Hi I'm new and want to share my story of what is probably MC

[Brigitte]

Hi, Firstly, I'm very happy having found this site. It contains lots of info on a subject that is still quite hard for me to understand.
Let me explain what is happening to me these last few months.

I am a 50 year old woman living in Europe, Belgium, with a history of eczema as 5-6 year old and since my teenage hay fever and some mild food allergies (mouth itch when eating some fruits, nuts, tomatoes, e.g.).

Somewhere in 2012 after visiting a GI on heartburn problems, which were confirmed by endoscopy showing that the esophageal sphincter did not always close properly, I started taking esomeprazole 20mg once/day. Heartburn problems disappeared and I was happy.
On two separate days in April and May 2013 I suddenly had a terrible itch inside my body, no rash and only some redness. The itch was slowly "walking" over my body, going from my scalp to legs, belly, hand palms, so different body parts only at the same time. After taking an extra ceterizine it went away after about 30 minutes.

In June 2013 I developed eczema (and some hemorrhoids and also rash in the same area…) and was sent to a dermatologist by GI. The dermatologist wanted to do a patch test but end of June 2013 I had an anaphylactic reaction (red skin, puffed body and face, breathing problems) for whatever reason and was taken by ambulance to hospital and released after 4 hours. Given medication in ambulance: cortisone by IV. The responsible Dr (a pulmonary allergy specialist) changed my medication from esomeprazole/ceterizine to Zantac 300mg/2x daily and Aerius/1x daily and suggested allergy testing while also mentioning that it would probably not give the answer what caused this heavy reaction or the eczema…

In July 2013 I had watery D. for over more than 3 weeks with occasionally heavy cramps and my GP had my stool checked (negative result for whatever they checked) and advised me to only eat “constipating” stuff and to fight painful cramps with Spasmomen and D. with Imodium. This stopped D. almost immediately… for a few hours…

Beginning of September 2013, after 6 weeks of watery D…, I finally got authorization from GP, to see a GI. Telling him the above story and before coming to the changeover from esomeprazole to ranitidine, he mentioned it looks like MC caused by ranitidine. Advice was to stop taking this immediately; he also prescribed budenoside if pain was too hard to bear to take after about 3 days without ranitidine (2x 300mg/day). Till now I did not take the budenoside as cramps have almost completely disappeared as well as D.
GI agreed to do a colonoscopy (more because of hereditary factors in family history than my actual situation as I understand it) to confirm his diagnosis of MC and rule out other colon problems when my colon was ready to support this, so in the near future. He wants to do this in hospital with the presence of an anesthetist as he does not want to take a risk of any sort of allergy to medication.

So, situation of today, after one week without ranitidine: no more D. but constipated! Pain is very rare now, but belly feels sometimes really swollen and uncomfortable. Still some minor burning sensation (due to inflammation or maybe also heartburn?) and really very very tired! So quite happy… but little worried about the future…

I always had the feeling that my recent allergy reactions like eczema, perianal itch and rash and intestinal problems had to do with my medication and something going wrong in my gut but got no confirmation from GP or dermatologist when mentioning this.
BUT in my search for information (GI advised me to look things up, very modern, I thought…) when going through some messages and information on your very complete site, I got a little scared.
Maybe this will remain a health problem for the rest of my life as when reading about it, MC seems to be a chronic disease that needs adjusting of the way of life.
Will the colonoscopy with biopsies still give result if done in a few weeks?

Any reaction or suggestions from your sides are welcome and thanks again for this super site!

Bibi

[tex]

Hi Bibi,

After reading about all of your symptoms and reactions, it's very clear that you have serious mast cell problems. At the very least you have mast cell activation disorder (MCAD), and you probably have mastocytic enterocolitis. You should ask your doctor to have the pathologist stain your biopsy sample slides with a tryptase-based stain, when the biopsy samples taken during your colonoscipy are analyzed. Without that special stain, it's virtually impossible to diagnose mastocytic enterocolitis, so your pathologist definitely needs to use that stain.

Since you have had anaphylactic reactions, and since you have had mast cell issues all of your life, it's very possible (in fact it's likely) that you may have systemic mastocytosis. You should ask your doctor to do any tests necessary to rule out systemic mastocytosis, because that can be a very serious disease (due to the anaphylaxis risk).

