Help. Can't eat without terrible reactions. Why?

Hi, everyone. I'm sitting here in the hospital for the 85th time in 7 years, with the same problem: I can't eat without my body going crazy. I have every doctor in the country stumped, and I'm at the end of my rope. I've had it. I eat and I get cold, shake, have dry heaves, heavy chest for breathing, flush yet my feet turn blue, feel lousy, feel faint and weak. My eyes may go dry, I may itch, I may sweat. Does anyone else do this or know what this could be? I've had mast cell disease ruled out by two of the top masto docs in the country.

I hope to hear from you.

Report post

10 replies. Join the discussion

Hi Linda joy xx

Who excluded mast cell disease in you hun ? There is a condition called idiopathic anaphylaxis which is diagnosed when all causes of anaphylaxis are excluded .
Anapahylaxis - where there is no allergy to explain it - have set of tests
1)histamine based conditions - mastocytosis , mast cell activation syndrome
2) kinin based - heridatory angiodeama , which is due to a component of an immune process called compliment being missing , causing constant cascades and swelling due to a product called kinin being over active . the test for this is a compliment traditional pathways level - c1 esterase is missing or not working . Good treatments exist ;-)
3) autoimmune- several autoimmune conditions give mast cell activation - hashimotos thyroiditis , adrenal autoimmunity, amiloyditis , lupus. if these are found treating it will settle things down xx

Failing this 2 other conditions can mimic mastocytosis . these are
carciniod syndrome - which is very slow growing cancer , which puts out several hormones - histamine, serotonin , adrenaline . the tests are a 24 hour collection of urine for 5-11ha or blood for chromataogranin a . It is found with a scan with ocretide which shows it and it can be removed and chemo used. the survival rate is 85% at 5 yrs .
and
Pheocryocythoma - which is non cancer mass in the adrenals which gives out adrenline . its tested for with a 24 hour collection of urine for cateclamines and or a blood sample taken from a line placed 4 hrs earlier xx It can be found with an mri . And removed with certian meds in place ;-) with a complete recovery xxx

I am diagnosed with idiopathic angiodeama . i dont have systemic mastocytosis , mast cell activation is not diagnosed in the uk, I dont have an autoimmune bar diabetes and I Dont have hereditary angiodeama and we tried the meds to make sure . i am on a mix of h1 , h2 , singulair and nasalcrom. i had anaphylaxis- idiopathic as well - every 3 weeks or less for 2.5 yrs . I am now much more settled. i had 13 month break from my epipen until febuary . i have symptoms daily but i manage them the majority of the time. i have 2 conditions alongside this - diabetes type 1 and addission - not working adrenal glands which also brings symptoms xx

I hope to hear from you soon xx
jose

Report post

Hi, Josie. I know you from one of the other support groups. I don't know if you know me or not. Lindajoy? I have Addison's, as well, and am on one of the Addison yahoo support groups. I've been on the mast cell forum for years now, too. I have read your posts. I'm glad to hear that you're doing so well now. Thank you for all of your suggestions. I really appreciate the information.

As far as mast cell goes, I've been tested by both Dr. Castells and Dr. Weiler, both ruling out any time of allergic response as the cause of my symptoms.

I've also been tested for the hereditary angioedema, negative.

As far as carcinoid and pheo go, well, I've been thoroughly tested for both, but I'm going through the testing again as I have an immunologist here at the hospital (I really liked him--he was a thinker outside of the box) who said my symptoms "scream of a neuroendocrine tumor". So, we're doing the blood and urine again. I've had the carcinoid octreotide scan done twice, and my thyroid tumor always lights up, but I've been told that that can be normal and so has been dismissed. We'll see. My chromogranin A has been high twice, but because it's been normal, too, it's been pooh poohed, as well. Ugh.

Well, take care. I'm glad to hear from you.

Lindajoy

Report post

Hi Linda ;-)

Have your adrenals been tested for autoimmunity ?

I am resolutely negative on every test hun , but i definitely have angiodeama and anaphylaxis . So you may like me and a group of others have idiopathic anaphylaxis +/_ angiodeama . i have 3true allergies too low to be anaphylaxis causes . But a huge pile of triggers which are capable of bringing minor symptoms to complete anaphylaxis.

In mast cell disease , serotonin can be high , not carciniod high but high.

I dont quite understand no allergic response - by what definition . Ige allergy or ?? symptoms from the many- 100's of other ways mast cells can be triggered. In idiopathic angiodeama and anaphylaxis no source can be found for the anaphylaxis. When i was first introduced to the idea i found it incredibly hard to get my head around. But slowly i did . Your addissons itself being unstable can be your cause for mast cell symptoms . Now mine is more settled i am shocking less xx low steriod levels are trigger as are low and high sugars and high cholesterol in me - from diabetes . The low steroids causes low blood pressure, pulse and sugar . is your addissions controlled .

