Mast Cell Issues and 3 kids 3 in different schools

crervin · Post by **crervin** » Thu Aug 20, 2015 8:06 am

I am having trouble finding the right medication combination for what I believe is a mast cell response. I am currently eating meat (minus chicken now), rice and or potatoes, currently with a few GF chex vanilla cereal. I know I am having a lot of stress too now (school just started, 3 kids 3 different schools in 3 different directions, getting up 1.5 hours earlier than normal) My mornings are the worst on gut upset. The alarm goes off, my gut wakes up. When my husband arrives in the late afternoon, my gut calms which is no surprise! So I have several questions........

1. Is there a particular symptom that someone has noticed from the mast cell issues?

----I am having more of an acidic BM, loud gut churning morning when I believe this is happening. I know everyone is different....

2. What antihistamine seems to help people the best?

----I have tried zyrtec, not a big help. Unisom (doxylamine succinate 25 mg) seems to work best but wears off after up for 3 hours. I have tried pepcid along with these, but notice D later on in the afternoon (about 8 hours after taking it). Plus 2 days in a row of it makes it worst, or so it seems.

2. How do you help with the drying out that the antihistamine causes?

3. Has anyone in remission with mast cell issues plus food sensitivities been able to come off of the antihistamine medication?

4. Do you think this is mast cell or stress?

---In the summer, I still felt this way in the later mornings after I was up for an hour or 2, but not like an explosion still D and gut upset though.

Thank you for all of your time! My cramping at night and the nausea is still so much better since the diet. Now if I can just get my mornings to calm down with my gut pain and D, maybe I can survive this school year and start eating some vegetables.

Post by **tex** » Thu Aug 20, 2015 10:36 am

Hi Martha,

Remember that virtually all of this amounts to navigating unknown waters, since mast cell issues are not officially associated with MC by most physicians in the mainstream medical community, and of course that's due to the lack of published research on the topic. Likewise, the effects of stress on MC have not been officially researched, so it's not commonly accepted as a major factor with MC among many/most medical professionals. So we have to go by our accumulated experiences among the members of this discussion board, and try to do the best we can to get it right.

Some members here have noted that "battery acid" D is often associated with casein/dairy products. However, since I would assume that you are avoiding dairy 100 %, that symptom and the associated loud gut churning noises may simply be due to a flare (or a flare increase) due to an uptick in your stress environment. Considering your morning obligations with getting the kids off to school in 3 different directions, I would guess that stress is a strong contender for the cause of your surge in symptoms.

Many of us (including me) take Allegra (fexofenadine HCL 180 mg) and get good results. Some members also take Benedryl at bedtime, for extra antihistamine benefits as the Allegra begins to wind down, and to help them sleep (since Benedryl commonly causes drowsiness).

Martha wrote:How do you help with the drying out that the antihistamine causes?

I used to have that problem with Chlor-trimeton, but for some reason or other, that doesn't happen with Allegra (at least not in my case). Instead, it either causes no noticeable effects, or it occasionally causes a very slight nasal discharge.

Maybe that's an individual thing, and that only apples to me.

Martha wrote:Has anyone in remission with mast cell issues plus food sensitivities been able to come off of the antihistamine medication?

Yes. It may take a few weeks or a few months, but most of us can discontinue the antihistamine after our immune system settles down again.

Martha wrote:Do you think this is mast cell or stress?

It could be either or both. Stress can certainly trigger a mast cell reaction, also. Usually, if a mast cell reaction is involved, there will be postprandial (soon after eating) itching, and either a rash or itchy red splotches or weals somewhere on the body. Some people notice itching, or a rash, or a flush on their face or neck or upper chest (similar to what happens during an anaphylactic reaction), and some have described an itchy tongue or itching in their throat immediately after eating. In less common cases, it takes hours, or even a day or so for the itching and/or rash or red spots to appear. In my case, the red splotches or bumps typically appear on my lower legs, but occasionally they show up on my torso, or elsewhere. And this usually happens after I ingest a high-histamine food. For most of us, including me, the problem is much more likely to occur during hot weather, because mast cell activity is associated with temperature — the higher the temperature, the more likely mast cells are to degranulate (release histamine and other inflammation mediators).

Mornings are the worst for virtually all of us when we are reacting. After resting for so many hours during the night, once we wake up and the gut becomes active again, it does it's best to try to catch up with it's job of trying to purge the body of all that bad stuff in the gut that has accumulated during the night, so it tends to be overactive for a while.

At least that's the way I see it. I hope that some of this is helpful.

