Too much to wrap my head around

[heidiiiii5]

I am a poster child for auto immune diseases. I am a 47 yr old, married, mother of two adult daughters. I have type 2 diabetes, intracranial hypertension (two skull repairs for csf leaks), psoriasis, fibromyalgia, chronic fatigue syndrome, vestibular migraines, i found out last week I have arthritis in my hips (wonder if the psoriasis is connected) I have been itchy for 5 yrs but no one can figure it out and the only allergist in the area poo pooed mast cell activation disorder. I just had a fecal transplant last week to help get rid of a bad case of cdiff that I acquired last December. And now I find out that my IBS is actually MC/Lymphocytic. Biopsy of my stegmoid area. I also suffer from pretty bad erosive esophagitis, duodenitis, and gastritis. We cannot figure out why. I am a mess. But I try to keep my head up. If it is t killing me, I can rise above it.
I have been eating low carb high fat since May of this year because I could not get my blood sugars under control because of the cdiff. I do notice a major difference when I cheat and eat wheat. Wheat is the enemy. There is so much more to learn and I think my head is spinning from all the information. Where should I go to read about dietary?
I am afraid of the pepto bismal regimen. I have neurological stuff going on anyway so to take something that might make it worse scares me.
My gastro in Providence for my cdiff (who diagnosed the MC) is Dr. Colleen Kelly. I also have my local gastro too.
Thanks for any help you can give.

[Gabes-Apg]

hi there Heidi!
welcome to our group
sympathies that you had to find us....

many members here have multiple auto immune conditions. you will be enthused to hear that with the right eating plan and nutritional supplements many of those issues will improve.

a good starting point for you is our guidelines for recovery area - this has a suggested eating plan that is low inflammation, and encourages gut healing.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79

the other good area to read is the success stories area - here you will see what others have done, the benefits they achieved and how long it took.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71

take a few deep breaths, and take your time to digest the info (pun intended)
healing hugs

[heidiiiii5]

Thank you. I have figured out today that dairy is the enemy too. Oh boy. I have a bit of reading to do.

[Gabes-Apg]

it can sound a bit overwhelming at first, hang in there...

it will get better

[heidiiiii5]

I am ahead of the game with eating low carb, high fat, moderate protein for my diabetes. I just have to adjust and tweak.

Did the MC cause me to be more susceptible to getting the cdiff? Did the cdiff Come on its own and wake up the MC? I was having ulcers before the cdiff. Can the upper gastro ulcerations be related?

Okay...I just threw those out there because those are things that have been on my mind. Not looking for answers right now because there is so much information. I think when I saw the MCAD postings, it blew my mind. Maybe I will ask this gastro in Providence about it. I have been having stomach and liver issues for awhile. Fatty liver is better since I cut out the wheat and lost weight.

I am babbling. My gut is not good today. I don't feel cdiff sick but it is gurgling like crazy and I had to make a mad dash. That has never happened before.
Okay. Off to read.

[Gabes-Apg]

babble away....
I have often said that coming to this group and reading the info, getting questions answered is like an Alice in wonderland adventure.. you fall into a world that is totally different from the one you came from and everything is almost opposite to what you have known to this point - completely bonkers.. but then you realise it makes sense, you connect the dots, and here seems normal and the previous 'world' is the one that is bonkers!!

having ongoing inflammation in the body, namely the gut makes you more susceptible to many things - along with nutritional deficiencies.
ie the immune system can not respond properly,
MC is like a hibernating bear, it is sound asleep one day and then if woken too early it comes out of the cave growling...

as you read through posts you will find lots of things are related to ongoing inflammation and nutrient deficiencies, joint pain, the fibro, eye issues, digestion issues like the upper gastro ulcerations, etc etc..

read and ask questions... that is how you figure out 'what next'

[heidiiiii5]

My vitamin D was pretty bad. I had upped it to D3 5000mg a day. Then I take mag to offset the D and it helps with migraines. Then I take a probiotic, and liquid b-12 under the tongue.
I don't want to do the Pepto. I already deal/have dealt with neurological issues. I fear I may be more susceptible to the side effects.


