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Undiagnosed immune reaction to eating protein
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Undiagnosed immune reaction to eating protein

Hi All, I'm 46, female with joint pain, swelling and kidney pain, malaise when I eat most protein. This seemed to be triggered by a nasty virus with a sore throat and fever about 2 1/2 years ago. Around 12-hours after I eat ANY type of meat or seafood, my hands and feet get very painful, swollen, redness and stiffness. Feels like my hands have been slammed in a door.  I also can feel swelling and pain in my face, breasts at times.  The more I eat, the worse the reaction.  This progresses into usually 4-6 days of misery and sickness, which only prednisone or time away from protein helps. I was able to tolerate milk and soy protein last year but now cannot.  Just a few weeks ago, living on only egg whites and plant protein I have started to have all symptoms of B12 deficiency and not enough protein intake. I am now waiting for that result and have started on B supplements. I started to increase intake of protein via plant based protein powder. My problem is that now I seem to be having the same reaction to this soy-free plant-based protein.  I've seen so many doctors and specialists I can't count. I have tested positive for some immune complexes in my blood and low platelets but that's it. My doctor is acting like she believes it is psychosomatic, but then ordered a bunch of blood tests,which they haven't called me back about yet. My allergy/immunology doc has referred me back to my general doc.  I can't get enough protein without this big inflammatory response.  My ears are ringing, my hair is falling out, and my vision gets worse by the day.  Im also feeling scatter-brained and tired all the time. I'm starting to feel depressed and want to just curl in a ball but I have kids to take care of.  I'm tired of not knowing what to eat, what to do or who to talk to. Does this sound like something any of you know about?
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1530171_tn?1362547225
Hey Flickflacka.

Welcome to the forum.

I'm so sorry that you are going through all this.
It is disappointing that no doctors after all the investigation & testing  have come up with any answers to help you. Psychosomatic my "BLEEP"!

You have been tossed around like a hot potato, while your body is
becoming more and more deficient in life-sustaining vitamins , nutrients
and macro-nutrients (proteins and amino-acids)
This is an extremely serious health situation, which soon will become a crisis, if not addressed right away!

If I were you, I would go ASAP to a Naturopathic Doctor who is experienced in nutritional IV therapy.
The nutrients in the IV solutions are absorbed directly by your cells without having to go through the digestive process.

You are likely suffering from Leaky Gut Syndrome, where intestinal permeability is allowing unwanted larger molecules (usually undiagested or
partially diagested) to enter the blood stream. The immune system considers these as invasive since under normal conditions are not present in the blood and it triggers an immune reaction.
Life is never the same with LGS , unless it gets corrected.
Yet conventional medicine (I'm appalled)
does NOT consider LGS as an "established" diagnosis and should this indeed be the case for you, this is the reason you are (unnecessarily) suffering so much.
There's a simple urine test available for Leaky Gut Syndrome: mannito/lactulose test or PEG

There are other possibilities, like low stomach acid, low enzymes, H. Pylori
infection, ammonia toxicity in the G/I system, Candida, kidney and/liver dysfunction,magnesium deficiency and many more, however most of these are inter-connected to each other and to leaky gut as well.

I'm certain that some of the above have not been ruled out, or the testing was inadequate/flawed.

Please let me know if you need any more details on anything at all,
however, my comments and remarks are not intended as a replacement for medical advice.

Blessings.
Niko

PS. Sorry about my ranting, but it is hard for me to understand
and accept the degree of Dysfunction  and Incompetence in our so-called "Health Care" system!
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Wow, thanks Niko,
   You really seem to know what you are talking about, and it makes sense.  I really appreciate your reply.  It turns out I do have B12 deficiency and have started on sublingual B12 today.  I also now have mild hyperthyroidism and they are going to recheck these labs in a month.  I am scared about what you said about this becoming a crisis and I plan to find a naturopathic doctor in my area(florida). Could a nasty virus have triggered LGS? I know I should now probably see a GI doctor but I am now terrified of invasive tests and I have terrible allergic reactions to IV's, even just with saline only and no medicines delivered.  
   That said, I have to do something about it and about protein.  I'm getting 20 grams a day and I know it isn't enough.  You have given me a lot to think about, and the hope that maybe some day I can tolerate meat again.  I will be making some calls Monday morning.  Again, thank you so much, and I will be in touch!
Jo
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1530171_tn?1362547225
HI Jo.

Your B12 deficiency has 2 possible causes.
1. Low stomach acid (* highly suspected in your case) causes a deficiency in Intrinsic Factor, necessary for vitamin B12 absorption.
2. Inadequate B12 sources from diet (affirmative in your case).

You will do better with Methylocobalamin B12 which does not need conversion
AND you will also avoid nervous system  Methylocobalmin B12 deficiency-which does not show on the standard MMA test.