Tex

crervin · Post by **crervin** » Thu Aug 20, 2015 11:35 am

Great help! I will try allegra. I also notice with the acidic BMs, the residual is also yellow. I still think about bile acid malabsorption due to the lack of gallbladder. I am afraid stress is my main problem though. While I am on vacation with my family, it is crazy how my stomach calms, still D but so much better and not as many BMs. I am going to get a handle on this. Thank you so!

Post by **tex** » Thu Aug 20, 2015 3:01 pm

Martha,

I don't recall seeing this addressed in any or your posts (but my memory's not good enough to keep up with such details, anyway), but have you tried cholestyramine to resolve the D, in case the main cause of the D is simply bile acid malabsorption?

You're very welcome,
Tex

crervin · Post by **crervin** » Thu Aug 20, 2015 5:25 pm

that is actually why I went to the doctor last week. he told me to try the budesonide first and get colitis under control. i couldn't convince him of that or the vitamin test. i need to do research on the bile acid malabsorption. i am not sure of the symptoms. maybe i should go back to my original nurse practitioner. she has helped me more than the doctors.

Post by **tex** » Thu Aug 20, 2015 5:58 pm

I remember your post, now, (unless someone else posted about a similar situation). Your doctor is the one who needs to do research on bile acid malabsorption. The main symptom is persistent D that's refractive to conventional treatment, and it's the most common cause of persistent D. Yes, budesonide will probably work to stop the D, it's just that corticosteroids carry a lot more baggage than cholestyramine.

Sorry that my memory is so unreliable.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Thu Aug 20, 2015 6:10 pm

Martha,
To answer your question, I was reliant on daily anti-histamine medication for over 9months. Once I got some good gut healing and fixed key nutrient deficiencies, mostly magnesium, but also Vit C and zinc. I no longer needed anti-histamines.

Go forward another 6-9months, with further fixing of key deficiencies (b group etc) I can now eat high histamine foods with no issues, and even though during my childhood I was majority allergic to horses and cats, couldn't enter a house where there was a cat, I can now be in houses with cats, pat them, nurse them etc and pat horses....

Another good option is an old school anti-histamine, chlorpheniramine maleate. I purchased it online via puritans pride. It has no MC trigger additives. The tablets are only 4mg, so when I did take them it provided blockage for a couple of hours, not 12-24 hours. This helped majority to avoid constant dryness.

It won't happen overnight, but get onto the right management plan, stick with it for over a year and I can assure things will get way better.

Agree with tex, the cholestramine would be very good option for you.....
Are you taking Vit D3 and magnesium?

crervin · Post by **crervin** » Thu Aug 20, 2015 7:39 pm

Thanks guys and great news, Gabes, about your allergies! This is very hopeful! I am using magnesium oil. i just ordered a vitamin d test and was trying to take it tonight. Unfortunately my blood never cooperates, I hope the test works. I am sending it off tomorrow. After the results, I was going to start taking it. Strangely, I have been able to mow grass lately when in the past it put me to bed with a migraine. I will try chlorpheniramine maleate if the allegra doesn't help. Now to get a dr to prescribe cholestyramine......

One more thing, I found someone who sales duck eggs. I haven't gotten them yet, but was excited that they exist where I am located!

Gabes-Apg · Post by **Gabes-Apg** » Thu Aug 20, 2015 7:50 pm

It's all about 'progress, not perfection'.

Each week make a small change or two that is a step towards your ideal MC management plan, in time the improvements will come, you will have a routine that works with family needs etc that you can meet their needs, and yours....

It takes 8 weeks or so to correct deficiencies, so hang in there....
Things will get better.

crervin · Post by **crervin** » Sat Aug 22, 2015 10:02 am

I woke up in the middle of the night itching my chest uncontrolably. Then woke up to flushed face. The itching on my chest has happened before but not often. Thanks to you all I realize now what that is, but I can't pinpoint the food. I caved last night by eating garlic mashed potatoes, but I don't think it's milk cause this reaction only happened occasionally. I also ate lamb chops, filet mignon with bacon, and small amt of smoked salmon (brazillion steakhouse, on minivacation) I did try a small bite of smoked sausage. Is there a way to better identify the culprit? And can herbs cause this reaction? Sorry guys I'm really stressed that this happened, cause it's been awhile since this. Also, my life is all about my kids (4 yrs, 8 yrs, and 11yrs old) that I have trouble focusing on me and think how am I going to pinpoint this food or foods.