You mention a thyroid tumor, that lit up with the oretide xxxxx If you have hashi motos thyroiditis that would be atrigger for your symptoms xxx

I think you would benefit from coming to the yahoo idiopathic anaphylaxis forum .
http://health.groups.yahoo.com/group/iasupport/?yguid=444596746
candace, the lead has had IA for nearly 40 years ;-) Ill see if you pop up as I get emails ;-)

many many hugs
Jose

Report post

Hi, Josie,

Thank you for getting back with me. I'll try to answer all of your questions.

Yes, my adrenals have been tested for autoimmunity several times, always negative.

I've had lots of docs, including Dr. Castells, say that I don't even have IA, since I don't get hives, or have breathing problems, and no markers. Would the allergy markers be elevated, even if the cause of the anaphylaxis weren't known? I would think they would be, since I'd be in anaphylaxis, I just wouldn't know why, right? If so, mine are never, ever elevated. Lucky me. And, I don't swell.

My serotonin is never high, either. I think my body is just too lazy to show high levels of anything. Doesn't mean they're not there, I'm just too lazy to put forth the effort to show them on tests. Or, maybe shy? Ha!

My Addison's is pretty well controlled.

I've been tested quite a few times for hashimotos thyroiditis. Negative (of course).

They continue to shove the beta blocker down my throat. Today, I took it, and an hour later, I felt angry and hot, my bp was 134 or 143 over 90 (I usually run 90's over 60's or 106 / 60). My nurse said my bp was fine. I had to tell her it wasn't, not for me. "Oh, it's not?" AGHHHHHHHHHHH!!!!! My gut was tightening up. My heart felt squeezed, but I knew to expect that, so I wasn't too concerned about that. I felt very, very shaky. I couldn't sit down. I wanted to go out and walk, walk, walk. The doctor asked about anxiety, the hospital pharmacist said my symptoms weren't normal for this medication (oh, and I've had an aura migraine all day, which I haven't had for years, but that's not connected either, according to the docs here), and they looked at me as though I'm crazy, all the while talking about starting SSRI's. I got dressed and told my husband that I'm leaving, so he'd better find somewhere to take me.

In all honesty, Jose, I'd rather be at home, scared to death and so sick, I'm near death, than in a hospital where I'm treated like I'm crazy. At least I believe in me, so when I'm sick at home, I have total support from those around me---me! :)

I'm not making light of this. It's just, I lost it this morning and cried and cried, then with the medication I got angry, so now I'm feeling hopeless and I give up. That's how I feel. They all think I'm crazy now, so I absolutely don't know where to go or what to do anymore.

With both Dr. Castells and Dr. Weiler saying this is not allergy, and every other allergist I've seen saying the same thing (the one who saw me here a couple of days ago was very good, spent a lot of time with me, and really listened, so I trust what he's saying), I really don't think this is anaphylaxis. Plus, I've had three anaphylactic episodes during my lifetime (two to foods and one to wasp stings), and these reactions I'm having don't look anything like those.

Again thank you for writing and suggesting. I'm just feeling so hopeless right now, it's not funny. I keep asking to talk to pastoral care, but no one comes. I order my food (tofu) and it never shows up. I tell them symptoms I'm having, and they don't listen. I give.

Take care and keep doing well, Jose.

Linda

Report post

Hi Linda,

The allergy markers arent raised - as in IGE , with triggers . i want you to talk to Candace on the forum i sent you , she has been around for 40 yrs in this and I think she will help you . Your BP is low - that is a criteria for anaphylaxis alongside dizziness . You say you don't have breathing probs but describe a heavy chest .

Have you been investigated for heart issues, low pulse ?

If you have funds, get a home blood pressure monitor and check your blood pressure when you feel unwell and at random times when you feel well .

Even though your addissions is well controlled hun, this could absolutely be addissions crisis -


Adrenals .- NON functioning – Idiopathic Addisions disease
Fatigue,
Lightheadedness upon standing or while upright,
Muscle weakness,
Fever,
weight loss,
difficulty in standing up,
Anxiety,
Nausea,
Vomiting,
Diarrhea,
Headache,
Sweating,
changes in Mood and Personality, and
Joint and Muscle pains.
Some have marked cravings for salt or salty foods due to the urinary losses of sodium.[
This is helpful . As on pale dizzy , low blood pressure , can’t sit up without jiddering sweaty mornings , I can see extra steroids may be needed . The crisis is known as addisonian crisis ;-

Characteristic symptoms are .
• Sudden penetrating pain in the legs, lower back or abdomen
• Severe vomiting and diarrhea, resulting in dehydration
• Low blood pressure
• Syncope (loss of consciousness and ability to stand)
• Hypoglycemia (reduced level of blood glucose) ( not relevant due to diabetes )
• Confusion, psychosis, slurred speech
• Severe lethargy
• Hyponatremia
• Hyperkalemia (elevated potassium level in the blood)
• Hypercalcemia (elevated calcium level in the blood)
• Convulsions
• Fever

What dose of hydrocortisone are you on daily hun ? has flucortisone been tried at all for your low BP .
Was your BP high ever. Why the beta blocker hunni xxx i suspect it is dropping your pulse .
Ask the nurses to check your blood sugar when you feel unwell as in addisons insulin is released randomly. if its low, I would check it regualrly every hour when awake and 2 hrs at night and see what your level is .

