Flare Symptoms Changed

[tex]

I assume you're aware that some medications can cause an elevated calprotectin level, especially NSAIDs, and PPIs.

Tex

[cloud9er]

Hi Tex,

I didn’t know about the calprotectin levels being disrupted, although I knew that they can cause inflammation. Thank you for the info! I had only taken Salofalk for the 2015 result. The 2020 one I had taken antibiotics for SIBO which really upset my tummy. The one in June I’d obviously been taking beta blockers and Budesonide.

Kind Regards,

Amy

[tex]

Amy,

Please be aware that I'm not an authority on calprotectin, because normally were not concerned with it with MC.

Tex

[cloud9er]

Hi Tex,

My calprotectin result in June was 163. I seem to have developed a strange rash on both cheeks. I don’t think it is acne, maybe Rosacea It seems to be fading now thankfully.

Kind Regards,
Amy

[cloud9er]

Hi Tex,

Regarding the MC caused by t cells vs mast cell information:

Amy,

If your symptoms are mast cell-induced, rather than T cell-induced (as defined for classic MC inflammation), then boosting your magnesium intake significantly (topically-applied magnesium works well, also, if you use enough), and minimizing your intake of high histamine foods (and histamine-releasing foods), might provide significant benefits. You might find that a good daily H1 antihistamine for a week or so may also help to reduce your symptoms. An antihistamine will also help to reduce any nausea problems For many of us, a daily H1 antihistamine seems to provide about as much benefit (for reducing diarrhea) as budesonide, but of course, that doesn't work for everyone.

Tex

Can someone transition from one to the other? What is the difference between the two causes? How does one find out what causes their MC?

Thank you.

Kind Regards,
Amy

[tex]

Sure, transitions are possible, but I have no idea how common they are because there's very little verified medical information available on this. Co-morbidity (concurrent disease) is also probably possible. In other words, you might have both LC and MC (mastocytic enterocolitis) I'm not aware of any simple way that mast cell levels can be measured, but elevated mast cell populations are associated with an increase in tryptase levels, and elevated tryptase levels can be detected in samples under the microscope, after applying a certain type of chemical stain. This condition is sometimes referred to as mastocytic enterocolitis. It's diagnosed by The presence of an increased number of gut mucosal mast cells (more than 20 per high power field) that are revealed by immunohistochemical demonstration of mast cell tryptase in patients with chronic diarrhea.

In other words, to diagnose this issue, the pathologist uses a special chemical stain to enable him to detect an elevated mast cell population in your biopsy samples. I don't believe this is normally done during routine pathology analyses used for diagnosing/ruling out MC. I would be surprised if many pathologists even kept a suitable stain in stock. If you really feel that this might be an issue, you can ask your gastroenterologist to request that your your biopsy samples be reanalyzed by the pathology department, to see if you might have mastocytic enterocolitis. You don't need to have another colonoscopy done — your existing biopsy samples should work just fine, and most pathology apartments save those old samples, so yours should still be available.

Tex

[cloud9er]

Hi Tex,

I’ve asked for results of the CD 117 stain for mast cells. I took Imodium on Sunday to attend a concert and I’ve felt a bit constipated since. Thankfully I’ve started having solid bowel movements again! I have felt a bit sore and nauseous, plus bloating and fatigue. Do you think this is a positive development/change?

Edit: I’ve just ordered some Allevia, fexofenadine; link below. I stumbled across a histamine list on a website. I noticed that some foods, especially ground meat (aka mince),
(I mentioned) are high histamine! From this list I’m not sure what I could eat! It has collagen listed on there, does that mean bone broth is out??

https://www.amazon.co.uk/dp/B09QQRZ4M5/ ... 81_TE_item

https://mastcell360.com/low-histamine-foods-list/

Any recommendations for a DAO supplement in the UK, should I make a separate post??


Kind Regards,

Amy

[Gabes-Apg]

keep in mind,
we can not avoid every trigger 100%.
yes some foods will have histamine. Dont get to obsessive about avoiding every trigger


the best way for the body to moderate histamine levels is via B6 (active form P5P) and magnesium

I have resolved life long allergy and asthma issues once I fixed B6 and magnesium deficiencies
(up until 6 years ago I could not walk into a house where a cat lived without major allergic reaction, now I can pat them )

it is possible to have low histamine bone broth.

[tex]

Amy,

I didn't have time to read those links, but in general, bone broth is very beneficial for healing. However, if you do indeed have serious histamine issues, then bone broth might be off limits, not because of collagen, but because bone broth is simmered for a long time. Histamine builds up over time in certain foods, whenever they're not frozen, especially chicken and fish. As Gabes pointed out, you can have relatively low histamine bone broth, if you observe certain rules when making it.

