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Mrsa Infections And High Ana (No Lupus), Pancreatic Neuroendocrine Tumor, Anyone Else?


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9 replies to this topic

#1 JoyMurphy

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Posted 29 July 2012 - 11:47 AM

Hi,
This is my first post on this forum. I decided to break it into two separate posts b/c my issues are numerous.
I am wondering if any other celiacs have dealt with bouts of MRSA. I donut know if it is a symptom or the cause of my then undiagnosed celiacs going out of control. Since february of 2011 I have contracted MRSA 2 times. As well as multiple yeast infections. I have had stomach issues my whole life, failure to thrive as a child, late onset puberty, multiple miscarraiges, psoriasis, fatigue, memory loss, poor recall, ADD, you name it.
At the time of my celiac diagnosis, they also found a neuroendocrine tumor on my pancreas.
On top of the frequent MRSA, and the long running joke with my past pop, that anytime I go away I come back with some new disease. My ANA was off the charts. That is the nuclear antibodies. A normal high is 80. I was 640. This would point to lupus. However, I was cleared of lupus, rheumatoid arthritis, psoriatic arthritis, etc. it does fluctuate, and has been down to 320. That was both before and after surgery.
My question is, have any of you experienced or have any insight on this?
My next post will contain the rest of my nightmare that brought me here.
Thank you for any advice and help.
Joy
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#2 GlutenFreeAustinite

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Posted 29 July 2012 - 02:12 PM

I didn't have MRSA, but I did have a very persistent staph infection on my face a few years ago. The test was negative for MRSA, but it was really hard to get rid of. I was also at boarding school in the middle of rural Wisconsin, so I have no idea what tests were done, or if they really were negative. I've also had recurrent yeast infections since I hit puberty.
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#3 trents

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Posted 29 July 2012 - 03:56 PM

Hello, Joy. I know it must be frustrating to have so going wrong with you and never seeming to climb out of the hole.

I work in a healthcare setting and I can tell you many medical professionals suspect you may never really get rid of MRSA once you have it. You an beat it back so that it goes into hiding ("colonizes") but it's hanging around waiting for an opportune time to make a comeback.

Keep your immune system strong through healthy eating and regular exercise. Sounds like you're immune system may be on edge as well with the high ANA and sometimes short-term immuno-suppressant therapy can help with that.
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#4 JoyMurphy

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Posted 30 July 2012 - 04:08 PM

Hello, Joy. I know it must be frustrating to have so going wrong with you and never seeming to climb out of the hole.

I work in a healthcare setting and I can tell you many medical professionals suspect you may never really get rid of MRSA once you have it. You an beat it back so that it goes into hiding ("colonizes") but it's hanging around waiting for an opportune time to make a comeback.

Keep your immune system strong through healthy eating and regular exercise. Sounds like you're immune system may be on edge as well with the high ANA and sometimes short-term immuno-suppressant therapy can help with that.


Thank you, I will mention this to the hematologist tomorrow when I see him.
I just know all of this is related somehow!
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#5 Roda

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Posted 31 July 2012 - 01:29 AM

My youngest son had a MRSA infection in his tonsils when he was 2 1/2 years old. He has not had a problem with it since. It took two rounds of clindimycin to get rid of it though. I have had him cultured a few times since and once this year when he got bad tonsillitis to rule out MRSA. He has been cultured when he was well also to make sure he wasn't colonized. Currently he is all clear.

I'm in healthcare also and majority of the health professionals I work with feel like you never get rid of it either. I personally disagree with this. My thinking and opinion as to why some people are more suseptable, is that the infection wasn't adequatly treated to get rid of it completely or they are immunocompromised in some way.

Unfortunately because my son had a MRSA infection "once" when he was 2(he is 7 now), he will automatically be placed in isolation if he was ever admitted to the hospital for any reason.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


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#6 Gemini

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Posted 31 July 2012 - 07:38 AM

Thank you, I will mention this to the hematologist tomorrow when I see him.
I just know all of this is related somehow!



Joy.....an elevated ANA is not specific to any one disease, it just means there is a lot of general inflammation in your body. It can come from having long term, undiagnosed Celiac. I have 4 AI diseases and my ANA is always elevated. I mean, it was so high, it was scary. Since going gluten free 7 years ago, mine has steadily been coming down. The longer you are gluten free, the more it calms down your immune system. I am still elevated but much lower than the original findings. If you have any AI disease, it will be very likely your ANA will be high. The higher the number, the more inflammation you have. Do not despair and let the docs scare the hell out of you. Stay gluten-free and try to get some exercise.....another aid to good immunity function. Be patient and things will turn around.

