#mastocytic enterocolitis

[365daysofabby]

July 9th, 2019

If my body’s going to decide to stop working, I’m still gonna try to be a cute non-working human

[abbyspieces-blog]

The Allergy Chronicles: It Begins

I’ve decided to start something. It’s mainly for myself, but also for those that are in the same position as I am, or are just curious, or for those of you that are genuinely concerned with the goings on in my life. For those of you who follow me and are sure to check up on the updates of my health and my life, you know that I have had some very odd problems throughout the past two years, mainly dealing with my allergies.

For those of you who are just beginning with me on this written journey, you need to know that I have always been allergic to peanuts, peanut butter, anything dealing with peanuts in general. This is how I always start off the endless explanation that is my life story. However, one night during my senior year of high school, everything changed drastically. And for the worse. Ironically enough it was on Homecoming night when I was out to eat with some friends. Long story short, I had an anaphylactic type of reaction to some pistachios - something I was never allergic to to begin with. From that night on, it was as if someone had flipped a light switch. I begin reacting almost every single night to everything. I was in and out of the hospital with IV’s, breathing masks, and multiple epi-pen stab wounds decorating my legs. After endless tests and doctor visits, we concluded that my allergies were through the roof. Along with peanuts, we were able to realize that I had somehow developed an anaphylacitc type of response to the following foods.

Peanuts (obviously)

Soy

Peas

Capers

Red Peppers

Dill

Ragweed (which is melons, bananas, honeydew, cantaloupe, watermelons, zucchini, sunflower seeds, chamomile tea, echinacea)

Pears

Peaches

Celery

Artichokes

Almonds

Hazelnuts

Pistachios

Basically all nuts

Whey protein

There is more to the list, I’m sure but it’s hard to remember all of them, as you can see. Not all of these developed over night, some of them gradually came into play, like red peppers. I used to eat those at lunch every day my senior year and then one day I ate them and my throat closed immediately. Over time, my allergies have just gotten worse and worse and there seems to be no end in sight.

This all began when I was 17 about to turn 18. I am now 19 and about to turn 20. The repercussions of having these severe allergies are a lot worse than what I had imagined. At first, I thought it was awful just dealing with food allergies. Especially when you’re as young as I am. You stick out like a sore thumb at parties and at school, and most people treat you like you aren’t even a person really anymore. I’ve had a girl follow me around the dining hall while at college to see what I could and couldn’t eat, asking me a million questions while along the way; as if my life wasn’t personal anymore, like it was totally normal for her to invade my space and bother me with pointless questions all to quell her endless curiosity. I didn’t ask for this, so why do I get treated like it’s my only identity now? It just doesn’t seem fair.

Anyways, as I was saying, I didn’t realize being allergic to so many things would have the consequences that it does. Last year was my freshman year of college. It is then that my real problems began. I won’t go into a crazy amount of detail because it would make this post lengthier than it already is. Basically, I began to feel sick all the time and got some tests done. We came up with more questions than we did answers most of the time, but eventually we unearthed some of what was causing me a lot of the pain, a lot of the nausea, and all of the bloody vomit and stools. Turns out I have Eosinophilic Esophagitis which is a big fancy word for an extremely swollen esophagus. It makes it difficult to swallow, it causes nausea among other problems. It’s extremely unpleasant and there aren’t a whole lot of cures for it either. They also found that my stomach is bleeding internally. My body is unable to digest most of the food I eat so what it does is irritate my insides until they begin to bleed which causes the nausea and the vomitting and the diarrhea. Eating is a horrendous process which involves me sweating, squinting in pain, wanting to sleep forever, and basically just feeling awful. I feel the best when I just don’t eat. Every inch of my intestinal tract is swollen and beat up from a year of severe food allergies, leaving us with very few options of how to fix it.

After talking with my allergist and some GI specialists at Loyola hospital, we’ve decided I only have one option and that’s to go on the Elemental Diet. The Elemental Diet is a liquid diet that is basically a protein shake. It only has the bare necessities: amino acids, proteins, vitamins, etc. You figure out exactly how many calories you need and then you drink that amount every day. You can only drink water with it, nothing else. What this does is it gives your digestive system a break from the havoc wreaking process of consuming. It allows it to heal and basically press the “restart” button. For a long time, I fought the idea of going on the Elemental Diet, before things got really bad, because I absolutely LOVE food. It’s delicious and satisfying, and basically the reason I roll out of bed every morning. Not really. But still you get the point. So I was at my breaking point when I told them that I would agree to this. My doctors explained that there really is no other option. If I continue to eat like I usually do, the consequences could be fatal. So I agreed.