I don't have bouts of diarrhea. I didn't even have it much with the cdiff (1st diagnosed yes). Is it normal for someone with MC to not have long bouts of it?
I can eat something wrong, be sick, and end up in the bathroom for awhile. But once I have gotten rid of the offending food, I slowly get back to normal. But never days an days. The gastro just assumed my stools are watery and I go 6-7 times a day.
Makes me wonder if that will change as the years pass

[heidiiiii5]

I am a baker, canner, and cook. We love food. I will have to find a way to make this work. I shop the perimeter of the stores. I do have gluten stuff in the house because of others. I am guessing I need to toss it all.

When I had my colonoscopy, the gastro noted a diffuse area of erythematous mucosa in the sigmoid. That is where they found out I am a special stomach snowflake.

[tex]

Hello Heidi,

Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it.

To cut to the chase, IMO this says it all:

I am a poster child for auto immune diseases. I am a 47 yr old, married, mother of two adult daughters. I have type 2 diabetes, intracranial hypertension (two skull repairs for csf leaks), psoriasis, fibromyalgia, chronic fatigue syndrome, vestibular migraines, i found out last week I have arthritis in my hips (wonder if the psoriasis is connected) I have been itchy for 5 yrs but no one can figure it out and the only allergist in the area poo pooed mast cell activation disorder.

You are actually the poster child for undiagnosed chronic magnesium deficiency. Type 2 diabetes, hypertension, fibromyalgia, chronic fatigue syndrome, and migraines are all common symptoms of a chronic magnesium deficiency. Like me, you have probably been magnesium deficient all your life. Resolving my magnesium deficiency eliminated symptoms that have been bothering me for decades. Some of us do not absorb magnesium from our food at normal levels due to genetic defects or possibly methylation issues. Research shows that about 80 % of the population is magnesium deficient these days. But for most people, their deficiency is not severe enough to cause significant symptoms. I was lucky. My symptoms finally became so bad that I was forced to track down the cause and resolve it.

And guess what. Chronic magnesium deficiency is never (and I do mean never) on the radar of 99.9 % of clinicians, so it is virtually never properly diagnosed. For example, magnesium deficiency is commonly misdiagnosed as fibromyalgia. Another symptom is depression — magnesium deficiency is commonly misdiagnosed as depression, even though published research shows that magnesium effectively treats depression, migraines, hypertension, and all the other symptoms you mentioned. Many patients are taking drugs to lower their blood pressure when the proper treatment is magnesium supplementation. Guess what causes prediabetes? Magnesium deficiency. And if the deficiency is not corrected, it eventually becomes type 2 diabetes. The reason why you are unable to control your blood sugars is because a chronic magnesium deficiency causes insulin resistance and reduced pancreatic production of insulin.

I explained my symptoms to many doctors over the years. None of them ever suggested that I might have a magnesium deficiency. They were ready to prescribe an antidepressant, or other drugs, but magnesium was never mentioned. For more detailed information, please read the chapter (chapter 2) on magnesium in the book Pancreatic Cancer. The book is available as a free digital download at:

https://www.smashwords.com/books/view/665808

http://www.barnesandnoble.com/w/pancrea ... kview=true

Amazon does not allow free downloads, so their price is $0.99 for the Kindle version and $3.85 for the printed version, but I get zero royalties from this book, in order to allow as many people as possible to read it (and hopefully benefit from it).

https://www.amazon.com/Pancreatic-Cance ... B01LZ5E40J

Your esophagitis, duodenitis, and gastritis are all symptoms of the same inflammation that caused your LC, and they are somewhat common satellite issues associated with MC. Please read the article at the following link to help you to understand how your magnesium deficiency is associated with your mast cell issues, and how the association promotes inflammation, which of course leads to autoimmune disease:

http://www.waynepersky.com/2016/10/26/h ... e-problem/

I apologize for "flooding" you with so much additional information when you are already feeling overwhelmed by all the new information you have discovered here, but this is important because it holds the key to most, if not all, of your current health issues. Some of the damage already done cannot be undone, but much of it can, and most importantly, correcting the problem will help to prevent the development of additional AI diseases in the future.