I have never had MRSA but my sister has had a couple of bouts with it. She definitely has a gluten problem, although not officially diagnosed like I was.
She cheats all the time on her diet and is not well. Maybe her cheating has something to do with why she has had a number of outbreaks? I should add I am not implying that your cheat on the diet but that if you had Celiac for a long time before diagnosis, you probably were very run down. I will tell you that I became run down about 3 years ago and I popped with shingles....first and only time. If you become too run down, then your immune system becomes compromised and you are susceptible to infections and viruses. You need to be strict with the diet and be patient. Once you start absorbing normally again, your health should improve and then maybe you won't be prone to these recurrences. I hope so! Good luck.
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#7 JoyMurphy

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Posted 31 July 2012 - 08:59 AM

Joy.....an elevated ANA is not specific to any one disease, it just means there is a lot of general inflammation in your body. It can come from having long term, undiagnosed Celiac. I have 4 AI diseases and my ANA is always elevated. I mean, it was so high, it was scary. Since going gluten free 7 years ago, mine has steadily been coming down. The longer you are gluten free, the more it calms down your immune system. I am still elevated but much lower than the original findings. If you have any AI disease, it will be very likely your ANA will be high. The higher the number, the more inflammation you have. Do not despair and let the docs scare the hell out of you. Stay gluten-free and try to get some exercise.....another aid to good immunity function. Be patient and things will turn around.

I have never had MRSA but my sister has had a couple of bouts with it. She definitely has a gluten problem, although not officially diagnosed like I was.
She cheats all the time on her diet and is not well. Maybe her cheating has something to do with why she has had a number of outbreaks? I should add I am not implying that your cheat on the diet but that if you had Celiac for a long time before diagnosis, you probably were very run down. I will tell you that I became run down about 3 years ago and I popped with shingles....first and only time. If you become too run down, then your immune system becomes compromised and you are susceptible to infections and viruses. You need to be strict with the diet and be patient. Once you start absorbing normally again, your health should improve and then maybe you won't be prone to these recurrences. I hope so! Good luck.



Thank you for this information. No one, not any doctor or anything I have researched has explained this. I just couldn't except, " you are part of that 1% of the population with high Ana....your explanation makes sense. I have celiacs and. Psoriasis. I have been recently diagnosed.
My hematologist told me that since the tumor is gone that over the next year it may lower as well.
Thank you
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#8 Gemini

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Posted 31 July 2012 - 09:55 AM

Thank you for this information. No one, not any doctor or anything I have researched has explained this. I just couldn't except, " you are part of that 1% of the population with high Ana....your explanation makes sense. I have celiacs and. Psoriasis. I have been recently diagnosed.
My hematologist told me that since the tumor is gone that over the next year it may lower as well.
Thank you



No one, not any doctor or anything I have researched has explained this.


This is one of the highest ranking comments I hear from people all the time! I had this experience also, except for the very smart hematologist lady who spoke with me in depth about Celiac and other AI diseases and what it does to blood work. I actually connected the dots with regards to Celiac for her and it was the first time I ever heard a doctor say, "That makes perfect sense"! and not treat me like a moron because I don't have MD after my name. She is genuinely committed to helping people and not just telling them "I don't know".

Celiac is one of the largest sources of inflammation in the human body and it can take a very long while for things to calm down. Why the vast majority of people go undiagnosed for so long is beyond my realm of understanding. I diagnose people all the time! :lol:

That tumor that was on your pancreas could very well be from the fact that the pancreas suffers with long term Celiac. When your villi become damaged, they no longer send out messages to other parts of the body (pancreas is one of them), to send digestive enzymes to break down your food. Parts of your pancreas can atrophy from lack of use. I still have some trouble digesting fats and proteins. I need to take a digestive enzyme to help and they work very well. I went until the age of 46 until I was diagnosed and I had symptoms going back to pre-school age. When you piece together the puzzle, it's so damn obvious......annoyingly obvious!

And the psoriasis.....rashes of all kinds are common with Celiac. I actually think they are not really what the doctors say they are but a side effect of eating food that is pissing your body off. Too many people have told me their "rashes" went away after being gluten-free for a bit and they stopped having problems with them. I work with people with severe rashes but they are not willing to change their diets or listen. Sad.

