Guidance for a noob

[kbb]

Hello all:

I’m recently diagnosed with Celiac and LC ( June 2016 ), after about 5 years of trying to figure out why I had constant watery stools. Generally I don’t have more than 2 a day but the consistency wasn’t right, so I knew something was wrong. Anyway, glad to have a diagnosis so I can address the problem, but as you all know, frustrated at what the doctors have to say. At this time we aren’t treating my LC because GI doc says next step is budesonide and that diet doesn’t do any good. I disagree that we just have to take drugs and wait for the next symptom to come. Again, my symptoms are quite manageable, as long as I stay way from spicy food, so I feel quite blessed and I’m so sorry for what everybody else is going through. What I want to do is figure out what all I need to stay away from and how to properly toke care of my body so that I don’t collect any other auto-immune conditions. I fear if I just ignore this and only go GF, I’ll end up with something else down the road.

So here's my question for y'all... What does remission look like? Since I only have D from a consistency standpoint and not from a numbers of visits standpoint, is that good enough? I'm looking to get back to normalcy because I think that is what indicates me being healthy, but is that even possible.

I've tried different elimination diets with no effect. I'm starting to switch to what you guys call phase one and settling in for the long haul. But I just want a reality check that this isn't all a waste of time for me.

I may eventually do the stool testing, but that price tag is a bit steep. Looking for a new PCP that maybe will order the test. With that said, I can't find a functional medicine doctor in my insurance network, but they did point out some D.O.'s Does anybody have any experience/success going to a D.O. instead of an M.D.?

Thanks for all the support you guys show, you guys are AWESOME. I've been reading for days on the forums after finishing Tex's book. There's so much on CD but nothing out there on MC, when to be honest, I don't think I have any symptoms from CD, I think it's all the MC.

Thanks
-Kelly

[tex]

Hello Kelly,

Welcome to our Internet family. You seem to be right on track with your thinking. Doctors are shackled by their own modus operandi. Mainstream medicine has evolved to allow only treatments based on published (peer reviewed) proof of concept. And ambulance-chasing lawyers have evolved to take advantage of the opportunity offered by that rigid style of treating patients by financially punishing any physicians who fail to follow that strict formula. Obviously this pretty much stifles creativity and any hope of using any treatment other than the same old treatments that have performed so poorly in the past. Just because an optional treatment works well doesn't mean that MDs can safely use it. It has to be published in a prestigious medical journal first. So that's why your doctor says that dietary treatments don't work. She or he may or may not know better, but even if they know better, most doctors are afraid to stick their neck out.

And you are quite correct that if we want to avoid collecting other AI diseases down the road of life, we have to stop the inflammation that's being generated by our digestive and immune systems every time we eat certain foods.

Here's a link to a good (and recent) thread about perceptions of "remission":

What would you consider remission?

Most of us find the cost of the EnteroLab tests to be one of the best expenditures we ever made. That said, I used elimination diet testing to find my own food sensitivities originally, because back then I wasn't even aware of the EnteroLab tests. Since then I have ordered from them on several occasions. Without any guidelines, it took me over a year and a half to figure out all my sensitivities, but it worked. If you follow the guidelines provided here, you should see results within a few months, more or less. It takes a long time for the damage from gluten to heal. The damage from other food sensitivities can be resolved much faster because it is less severe.

But the key lies in finding all of our sensitivities. Finding most of them is not sufficient. We have to avoid all of them in our diet.

And you are right about CD. If you are able to control your MC by diet, controlling your CD is automatic because it's covered by the treatment program.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Gabes-Apg]

Kelly
welcome to our group (our family) and sympathies that you had to find us..

Tex has answered your questions

we have put together some guidelines that will help you embrace life in 'MC World'
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79

and i encourage you to keep reading posts and discussions to see how MC has impacted others
a great place to do some reading is in the Success Stories area - this a good way to see what others have done and how long it took to attain wellness

hope this helps

[kbb]

You guys are all so wonderful. Thank you for the feedback Tex. I’ve been on some of those links Gabes, I’ll make sure I hit them all thanks for having the information out there.

Ok so sounds like I’m on the right track and I need to get to ‘normal’ if I can, it’s worth the pain/effort. I just get tired of trying to figure out the puzzle. Been at it for a while, well before diagnosis, just new with you guys :)

So, here’s the plan, looking for some validation/critiquing. Using various links from this site I’ve come up with my initial phase one plan… Trying to put together something I know I can stick too/do.