Leaky Gut
Yeast imbalances, candida Infection, excessive sugars and carbs in the diet,
gluten sensitivity,stress, viral-bacterial-parasitic infections,
medications, alcohol, transfats, low gastric acid, toxins, are all possible factors in  Leaky Gut Syndrome to my opinion.

I'm glad in a way that you won't see a G/I doctor (at least for now), as I think the simple urine test for LGS (as I mentioned in my previous reply) might serve you much better at the present time, than opening a Pandora's Box by seeing the G/I Doctor.

It is best if you work with a Natural health professional like an ND ,as you mentioned.

On your own you can self-test for:
Candida (saliva test),
Low gastric acid (baking soda burp test OR the Betaine HCL challenge)
Not diagnostic, but indicative enough, so if  positive, considering your
symptoms and condition, they might be as a good as diagnostic!

Have you  tried Undenatured whey protein powder?

Unlike casein, whey contains cysteine rich proteins: alpha-lactalbumin, beta-lactalbumin, serum albumin, lactoferrin and immunoglobulins - generally refered to as "lactalbumin" that remains soluble in whey after separation from casein.

These proteins are easily digestible and for this reason earned a reputation of an effective protein supplement and one of the best ways to raise Glutathione (the Master Antioxidant) production.
If you go to pubmed  dot  gov and search on ‘glutathione’, over 80,000 articles are listed! Not a typo!

It is worth a try and I wish I lived close to you and give you some, as I buy it
wholesale/bulk from a producer in Quebec.
It MUST be undenatured with no additives and no flavoring
and you cannot use a blender or heat! It will destroy it's delicate chemical structure, if you do. Just use a mini whisk when you mix it in a natural vegetable/fruit juice of your choice and tolerance.

I hope you consider this and if you do, I hope you can tolerate it!

Please stay in touch and let me know how things work out for you.
If you do have ANY questions, do not hesitate to ask .
I'm quite resourceful and well "connected".

Blessings.
Niko

PS
You may message me anytime. if you prefer.
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1530171_tn?1362547225
Sorry I forgot this:

Hyperthyroidism would be the last thing I would suspect, but I guess it is possible.
Here's another explanation which sits better with my analytical medical mind
lol!
--Hashimoto's and Hypothyroidism often can exhibit signs and symptoms of Hyperthyroidism.
-- Ongoing Biological stress, very suspect in your case, does not support
  sustained hyperthyroidism and is more consistent with high cortisol levels at first and phasing into fluctuating with high- low cortisol and ending with low cortisol.
--- Thyroid hormone  conversion T4 to T3  is  inhibited by the high cortisol causing " T4 thyroid hormone pooling" in the blood as T4 cannot be used by the tissues (only T3 can be used but not always as it is subject to a few conditions) and the body response to the excess T4 is creating Reverse T3!!!

----This is also consistent with cases where there's low iron & low gastric acid.

--You're a good candidate for BOTH scenarios!

Confusing at first? It's OK. Please read on.

What type of thyroid tests did you have?

If you had serum T3, T4 and TSH, they are NOT necessarily indicative of cellular thyroid function.

Under the aforementioned conditions they likely giving inaccurate results.
The ones to get for accurate cellular thyroid function are: Free T3, Free T4
AND Reverse T3!

Insist on these even if you have to pay, otherwise you may be in perpetual Limbo, going by inaccurate results.
Any treatment in this case would be wrong and potentially dangerous
and nobody would know much about it to be able to explain it!!!

By now, you must have concluded that I like to get to the bottom of things,
specially when it comes to important matters like Health!

Time to sign off!

Blessings
Niko
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Niko!
I don't know how to thank you!  The protein powder you suggested worked well for me, and I had no immune response to it. Also, it is way yummier that plant protein.
but, here's the best news:  I tested positive for H. Pylori bacteria, and will begin treatment for it today!  After more than two years of suffering, debilitation, specialists and tests, I actually have a diagnosis that is treatable! I had resigned myself to living like this, and you, my friend took the time to help me.  I wish I could reach through the internet and hug you.  I'm literally crying tears of joy. I might get to have my life back, and my kids might now have thier mom back, instead of me laying around feeling like hell all the time.  I am forever in your debt!
Thank you so much!
Jo
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1530171_tn?1362547225
Oh, my goodness, that's incredible!

I'm so, so happy for you. This truly justifies all the time I put in replying to member's questions.

Well, you're not alone, I'm shedding some tears of joy right now myself  and naturally have the urge to hug you, also.

I don't know about your proposed treatment, but certainly, some good quality probiotics are going to be helpful.
You can let me know what was suggested if you want.

Listen Jo, gotta run now, but, we'll stay in touch, O.K ?

God Bless!
Niko


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