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Omg...i Might Be On To Something


Rachel--24

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Judyin Philly Enthusiast

"May we exist in muddy water with purity like the lotus"

Rinne--this was so beautiful..going to put in our garden club yearly directory. Thanks so much for the link to lymes. taking it to chiro this afternoon.

still trying to call the lymes testing site..

LauraJ your so welcome. think you said your 25..right, that's what got me as your just trying to start your career and new life..but on the bright side ..maybe you'll get your answers early instead of later like so many of us.

Hi Patti..are you enjoying the sunshine today. Trying to clean our bedroom and get things back into guest room and now have to get the deck plants in before the freeze. thank goodness i got most in early this year.

hate the thought of losing my impatients...oh heck, just realized i have to dig 4 holes to get plants in..grrr.

too much going on.

hugs to you all

judy

hey, susieQ see your on. love you too and your dingos:)

Laura,

That's great news. Now we have 4 appointments next week to look forward to.....five if you include the allergy/intolerance test for my kids and husband.

Rachel....Tuesday

Donna.....Wednesday

Laura......Wednesday

Rinne.......? What day is yours Rinne?

My family..Tuesday

Judy....let us know when your appointment is. :)

good grief...Andrea, your so on the ball.

i just got the insight last ntie and today the info to call..you know how long it takes to get these balls rolling. my apt for this will probably be in a year :lol: OMG did you mean apt today with chiro today taking all this info in..i'll post promise ..she'll be interested for sure.

thanks andrea for the dates..i'd never be able to keep it all straight..don't even know what thread i'm on..is the the rachel OMG thread...

can't multi task anymore..

:ph34r: used to be good at it.

judy


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DingoGirl Enthusiast
Judy, at this point it is a self-diagnosis supported by the doctor I am going to see who reviewed an email of my symptoms during our phone consult. I have had the rash, the fevers and nightsweats, the bone pain, the heart palpitations, the back pain, chest constriction, neck and jaw pain, floaters, shadows at the corners of my eyes, burning tingling on the back of my head in strange bands, nausea, digestion problems, bladder problems, numb extremities, arthritis in knee and hand, balance problems, and there's more but with the brain fog I will remember later. Oh yes, irritability and a sense of losing my mind. This steep decline began nearly four years ago after the rash which I had in a remote Colorado location where two years before two people were diagnosed with Lyme.

Rinne..... :( my heart breaks for you. can you imagine if you and Rachel and everybody else with these symptoms gets a Lyme dx??? and can GET ON with life? :) Should we start another thread? about battling Lyme? or maybe just put a giant disclaimer on teh first page - Rachel really CAN eat dairy, here's what's really the problem...

I didn't know deer ticks were so small. I have seen some tiny ticks, but they were discernible to the eye.

Rachel - I don't think deer get Lyme - I think they're immune - could those skanky deer have been molting or something? don't deer go through a molting season? when I was little I fed the deer constatnly near Yosemite, where we always stayed. they were beautiful adn gentle - until a huge buck got angry, reared up and scratched my forearms with his hooves....I ran like the devil and a man on his patio had to come out screaming to distract this deer and get him off my path..... :o

good morning to everybody. :)

TriticusToxicum Explorer
RACHEL. Get a hold of yourself. Never camping again??? the hell you say! :lol: Here's what you do.....you'll be using a natural (perhaps citronella-based, cannot remember now) insect repellant. You will inspect your entire body, head to toe, before bed....the WHOLE body, including scalp. if you're a hiker, you have to do a dorky thing with pants tucked into socks and ankle-high boots. You inspect again in the morning. Maybe.....The Dave can help. :blink::rolleyes::lol: Watch for ticks on your clothing - wear light-colored clothing - ticks are very visible.

Pyrethrin is the stuff.

Open Original Shared Link

Susan's right don't give it up! :( Tick pickin' parties can be fun - in the right company :P

I just want to say that i lurk around here and really respect what you all have going on in this thread. I get a warm fuzzy reading some of your posts. You guys all deserve the "retreat" for all the good vibes you send back and forth to one another. Keep up the good work, don't ever get too down. If you're feeling down let me know I'll come up with something to geta giggle out of you :P TAKE TIME TO LAUGH - it's been proven to release endorphins and other things I can't pronounce - and it's contagious! :o

Big HUG to one and all for sharing and CARING.

