Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Fat, sick and nearly dead? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1330906848 Message started by DonnaT on 03/04/12 at 12:20:48

Title: Fat, sick and nearly dead?
Post by DonnaT on 03/04/12 at 12:20:48

Hello! I am a newbie to this forum, and so thankful to have found it. My name is Donna, and I live deep in the heart of Texas :)

I was always healthy, until age 33, when I suddenly became allergic to nuts. I have been carrying Epi-pens for the past 8 years, and never had to use one because I avoided nuts (Except during childbirth twice, apparently I reacted to the epidural)

Anyway, about 4 months ago, I started itching insanely, especially my hands and feet. These itching spells became more frequent and burning, like having my foot in a fire ant hill.

Then I noticed the weird hives. Not necessarily circular, but linear, and strange, and I noticed they often came after putting pressure on an area of skin.

I have been doing my own research (late at night with google at my fingertips) and have come to believe I have the dermatographism (hives) and it is due to too much histamine in my body (causing the itching)..

Not sure if I have histamine intolerance, MACD, or both, or neither. I have had years of baffling symptoms though, abdominal pain that waxes and wanes, migraines, degenrative disc disease, I believe it is all tied together??

I have also fairly low blood pressure (my docs never act like it is a big deal, they are always saying they wish they had my blood pressure) but it always concerned me that my blood pressure was low and my pulse was so high.

I have begun eating a low histamine diet for about 6 weeks, the symptoms have improved, however, I do recognize that stress seems to be a trigger for me.

One day, I wasn't eating much (scared to eat) and my blood sugar got real low. I am not diabetic, but know about hypoglycemia.

I kind of panicked, because I knew that I needed to eat, but was scared to eat anything because I wasn't sure of my triggers!A few hours later, I got bad itching and hives.

Same thing happened the other day, only the stressor was a mammogram and a dental appt in the same day!

I have not have the chance yet to read the posts in detail, so I may be telling you something you already know, but I want to mention it in case:

1) How to tell between Anaphylactic Shock and Panick Attack??

Maybe take your blood pressure??? The other day, I had a panic attack. After I had eaten something, I felt as though my throat were swelling, and it was getting difficult to swallow.

Suddenly, I began to get dizzy, my heart was racing, getting tunnel vision. I quickly took my blood pressure. I was astounded to see a reading of 137/85 which is extremely high for me. (I am usually around 100/60.)

So, I took it again, the other arm, same thing, it was high, I took it a 3rd time back on the left arm, and again got a higher than normal reading.

So, my conclusion was, that adrenalilne (from panic attack) made my blood pressure skyrocket. I had my epipen in hand and almost used it, I am very glad that I took the blood pressure first.

I have not asked the doctor yet, but I assume if you are feeling weird and your blood pressure is low, that would indicate anaphylactic shock, but if it is high, that would indicate adrenaline (false alarm, panic).

2) "Fat, sick and nearly dead" -- has anyone here seen that documentary?
The guy had chronic hives and histamine problems, and reversed it through "rebooting" his system by a juicing for 60 days. I am curious if anyone here has any comment on that, or has done it. I am going to try it, though probably not 60 days.
::)
thanks for listening!
Donna

Title: Re: Fat, sick and nearly dead?
Post by PJP123 on 03/04/12 at 14:50:12

I saw this documentary and went out the next day and bought a juicer. I did it for 3 weeks and I got better and better. It has been a juggling act. I too am allergic to nuts (hazelnut), but just tonight my husband put nutmeg in a bechamel pasta sauce and I'm bright red. He went out to the movies with my boys and I stayed in and was doing stuff around the kitchen and noticed my face gettting redder and redder. When he got home I asked what was in that sauce and he said milk, butter, salt, pepper, flour and I said that's it and he said, "Oh and nutmeg". Nutmeg did me in.

I was juicing back in October and lost 10 lbs. I had to calm my body down with this juice and eliminating sulfiets, salycilates, soda, anything with dyes, junk food.

I had the itching and was diagnosed with autoimmune chronic urticaria which is a mast cell disorder in and of itself.