Did your tumor go away on it's own or was it surgically removed? I apologize if I am digging too deep but am just curious.
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#9 JoyMurphy

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Posted 01 August 2012 - 07:41 AM

This is one of the highest ranking comments I hear from people all the time! I had this experience also, except for the very smart hematologist lady who spoke with me in depth about Celiac and other AI diseases and what it does to blood work. I actually connected the dots with regards to Celiac for her and it was the first time I ever heard a doctor say, "That makes perfect sense"! and not treat me like a moron because I don't have MD after my name. She is genuinely committed to helping people and not just telling them "I don't know".

Celiac is one of the largest sources of inflammation in the human body and it can take a very long while for things to calm down. Why the vast majority of people go undiagnosed for so long is beyond my realm of understanding. I diagnose people all the time! :lol:

That tumor that was on your pancreas could very well be from the fact that the pancreas suffers with long term Celiac. When your villi become damaged, they no longer send out messages to other parts of the body (pancreas is one of them), to send digestive enzymes to break down your food. Parts of your pancreas can atrophy from lack of use. I still have some trouble digesting fats and proteins. I need to take a digestive enzyme to help and they work very well. I went until the age of 46 until I was diagnosed and I had symptoms going back to pre-school age. When you piece together the puzzle, it's so damn obvious......annoyingly obvious!

And the psoriasis.....rashes of all kinds are common with Celiac. I actually think they are not really what the doctors say they are but a side effect of eating food that is pissing your body off. Too many people have told me their "rashes" went away after being gluten-free for a bit and they stopped having problems with them. I work with people with severe rashes but they are not willing to change their diets or listen. Sad.

Did your tumor go away on it's own or was it surgically removed? I apologize if I am digging too deep but am just curious.

No, no, please dig.
I had the tumor removed 3 weeks ago. Many docs thought that many of my symptoms came from the tumor. Which we believe to be begign, the report comes back to me Friday. They also were concerned I had lymphoma or multiple myeloma. I am now cleared of that. My tumor was 1 cm..."and I'm sure it had something to do with my downfall. But the more I am on this board the more I realize, I think celiacs is the cause of what happened to me. I am starting to learn bout ataxia...and it is fitting all of my neurological symptoms..... Not being able to comb my daughters hair, numbness, tingling in extremities and even the right side of my forehead and face. Ocular oddities, blurred vision, speech slurred, memory loss, not being able to recall common words or finish a sentence. Or even at times have a coherent conversation.
I am he'll bent on getting answers to what happened to me. I am done with being passed off, I am in a good hospital now, and I have a great gi....but I am going to get him to transfer me to the celiac clinic now and I am going to get to the bottom of this.
So, please, don't apologies... Ask away.....all anyone of us want is validation and suggestions and a path to the truth
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#10 Gemini

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Posted 01 August 2012 - 09:58 AM

No, no, please dig.
I had the tumor removed 3 weeks ago. Many docs thought that many of my symptoms came from the tumor. Which we believe to be begign, the report comes back to me Friday. They also were concerned I had lymphoma or multiple myeloma. I am now cleared of that. My tumor was 1 cm..."and I'm sure it had something to do with my downfall. But the more I am on this board the more I realize, I think celiacs is the cause of what happened to me. I am starting to learn bout ataxia...and it is fitting all of my neurological symptoms..... Not being able to comb my daughters hair, numbness, tingling in extremities and even the right side of my forehead and face. Ocular oddities, blurred vision, speech slurred, memory loss, not being able to recall common words or finish a sentence. Or even at times have a coherent conversation.
I am he'll bent on getting answers to what happened to me. I am done with being passed off, I am in a good hospital now, and I have a great gi....but I am going to get him to transfer me to the celiac clinic now and I am going to get to the bottom of this.
So, please, don't apologies... Ask away.....all anyone of us want is validation and suggestions and a path to the truth


Joy...I think as you heal, you are going to be blown away by the number of symptoms that start to go away and are, indeed, connected and caused by Celiac.
You are malnourished, don't forget that, and that can really mess up a body good!

Lymphoma and MM are diseases that are common to undiagnosed Celiac. The risk factor for Celiac's for these 2 are very high, if you don't give up the gluten. I think after 5 years gluten-free, strict gluten-free, your risk factor goes back to that of the general population. I was checked for MM because of high protein counts in my blood work. That little problem went away after I was gluten free for awhile. I did not have MM and the elevated blood protein can happen from Celiac. You have to ask a diagnosed, seasoned Celiac about what's connected because doctors just don't know. I think you have to live this disease to understand it fully.

Stay gluten-free and be prepared to get healthy again...remember that? Good luck with your pancreas....I think you really will be fine! Remember that doctors always focus on the really bad stuff and that's why they miss the obvious! :D
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