We will work it out hunni xxxxx
Jose

Report post

Oh, Jose, I wish you were my nurse right now! Unfortunately, I've been moved to a new floor since Saturday, and the nurses in this new area just don't believe in all that is happening with me, even though I had a reaction right in front of them.

Anyway, I've been in Addison's crisis several times. Not fun!!! What I go through after I eat resembles the crisis in that I have the shakes and tachycardia and some ab and back pain, but from there, my symptoms to each are very different. With Addison's, my back pain becomes full body pain that is excruciating. I nearly died in 2009 from that crisis. It was horrible. I had the pain down my legs, the graying of vision, nausea and near vomiting, severe anxiety, low bp, tach. With these episodes, I have high bp. Seems more like autonomic dysfunction to my docs.

I guess they're going to try me on a clonodine patch tomorrow. Oh, there are some who think this is porphyria. I joined a group for porphyria people, and they said when their disease is acting up, they react to foods like a mast cell person would. I'm amazed. I did not know this. Do you know much about porphyria?

I have truly had a horrible day. I sat and cried for an hour this morning. I have just had about all I can take. My husband has been in tears several times today, as well, so we're both at the end of our ropes.

What's frustrating, too, is the disbelief by anyone here that I can react to the smallest doses of medications. They just don't believe it, so I'm being looked at like I'm half crazy most of the time. I want to crawl in a hole a great deal of the time.

Anyway, I soooo appreciate your words to me that "We will work it out." I don't feel alone with you on my case. Thank you, thank you, thank you.

Hugs to you, dear,

Linda

Report post

Hi Hon,

I think porhoria is a good idea to check for . I would also ask to have you blood sugars checked as it is happening. pancreas pheos cause high insulin production .

I understand about reacting to tiny doses hun. Sometime I can sneak new meds under my monkeys radar, sometimes I can't .

Hold on hun , i have been in the disbelieving ward hun xx one ward called psych on me my first summer of symptoms . the second I was crying - addissons . the 3rd I told them to refer me - now my notes say i am sane, its defintely physical - do your bloody job medics ;-) oh yes, addisssions confirmed this time and treated- im like I to;d you i am not making this up. i agree with you about the pain and low blood pressure in addisions crisis , agony and I cant sit up without passing out

Then i found docs who got it andgot me xxx

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1127427/bin/thah2499.f2.jpg

many hugs xxxx
Jose
This is from a paper on porphuria xxxxx

Report post

I was just reading your post and was wondering how you are doing? I understand completely your reactions to small dosages of meds. My docs also look at me like I am crazy or a problem patient because I refuse to just take anything that they give to me! I know how my body feels and reacts to what I take, even if they say the reactions are not "usual" for that type of medication. I have all but given up on the medical community. They don't have a clue what they are doing. And when they can't find the answer they start to say your crazy or it's all in your head. I was also on an SSRI and totally will NEVER take them again. They may help some people but not me. I felt so out of my head that I was just praying that the med would get out of my system so I could be me again. I hated it. My heart goes out to you...it really does. My situation feels hopeless all the time and I know how it feels to just want help and no once can give it to you and then you reach the point where you feel like no one wants too. So for me, I sit at home and have a severe episode and want so badly to seek medical help, yet I know there is no medical help!!! So I just sit alone and pray and cry and just hope I get through each day. Grateful for what I do have and praying for a doc or an answer to help me get back to living life. If you want to talk anytime just msg back. I came here today looking for encouragement and inspiration from others who are also going through similar trials. Even if we don't have the same ailment we are both needing support and answers that are so hard to find at times :(

Report post

Hi Crystal mummy,

I hope today is an ok day for you . i wanted to help you as there are doctors who understand this condition. I would like to chat to you about your symptoms and things you have reacted to even in tiny amounts. Most doctors see only allergy as capable of producing these reactions and it just isnt true. If you would like to chat I would love to. If your would prefer it to be private them freind me and we cna chat in messages xxx

If you can have look at my journal - https://www.inspire.com/josie75/journal/mast-cells-and-related-conditions/ xxxxx
huggles
jose

Report post

Oh, Crystal Mommy, I'm so sorry for you. You sound like me in that, you know there is no help out there in the medical world right now that you can see, so you just sit and suffer. Even when I'm hospitalized, I know I won't be helped and I just sit there, every day, wasting time and space, not getting any better, not finding any answers.

If you want to email me, please do. I'm at poetess1_26@yahoo.com I may not have any answers for you, but I sure can understand and care when it seems no one else does.

Actually, there are a lot of people here who do. I'm just one of them.

You take care and please, email me. I would love to talk with you. I see Jose would like to talk with you, as well. She's so knowledgeable. Maybe she can come up with some help for you.

Hugs,

Lindajoy

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Discussion topics

Community leaders