the SM is.

Title: Re: New here and looking for help
Post by Terry on 02/25/14 at 01:23:15

Hello,

You mentioned your doctor thought you may have GERD and that may explain your stomach problems. I was also told that about four years ago but I recently was diagnosed with eosinophilic esophagitis by a mast cell specialist. Getting an endoscopy and biopsies of your GI tract is a good idea so long as the doctor knows what to look for. Eosinophilic esophagitis also produces an elevated level of mast cells along with the elevated eosinophils. Like MCAS, this is also a relatively newly discovered disorder so many doctors are not familiar with it.

Title: Re: New here and looking for help
Post by Joan on 03/01/14 at 20:28:38

What treatment is being recommended for the E.E., if you don't mind sharing that?

Title: Re: New here and looking for help
Post by sarahkay1111 on 03/02/14 at 12:06:37

Hi Joan,

I have Eosinophilic Esophagitis too, and my doctor at Mayo has me on Zantac 150mg 3-4 times/day, depending on symptoms, and a Flovent inhaler that I swallow instead of inhaling (decreases inflammation in the throat). He wanted me on a PPI, but I had reactions to all of the ones I tried, and they caused severe stomach pain for me, so the Zantac works in place of that. They are trialing Singulair for EoE, and I read somewhere that cromolyn/ketotifen could possibly treat it as well.

Title: Re: New here and looking for help
Post by livewithhope on 06/11/14 at 15:00:46

I had a GI scope with biopsy for mast cells and all was normal. They didn't find any reason for the heartburn. One of the doctors I saw said that I could have mast cells somewhere in my body and that could be triggering the heartburn. I tried the zantac and prescription meds but nothing takes away the heartburn. I'm just careful of what I eat. I do know that when I don't follow the low histamine diet my bladder bothers me and the heartburn and belly burn gets worse.

Title: Re: New here and looking for help
Post by Joan on 06/11/14 at 17:31:04

You can have a normal number of mast cells and mast cells that appear normal under a microscope, but which still function abnormally. Those abnormally functioning mast cells tend to release mediators inappropriately in reaction to things that wouldn't affect a normal mast cell. The release of mediators triggers a reaction. So, the heartburn could still be caused by mast cells behaving inappropriately.

I don't know if this will work for you, but I find that liquid Benadryl is helpful to me when I have indigestion. It's counter-intuitive, since Benadryl primarily affects H1 receptors, but for me, it helps. If I'm flaring or reacting to something, I'll sometimes take 40 mg. of Pepcid. People can also take up to 300 mg. Zantac. It helps.

A friend of mine's daughter recently saw a pediatric GI specialist who is familiar with mast cell disorders. The doctor recommended that she try taking budesonide orally. It's a mild steroid that is sometimes used for Crohn's patients. Has anyone else been prescribed a steroid for stomach issues?