I wanted to start basically an internet log of this process and the stresses and triumphs that go along with it. I know what it’s like to feel like you’re alone in something like this, because it IS so rare and there are so few people out there that actually understand how awful it is. And it’s not just dealing with it that sucks, it’s dealing with the ignorance that modern day people that don’t understand allergies or this type of illness that come along with it. It’s dealing with the emotional stress that goes hand in hand in dealing with illness. This log will serve as a place for me to kind of vent about my feelings in regards to dealing with this, but also as a beacon to find others that deal with this as well. I feel like we should come together. I know that sounds corny and I probably sound like some kind of pathetic sap, but this is something that requires others to stick together. Knowing that you have a friend that understands what you’re going through makes all the difference. On top of that, if anyone has any questions about these kinds of diseases or problems, here’s a place to ask. There are likely to be others that know more than I do who you may be able to ask as well that flock to these posts. Or maybe it’ll just be me, talking to myself. Regardless, I think it’s time someone start something like this. And so I’m going to.

Today was my first day trying the liquid diet. My mom and I got it prepared and didn’t even bother to read the ingredients because it’s so basic. The first sip wasn’t bad at all. The specific kind I have is called Vital 1.5 Cal. I don’t know if that’s it’s official name, but that’s whats on the cans. After a few more sips, it definitely wasn’t my favorite drink; it tasted more like a really badly mixed vanilla shake with syrup mixed in. I kept drinking, however. About halfway through I noticed that my throat was swelling and was itching like crazy. I ignored it, however, because I figured it was all in my head. After a while though, I couldn’t ignore it anymore. I looked at my mom and told her that I was having an allergic reaction. She just sighed and said “there’s no way.” So we looked at the ingredients and low and behold, whey protein is the second ingredient. I took benadryl and an inhaler, but held off on the epi. We’re now researching hospitals to go to instead of Loyola. Not because Loyola is a bad hospital; it’s not. It’s a lovely hospital and they do a great job, it’s just that we need the best of the best now. It’s go time and I’m stuck here at the start line with no where to go. So it looks like the Mayo Clinic in Minnesota is our best bet. I live in Chicago so Minnesota is way out of our way. However, it’s the only option we have left. We’re both currently researching different liquid diets that I could be on like EO28 Splash that doesn’t use Whey as the protein. As you can see, it’s obviously frustrating to have these kinds of food allergies because it impairs you from doing and eating anything. I can’t go out today because now I’m stuck at home feeling like I’m gonna die, my stomach wrenching in knots, and being exhausted from the benadryl. It’s just sad. And aggravating.

So, I am going to begin to log my days trudging through this mess and all the updates that come my way. I will answer any questions that I can and will be sure to seek out others that might understand what we’re going through as well. More people need to be educated on these problems because they’re not something to shrug off. Internal bleeding is not something to just shrug your shoulders at. It’s deadly. And it’s caused by severe food allergies. So I guess the goal of this whole thing is to make others aware of what’s going on all around the world and what is becoming an epidemic. So thank you for reading this and I’ll be sure to keep all of you updated. - Abby.

[5millionfriends]

Mastocytic Enterocolitis - A Patient Guide to Mastocytic Inflammatory Bowel Disease (MIBD)

Mastocytic Enterocolitis – A Patient Guide to Mastocytic Inflammatory Bowel Disease (MIBD)

WHAT IS MASTOCYTIC ENTEROCOLITIS?

Mastocytic enterocolitis (entero=small intestine, colitis- colon + -itis= inflammation) is a relatively new term for a subset of irritable bowel syndrome condition where there are discovered to be increased mast cells in the intestine. Mast cells are a type of immune cell. They are present in low levels in everyone’s intestinal lining as well in lots of tissues…

[growing420]

What You Need To Know About Intestinal Biopsies

Failure to obtain biopsies during endoscopy misses important treatable intestinal conditions

Thousands of people are undergoing endoscopic exams daily without having tissue samples obtained. Sadly, though their exams may visually appear normal, under the microscope there are often microscopic findings that explain the symptoms that will respond to directed therapy. The gut is lined with superficial cells that contain a few immune cells that release chemical mediators that attract other cells to the area and fight off foreign invaders.

Several cells only seen microscopically play a role in digestive symptoms

Lymphocytes, eosinophils and mast cells are the immune cells that are normally present in small numbers in the surface cells of the gastrointestinal tract. A few lymphocytes are present in the tips of the surface cells that are a type of epithelial cell. These lymphocytes act as the body’s scouts. They survey the barrier of the gut to the inside of the body, looking for signs of potential invading infectious agents. Once an attack is perceived, they signal reinforcements to join them on the front lines.

Lymphocytes are immune cells detected early in celiac disease and cause bowel symptoms

When persistent increased numbers of lymphocytes are present in the surface cells, a chronic inflammatory condition of the gut exists. In the duodenum, autoimmune reaction to gluten in genetically susceptible individuals is a common but frequently missed cause of chronic inflammation known more commonly as celiac disease or Sprue.