Venison - The hubby supplies me with this quite well already.
Pastured Chicken - from local farm
Sweet Potatoes
Red potatoes
squash
carrots
celery
home made bone broth ( chicken and beef, bones from that local farm )
Jasmine rice
banana, or cooked apple ( not more than 1 per day )
water, tea (ginger, or peppermint, or green), and coffee
Nutiva hemp protein powder, silk unsweetened coconut milk, with 1 tbsp coconut oil shake ( maybe put my banana in here to make it a smoothie? ) - Breakfast daily.
Snacks… Kind of stumped here, feel free to give me some safe early on suggestions. I know the banana and apple, but I need another thing I think… I really like to eat so I need to have snacks that work around or I will have a melt down. Or maybe I just do a second shake if I ‘need’ something?

Oh, onions, is it ok to cook with onions as long as I don’t eat them?

On the supplement front…
I figured out I needed fish oil after I started getting hives ( oh that’s not related to anything according to the docs btw and she looked at me like I was nuts when I told here the fish oil helps so I take that rather than the anit-histimines so perscribed. But Zyrtec knocks them out when the fish oil won’t do it. Oh, heart palpitations aren’t related to anything either, but I digress… Supplements...
Celiact - https://celiact.com/products/celiact-mu ... us-enzymes
Vitamin D
Borage Seed Oil
Vitamin C
Vitamin E

I started reading http://blumcenterforhealth.com/the-immu ... -the-book/ before I found Tex’s book. That’s where I got the guidance for a lot of the supplements. Book seems really good and relevant but not specific to MC. Just want to make sure they all look ok to you guys, and useful. It’s a lot and a bit of an expense. They are all GF/SF/DF etc…

I think I’ll try the D.O doc and see if she won’t order the tests for me. If she won’t then I’ll likely order them myself, assuming I don’t have it all figured out by then. YEAH RIGHT! Still curious if anybody see’s a D.O. http://www.crunchychristianmama.com/hom ... -versus-nd Need to do more reading on the tests to understand if I’ve cut out everything, will it still be able to tell if I’m sensitive to it. For example, if I stop eating dairy will the test still tell that I’m intolerant? Or do I need to be eating the stuff like with the gluten blood tests?

My MD lost credibility with me when I asked her about chest pressure (might be anxiety over all this crud ) and she prescribed me omeprazole. Are you freaking kidding me? I already have MC. Oh but you could have GERD you already have digestive issues so it COULD be that. So take this pill and it will be ok. GRRRRRR. Needless to say, I didn’t take it.

Thanks for reading and I appreciate any and all feedback.

[tex]

Your menu items look OK, unless I overlooked something. Some of us can tolerate onions, and some cannot (during recovery). Be careful with vitamins C and E. Have you read my Vitamin E post? Most of us don't need vitamin E anyway.

The Problem With Vitamin E

My favorite snack is a frozen banana slathered with cashew butter (Kevala is a safe brand). Peel and freeze the bananas just as they become ripe. If you allow the bananas to go past barely ripe they soon become a high-histamine food, and your hives are a sure sign that you have histamine issues, known as mast cell activation disorder (MCAD). Other safe snack foods include things such as plain old Lay's Potato Chips, or plain tortilla chips (check the label to make sure they do not contain any unsafe ingredients and they're not cooked in vegetable oil (which is almost always soy oil). Even pork rinds are safe (though not exactly the most nutritious food in the store ), if you crave something crunchy. Some members snack on rice cakes (or rice crackers), sometimes topped with almond butter. But be aware that nuts can be high-histamine foods, so don't overdo them or their butters.

I'm guessing that you almost surely need to minimize high histamine foods in your diet. And yes, 99.99 % of physicians either have never heard of MCAD, or they have heard of it but are unable to treat it. Please be aware that chicken (and fish) quickly become high-histamine foods if/when they are not frozen. The leftovers should be promptly frozen and then thawed just before eating.

I’ve cut out everything, will it still be able to tell if I’m sensitive to it. For example, if I stop eating dairy will the test still tell that I’m intolerant?

