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I'm back! This time with (maybe) an autoimmune disease. :/


PamH

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So, sorry, this means you do NOT have the autoimmune conditions you were worried about?  If so, YAY!!!!!!!!!  And if that is the case, crazy how very sick eating against our biological norm can make a person, hey?

I would think I do NOT have PMR for sure.  I do know there is literature that says you can have normal test results and still have PMR but it is rare. The Giant Cell Arteritis is probably ruled out when you look at the overall test results.  Yes, eat for life.  Wow

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I'm nearly completely off Prednisone (my goal for this year is zero) and I've been able to achieve this just with the Whole30, no AIP required.

I've also completely gotten rid of my arthritis with the elimination of grains and dairy.

 

Is there something you react to that's making you do the AIP over a regular Whole30?

This is SO exciting to me. I had brain surgery three times last year and I also have been struggling with what the rheumatologist calls "undifferentiated connective tissue disease". 

 

My complements, CRP, and other inflammatory markers have been up for about five years. They said that I am like a pot on the stove waiting to boil over. Once it boils over, we will know exactly which autoimmune disease I have. But! That doesn't work for me. I don't want to boil over. 

 

I am on Day 5 of my Whole30 and praying that this helps. I spent six months on Medrol, due to my surgery, and am ready for this to be over! 

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I would think I do NOT have PMR for sure.  I do know there is literature that says you can have normal test results and still have PMR but it is rare. The Giant Cell Arteritis is probably ruled out when you look at the overall test results.  Yes, eat for life.  Wow

Giant cell arteritis typically is only in the elderly. How do I know? Because I was screened ad nauseum for it when they found my brain aneurysm. LOL. The only "true" test for it is to do a biopsy. I genuinely hope that's not the case for you! 

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This is SO exciting to me. I had brain surgery three times last year and I also have been struggling with what the rheumatologist calls "undifferentiated connective tissue disease". 

 

My complements, CRP, and other inflammatory markers have been up for about five years. They said that I am like a pot on the stove waiting to boil over. Once it boils over, we will know exactly which autoimmune disease I have. But! That doesn't work for me. I don't want to boil over. 

 

I am on Day 5 of my Whole30 and praying that this helps. I spent six months on Medrol, due to my surgery, and am ready for this to be over! 

 

It's not AIP, but you might find some of the recommendations for leaky gut are helpful to you. You may want to ramp up your bone broth consumption and if you can get them, Great Lakes gelatin and collagen. Whole30 made a huge difference for me with inflammation, huge.

 

You may find the Recommendations as well as the Rules give you better results: http://whole30.com/2015/01/rules-recommendations/

However you only need to comply with the rules to do a Whole30 :)

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It's not AIP, but you might find some of the recommendations for leaky gut are helpful to you. You may want to ramp up your bone broth consumption and if you can get them, Great Lakes gelatin and collagen. Whole30 made a huge difference for me with inflammation, huge.

 

You may find the Recommendations as well as the Rules give you better results: http://whole30.com/2015/01/rules-recommendations/

However you only need to comply with the rules to do a Whole30 :)

I have to stay low histamine.  Bone broth was not my friend last time I tried it.   :(   I will work on my gut, though.  I know I can take charge of this situation with food choices.  Thank you

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I have to stay low histamine.  Bone broth was not my friend last time I tried it.   :(   I will work on my gut, though.  I know I can take charge of this situation with food choices.  Thank you

 

Does histamine only develop after it gets cold, or does long cooking also generate it?

If it's just after cooling, you might be able to make tiny batches and drink/use it all.

 

Or just cook meat with bones in, I really love chicken wings and they get a lovely gelatin-ish quality when baked in the oven.

 

Not sure about gelatin and histamine, maybe ask your doctor.

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Giant cell arteritis typically is only in the elderly. How do I know? Because I was screened ad nauseum for it when they found my brain aneurysm. LOL. The only "true" test for it is to do a biopsy. I genuinely hope that's not the case for you! 

I doubt I warrant a biopsy, especially since the scalp tenderness and facial pain is tons better after leaving my vegan diet (FOUR days!) and a visit to the chiropractor.  I had a contrast MRI of my head in October 2014 that was clear.

 

I can only imagine I'm being seen as a hypochondriac.  I'm ready to just abandon modern medicine and go back to basics.  Seems smarter.   This last decade has been interesting.  

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Not sure about gelatin and histamine, maybe ask your doctor.

No doctor to ask.   :mellow:  The people I see are so very mainstream.  I'll do some research or maybe go to a histamine intolerance blog.  I'm not sure about histamines and bone broth but it didn't make me feel good when drinking it.  I could always go slow (not my style lol)

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You might want to revisit histamine too, since you've seen a lot of changes going off vegan.