I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.

Tex

[tex]

Heide,

Regarding the C. diff — do you take a PPI? If so, that's almost surely the source of the C. diff infection. PPIs are notorious for causing C. diff infections and many other problems. And it's also one more reason why you are unable to absorb magnesium. Please note this quote from page 15 of Pancreatic Cancer:

As an example of how serious the problem of drugs interfering with the absorption of magnesium can be, consider the first paragraph of a warning issued by the FDA regarding the use of proton pump inhibitors (FDA Drug Safety Communication, 2011, March 2):i

[3-2-2011] The U.S. Food and Drug Administration (FDA) is informing the public that prescription proton pump inhibitor (PPI) drugs may cause low serum magnesium levels (hypomagnesemia) if taken for prolonged periods of time (in most cases, longer than one year). In approximately one-quarter of the cases reviewed, magnesium supplementation alone did not improve low serum magnesium levels and the PPI had to be discontinued.

The red emphasis is mine.

Tex

[heidiiiii5]

No, we stopped the PPI once I was diagnosed. We tried carafate to coat the ulcers but that stuff is bad news. I am on 250mg of prescription Zantac. It helps with the pain. If I don't take it, I have sharp, debilitating stabs in my upper back (across from those areas). I needs upper endoscopy to see how it is but we wanted to wait for the cdiff to be gone.
The gastro in Providence thinks I became colonized with it and that my symptoms are actually the MC. I acquired the cdiff when I had gallbladder removal last December. One dose of antibiotic in my iv. I have been on tapers of flagyl, vancomycin, and dificid till I was able to get the transplant.

My endo told me to start taking magnesium at night because I was having muscle twitches in my legs. I found out later you should take it if you take a D supplement anyway. I haven't had blood work on my mag yet. My next appt is in December. I take two 250mg every night. I am guessing that probably isn't enough. It has helped with the migraines'
I am a researcher to my core. I like being directed to where I should read. It helps me focus on those things. I don't get completely overwhelmed if I know a place to go.

I was planning on getting referral a Gastro in Sleeping Hollow NY who is the front runner in MCAD but I got sidetracked with surgeries. I cannot remember her name. I have already had genetic testing done in Cambridge Mass by Dr Jeff Milunsky. He saw Sticklers and mild Lowes-Dietz but not Ehlers Danlos. My blood work came back negative.

I have had allergy testing. I am allergic to pollen, dust, and shellfish sensitive. I had a reaction once to shrimp but not anaphylactic.

It is never ending. I would like to get off this train now.
Thank you for helping me.

[heidiiiii5]

For about 6-7 years, I have been itchy. It started off mildly but now I have to take a daily Zyrtec. If I stop taking it, in about 2 days I start to get itchy. It will start on my foot or my head. It will go to different locations. If you itch it, it hurts. No rash. No inflammation. The Zyrtec doesn't completely knock it down but makes life bearable. I asked every specialist I see/saw...neuro, derm, rheumy, endo, gastro, allergist and nobody could tell me why.

[tex]

Heidi,

I trust that you are not taking magnesium oxide, because we can only absorb roughly 2 % of the magnesium in magnesium oxide. Most of us use chelated magnesum (magnesium glycinate) or ReMag as an oral supplement and/or magnesium oil or lotion as a topical application.