Tex

[cloud9er]

Hello,

Back again! I got fractionally better 3-4 weeks ago, but I experienced stress again so was put back to square one :( I’ve spoken to my gastro this evening and they’re not sure what to do. No infection source has been found. I didn’t score high enough for a mast cell issue, but the result was moderately raised. I have the option of prednisone, a mast cell stabiliser (I’ve already got some antihistamines) or an elimination diet (liquid only diet) for around 3-4 weeks. They prefer the latter which I’m rather upset about as my hen do is next week and the wedding is 4 weeks away! Food and drink are involved for the hen do as well as the wedding obviously. I have until tomorrow afternoon UK time to decide. I’m rather upset as they all have side effects for my life :( Prednisone could make me look fat, the mast cell stabiliser could make me tired which I’m already suffering with and the liquid only diet will have a large effect on my mental health and potentially ruin my wedding and its preparations. Any advice would be greatly appreciated. Provided an update anyway.

Kind Regards,

Amy

[Gabes-Apg]

Amy

tough situation you find yourself in.

I say the following with support and care, and I apologise in advance if it upsets you
I know from your previous posts that the wedding is important, albeit so is your health.

from what you write and share, you are give impression that you are kinda having to chose one or the other.
we cant make that decision for you

sadly MC is for life, and many of us here have to make sacrifices, changes, with career, family, social life, even where you live etc based on health.
you may not want to read this and hear this but it is reality.
There is no quick fix or guaranteed solution to your situation.
(I moved from capital city to smaller city to better manage my health and took steps down in my career to remove travel and stress)

I am commenting as someone that stress has been and still is a major trigger for my MC, until you accept some of the limitations life with MC means, make diet and lifestyle changes to minimise symptoms, medication and various other approaches will have limited amount of success and may not provide long term wellness.

I will push the boundary and be devils advocate - given how you are feeling at the moment will you enjoy the hens weekend if you are having MC symptoms and on the loo?
I suggest do the hens weekend AFTER the wedding and use the time now to try and feel better so you can be at better stage health wise for the wedding
the food and alcohol for a hens weekend are high risk to put you totally unable to enjoy the wedding. Dont do the hens for social pressure
right now you need to make decisions for your health.

it is very likely this is not what you wanted to hear. it is my thoughts on all you have shared thus far.

[cloud9er]

Hi Gabes,

I appreciate your advice, thank you! I assume you’re advising the liquid diet? Feeling rather sorry for myself, my original hen do was a theatre show and so didn’t involve food and drink. My concern with a liquid diet is being able to eat food at my wedding, then our honeymoon a week after in the Caribbean. Even if I stop the drinks I will then need to add foods daily or every three days. My mental health isn’t great at the best of times. The situation feels very unfair, especially as some of the stress has been people who are supposed to care and be close to me have let me down. Anyway, I am leaning towards the liquid diet reluctantly.

I was also advised to seek out a psychiatrist to prescribe some medication because of my anxiety in general but especially due to the wedding.

Thank you again.

Kind Regards,

Amy

[Gabes-Apg]

I am neither encouraging or not encouraging the liquid diet
I have not heard of the liquid diet as elimination diet before
I do have hesitations about once the liquid aspects are finished how your body will react to solids again.
especially when that will involve wedding foods and travelling.

and based on experiences of people in this group that had mast cell issues, inflammation (not just MC) no treatment of 4 weeks can resolve issues.
it is very rare to go from major symptoms to none in short period of time
(I have been part of this group for 12+ years)

Healing takes months not weeks
healing is reliant on low inflammation lifestyle and eating plan and the right nutrients like Vit D and magnesium etc.

regarding the social pressure on the hens
make a stand - it is YOUR wedding not theirs. and right now to enjoy the wedding and honeymoon with your husband you need to make some adjustments for your health.

the prednisone / budenside medication may cause puffiness in the face, but it may give your digestion the support you need to do the wedding and honeymoon. I think a puffy face is less impacting option at the moment rather than spending wedding day on the loo.
I will be transparent and say that steroids do not work for all MC'ers. If that is your best option right now then it is worth a try

[cloud9er]

Hi Gabes,

Just wanted to say that I got it wrong, it’s called an elemental diet!

I will ask for a combined approach. I have horrible eczema on my ring hand The hen do is for me to be honest After getting upset during the consultation I was told to grow up (kindly), which is fair.

Kind Regards,

Amy

[tex]

Amy,

Please don't consider this to be advice — it's only an observation. I have a question. Is your fiancé okay with going through with the wedding, with you currently in a flare? If I were in his shoes (assuming that he has at least a basic understanding of this disease), to be honest, I believe I would want to postpone the wedding until my bride was in remission. Again, this is just my opinion, but I believe the stress of this entire situation is going to prevent you from being able to suppress the inflammation to the point where you will be able to achieve remission. Drugs and diet changes cannot work miracles with MC. Stress trumps everything, so it has to be resolved first, or no treatment is likely to work. Again, that's just my opinion, but if MC is nothing else, it's a stress driven issue. The eczema on your hands is clear evidence of your currently high inflammation level.

Re: prescription treatments for anxiety, the only anxiety drug we've found to be tolerable for most of us, is bupropion (WelButrin), and it's not necessarily safe for everyone, nor is it always effective, but it's the best prescription option available. The best treatment for anxiety, is usually magnesium.

Tex