Post by **tex** » Sat Aug 22, 2015 12:17 pm

Hi Martha,

Looking at your known food sensitivities (EnteroLab results), the only candidates from those tests are gluten and egg. The EnteroLab tests are very specific, and only test for a single allergen, typically the most likely protein in a food to which most people react. It would be unusual, but not impossible to be sensitive to whey protein, even though you tested negative for casein. Could egg have been used anywhere for breading on any of the meats? I don't see any reason why it (or gluten) would be on smoked salmon or in smoked sausage. Accidental cross-contamination is always a possibility (on a grill or griddle, for example). But a reaction to one of those foods should include some bloating and possibly D.

Garlic allergy is rare, but it can indeed cause a rash and itching.

http://www.prism.gatech.edu/~syarlagadd ... garlic.pdf

And since a rash and itching is an IgE reaction (classic allergy symptom), rather than an IgA reaction, that raises the possibility of an allergic reaction to a spice or preservative. Trial and error testing is about the only practical way to track it down if that it the case, because most of the lab tests available for such testing are designed for contact dermatitis, and those tests typically have rather limited usefulness for ingested food sensitivities.

A mast cell reaction is a possibility, and gets my vote as the most likely culprit, because smoked foods and processed meats, such as sausage, hot dogs, and salami, and especially fish, are typically high-histamine foods. Very fresh fish, for example, may not have a high histamine content. But every passing hour yields an increase in their histamine content, unless they are frozen and stored near (or below) 0 degrees F.

Histamine (mast cell)-based reactions are dose-dependent, based on the total amount of accumulated histamine in circulation. IOW, until we exceed our personal threshold for a total allowable accumulated level of histamine in circulation, we will be fine. But as soon as we exceed that accumulated level, we will react. If you haven't already read the short articles at the links below, you might find them to be helpful.

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

Many of us here (maybe most of us) have mast cell issues associated with our MC. I hope that some of this is useful.

Tex

crervin · Post by **crervin** » Sat Aug 22, 2015 1:46 pm

No breading on the meat but I just remembered I did try small amt of salami too. It was all u can eat meat. My husband thought this restaurant would work for me. I'm not a big person, 5ft 2in in height, but I am a high energy, never sit down person. I have to eat a lot. I don't know now what will fill me up.

While I was eating I got this cramp under my left ribs which happens occasionally too. There was D the next am but actually better than normal. I believe it is histamine overload, that was a lot of meat. I guess I'm not taking enough antihistamine. I was worried about garlic, but maybe I can test that later by eating more of it. For now, going to log this in my journal. I just got some allegra and took it this am. It seems to be helping but 30 min after I took it my head hurt really bad. Going to see if it was the med or the histamine reaction, by taking again tomorrow. Thank you for listening to me!

Gabes-Apg · Post by **Gabes-Apg** » Sat Aug 22, 2015 3:50 pm

based on what you have shared, it sounds like your body is super inflammed and just the smallest amount of irritants (ie the salami) eating out, is enough to cause intense reaction.

for the current time, while you are super sensitive, your best option is to eat bland (no herbs) well cooked, home cooked meals.
have lots of serves of safe proteins regularly through the day.

as I have previously asked, are you taking Vit D3? It is your best bet to help reduce inflammation
If you are deficient in Vit D3, it will take a few weeks of high doses to correct deficiency and for the inflammation to reduce.

Also keep in mind that histamine/mast cell is not just about foods.
chemicals (both domestic and industrial), pollen, mold, perfume, dust, etc etc
and if there is a major trigger in your environment, it will make food reactions worse while you are inflammed.

crervin · Post by **crervin** » Sat Aug 22, 2015 5:36 pm

Gabes,

I am on minivacation with the family or I would be sticking to my plain foods. I was a taking the flinstones multivitamin but stopped due to a possibility of gluten. I am starting the vitd3. Will increase my dose. I wasn't even thinking about the current environmental triggers right now. Ragweed has started blooming. It always bothers me. Thank you, that info has really helped!!

Gabes-Apg · Post by **Gabes-Apg** » Sat Aug 22, 2015 6:12 pm

based on all of that do the best you can until you can return home.
and know that if there are multiple triggers going on, the antihistamines will have limited scope to work until you can get back onto the bland eating plan and reduce enviro triggers.

re the Vit D3, when there is mega inflammation you can take 7,000 -10,000 iu per day
(no multi will have close that level)

using magnesium spray will also help reduce the histamine inflammation and optimise use of the Vit D3 in the body
a magnesium spray is the best option versus taking oral magnesium.

to help things, for now try to avoid other triggers;
cleaning products, hair dye, gas fumes, perfume, pollution, doing tasks that involve dust etc

drink lots of water

if you have a Vit D3 deficiency it will take 8-12 weeks of high doses to correct that deficiency so it will take a few weeks of reducing triggers, taking antihistamines, and taking the Vit D3 for improvement to happen. be patient and stick with it,