The EnteroLab stool tests are sensitive enough to normally detect most food sensitivities up to several months after the foods have been removed from the diet. After that it becomes iffy. Most food antibodies have a half-life of about 6 days. Gluten antibodies (anti-gliadin antibodies) have a half-life of 120 days. Because of their persistence, anti-gliadin antibodies can virtually always be detected by the EnteroLab tests for at least a year after gluten has been removed from the diet, and in most cases they can be detected up to 2 years after gluten has been removed from the diet. By contrast, the celiac blood tests can only reliably detect gluten antibodies for a few months at most after gluten has been removed from the diet, and even then they will only detect fully-developed celiac disease, not earlier stages. Also, the MDs have no officially-approved test for detecting non-celiac gluten sensitivity, so they have no way to test for the type of gluten sensitivity that most of us have. Enterolab's stool tests will detect any type of gluten sensitivity.

You definitely know much more about PPIs that your PCP. PPIs have caused more serious health issues than you can shake a stick at. They are definitely an iatrogenic drug, designed to guarantee plenty of repeat business for medical professionals and the pharmaceutical industry.

Your heart palpitations concern me. Have you been checked for hyperthyroidism or graves disease? Do you ever have anxiety or panic-type episodes?

Tex

[Janie]

I am a newbie and followed Gabes and Tex advice and only supplement with Magnesium and Vit D at first. It took 5 months of eating no gluten dairy soy and egg well cooked veggies and meat no fiber. I am slowly adding more things and supplements and have normans. Follow the advice and keep stress down too and it is a marathon not a race. Some things come naturally and others I have to work at. I use Allegra and sometimes Benedryl to keep histamine reaction down from mostly the pollen and winds. Read and read some more especially the forum meant for newbies here. Welcome to the forum and don't get too overwelmed, it will come naturally after awhile.

[Gabes-Apg]

Venison - The hubby supplies me with this quite well already.
Pastured Chicken - from local farm
Sweet Potatoes
Red potatoes
squash
carrots
celery
home made bone broth ( chicken and beef, bones from that local farm )
Jasmine rice
banana, or cooked apple ( not more than 1 per day )
water, tea (ginger, or peppermint, or green), and coffee
Nutiva hemp protein powder, silk unsweetened coconut milk, with 1 tbsp coconut oil shake ( maybe put my banana in here to make it a smoothie? ) - Breakfast daily.

my only cautions with this list
- double check your teas (they can have soy and other not so ideal ingredients
- instant coffee can have gluten and chemicals
- and check celery on its own before adding into meals

Snacks… Kind of stumped here, feel free to give me some safe early on suggestions. I know the banana and apple, but I need another thing I think… I really like to eat so I need to have snacks that work around or I will have a melt down. Or maybe I just do a second shake if I ‘need’ something?

best snacks are protein based so yes protein shake or some cold meats (cooked by you, have not been in fridge for more than 12 hours)
there are loads of posts discussing 'paleo muffins' these can be made and frozen individually.

Oh, onions, is it ok to cook with onions as long as I don’t eat them?

as best avoided in the early stages of healing

On the supplement front…
I figured out I needed fish oil after I started getting hives ( oh that’s not related to anything according to the docs btw and she looked at me like I was nuts when I told here the fish oil helps so I take that rather than the anit-histimines so perscribed. But Zyrtec knocks them out when the fish oil won’t do it. Oh, heart palpitations aren’t related to anything either, but I digress… Supplements...
Celiact - https://celiact.com/products/celiact-mu ... us-enzymes
Vitamin D
Borage Seed Oil
Vitamin C
Vitamin E

as mentioned in the guidelines for recovery - at first good Vit D and good magnesium are best options (mag glycinate and/or topical magnesium )
then as there is some healing look into things like active B's etc.
Active B6, P5P is good to help with histamine inflammation (as per your hives statement)
as you read through recent posts and info on histamine and mast cells, you will see that B6 preferably the P5P form and magnesium are key to managing histamine inflammation

[kbb]

Janie:

Thank you for the welcoming words and your feedback on how your recovery went. I’ve tried to cut out those things before perhaps it wasn’t long enough. I’ve been off gluten since my diagnosis though, at least as well as I can. Found out I was screwing up for the first couple of months... I don't feel stressed but then I wonder if I'm just so used to being stressed I don't even know it anymore ;)

Hey Tex:

Wow, wonderful grammar on my part. Thanks Tex for interpreting what I was trying to type since it didn't come out in real English.