Ok back to being my silly self :)

DingoGirl Enthusiast

Thank you, goofball, for your little LOVE SURGE speech...... :) things are looking somewhat UP in Rachelville......

AndreaB Contributor

Morning Susan,

Good to see you. That buck....good thing a neighbor was around.

Pyrethrin is the stuff.

Open Original Shared Link

I just want to say that i lurk around here and really respect what you all have going on in this thread. I get a warm fuzzy reading some of your posts. You guys all deserve the "retreat" for all the good vibes you send back and forth to one another. Keep up the good work, don't ever get too down. If you're feeling down let me know I'll come up with something to geta giggle out of you :P TAKE TIME TO LAUGH - it's been proven to release endorphins and other things I can't pronounce - and it's contagious! :o

Big HUG to one and all for sharing and CARING.

Ok back to being my silly self :)

Thanks for posting Richard and reminding people to laugh. HUGS back to ya. :P

jerseyangel Proficient

Thanks Richard--that was vey sweet and thoughtful :) Lurk here anytime--and of course, feel free to make us laugh--you're a hoot (with a good heart :D )!

TriticusToxicum Explorer

All business today...

Open Original Shared Link

Open Original Shared Link

I've encountered my fair share of ticks. In my younger days I worked for a land surveyor and spent far too much time in tick infested areas. Repellents are nice, but tick-pickin' is essential. I could tell some stories about this that would get this thread Waaaaaaaaaaaay off topic :P

How-to:

Open Original Shared Link

Lyme info:

Open Original Shared Link

I've gone waaaaay over my seriousness quota for the day, maybe the week!


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DingoGirl Enthusiast

oh the ticks........EWWWWWWWWWWWWw..........OMG I never used tweezers - just pulled them out with my hand, counter-clockwise.....

:o:o:o

Mtndog Collaborator

I live in TICK CENTRAL USA (New England where deer ticks are rampant). One thing I've heard is that the problem with deer ticks, even if you have an "examination" or a picking party :D:P:ph34r: , they're so small that you might not see them. So, you have to be really really careful. Duh- you obviously know that!

lavendar is a good bug repellant (and you'll smell better than garlic)!

LauraJI AM SO EXCITED FOR YOU!!!!!!!!!!!!!!!!!!!!

Rachel--24 Collaborator
Laura, I'm so glad to hear you feeling hopeful, it is wonderful isn't it? Seems like we're all feeling hopefull lately. :)

Yup...the thread is overflowing with positivity, good vibes, HOPE and sooo much love and support. Its the greatest thing....I'm glad I came back from my little break....couldnt stay away from you guys for very long. :D

Laura, that is some really GREAT news!! I'm so glad you're feeling so much better about things now...I'm looking forward to how things go for you. :)

Laura,

That's great news. Now we have 4 appointments next week to look forward to.....five if you include the allergy/intolerance test for my kids and husband.

Rachel....Tuesday

Donna.....Wednesday

Laura......Wednesday

Rinne.......? What day is yours Rinne?

My family..Tuesday

Judy....let us know when your appointment is. :)

Andrea....how do you do it!! :blink:

I can barely remember my OWN appt....I always have to call and tell them I forgot. Even when they give me a little reminder card....I forget where I put it. :ph34r:

I have already forgotten when my next Dr. appt. is but I bet Dave remembers....his brain seems to function a little better than mine....only a teeny bit better though. B)

Stupid Lyme Disease. :angry: At least I have an excuse for my lack of brain cells now. :)

don't even know what thread i'm on..is the the rachel OMG thread...

can't multi task anymore..

:ph34r: used to be good at it.

judy

:lol::lol:

Judy,

Yeah...you're on the right thread. :)

I cant multitask either....used to be GREAT at it. Now its hard to stay focused on one thing....I cant venture out to all the threads on the board...I get overwhelmed sometimes. :ph34r:

Green12 Enthusiast
I've gone waaaaay over my seriousness quota for the day, maybe the week!

:lol: Richard

Thanks for your post and words of support. Welcome to the "wub" fest!! All "wubbin", all the time :lol:

Hi Judy :) So good to see you posting, know you have said before you do a lot of reading, more so than posting. Glad you are getting lots of good info here, so much to be learned for all of us who just don't heal on a gluten-free diet alone, still searching for the answers.