Spreading it out during the day helps to restore reserves, because we can only absorb and utilize a limited amount during any given interval of time. The body will automatically limit serum magnesium to "normal" amounts because of the fact that it's a vital electrolyte. That's why the serum magnesium tests almost universally used by the medical community are almost completely useless. The body will always keep serum magnesium levels in the normal range until the cells of the body are so depleted that it can no longer draw magnesium from them to make up for dietary shortfalls. A test result cannot be deficient unless the body is so depleted of magnesium that a crisis condition is a real risk. Running completely out of magnesium puts us at risk of a heart attack or stroke.

If you can persuade your doctor to order an RBC (red blood cell) magnesium test, the results are much more reliable. There are better tests available, but most labs do not offer them (because doctors never order them) and doctors are pretty much unaware of them, because they apparently don't realize that the serum tests they order are worthless.

If we take single big doses of magnesium, most of it tends to remain unabsorbed in the gut, where it can act as a laxative if enough of it remains there. Any excess amount in serum is purged from the bloodstream by the kidneys (in order to keep serum levels within the normal range). Excess amounts (above what the body can transport to the cells where it is needed) in the bloodstream, can overwork the kidneys, because it has to be purged. Because of that, I take 200–300 mg after breakfast, another 100 mg after lunch, and another 100 mg after an afternoon or evening meal or snack. If I notice any sign of symptoms (such as leg cramps the previous night), I take another 100 mg before bedtime. IOW, now that I have restored my reserves (after almost a year of higher doses) somewhere in the 400–500 mg range seems to be my optimal maintenance dose.

I hear you about the itching. I have the same problem. I control mine by strictly limiting the histamine content of my diet (avoiding high-histamine foods and foods that promote the release of histamines). Many drugs also promote the release of histamines. Fortunately, if I watch my diet carefully, that's often sufficient. It's not enough during pollen season, or if I'm exposed to other triggers, but usually in those situations a daily 180 mg Allegra tablet will be adequate. Before I made adjustments, the itching used to be maddening, especially during hot weather and/or following a hot shower. I would wake up during the night scratching, and as you pointed out, then the itching would become a burning sensation.

It helps to never refrigerate leftovers that are to be eaten later. Histamine levels in foods that are prone to histamine propagation (such as chicken, fish, bananas, etc., continue to increase at refrigeration temperatures. It's necessary to freeze foods (at zero degrees F or below) in order to stop the histamine levels from continuing to increase. Many of us prepare food in batches, but immediately freeze it in serving-size containers and then thaw and quickly reheat (or microwave) as needed.

For example, I can cook chicken soup, store it in the fridge, and eat it up to a few hours later with no problems. If I eat some a day later, I might have minor (barely noticeable) symptoms. If I eat it 2 days later, I will have moderate symptoms (definitely noticeable, but not severe — mild to moderate bloating, mild to moderate itching). By the third day, if I eat soup that has been stored at refrigerator temperatures, I will have severe symptoms (major bloating and severe itching, often marked by not only a rash, but weals). Needless to say, I don't do that anymore.

I can eat bananas if they are barely ripe, because at that stage they are still a low-histamine food. But after another day or 2, as they become noticeably ripe, or past ripe, they will make me itch like mad. And yes, I peel and freeze bananas (in ziploc bags) as they barely become ripe. They make great snacks (treats) when slathered with cashew butter or almond butter (if you can tolerate either of them).

Most mainstream medical professionals don't understand mast cell issues, and they are almost totally unprepared to treat them effectively. I would assume that these days most allergists should understand mastocytosis, but unfortunately as far as I'm aware, mast cell activation disorder (MCAD) is still a total mystery to most of them. Most of us are dealing with MCAD, rather than mastocytosis, but the treatment is pretty much the same (or at least very similar).

Tex

[heidiiiii5]

I already ordered magnesium flakes on Amazon.

[Gabes-Apg]

Magnesium is super important, the other part to managing histamine levels /mast cell reactions is B6. Once i resolved my magnesium deficiency and B6 deficiency, life long histamine issues have gone!

years ago I could not walk into a house with a cat, now i can pat them etc.