Eosinophils and mast cells are allergy cells that cause bowel inflammation often due to food

Eosinophils and mast cells are types of immune cells involved in allergy reactions in the body. They are less commonly present in the gastrointestinal lining except when there are parasites, food allergies, or chronic inflammatory bowel diseases such as Crohn’s disease or ulcerative colitis. Eosinophilic gastrointestinal disorders are less common and a newly recognized condition, mastocytic enterocolitis, is diagnosed when excess mast cells are present in the small bowel and colon. However, mast cells may be difficult to see on biopsies without a special stain for tryptase, an enzyme present in mast cells that are immunologically activated.

Allergic esophagus condition may mimic reflux but is due to food and eosinophils

The esophagus normally contains no eosinophils. The two exceptions gastroesophageal acid reflux in which small numbers, up to 6-7 usually and no more than 10-12 per high power field (40X magnification) are found in the lower esophagus only not in the mid or upper esophagus. Allergic eosinophilic esophagitis is diagnosed when 15 or more eosinophils per high power field are found in more than two fields or more than 20 to 24 per high power field in one field are seen or lesser numbers are present in the upper esophagus. Mast cells that are activated have also been found associated with allergic eosinophilic esophagitis and their presence supports allergic esophagitis over reflux as the cause of the increase eosinophils though it is believed some people have both conditions coexisting.

Allergy and immune cells in the stomach and intestines found microscopically cause symptoms

In the stomach and small intestine more than 10 eosinophils per high power field defines eosinophilic gastroenteritis. In the small intestine and colon more than 20 mast cells per high power field found in association with otherwise unexplained diarrhea is now termed mastocytic enterocolitis. This newly recognized and described entity is previously unrecognized cause of diarrhea in some patients diagnosed with irritable bowel syndrome who may have been told they have a normal colon exam though no biopsies were done. Similarly, more than 20 lymphocytes per 100 epithelial cells in the colon are found in lymphocytic colitis, another form of microscopic inflammation of the intestine resulting in diarrhea that may be inappropriately diagnosed as IBS.

Gluten grains wheat, barley and rye cause increased lymphocytes with normal blood tests

In many of these patients, gluten sensitivity is to blame and the lymphocytic colitis is felt to represent a colonic form of celiac disease. In celiac disease, 30 or more lymphocytes in the tips of the villi per 100 epithelial cells is the earliest sign of gluten injury occurring before the villi become flattened or blunted. This finding may noted before the specific blood tests, anti-endomysial (EMA) and anti-tissue transglutaminase (tTG) antibodies appear in the blood even though the intestine is damaged enough to result in nutrient malabsorption and diarrhea. Anti-gliadin antibodies are often present however when significant intra-epithelial lymphocytosis is present along with symptoms that respond to gluten free diet. Lesser degrees of intra-epithelial lymphocytosis have been proposed as highly suggestive of early celiac disease and or gluten sensitivity, in the range of 20-25 per 100 epithelial cells.

Colon can be affected early with microscopic signs only

In the colon, the presence of eosinophils is considered one of the earliest findings of chronic inflammatory bowel disease. In the right colon more than 20 eosinophils per high power field and in the left colon greater than 20 per high power field is considered abnormal and suggests eosinophilic colitis, chronic inflammatory bowel disease or a parasitic infection.

Allergy cells release chemicals causing pain, diarrhea, and sometimes constipation

Eosinophils and mast cells release chemicals that irritate the bowel, increase permeability (cause leaky gut), increase contractions of the gut, increase intestinal secretions and heighten pain. Both cells are related to allergies including food allergies. It is therefore not difficult to conceive of a link to adverse food reactions in the development of intestinal irritation.

Most digestive symptoms should be evaluated by scope examination and blood tests

The important point to be aware of if you have gastrointestinal symptoms and are undergoing or have undergone an endoscopic examination is that a normal appearing intestinal lining does not exclude the presence of damage or irritation sufficient to cause symptoms of pain, bloating, gas, and diarrhea nor exclude impaired digestion and absorption. Blood tests exist that can help screen for celiac disease, Crohn’s disease and ulcerative colitis but biopsies of intestinal lining is usually required for definitive diagnosis.

Normal appearing gut lining may not be normal, make sure you get biopsies

Only through obtaining tissue samples that are examined under the microscope can abnormal types and number of inflammatory cells be identified. It is through biopsies of normal appearing intestinal lining that the correct diagnosis of various microscopic forms of gastrointestinal inflammatory diseases is confirmed. So, if you are preparing to undergo an endoscopic exam, I encourage you to insist that your doctor perform biopsies even they believe your exam looks normal. Based on the information I have reviewed above, a normal exam should be tip off that one of these microscopic conditions might be to blame for your symptoms.

References:

Al-Haddad S, and Ridell RH. “The role of eosinophils in inflammatory bowel disease.” Gut 2005; 54:1674-1675.