Rachel--24 Collaborator
Rachel - I don't think deer get Lyme - I think they're immune - could those skanky deer have been molting or something? don't deer go through a molting season? when I was little I fed the deer constatnly near Yosemite, where we always stayed. they were beautiful adn gentle - until a huge buck got angry, reared up and scratched my forearms with his hooves....I ran like the devil and a man on his patio had to come out screaming to distract this deer and get him off my path..... :o

good morning to everybody. :)

OMG Susan,

You totally crack me up! I was reading a nice story about you feeding the gentle deer...picturing the serenity of it all in my head and then you are RUNNING for your life from the angry and vicious Buck! :blink:

....and then you end it all with a "Good morning to everyone. :)"

You kill me. :lol::lol:

I just want to say that i lurk around here and really respect what you all have going on in this thread. I get a warm fuzzy reading some of your posts. You guys all deserve the "retreat" for all the good vibes you send back and forth to one another. Keep up the good work, don't ever get too down. If you're feeling down let me know I'll come up with something to geta giggle out of you :P TAKE TIME TO LAUGH - it's been proven to release endorphins and other things I can't pronounce - and it's contagious! :o

Richard,

Thanks for reminding us of the importance of laughter and warm fuzzy feelings. :)

Thats exactly what this thread is about "Sharing and Caring".

Oh.....and thanks for the scientificness!!

You have met your quota for the week. :lol:

Green12 Enthusiast
Wow, it seems like a lot of us are going down various-and yet similar-paths to find out what is going on! This is exciting to read about.

I must share my good news. I have an appointment scheduled for Wednesday at the National Institute of Health!!!!!!! We have family friends and business contacts who have pulled through and gotten us in touch with a variety of medical professionals. Some are still in the works, but this one moved quickly and got the app't. My mom spoke with his nurse and said she was wonderful. She told her briefly about my saga, about being called an anxious white female, how doctors aren't willing to help me, etc....and the nurse said that is what they hear all the time. How sad is that! My mom was very encouraged. The doctor was referred to us by another doctor at NIH, who said that he is "superb authority on immunologically mediated bowel disease".

So, at least it is a start. I'm not sure who else I will get in with, but its a START!!!!!!!! I feel such relief!

Laura, great news :):) I feel very hopeful for you!

AndreaB Contributor
Andrea....how do you do it!! :blink:

I can barely remember my OWN appt....I always have to call and tell them I forgot. Even when they give me a little reminder card....I forget where I put it. :ph34r:

I have already forgotten when my next Dr. appt. is but I bet Dave remembers

You could also tell me what time your appointments are and I'll note them down and call and remind you the day before.

Dave and I don't have brain fog or such......I assume he doesn't.....but he still eats gluten so maybe he does. :lol:

jerseyangel Proficient

I have a serious tick question. Are all of the ticks that carry Lyme tiny--to the point that they're hard to see? I had what I know was a tick on my arm, several years ago--it was black and looked exactly like the pictures--but it was just big enough for me to make out what it was--maybe 1/8 inch or so. I have no idea how long it was there, and brushed it off right away.

It was during a time when I was sick a lot--of course it's impossible for me to know what caused what, especially back then.

Rachel--24 Collaborator
I truly believe that my eventual diagnosis was a combination of Western Medicine, Alternative Medicine, and becoming proactive in my own health.

Patti....me too! Its the best combination I think and you just HAVE to be proactive....I cant imagine ever not being so involved in my health after all the things I've learned the last year.

You've got me all excited about my electronic test on Tues. Its so weird how that stuff can work....I was telling Dave I wasnt too keen about the "hocus pocus" of it all.....but sounds like theres really something to it!

I guess its like my Endocrinologist told me once.....We dont always understand why or how some things work....they just do.....he used acupuncture as an example. He said he had no clue about how it made people feel better but it obviously did. He was the only Kaiser Dr. I ever really liked....Kaiser had just started offering acupuncture as treatment (surpriseingly)....so thats why we were discussing alternative stuff.

TriticusToxicum Explorer
I live in TICK CENTRAL USA (New England where deer ticks are rampant). One thing I've heard is that the problem with deer ticks, even if you have an "examination" or a picking party :D:P:ph34r: , they're so small that you might not see them. So, you have to be really really careful. Duh- you obviously know that!

lavendar is a good bug repellant (and you'll smell better than garlic)!

