Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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New Around Here, Lots of Questions

Discussion in 'Mast Cell Disorders/Mastocytosis' started by yeswehave8, Mar 18, 2017.

  1. yeswehave8

    yeswehave8

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    Well, not exactly new... I joined years when I started working on a methylation protocol.

    I have a lengthy history that I won't completely unburden here at once. The big issues lately include advanced joint degeneration (with accompanying bone spurs and compression fracture) in my spine, also in my knees (sans the fracture, but joint instability), glaucoma, cataracts, liver enzymes bumping, chronic GI complaints (Celiac was negative, though I have all the symptoms), labile thyroid (high to low) with multiple nodules (goiter)... asthma & allergies, too. There is more, but I am trying to be sort of brief.

    Why I am here: First, it is worth mentioning that my eldest son (#2 of our 8) was killed by a drunk driver 2 weeks before Christmas. I know this plays a role. The few years leading up to that were also incredibly stressful (lawsuits, moving in elderly MIL, 2 kids leaving home... craziness) so whatever reserves I might have had were already spent. We still have 4 kids at home, and are doing all we can to make life as normal as possible for them. It is a struggle most every day. I am shattered, and yet I have no choice but to get up everyday and try to make our lives better for them.

    I have a history of multiple allergies since childhood, but pretty much ate what I wanted anyway and just took a daily Zyrtec and Singulair. Things had already been escalating, though, as late last year I had started reacted strongly to *something*... I would wake up, usually after eating out, with puffy eyes, runny nose, sometimes puffy lips. Sometimes I would notice itchiness and irritation the night before, taking some Benadryl helped, but I would still awaken looking beat up. I finally had another allergy scratch test done Aug 2016 by my ENT, who was trying to help me work out my chronic sinus issues and who also monitors my thyroid. I reacted to a LOT more than I realized but one that was popping out was pineapple. I often had a fruity drink on date night and the pineapple wheal was rather large. In between the test and the appt to actually discuss the results with my doctor, I absentmindedly had a mega mai tai. By the time we got home, I was in a histamine mess. Itchy throat, itchy ears, asthma. I took a bunch of Benadryl and then my nightly meds (including Zyrtec and Singulair)... I believe I had some prednisone, too, that I took as well. The next morning I was still quite puffy, too. The lightbulb went off and I visited my GP, who prescribed me an EPI pen.

    I did finally get into the ENT and he basically told me that I needed to just really watch my symptoms. He told me not to avoid if I did not seem to react, as the scratch test will sometimes pick up things that aren't "true allergies"... and remember, I reacted to a lot on the test, some things that I consumed regularly with no apparent reaction. He agreed that the pineapple was serious and was glad I had the EPI pen.

    My first full blown adult ANA was 18 days after my son's death. I was eating some fried shrimp and hush puppies, driving down the road. My nose was running, I felt congestion and I remarked to my husband that I wish the weather would break (it was rainy) because it made me feel so stuffy. By the time I got home, I felt I needed a breathing treatment, which I started. It was then that I realized I had hives in my mouth and that my throat had begun to close. I told my hubby something was very wrong, to call 911 and I self administered EPI. The ambulance took forever (15+ minutes) and I required more EPI in the ambulance. They also did what I now know is their standard, IV Benadryl and Solumedrol. By the time I got to the ER, my throat was STILL closing and I required a 3rd dose of EPI as well as more steroids (I was at 250 mg+ by then), more Benadryl (over 200 mg), IV Zantac and they gave me some Ativan (I think) to "calm down" because I threatened to get my own extra EPI pen if they didn't bring me more because my throat WAS still closing and they were watching the monitors and not watching me. I choked on an ice chip because I was losing clearance in my throat. I was terrified, I was sure I was about to die and they are watching the frickin monitors telling me to calm down. Ha, no.

    Making a longer story shorter, I made an appt with another allergy/ asthma specialist to get another opinion, since "watching myself" wasn't quite cutting it. Unfortunately, I live in a very underserved area and it was 6 weeks to get into him. I was unable to stay off antihistamines long enough to get the scratch testing done again, yet, though. We had a very mild winter, and by the time my appt came, we were in full blown pollen hell here. I reacted strongly the first time to all tree mixes, all grass mixes, dust mites, cockroaches, pretty much
    all the "environmentals". This is not new, I have known my whole life I am allergic to these things. I minimize exposure as best as I can, but it is impossible to completely avoid.

