Is it possible to have Mast Cell Activation Disorder and have a serum tryptase within normal limits?

No, this is my first time on the forum. Thanks for the information; I will check them out. I am in the US and just found this site today. Have a blessed day!

Does extreme fatigue & no energy go along with systemic mastocytosis?? Last bad (worst) attack I had was 08/28/16 & to this day I am extremely fatigued & have no energy. Cannot get through one day without a 3-4 hour nap & have had to take temporary leave from work because of this.

Yes. I have it off and on. Last week I ate chocolate and for the next 2-3 days I had to nap 5-6 hours after eating. Then I woke up one day and everything was fine. It's like nothing happened and I went back to work. It's very frustrating.

For me, it seems to happen in phases. During that time I am also sleeping 8-12 hours at night in addition to the naps.

I practice intermittent fasting and during my "eating hours" I eat smaller meals more often. This helps with after-eating fatigue because less histamine is released. Larger meals usually equal higher histamine.

I normally avoid caffeine, but during those times if I have to work I will have a few ounces. Oddly, Benadryl helps, as do my other H1 and H2 blockers. Seems counterproductive but it relieves the fatigue symptom.

Hope this helps.

Since my doctor put me on 10 mg of singular, 40 mg(2) and 400 mg of sodium cromyln(gastrocrom) 2 vials 2x day was doing very well. Had only 3 minor attacks so added quecertin and bromelin(?) capsules 3x a day and shot up to 90% cured especially brain fog, sleepiness, abdominal and asthma issues. My multiple specialist are amazed as well as my eye doctor. Thought something was wrong because everything blurry. Turned out my vision improved. I can't take Benadryl or atarax so that's why take other blockers. Never would have believed I could feel like a "normal" person. And I am 60+

May i ask what your symptoms were for them to put you on those meds

Here goes lol. These are not all at the same time but list has continued to grow and change with age

Migraines,asthma,sleep apnea, svt, multiple arrythmias, low blood pressure,raynauds,Sjorgrens,lichen sclerosis,photossensitivity,osteopenia,gastroparesis, irritable bowel with severe abdominal pain and vomiting,uncontrollable diarrhea at time,interstitial cystitis, primary biliary cirrhosis(which clouded the picture but is not active) and brain fog. Extreme tiredness years ago.  Any questions just ask. I am a very happy person but felt like it controlled me.Have felt amazing since being on meds. 

After reading everything you have makes my problem very minor I'm thinking  thats not what i have i thought erticaria only had to do with hives and itching but it's much more then that

Rose I have mast cell avtication syndrome. There are other classes where people get hives and itching..k

Ok thank you for letting me know 

Rose, look up "indolent systemic mastocytosis". Not all patients have high tryptase, or the KIT genetic mutation, or UP, and they are still classified that way.

I am still out of work 4 months later, still battling chronic fatigue, no energy. In low histamine diet, benadryl, claritin, ranitidine, singular, cromolyn, amphetamine specifically for energy, but so far no help.

Alot of testing is being done now so hopefully, dr can get me in the right track.

Thanks for your information.

Yo're welcome Brad, hope you find relief soon. If you've changed your diet and still aren't feeling well, it could be an environmental trigger (heat, cold, chemicals, molds, dust mites, scents, etc.) Have you tried removing some of those strategies yet?

Be careful about every ingredient in the foods you eat. Bread is considered low histamine, but it's almost 80% sugar and inflammatory. Store bought breads also have TONS of additives and preservatives.

Cook from frozen - "fresh" in the store = higher histamine, period. Eat (if you can) only organic, as pesticides are a source of trouble too. There may also be foods that are low histamine that you still can't tolerate. You'll have to figure out which foods are OK and which are not.

It's a long process. After 13 months of eating 10, low histamine safe foods, I can finally eat off-plan once in a while without major incident.

Amphetamines are BAD for us - that could be causing your fatigue as well - additives and fillers in your medications, and amphetamines themselves can cause mast cell degranulation. Most meds are off limits for us.

Good luck.

Hi can you help me. I have all the symptoms and have normal lab levels. My primary dr said I'm healthy I have no issues. . But I have the basic symptoms on a regular basis brain fog. Muscle aches and pains etc. but I just had an episode for about two weeks of severe facial flushing and rash. Palpitations. High bp. Anxiety. Feeling faint. Dizzy. Burning skin and I still do have that one. Freezing hands feet night sweats. I can go on they r literally every symptom. And I was tested for all sorts of hormone releasing tumors and they were negative. Lupus test was negative. Cushing test negative. Finally I got my dr to order tryptase and histamine they were negative but this episode was over . Thanks

I certainly feel your frustrations with this. Mast Cell Disorders do not always fit into the "cookiecutter" list of symptoms. My suggestion: Keep a diary of your day actities, including food intake, exercise, work load, sleep etc.for at least two weeks. A simple database chart worked well as a visual aid for my medical team. I also have resources for obtaining basic vital signs and blood sugar levels. Then YOU look to see if there is a pattern developing. I there is, then those symptoms will be the ones you want to focus on. I quicky realized diet was a huge problem, even though i was eating healthy according to all standards. Once i switched to a low histimine diet, I felt better and the more medically concerning signs and symtoms became apparent and revealed what was needed. I cannot stress enough how limiting medical tests/results can be. They are not a substitute for your own "sleuthing".