Newly Diagnosed with Mastocytic Entercolitis

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Mendy
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Newly Diagnosed with Mastocytic Entercolitis

Post by Mendy »

Hello everyone:) First off a little about my story. I had symptoms back in 2008, but the first GI doc told me it was most likely IBS and sent me on my way. So this February, suddenly I was sicker than I have ever been in my life. I went to the ER, and was told it was a kidney infection. (Both times I have been sick, I have had kidney infections..not sure what that is about..) I lost my appetite, and would gag on food. I stayed in the bathroom having the worst D of my life. Nothing was making me better. I ended up in bed and barely could make it out it. My gums started bleeding for no reason, and I decided it was time to see another GI. After another trip to the ER where a CT scan showed my colon was inflamed, I went to the second GI. Flash forward to my colonoscopy and 30 biopsies later, I was diagnosed with Mastocytic Enterocolitis. Since my colonoscopy my symptoms have been better. The only symptom I still have is the terrible burning in my upper and inner thighs. Does anyone else have this symptom? I have had no luck finding anything out about this disease and its list of complete symptoms.
I have also seen an allergist, and haven't quite figured out what my triggers are, so I stay very scared of repeating these horrible past few months of my life. Any information would be appreciated, and I look forward to getting to know all of you:)
Mendy
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tex
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Post by tex »

Hi Mendy,

Welcome to our internet family. Useful information on ME is indeed scarce, but we are fortunate to have several members who either have ME, or have major mast cell issues and so they have had to devote a lot of time to researching and learning about the condition, and how to control the symptoms. You are fortunate to have been able to get a diagnosis relatively quickly, because most GI specialists know precious little about ME, and even less about treating it successfully.

I'll leave it to the experts to respond to your concerns about the details of treating ME. Hopefully they'll notice your post soon, and respond. Are you taking Gastrocrom, (cromolyn sodium), or any other med?

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

Tex (Wayne)
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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.
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Post by sarkin »

Mendy,

Welcome - it must have been a terrifying roller coaster getting here. I believe that mast cells are a factor in my experience, but not in the same intense way that you have experienced. You are definitely in the right place.

I put these 2 links in my 'things to think about' file for my next doctor conversation:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/
http://tmsforac.ipower.com/dev/wp-conte ... thesia.pdf
http://www.urticaria.thunderworksinc.co ... tamine.htm

The first is an article about mast cells in GI disease from 2010, and the second is from the mastocytosis society, regarding risks of anesthesia for patients with mast cell disorders - which you might want to keep in a safe place (and I hope you never need it) - there's more info on their web site, as well.

I think you'll get your best help from those that Tex mentioned who are members here. Meantime, again - welcome, and I hope you already feel less alone and growing in confidence that you can get hold of your health and feel better. One of those experts, Mary Beth, has posted this link of foods that are low in histamine, and therefore less likely to provoke a response - http://www.urticaria.thunderworksinc.co ... tamine.htm - you may recognize some of your suspect foods on their list, but everyone is different.

All my best,

Sara
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Post by mbeezie »

Mendy,

Welcome! We are here to help you answer questions.

I had a long journey figuring out mast cell issues. My issues go beyond my gut and I'v ehad symptoms beyond diarrhea. Are all of your issues confined to your gut? If your doctor hasn't done so he should do some labs (serum tryptase, urine methylhistamine and prostaglandin D2). It's a good idea to see if there are any abnormalities. Trust me, doctors are quite unfmailiar with mast cell disorders, so you may very well have to do some homework on your own.

The rarest and most serious form of the disease is called mastocytosis. Another version of mast cell disease is called mast cell activation disorder (ME probably falls under this category, however neither MC nor MCAD are official diagnoses currently). You could read about these on www.tmsforacure.org. The diet that is needed for mast cell disorders that is low histamine and Sara gave you the link for that. In addition you may need to avoid gluten. Do you have reactions to drugs or other things? Some of us have a variety of triggers.

We have discussed mast cells many times on this forum. You can use the search option at the top of the page to read through some past threads. We'll try to answer any questions you have.

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Post by Zizzle »

Welcome Mendy!
I don't know if i have mast cell issues, but i get severe itching and burning of my inner and upper thighs when I exercise, particularly outdoors. I also develop a red, burning face and little fluid-filled hives on my torso when I sweat during exercise. I joke that I'm allergic to my own sweat, but it really sucks!! However I can perspire on a hot day and feel fine. It's the combination of physical exertion, increased heart rate snd sweating that causes the reaction.

Do your thighs burn all the time?
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Mendy
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Post by Mendy »

I am supposed to take Zyrtec and Zantac to control symptoms. So I have a type 1 and type 2 antihistamine. I have had so many other symptoms...fatigue, pain, etc. I've lost 30 lbs with this flare. I have always been super sensitive to most medications. I've always had tons of kidney and bladder infections, and stomach pain that doctors never could figure out.