You really have to look closely at areas covered by hair. They like to get to somewhere where they are protected. I've had them in my armpits, behind my ears, all over my legs (they especially like the backs of knees for some reason), not to mention unmentionable places :ph34r: . They wiggle in under waist bands and socks and latch on.

I've never used tweezers either I just pick them off. They are pretty much indestructible until they feed. A guy i worked with used to put a match to them and "pop" them off - not recommended, they end up barfing into the wound before they pop, increasing the chance of transmission. Fun to watch though :D

AndreaB Contributor
A guy i worked with used to put a match to them and "pop" them off - not recommended, they end up barfing into the wound before they pop, increasing the chance of transmission. Fun to watch though :D

Eeeeewwwwwwwww. I've got to get the baby his breakfast. Good thing I'm not eating yet. Yuck.

Rachel--24 Collaborator
JUDY--PS WAS JUST THINKING I KNOW I HAVE MCS AS I REACT SO FAST TO MANY CHEMICALS BUT AM REALLY WORRIED ABOUT THE BLACK MOLD ON KITCHEN CEILING AND RENNI I THINK AGREED IT WASN'T A GOOD THING.

Judy,

My Dr. really stressed to me the importance about avoiding mold. Too much exposure can be bad for anyone but especially for someone with MCS. I think it could worsen the condition of anyone whos already weakened by other health problems. I would definately look into getting the mold taken care of.

I think it would be good if you can get a Dr. to order the Igenix test....I started worrying when you said you'd had ticks and bulls-eyes before. I know you've been struggling with everything so at least just get the test to make sure thats not causing all of this other stuff.

They say Lyme is the great "imitator"....can mimick so many diseases. My Dr. said the same thing....it can be mistaken for almost anything.

jerseyangel Proficient
Patti....me too! Its the best combination I think and you just HAVE to be proactive....I cant imagine ever not being so involved in my health after all the things I've learned the last year.

You've got me all excited about my electronic test on Tues. Its so weird how that stuff can work....I was telling Dave I wasnt too keen about the "hocus pocus" of it all.....but sounds like theres really something to it!

I guess its like my Endocrinologist told me once.....We dont always understand why or how some things work....they just do.....he used acupuncture as an example. He said he had no clue about how it made people feel better but it obviously did. He was the only Kaiser Dr. I ever really liked....Kaiser had just started offering acupuncture as treatment (surpriseingly)....so thats why we were discussing alternative stuff.

I think the electronic test will be very revealing. All of these things--the electronic testing, Kinesiology, Accupuncture--they are all sort of based on the energy meridians that we all have runnung thru our bodies. The Chinese have been using them for like 4000 years! There is definately something to it--in addition to gluten, I was told to avoid legumes, coconut, soy and corn!! This is exactly what I do now, but of course I had to do it the hard way thru elimination diet. Had I listened, and followed the advice to the letter, I would have been better off. My grandfather, God rest him, would have called me a 'hard head' :D

Of course, the Kinesiologist didn't use the term Celiac, but by "asking" my body what it did and didn't need, came to the same conclusion, basically. Just because something's not written down somewhere in a medical journal, does not mean it's completely without merit. I think that Alternative/Chinese medicine and Western Medicine can and should learn from each other.

Rachel--24 Collaborator
Rachel, once ticks are engorged they fall off, they don't die they live on on our blood and when it is gone they can still live for years apparently in some kind of hibernation. I think other tick bites can lead to other co-infections which we haven't even got to yet. Different co-infections manifest differently in the body and that is why a LLMD is so important because the treatment for each one varies. And yes ticks are in tall grass and they jump.