I don’t get the palpitations as much as I used too. Doc had me wear a heat monitor for a couple days and they determined that I have ‘extra heartbeats’ and said it was normal as in a lot of people have that. I’ve never had a panic attack but that pressure in my chest sure does freak me out, not sure if that’s anxiety or what. In my previous life I was pretty level. When I told some friends I was having a stress problem they were surprised. So then I’m like maybe it’s not that. Enough to make you think you’re going mad. They recorded it as chest pain in my medical record with is annoying, it’s not painful, just uncomfortable and freaky. I’ve had two different types thyroid tests (TSH & T4) and they both came back within normal ranges.

Telling me to get my vitamin E from food is kind of funny as I try to figure how to eat like the same 5 things every day ;) Anyway, reviewed your posting on Vitamin E. Cross reference with the paragraph in the “Immune System Recovery Plan” book got the guidance from. She says not to do the synthetic dl-alpha-tocopherol, but to choose mixed tocopherols. Her reason for taking it is that it’s “the number one antioxidant that protects all the fat in your body, including cell membranes and your brain.” You guys both talk over my head so I’ll have to review your posting a couple of time and go do some more reading. Good material, this is exactly what I wanted. If nothing else I’ll figure out if I can dump it before the bottle runs out!

As far as snacks goes, eating chips feels like a huge step backwards to me, I stopped eating ‘junk food’ when I first started down the road of trying to figure out what was wrong with me. Part of my problem is I don’t do moderation well. The nut butters sound really good, so I guess if I just pick one of them and stick to it, at least I have fewer questions if symptoms don’t go away. Of course the over doing it is always a problem with me, so the histamine thing is fun.

Sounds like if I’m going to do the tests I should do them before I go too far down this road… Thanks for the info there.

Gabes:

Was just about to send this when you posted yours…

My tea and coffee are clear thanks for the heads up though, I’ll keep on the lookout.
I don’t care about celery that much if it’s a possible problem I’ll just cut it.
12 hours… wow, ok good guideline to have.
I think I’ll find some paleo muffin recipes instead of doing nut butters, sounds safer.
So sad on the onions but thanks.

Ok so Gabes and Tex:
supplements, sounds like you guys kind of think I should only take vitamin d and magnesium until I’m ‘better’. However, I got diagnosed with Osteopenia in my spine right after my CD/MC diagnosis as part of the follow up tests I asked for. The Celiact is giving me my calcium. I would be a little worried about cutting that out. Of course it's giving me a ton of other stuff to, I could just go buy regular calcium again. Just a little more info there that I neglected to give first go round. It’s been a heck of a year ;)


Thanks so much to you all!

[Gabes-Apg]

Kelly
deep breath
calcium does not help bones - vit D and magnesium do...

some recent discussions to ponder
http://www.perskyfarms.com/phpBB2/viewt ... ht=calcium
http://www.perskyfarms.com/phpBB2/viewt ... ht=calcium
http://www.perskyfarms.com/phpBB2/viewt ... ht=calcium

[Gabes-Apg]

also - I find that if i start the day with good breakfast (for me it is either stew or reheated veges with big serve of protein) then my need for snacks is not that high.

[kbb]

YOU'VE GOT TO BE KIDDING ME! I guess I do a better job researching things that they take their little prescription pad out for. I'm freaking 42 years old, I should not have Osteoanything! GRRRR. More studying to do. Thanks so much for the feedback and direction! Stew for breakfast... *sigh*.

[Gabes-Apg]

kelly - i was 40 when diagnosed with MC and majority of my health issues in the 5-10 years before that were mostly due to magnesium and Vit D3 deficiency
(and some other deficiencies linked to other health issues)

another good reason to embrace the low inflammation eating plan and heal! you will be surprised how many niggly symptoms will go away with the right eating plan and supplement protocol!


stew or veges with protein for breaky is not a bad thing. once you get used it - i enjoy it. and as it is a steaming hot aussie summer I prefer to hot meal early and then have cool protein shake as dinner when it is too hot to cook

Animal protein is essential for good healing

[tex]

Cross reference with the paragraph in the “Immune System Recovery Plan” book got the guidance from. She says not to do the synthetic dl-alpha-tocopherol, but to choose mixed tocopherols. Her reason for taking it is that it’s “the number one antioxidant that protects all the fat in your body, including cell membranes and your brain.”

My bad. I didn't make it clear that the reason why we steer clear of mixed tocopherols is because they are almost always derived from soy. I will totally concede that synthetic tocopherols are poorly absorbed and that's why most health gurus advise against them. But most health gurus don't have MC. We avoid the natural forms of tocopherols (and mixed tocopherols) because they typically (though not always) are derived from soy.