The thighs seem to be worse on some days over others, but seems to be pretty constant. My inner ears constantly itch and I seem to always be itchy all over.

All my allergy testing came back and showed I wasn't allergic to most food. I didn't even have a gluten intolerance. I actually was hoping to get some answers from the allergy testing, but no such luck.

I am thankful for a diagnosis, but have nobody to ask questions too. My GI doctor is very nice, but didn't recommend me to come back until I have another full flare...so I just suffer.

I appreciate all your wonderful responses. They mean so much to me! I will be reading all the information you guys have shared.

If you have any other information, please let me know.:)
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Post by mbeezie »

Mendy,

I'm not surprised by your negative test results for food allergies. Many of us have had that experience. The tests that we find to be most useful (enterolab and MRT) are rarely ordered by doctors.

If zyrtec/zantac isn't sufficiently working there is a drug called gastrocrom that is used to stabilize mast cells. That seems to be the next logical step for you. There is also a product called Histame, which you can order on the internet. It is an enzyme supplement to help break down histamine. Some with mast cells problems take quercetin - it's a natural mast cell stabilizer but is not tolerated by some, especially those with aspirin/salicylate sensitivity.

When mast cells are active in one part of the body it may be wise to determine if they are active in other parts of the body. You describe some very common mast cell symptoms. I wonder if your kidney/bladder infections aren't related to mast cells. There are many mast cells in that area and actually interstitial cystits (what you probabaly actually had) is most likely a form of mast cell disorder according to some mast cell researchers. Itching is also a mast cell sign. Visit the MAstocytosis Society website for a more complete listing of symptoms.

Where are you located? You could always try to visit with a mast cell specialist. While your GI doctor is nice, he basically signed off of the case and is only wanting to deal with flares, not all of your symptoms. And it may be that he just doesn't know what to do. I can give you some names if you are interested.

I strongly urge you to go on the low histamine diet. It really helps me with GI issues.

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Post by jme22 »

Hi Mendy,

Welcome to the PP family! The advice and support you can get here is unparalleled. I hope you'll find it helpful.

I was diagnosed with ME in April of 2009. I had been having severe nausea, bloating, abdominal pain and D, alternating with C. Fortunately, my doctor was well versed in ME so he performed a biopsy during my colonoscopy and discovered the ME .

After my diagnosis I was put on the standard H1/H2 treatment. I also take nexium and singulair for the ME as well. I can say that my GI symptoms have improved, but are not resolved. I still have flares and go through periods where I am very symptomatic. Typically I go on a course of Entocort for these flares. I also take Align, a probiotic, and it has been extremely helpful. I tried a round of Gastrocrom but didn't respond well to it. I also have given up gluten and soy (all legumes) as it became clear they were making my symptoms worse.

Over the past two years I have had other issues arise. I became iron deficient, anemic, vitamin D deficient and was diagnosed with a malabsorbtion disorder. I mention this because there can be some further complications associated with ME, so be sure to find a good gastro and have regular follow ups.

Here are some links for articles on ME:

http://www.thefooddoc.com/mastocytosis_enterocolitis

http://thefooddoc.blogspot.com/2008/02/ ... nosis.html


There isn't a lot out there on ME, as you mentioned. Many consider ME to be a symptom of mast cell activation disorder which may be why the information is limited.

Let me know if you have any questions. Between Mary Beth and myself we have a fair amount of working knowledge on mast cell disorders, so don't hesitate to ask any questions. Oh and as Mary Beth mentioned, use the search engine for ME or mast cells and you will get a wealth of information from past postings on the subject.

Welcome aboard!

Julie
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Mendy
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Post by Mendy »

I am located in Kentucky..in Bowling Green to be exact. Not sure if there are any specialist near me...:(



Thank you all for the knowledge. I have already been diagnosed with a vitamin D defeciency, when I was tested my level was 6!!!! I'm quite certain I have some malabsorbtion due to the 30 lb weight loss and all the fatigue and other symptoms. I seem to hurt all over at times when I'm my worst. This upper thigh thing is very painful though. It keeps me down for sure. I also had to resign my job (I worked for a foster care agency doing Human Resource and Business Management) due to being so ill:(

I'm wondering if the leg thing isn't a vitamin defeciency of some sort..but who knows. It's a horrible burning pain almost like my veins are burning.

Do any of you experience shortness of breath?? This started in 2008 when I had my first attack of this, and then I got diagnosed with a Thyroid problem. I am on Levothyroxine due to that too. Just curious!


THANK YOU ALL for your responses. I am reading every link you guys posted and am going to read up on the low histamine diet!

You guys are the best:)!!!
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Post by mbeezie »

Mendy,

I have had shortness of breath/feeling like I can't take a deep breath. I would also get chest pain. My symptoms seem to move around. Currently I am experiencing nausea, headache, lightheaded/dizziness, runny nose, whereas in the past I have experienced GI and bladder symptoms. I've never experienced the burning sesation you have but I have heard of others that do.