I've had some bad panic attacks but in hindsight they may have been episodes of mast cell activation disorder.

I would definitely try the juicing. I would do apples, beets, ginger, kale, carrots. I did eventually stop because I felt like I was getting a sore throat from fruits because I also have Oral Allergy Syndrome. I'm allergic to trees, grass and ragweed.

Title: Re: Fat, sick and nearly dead?
Post by Anaphylaxing on 03/04/12 at 16:41:44

Welcome Donna but sorry you're here!

You've sorted so much out yourself, way to go!

Are you on any medications? Have you had your serum tryptase checked?

From my understanding, anaphylaxis may or may not have associated hypotension, but yes you are correct that an Epipen should be avoided when the BP is high. Some people do have reactions to triggers though that are tachycardia, HTN not hypo and all kinda of bizarre symptoms. A sense of impending doom often comes with these and can cause anxiety. So, if it were me, I would carefully check for any triggers that caused what seemed to be the panic spells.

Working on calming tactics too is equally important as stress like you said can be a big trigger.

i've gone on an elimination diet cutting out all that is processed and adding foods back in slowly to try and get my reactions under control.

I too was seemingly healthy until an anaphylactic event, but when I look back there were some signs like you mentioned.

Many raw fruit and veg are big OAS triggers for me so I puree a lot but need to cook them first. I haven't retried my OAS foods since my anaphylaxis/downward spiral.

Thanks for sharing your symptoms. 8-)

Title: Re: Fat, sick and nearly dead?
Post by Joan on 03/04/12 at 20:13:13

Hi Donna and welcome to the forum,

It sounds as though it would be a good idea to see a mast cell specialist if you haven't already. If there's not one near you, you might find an allergist who would be willing to consult the experts in Boston about testing you for a mast cell disorder and ruling out other possible causes of your symptoms.

Any stressor can cause a degranulation/anaphylactic reaction, including low blood sugar, if you have a MC disorder and you're not on daily preventative meds. I don't know if panic can bring on throat closing, but an allergist/immunologist would know.

Hope you can get some answers soon. If you post your location, someone might be able to recommend a doctor who knows something about MC disorders.

Title: Re: Fat, sick and nearly dead?
Post by Aggiegirl on 03/13/12 at 04:02:18

Welcome Donna - Just a thought - everytime I go to the dentist it makes me sick - I think it's the stuff they use to numb your gums. So maybe it wasn't just the stress of going to the dentist, but perhaps some of the medications they use? Take care and hang in there!

Title: Re: Fat, sick and nearly dead?
Post by Joan on 03/13/12 at 10:14:41

Thanks for posting the video. Here's the link to "Fat, Sick, and Nearly Dead."

http://www.hulu.com/watch/289122/fat-sick-and-nearly-dead

I love documentaries, and this was really well done and inspirational. I watched it on hulu, so could pause it and do other things and come back later. The last part about the truck driver was incredible.

Am NOT recommending anyone to try anything drastic without consulting a doctor first. Some people would have to make a change like this slowly or risk triggering.

Title: Re: Fat, sick and nearly dead?
Post by Lisa on 03/13/12 at 14:58:27

A true mast cell disorder can not be "cured" through diet. It is a genetic disorder of the mast cells. This is why they behave badly. This is regardless of the form of the disorder be it SM or MCAS.

However, it's very possible to improve your reactions through diet. By reducing the triggers, by finding a means to calm down the reacting, great improvement and stability can be attained. However, this is not a cure, it is a relief.

If someone acheives a "cure" and it remains permanent, then this was not a true MC disorder, but some kind of metabolic difficulty with some kind of inability to process histamine is ocurring.

The new WHO MCAS consensus document addresses these various issues and does an excellent job of defining what a MC disorder is and what is involved in treating it.

Lisa

Title: Re: Fat, sick and nearly dead?
Post by Joan on 03/13/12 at 18:53:58

I agree with Lisa. To clarify, the two main characters in this documentary had auto-immune problems that were types of urticaria, not mast cell disorders. I don't know if the diet they used would help symptoms in a mast cell patient, but it apparently was a lot healthier than their former diets. The film did clearly show the health complexities that can occur when weight and diet issues are added to an underlying disorder.