The problem is that there are not very many doctors in the world who are qualified to deal with mast cell issues such as these. Most allergists are not well qualified to treat a patient with systemic mastocytosis, and they know nothing about mastocytic enterocolitis. Likewise, most GI specialists know very little about mastocytic enterocolitis, and they know virtually nothing about systemic mastocytosis. Most of the mast cell experts seem to be associated with Brigham and Women's Hospital in Boston, Massachusetts, USA. But perhaps your doctors could consult with them. Dr. Maria Castells is the leading researcher at Brigham and Women's Hospital, and she has trained most of the mast cell experts in this country.

As far as the digestive issues are concerned, we control them by diet changes, and in some cases, antihistamines. Most of us who have MC are sensitive to gluten, dairy, and soy, and after we remove those foods from our diet, our gut begins to heal. Some of us have other food sensitivities that we also have to avoid.

I'm not a doctor, so I can only offer my impressions, and suggest that you ask your doctors for further tests to either rule out or confirm mastocytic enterocolitis and systemic mastocytosis.

Tex

[Zizzle]

I agree with Tex, you sound like you have mast cell related issues. My mother-in-law has mastocytic enterocolitis and suffers from chronic hives every few years. She responded well to a gluten free diet. She also takes Zyrtec but ultimately wants to take Gastrocrom (cromolyn sodium), a mast cell stabilizer.

The ithciness and rashes make me wonder if your use of acid inhibitors may have caused yeast/candida overgrowth.

One more thought - itchiness without rash can be a sign of liver problems. My sister had cholestasis of pregnancy and her primary symptom was itching, particularly on the palms of her hands and feet.

[Brigitte]

Wow... a new insight to share with my doctor. Thanks for your elaborate reply.

I need some time to digest this and look on the internet to learn more before asking my doctor's advice. This way we can discuss options a bit more prepared...


Regards,
Bibi

[Zizzle]

Here is an excellent free chapter of a book on Mast Cell Activation Syndrome. You can read the intro online and download the rest for free.

Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome (pp. 155-232) $0.00
Authors: (Lawrence B. Afrin, Division of Hematology/Oncology, Medical University of South Carolina, Charleston, SC, USA)

https://www.novapublishers.com/catalog/ ... s_id=42603

[DebE13]

I agree with Zizzle, the itching without rash can be liver related and not to be taken lightly. That was the key in my son's dx of PSC. Doesnt sound anything like what you are describing. Best wishes in finding some answers.

[Brigitte]

To DebE13 and others:
You say "the itching without rash can be liver related and not to be taken lightly". It was quick impressive the itch then, but it only happened twice and till now doctors I told this, did not think (or say...) much of it. But I will make sure to mention it again.
There is one other thing that bothers me a bit, when I am in bed, I often, almost every night, wake up because my feet are feeling quite hot, while before they were quite cold. I take away the blanket and they cool down.

Any ideas on this?

Regards,
Bibi

[DebE13]

Bibi, i didnt mean to scare you when i said that. I apologize. But it is something to definately bring up to your doctor so you can have simple blood tests to rule out certain conditions. I carry a bit of guilt on the topic since my son had crazy itching that began when he was 15. I dismissed it as nothing. He had regular sinus infections and always seemed to have to blow his nose. I remember always shoving kleenexes at him because we all know how much kids love to blow their noses. Haha. But it was really annoying. I pushed antihistamines at him and it didnt help. After he had bloodwork done it didnt take long to get a dx. It was delivered without a real explanation of what it really meant and how serious it is. I harbor hard feelings to this day about how it was handled. I knew it was serious when he became a top priority for all testing and appointments. I dont blame myself because there isnt anything i could have done and one naturally doesnt jump to the worst conclusion when your child is sick. THis puritis was so bad at times that i literally stood and watched him scratch so bad that he looked like he would jump out of his skin. His sheets have dots of blood on them because his itch got so severe. Antihistamibes and anti itch lotions dont even touch it, we have tried them all, because it is caused by the build up of toxins in his blood.

Again, this is probably more info than you needed, but i just wanted to make the point to not ignore your body and what its telling you. Its not likely to have a terminal dx but its always a good idea to get it checked ou

As far as your feet, i have no good suggestions. I have problems regulating my temperature so i am generally cold but then have frequent bursts of being hot. The only time i had weird foot sensations was when i was on prednisone.