Boston is the best place to go because many of the mast cell researchers are there (Dr. Mariana Castells and Dr. Cem Akin run the mast cell center at Brigham and Women's - that's where I went). Mayo Clinic also has some some specialists. If you go on the TMS website there are some doctors listed there I think. You might be able to call Brigham and Womens and see if they know someone in your area. I live in Texas and they referred me to a doctor in Austin for follow up. You may need to do a little homework, but I think you need to pursue someone who knows something about your disorder - you have too many symptoms to just say it's ME. Chances are you have MCAD. There are some You Tube videos on mast cell activation that you may want to watch - much of it applies to mastocytosis but they do talk about MCAD too.

Since you've also had drug reactions in the past you need to educate yourself as quite a few meds can precipitate a problem. Many pain meds, anesthesia, beta blockers, or preservatives in medications etc That list is also on the TMS website.

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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tex
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Post by tex »

Mendy,

I, too, have shortness of breath, and occasional difficulty in drawing a deep breath, and those symptoms started just before my hypothyroidism was diagnosed. Treatment for hypothyroidism does not completely eliminate the symptoms, (in my case). Magnesium supplementation helps, but does not totally resolve the problem.

Regarding the pain that you describe - malabsorption quickly leads to vitamin deficiencies, especially vitamin D and the "B" vitamins. Most of us become low on vitamin B-12, especially, and vitamin B-12 is associated with pain, and other neurological issues. Along with vitamin B-12, vitamin B-9, (folic acid) is also important, because an adequate supply of it is necessary for the body to utilize B-12, and adequate folic acid is important for immune system health.

I take a prescription vitamin product called Metanx, which is a combination of high doses of B-12, B-9, and B-6). The product is prescribed to diabetics who have peripheral neuropathy. I don't have diabetes, but I do have peripheral neuropathy, which I attribute to many years of damage by gluten-sensitivity that occurred before I became symptomatic, and before I figured out that I was gluten-sensitive. Anyway, I've been taking the Metanx for almost 2 years now, and this past year, my hay fever symptoms have almost totally disappeared. So, I have to conclude that folic acid has a powerful effect on the immune system - IOW, it appears to help suppress mast cell degranulation. Folic acid is also important to DNA synthesis and cell reproduction.

What I'm suggesting, is that you may need to supplement with a combination of vitamin B-12 and folic acid. For someone with malabsorption issues, the easiest way to increase B-12 uptake, is to use sublingual lozenges, (designed to dissolve under the tongue), combined with a proportional amount of folic acid in the same lozenge. Vitamins delivered in sublingual lozenges are absorbed directly into the bloodstream, thus by passing the malabsorption issue in the intestine. Lozenges of this type are available with 1000 mcg of B-12 plus 400 mcg of folic acid, for example. Note some findings of a research project that explored the connection between folic acid and allergies and asthma:
Specific Study Findings

- Those with the lowest folate levels had 16% higher risk of having asthma than people with the highest folate levels.
- People with the lowest folate levels had 31% higher risk of atopy (allergic symptoms) than people with the highest folate levels.
- People with the lowest folate levels (below 8 nanograms per millilitre) had 40% higher risk of wheezing than people with the highest folate levels (above 18 ng/ml).
- People with the lowest folate levels had a 30% higher risk than those with the highest folate levels of having elevated IgE antibodies, markers of allergy predisposition.

Mary Beth and Julie,

You may be interested in this connection as well. Here are a couple of links:

http://www.ei-resource.org/news/allergy ... nd-asthma/

http://www.rodale.com/folic-acid-and-al ... and-asthma

I'm not sure how the following thoughts tie in with this issue, but I have a hunch that they do. I haven't reached any conclusions about this concept, but I'll throw it out here, and maybe someone else will see some implications and connections that might be illuminating:

Regarding the research article at the link below, consider that heparin is a naturally-occurring anticoagulant, produced by basophils and mast cells, which acts as an anticoagulant, to prevent the formation of clots, and the growth or extension of existing clots, in the bloodstream. My observation, (and one that I believe is important, in this issue), is the fact that methotrexate is a folic acid analogue, that interrupts the synthesis of DNA and RNA. Methotrexate, as we all know, is a powerful immune system suppressant, used in the treatment of cancer, and many/most types of autoimmune diseases. It's primary claim to fame, is due to the fact that it works by inhibiting the metabolism of folic acid, (IOW, it replaces most/all of folic acid's immune system functions). As I said, I'm not sure what the implications of this observation are, (because in stark contrast to the action of folic acid, methotrexate inhibits the synthesis of DNA and RNA, and cell production, (especially rapid cell production, as in cancer), whereas folic acid is essential for the production of DNA, RNA, and cell production). :shrug:

http://www.sciencedirect.com/science/ar ... 5202010638

Tex
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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.
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mbeezie
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Post by mbeezie »

Interesting Tex. I may need to modify my supplement regimen.

Mary Beth
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