Title: Re: Fat, sick and nearly dead?
Post by PJP123 on 03/14/12 at 06:50:51

I watched this just when I was in a terrible flare still not knowing what was wrong with me (for years). The guy in the movie has autoimmune chronic urticaria. This is what I was diagnosed with. It's a secondary mast cell activation disease.

Title: Re: Fat, sick and nearly dead?
Post by PamH on 03/14/12 at 07:51:45

Donna,
I have these kinds of reactions to salicylates (in toothpaste and numbing meds used at the dentist). Have you looking into salicylate intollerance? They cause the mast cells to open up.
Pam

Title: Re: Fat, sick and nearly dead?
Post by Anaphylaxing on 03/15/12 at 12:22:56

Finally watched this movie! Enjoyed it. Interesting concept. 8-)

Title: Re: Fat, sick and nearly dead?
Post by vicmjones on 10/12/12 at 17:58:10

I actually got worse after watching this movie. At first I thought I was cured because I had so much more energy while eating so many fruits and veggies. But then I started itching horribly, having horrible headaches and of course diarrhea. I think the concept is good, but what I did was ate 100% raw foods for several months. I realized by doing this that I react to most fruits (raw only) and all nuts. It is a little depressing for me to know that I can't even eat a healthy diet anymore. I can eat ice cream and candy but not fruits and nuts.

Title: Re: Fat, sick and nearly dead?
Post by Anaphylaxing on 10/12/12 at 20:40:08

Sorry about that

I hear ya. I have to cook most fruits and veg before eating, but I do ok if they are cooked. Maybe you can't eat them either way.

I'm IgE allergic to nuts so haven't retried those.

Hope you're feeling better now!

Title: Re: Fat, sick and nearly dead?
Post by vinnie101 on 10/19/12 at 02:22:02

Don't think this has been shown in the UK, but I would'nt be happy just eating raw fruits & veg, I can just imagine what that would do to my innards!!!(yuk).
I just wondered whether you'd tried any relaxation techniques? They can help big time if you find yourself in situations that cause you anxiety.
Good luck, & hope you feeling better now.

Title: Re: Fat, sick and nearly dead?
Post by Jennifer R. on 06/17/13 at 12:28:55

Hi there DonnaT! I was supprised to see someone mention Fat sick and nearly Dead because as a couple have pointed out, many believe that juicing isn't going to cure this disease or if it does, you must not have had it in the first place.

I don't know about everyone else but I don't believe enough is know about this disease to make a statement like that. I personally am getting a juicer in the mail in a couple days.

My reasoning is this...
I know what things I react to mostly and will be avoiding them, in fact juicing will HELP me avoid them since I mostly react to grains, meats, dairy. Most (not all) vegi's and fruits I am ok with, those that I react to I simply will not juice.

My Masto is presenting in my intestines and stomach, juicing will give my poor torn up, upset digestive tract a rest.

Juicing with a masticating juicer allows you to get an encredable amount of nutrients into your body, I don't do well when I take in too much fiber so I could not possible eat enough fruits and vegi's to ge the nutrients I need and I feel juicing is a better way to get your nutrients than a pill.

While the body is resting from having to digest as much it can expend the limited energy many of us have on repairing other damage.

Also if Doc's like Doctor Miner in OK City believe that you can come off your medications once you stabilize and your body is no longer reactive, basically resetting your immune system where it should be, thus allowing some (not everyone) to live a relativly normal life. Then why can't juicing assist towards that goal. Saying someone must not have the disease in the first place just because they no longer have reactions is like people who say someone must not have really had cancer because they are cured.

Title: Re: Fat, sick and nearly dead?
Post by PJP123 on 07/02/13 at 16:23:52

I did initially get better with juicing when I was reacting to every food I ate. After a while though I was getting a sore throat from Oral Allergy Syndrome from apples.

I am diagnosed with autoimmune chronic urticaria and it is now classified under Mast Cell Activation Syndrome. So yes this is evolving. I couldn't tolerate H1 and H2 so onced I stabilized from using them, I now no longer take them.