Guilarte M et al. “Diarrhoea-predominant IBS patients show mast cell activation and hyperplasia in the jejunum.” Gut 2007; 56:203-209.

Jakarte S et al. “Mastocytic enterocolitis. “Increased mucosal mast cells in chronic intractable diarrhea.” Arch Pathol Lab Med. 2006; 130:362-367.

Kirsch R et al. “Activated mucosal mast cells differentiate eosinophilic (allergic) esophagitis from gastroesophageal reflux disease.” Journal of Pediatric Gastroenterology and Nutrition 2007; 44: 20-26.

Liacouras CA. “Eosinophilic gastrointestinal disorders.” Practical Gastroenterology March 2007. 53-67.

Rubio CA et al. “Lymphocytic esophagitis: a histologic subset of chronic esophagitis.” Am J Clin Pathol. 2006; 125(3): 432-437.

Yousef MM et al. “Duodenal intraepithelial lymphocytes in disorders of the esophagus and stomach.” Clinical Gastroenterology and Hepatology 2006; 4:631-634.

Source by Dr. Scot Lewey

from 420 Growing News http://www.growing420.net/2017/06/10/medical-marijuana-14/

[365daysofabby]

July 3rd, 2019

WOW today started with a bang. Instantly puking as soon as I wake up and an epi pen soon after. Then I worked for what felt like forever and I just felt incompetent and awkward. What else is new.

[365daysofabby]

July 6th, 2019

Today I was up with the sun. Each morning I try to stand outside in the quiet for five minutes before starting the day. It brings me back to reality and calms me down. Please send all of the good vibes you can or prayers or wishes because lord knows I need it right now.

[365daysofabby]

February 28th, 2018

Today was one of my favorite “between the spaces” best pals pt 1 of 2 bdays today as she’s a rare lil leap year kid. Love you Meg, sending you many special vibes and room to breathe. (As weird as this reads, she’ll know what it means & that’s all that matters)

It may not look it, but Chicago was almost 60 degrees & warm; I wore a sun dress despite my somewhat cloudy mood. I’m grateful for patient lab partners and Doritos.

The second photo is an old one from 2013 and is my nod to Rare Disease Day. To my fellow spoon-lacking, exhausted, but ever persistent pals, I am wishing you nothing but recognition today.

[365daysofabby]

February 4th, 2018 Super Bowl Sunday, look out. I’m having a rip roarin’ time puking my brains out while 8 customers wait for me to get my shit together. MAST CELL DISORDERS ARE SO MUCH FUN ALL THE TIME.

[pupneph]

As someone diagnosed with Mastocytic enterocolitis a vegan diet would kill me.

Hey vegan friends, I have faith that you meant well, but please don’t come into my inbox suggesting vegan alternatives to butter or trying to tell me they are healthier. Health is subjective and in my case butter is the healthy option because the vegan alternatives will tip me over into a Mast Cell Degranulation Episode, meaning I run the risk of making myself severely ill or even going into anaphylaxis. Vegan diets, in general, are not recommended to folks with histamine intolerance or mast cell issues because vegan food tends to be very high in histamine or are histamine liberators meaning they prime my wonky mast cells into releasing more histamine without due cause. That’s just how it works I’m afraid.

Also, please don’t try to make me feel guilty over eating certain foods. My diet is incredibly restricted due to having MCAS, and it has only been in the last six months since receiving my diagnosis and getting proper treatment that I have been able to increase my calorific intake from 200 a day, to just under 2000. I was living on water and oats at one point because it was all my body would digest. It was horrific and I’d never wish it on anyone. (Some of you are newer here and wouldn’t have known about that, but the people that have been with me for a while now can attest to how worrying it was.)

Please don’t begrudge me being able to eat the small amount of animal fats and proteins I am able to digest. I need them to live and do not have the luxury of choosing what I can or cannot eat. (No, a feeding tube is not a valid option just to avoid eating certain things, Jesus Christ I can’t believe someone even suggested that to me. Feeding tubes while great for those who need them, are not risk free and can cause greater health complications. They are an absolute last resort and I have gone to great lengths to try and avoid needing one.)

For what it is worth, I only eat ethically sourced, organic local produce, and again unlike all of you, I do not get to choose how or what I eat. Maybe one day. But right now my body is recovering from years of malnourishment and misdiagnosis after misdiagnosis, and I’m going to eat whatever I need to get well again. And I hope you can understand and be respectful of that if not be comfortable with it.

Please be more mindful of your advice in the future. Your intentions may be well-meaning, but as we all know, intent and outcome are not always guaranteed to be on the same page.

Also, non-vegan friends, this is not an invitation to start slamming veganism. This post has a specific intent and purpose, please do not derail it either in the comments or reblogs. Thank you.