    On that allergist visit, he did order the adult blood panel RAST as well as RAST to all the "positive" proteins on the scratch test that were not on the standard panel. He also drew a V on my arm with a closed pen while we were discussing possible mast cell disease. I did a raised, red, puffy V on my arm where he did this... weird. He also checked my tryptase and IgE levels. ALL came back negative (less than 10) and my tryptase and IgE were normal. I found this VERY frustrating. Even the shrimp, the blood work, completely negative. I am supposed to get another scratch test in April, if I can manage 5 days off of antihistamines.

    My second ANA came just 2 weeks ago. This time it hit as a sudden drop in BP accompanied by a racing pulse. I had been eating Doritos and drinking the first sugared soda (not HFCS) that I had had in weeks... again, EPI, but this time everything went so much faster. EMS was faster, IV meds on board faster, etc. I was released after being observed for a couple of hours and was given a steroid taper. A few days ago, I had a very similar reaction (no known allergic foods consumed) but I checked my BP and it was 204/105... I was too worried about having a heart attack if I tried the EPI. I did the steroid/ Benadryl/ Zantac as I had been instructed and called EMS anyway (my hubby was not here, or I might have had him drive me). In the ambulance, they had a hard time getting my BP, but it read 245/ 110 and my pulse was 140s. I was given more Benadryl and Decadron in the ER, and yet they still called this one a "panic attack". I did find that my K was quite low (2.9) and that it could have caused these symptoms, but you know how quickly we women tend to be labeled as hysterical and anxiety means they don't have to dig deeper. This last one, I felt very dismissed.

    So here I am. Dr 1 (who I happened to have an appt with the day after ANA #2) thinks it may be a mast cell thing, but has not offered any new testing to prove that theory. Dr 2 and I did not discuss it further, but I see him again in about a month. Dr 1 gave me a Gastrocrom script, but insurance does not want to pay and it is over $2300/ mo.

    After 2nd ANA, I put myself on an elimination diet. I stopped all grains, all the "positive" scratch test allergies and quit alcohol (red wine is my favorite, but I can certainly see times where I have reacted to it, even recently). That was 13 days ago. The "anxiety" episode happened even in light of all of this. I am getting to the point where I am afraid to eat about anything. I have done a lot of reading on HI lately (some here, some elsewhere) and I fit the profile. I am 45, may be perimenopausal and have had a LOT of stress in my life recently. Or is real allergies?

    How did you all figure things out? Is there any testing I should be asking for? Help me try to work through some of this, please. I just want to feel better and I want to be able to eat. :( Thanks in advance!
     
    Last edited: Mar 18, 2017
    Gingergrrl likes this.
  2. Basilico

    Basilico Florida

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    Wanted to send you some encouragement...it sounds like you have really been through hell lately and I hope you are able to find some answers.

    I can't help too much, but I wanted to ask if you tried Histame? My husband had a mysterious bout of histamine intolerance a few years ago (he would get some violent GI distress from anything that was fermented (the probiotics produce histamine). If he took Histame pills, he was able to tolerate those items in small to medium amounts.

    At some point, his histamine intolerance seemed to disappear. Still not sure what that was about. But those pills really helped him. I don't know if your reactions are too severe for them to help, but if you haven't yet tried them, it might be worth a shot.

    Also, he has had chronic sinusitis and general congestion for most of his life. He's always lived in places with high humidity (and we are in Florida now, so lots of humidity here!). When we started using the dehumidifier regularly and became vigilant to always keep the humidity in the apartment under 50% (which retards mold growth) his congestion disappeared. The dehumidifier also filters a lot of the crap out of the air like pollen and particulate matter. I don't know where you live, but have you tried a dehumidifier? Another thing that might make life a little more bearable until you can sort things out.
     
  3. yeswehave8

    yeswehave8

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    We have a dehumidifier, but it lives in the basement. I am SC, so I know ALL about humidity. ;) I do run the AC a good bit, which also dehumidifies somewhat. I also have recently purchased a fairly large air purifier. Not sure how much it is helping, yet. I, too, have had cycles where I seem to react to things and then it disappears, but never to this extreme. Not discounting this part at all, either. We had significant flooding from Hurricane Matthew and my basement is still not completely cleaned out from that.