Rinne,

Good point about the co-infections. Big worries about that too. Didnt you say that Tailz tested negative for co-infections? (or was that Robbin who mentioned it). I would feel blessed if I dont have any co-infections....I'm also worried that I may have gotten a co-infection while on that camping trip. If I already had the Lyme for 2 years...maybe a co-infection could have tipped the scales and got me sick like this. I still think it was the mercury though. How are the co-infections tested? Does Igenix test for them....I thought they did??? :unsure:

Your comment about the deer roughing it just totally cracked me up, you are such a city girl. :lol:

Yeah....I suppose I am. :ph34r: Even though I love camping and outdoor activities....I gotta say...I wont camp anywhere that doesnt have all the amenities. I'm talking clean restrooms, showers, general store, boat ramp, picnic tables...etc....and you should see all the stuff I bring with me! :o

Rachel--24 Collaborator
This made me think, actually I think you answered your own question. I am thinking the deer didn't look so healthy because they keep getting fed by humans. We have these birds here, they are huge black birds, not really sure what kind because I don't know much about birds, maybe crows, I don't know? But they have figured out how to get food out of the trash cans behind fast food restaurants and other eating establishments, no joke that's where you will find them, anywhere the food is disposed of. And they have gotten enormous, freakishly enormous!! And they look so sickly. They disappeared for about 2 years, I don't think by accident, and now I have noticed seeing them again hanging around the trash cans. This is what our food supply is doing to them.

That is such a good point Julie! I never even thought about that....of course back then I never gave a second thought to what I ate...let alone the deer. :rolleyes:

They ate all my marshmallows!! They must have been sugar addicts! OMG....no wonder why they were coming down the hill by the dozens.....they were driven by the MSG! :o

That is such a scary thought....I love wildlife....now I am feeling so guilty for feeding them bread and leaving marshmallows and hotdogs and other stuff out where they could get it. :(

Yes....I was shocked....apparantly deer will eat *anything*. I thought they ate bugs and grass. :blink:

Maybe these deer had lots of ticks and other things feasting on them because of the junk food diet they were obviously on. They must have been addicted to our food...cant imagine why else they would keep invading our campsite. I dont think its normal deer behavior at all....it got to be a real nuisance too....they werent afraid at all...looking for food both night and day. AFter a few hours I had put my camera away and wasnt too excited about the deer anymore....wanted them to go away. :(

I live in TICK CENTRAL USA (New England where deer ticks are rampant). One thing I've heard is that the problem with deer ticks, even if you have an "examination" or a picking party :D:P:ph34r: , they're so small that you might not see them. So, you have to be really really careful. Duh- you obviously know that!

Can deer ticks be just in the woods and not necessarily on any deer?? When I was in Tahoe I didnt actually see any deer but walked around in the woods.

DingoGirl Enthusiast
OMG Susan,

You totally crack me up! I was reading a nice story about you feeding the gentle deer...picturing the serenity of it all in my head and then you are RUNNING for your life from the angry and vicious Buck! :blink:

....and then you end it all with a "Good morning to everyone. :)"

forgot to mention...the man who chased the deer was barbecuing, so ran out like a crazy person, waving his meat tongs wildly in the air......THAT scared 'em off! :)

You could also tell me what time your appointments are and I'll note them down and call and remind you the day before.

Andrea - - OMG - - I'll email you all my appts, then you can call me - - like Rachel, I forget everything and lose the tiny cards..... :ph34r: Maybe you could come down here and help me run my scattered life for a while? ;)

Laura - yes, such good news!! :)

TriticusToxicum Explorer
Can deer ticks be just in the woods and not necessarily on any deer?? When I was in Tahoe I didnt actually see any deer but walked around in the woods.

Yeah, they hang out on the underside of leaves, grass blades, etc and wait to hitch a ride when a warm blooded animal passess through and brushes against whatever they're hiding on.

Rachel--24 Collaborator
I have a serious tick question. Are all of the ticks that carry Lyme tiny--to the point that they're hard to see? I had what I know was a tick on my arm, several years ago--it was black and looked exactly like the pictures--but it was just big enough for me to make out what it was--maybe 1/8 inch or so. I have no idea how long it was there, and brushed it off right away.

It was during a time when I was sick a lot--of course it's impossible for me to know what caused what, especially back then.

Patti...I dont know this either....hoping somebody else does. :unsure:

Seems like all the people getting big and noticeable ticks on them dont actually end up with Lyme. :unsure:

I'm wondering about actual size of ticks that carry Lyme. I think I read that here in CA...the tick that carries Lyme is usually the black-legged tick. I'm pretty sure thats what I read. I gotta go look up that info again...I wanna see how big they are...if they're deer ticks, and if they are in Tahoe area.

Thats my mission for the day I think.

Yeah, they hang out on the underside of leaves, grass blades, etc and wait to hitch a ride when a warm blooded animal passess through and brushes against whatever they're hiding on.

:(

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      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
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