 

I am actually not allowed to be vegan, I just won't absorb enough nutrients with my MTHFR, especially the B12!

 

You might want to hunt for a Functional Medicine doctor. I can't get one locally, so I have a naturopath and a conventional doctor, my doc was initially a bit funny about the naturopath and giving up gluten and things, but has been a little shocked at my health transformation, so he's generally supportive and he's excellent with my sinus problems. My naturopath has been essential though, for identifying and treating my deficiencies and getting me tested for MTHFR.

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You might want to revisit histamine too, since you've seen a lot of changes going off vegan.

 

I am actually not allowed to be vegan, I just won't absorb enough nutrients with my MTHFR, especially the B12!

 

You might want to hunt for a Functional Medicine doctor. I can't get one locally, so I have a naturopath and a conventional doctor, my doc was initially a bit funny about the naturopath and giving up gluten and things, but has been a little shocked at my health transformation, so he's generally supportive and he's excellent with my sinus problems. My naturopath has been essential though, for identifying and treating my deficiencies and getting me tested for MTHFR.

Ah, MTHFR.  My son is heterozygous for A1298C and C677T.  I just have to assume I am one or both.  Good point.  I do have access to a few alternative medicine MDs in the area.  

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Ah, MTHFR.  My son is heterozygous for A1298C and C677T.  I just have to assume I am one or both.  Good point.  I do have access to a few alternative medicine MDs in the area.  

 

If you've been eating vegan and you're MTHFR, you should really get some blood work done.

 

I need regular B12 to be able to regenerate my cells properly.

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If you've been eating vegan and you're MTHFR, you should really get some blood work done.

 

I need regular B12 to be able to regenerate my cells properly.

I had a CBC and Metabolic Panel run which showed lower protein markers, but everything within normal range.  I don't know my MTHFR status, but I have to assume I have something based on what my son's status shows.  He has Autism.

 

I was vegan for only a few months, but vegetarian (and sugar gorging) for close to a year now.  I think I can turn this around.  

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MTHFR deficiencies don't always show on tests, unless they know what they're looking for.

Lots of my results were "normal" or "in range", but collectively, they didn't make sense.

 

In tests, my B12 shows as normal, but they're measuring the wrong thing for people with MTHFR, as we ingest plenty of it, but can't convert it, so we're high in some biomarkers higher in the pipeline, but as we fail to convert, downstream we're low, or high in things that should clear out naturally. The Methylation cycle should have evidence it's working properly, at every step. For most people with MTHFR it's not and food alone is not always enough (as we still need to convert it and can't).

 

http://www.mthfrsupport.com.au/what-is-mthfr/

 

I like the chart best on this one http://doccarnahan.blogspot.com.au/2013/05/mthfr-gene-mutation-whats-big-deal.html

Mine was identified because of my homocysteine levels, they should not have been high when other things were high and low (evidence the machine was not working).

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  • 3 weeks later...

Hi,  I just started two days ago, and coming upon these chats are an amazing find for me!   I was just diagnosed with Auto Immune, and the tests are being read, hopefully to pin point what exactly I have.   I did not know there were certain foods to eat and to eliminate from my diet.   I just started Prednisone last Sunday, and I told the doctor twice, I did not want to take it.   I'm seeing a Naturalist in February for my first time, and hopefully will find a substitute for this med.  I do not want to take it.  It is suppose to be for just 3 weeks.  It's suppose to be the Diagnostic Tool for the doctor, and the Naturalist agreed (as I called him right away).   I was so fatigued, and today feel alert.  Pacing myself with physical things.   Pre-cooking some vegetables right now.....gee, I hope I can eat these.   I've got green beans in the crockpot, and beets boiling.  I see from the other posts,  Green peppers and Tomatoes are out.  I'm 63 years old. 

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Hi Martha :) If you haven't done a normal Whole30 before, start with that. You may not need the AIP.

Most people don't usually go without grains and dairy and these can be life changing for many of us (in addition to other gut disruptors).

You may find the Recommendations give you the best results as well as the Rules http://whole30.com/2015/01/rules-recommendations/ not everyone needs AIP, even with Auto Immune.

 

I'm a long time Prednisone taker (free completely for the first time this year after about 6 years solid and intermittent for 2 years after that).

It helps with severe inflammation and can dramatically improve your quality of life, but it's not a cure for anything.

 

For me, it helped me breathe enough so I could sleep lying down (chronic sinusitis), helped me recover from surgery and it helped me be able to work when I was very very sick, so I don't regret taking it. I do however regret taking it for so long at the same dose, as weaning off it was far more difficult than I expected as my body had become quite dependent on it.

 

If you're in a really low place, take it until you're back on your feet, but try and get off it when you can as it may hold back your recovery (it piled on the weight for me and I became prediabetic - it's a diabetogenic medication, it can bring you closer to diabetes).

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