    I guess I missed mentioning my genetics, but I do have quite a few significant SNPs including being homozygous for MTHFR C677T. That is why I was methylating. I thought I was pretty stable on my B complex and the MSM I take, but just recently bought some more B12 lozenges. I AM positive for the polymorphisms that contribute to lower than normal DAO levels, but I just discovered this the last few weeks. I bought the Umbrellux DAO and got it in the mail today, but I am a little worried about taking it for some reason. I have felt on edge of a reaction most of the day and I suppose I am worried it could put me over. I admit that may be paranoia at this point, but I have learned to be leery of most things I put in my body.

    Thanks for the encouragement!
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    @yeswehave8 I wanted to reply to this when you first posted it but was not able until today. Am hoping this helps and I really relate to what you shared from my experience in 2015.

    I am so sorry to hear this and I really have no words except that I hope that with time, your son's memory becomes a blessing for you and your family and the pain of the loss will dissipate.

    I would absolutely avoid shrimp and ALL fish. I am at the point now that my mast cell doctor allows me to eat all normal foods but there is a small list of things to completely avoid and all fish is on the list. Fish (unless literally caught from the sea and eaten in about 30 min) has too high of a histamine build-up. For now, I would avoid fish and all processed/deli meats (that is not fresh or cooked and then frozen).

    Allergists will want to do RAST and traditional testing but I would see a mast cell specialist if it is humanly possible, even if you have to travel to see them, since you have had two severe episodes of ANA.

    IMHO, it would be very risky for you to be off of all antihistamines for 5 days at this point.

    Doritos have a yellow food dye (yellow #5) called "Tartrazine" and this dye caused the worst allergic reaction that I have ever had in my life. In my case it was in a piece of candy not Doritos but I would avoid food dyes at all cost right now until you know what it going on.

    I agree w/the doctor who thinks this is mast cell related and can't imagine how it is not with what you've shared.

    There is a lot of trial and error involved but I would ask to be tested for methylhistamine (blood and urine), prostaglandins D2 and F2, and Tryptase as a start. You will want to find the right combo of daily maintenance meds plus have a rescue med (separate from the EpiPen). Gastrochrom did nothing for me and is VERY expensive like you said and insurance did not want to cover it. When I switched from Gastrochrom to Ketotefin (after finding my MCAS specialist), it was life-changing.

    I also eliminated 3-4 other meds that were not helping me and added Atarax as my rescue med since I'd had a horrible reaction to Benadryl. I was in the hospital for a week in 2015 b/c I'd reached the point of having Stage 2 ANA to all food but water. Am basically in remission now (but avoid the foods that my doctor told me to avoid). But I can eat close to anything I want, can eat in restaurants again, can dye my hair again, eliminated several more meds that I no longer need, and no longer react to smells- even very strong ones.

    I religiously followed the SIGHI diet (from Switzerland) for about 1.5 years which is low histamine and ranks each food item from 0-3. In the beginning, I only ate foods that were zeros to be safe. I still do not eat any artificial FD&C food dyes and all my meds are dye-free or compounded (in case this is an issue for you).

    Hope this helps and it can get better, even though I did not believe it at the time, it was so horrible.
     
  5. yeswehave8

    yeswehave8

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    It does, thank you. I had already hit on the yellow dye, but thanks for mentioning that. I am not 100% convinced it did not contribute to the first one, as I *rarely* eat hush puppies and they were abnormally yellow... yes, cornmeal, but very yellow.

    KNOWN allergies per scratch test includes shrimp, fish (tuna I believe is what they use), bananas, pineapple, onions, beef (I eat without issue), corn, peanuts, tree nuts (pecan), and potatoes. I feel like I am forgetting something. :p I was told not to avoid but to listen to my body. That method did not work for me at all, obviously. My shrimp/ fish fear is SO high now... I had a lesser reaction to smelling seafood in the grocery store. I live not far from the coast, so it is EVERYWHERE! I have eaten out just once since my reaction, and that was for my eldest daughter's birthday... and I called ahead. It was just ok, too, cause it was literally a steak cooked in foil. Blech!

    I can tolerate some histamine foods so far, at least I seem to. Quantity seems to make the poison, which makes sense. I have had a LOT of food anxiety, which is so weird for me as a "former fat chick". Heck, I have anxiety in general right now... my anxiety has anxiety! :( I sometimes feel myself trying to decide if it is a reaction or if it is anxiety... that part REALLY sucks!

    Do you see a hematologist? When I search for MCAS docs, it gives me some hematlogist/ oncologist about 30 mins away. I may be able to have my GP or even ENT check some of these labs. My tryptase was completely normal, btw. Level was 4 and then 3.1 after my second ANA. Not sure what that even means anymore. *sigh*
     
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