With active MC, our main goal is to get the MC into remission. Virtually everything else can wait. Why? Because the inflammation associated with MC throws many of our organs out of kilter and until we get it stopped (or at least significantly reduced) we can't absorb most nutrients very well anyway, so we're just feeding the toilet until our malabsorption problem is under better control. After we're in remission, then we can concentrate on eating a more balanced diet and taking any supplements if we need them. The main reason why we don't try to do it at the same time is because any one of those supplements could prevent us from ever reaching remission. Trying to take unnecessary supplements while trying to recover form MC has tripped up many, many recovery programs. It's not worth the risk unless a supplement is vitally important for some reason.

I hear you about junk food. But the reason why I suggested those items is because most of us can tolerate them. They are typically 3-ingredient foods — the basic starch (as in potato and corn chips), salt, and a safe oil. Far too many of the so-called "healthy" foods contain so many ingredients that many of us tend to react to them. If you eat "non-junk" snacks, be sure they are safe, with minimal ingredients. The homemade snacks that Gabes suggested are fine. It's processed foods containing more than 4 or 5 ingredients that tend to bite us.

I've written many posts explaining how virtually everyone has plenty of calcium in their diet (even restricted diets such as MC recovery diets), so this is probably just repeating what is in the discussions at the links that Gabes posted, but I'll repeat some of the basics here, anyway. It's vitamin D and magnesium that prevent osteoporosis. Most doctors don't have the foggiest idea how this process works, so they just throw more calcium at patients who are at risk of osteoporosis. And that's why the residents of countries that have the highest milk consumption have the highest rates of osteoporosis.

Post number 2 (written by me) in the thread at the following link contains a good explanation of the role of vitamin D, magnesium, and calcium, in preventing osteopenia/osteoporosis.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22721

Did your irregular heartbeat problems begin before your celiac symptoms began? And did the problem become worse after you started taking the Celiact product? The calcium could be the reason behind your irregular heartbeat, because too much calcium in the blood, without an adequate supply of magnesium to manage it has been shown to cause cardiac issues up to and including heart attacks. Too much calcium in the blood can cause calcification of blood vessels, and interfere with heart function.

One of the first things I would do is to drop the Celiact supplement. It contains such small amounts of most of the supplements that might actually be beneficial, that the amounts are virtually worthless. And it contains way more calcium than anyone should take in supplement form. When calcium is supplemented, it should be on a 1:1 basis with magnesium. The product contains only a negligible amount of vitamin D, and only half enough magnesium.

Do you know why celiac disease causes osteopenia/osteoporosis? It does so because like MC, celiac disease causes both magnesium deficiency and vitamin D deficiency because of the malabsorption problem caused by the disease. But note that it does not cause calcium deficiency. As I've repeated many times on this forum, virtually everyone has plenty of calcium in their diet — they just need to add enough vitamin D to absorb the calcium already in their diet, and enough magnesium to transfer it from the blood into the bones where it is needed. We can take calcium supplements until it stops our heart, but unless we have an adequate amount of magnesium to utilize it, we will still develop osteoporosis.

When you add up the calcium in your diet, if you really feel that your diet doesn't contain enough calcium, it wouldn't be unreasonable to take maybe 500 mg per day (but taking 3 times that much is asking for heart problems). If the food in your diet contains roughly 1,200 mg or more of calcium, then you don't need any calcium supplement — you need magnesium and vitamin D. But if you take 500 mg of calcium, then take 500 mag of magnesium daily, also, along with about 5,000 IU of vitamin D. That will stop/prevent the development of osteoporosis.

Tex

[kbb]

I'm kind of on overload. Got a lot to consume from you guys today. Thanks for taking the time.

I'll probably have some follow up questions as I go through all this, but Tex to answer your question about my heart, that started at least a couple years after the D symptoms, but long before the calcium supplements. I started calcium probably in July of this year. Looking at my medical record online, I wore the heart monitor in 12/2013. Doesn't happen as much now, or maybe I just got used to it... I think it's improved as my diet improved and/or caffeine intake dropped, hard to say for sure because I wasn't keeping notes, probably should have. I'll stop all the supplements except for my vitamin D and my fish oil. I'll get some magnesium as well.

[brandy]

Hi Kelly,

My snacks are often mini meals, i.e. small amount protein, small amt rice, a little overcooked veggies. (same as other meals of the day.) Welcome to the forum.