Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

Woolygimp

Synopsis Of My Last Four Days Casein Free.

Recommended Posts

I've been gluten free for around a year and change and during this period I showed a considerable improvement, but I never felt 'well'.

As a child I was always very small and thin, but I was considered very intelligent. At around 17 everything reversed, I gained a considerable amount of weight and suffered a myriad of symptoms. About three years passed and the doctors had tested everything. It's about this time that I stumbled across this site and Celiac disease; I immediately had my blood tested and it came back negative, then I went through Enterolab and results showed me very positive to both the gluten and casein allergies.

I began following a gluten-free diet and I made the occasional mistake (who hasn't?). My physical symptoms improved and my liver ALT/AST levels dropped from a dangerously high levels. I noticed roughly 50% improvement and the rest and rashes all over my body cleared up after a couple months.

I never felt like I knew I should feel, instead I felt dumb. I had known what it's like to be smart, to have a quick wit, and to be extremely responsive and all that was lost. I was very forgetful; I'd almost compare it to a mild form of Alzheimer's. I could barely carry conversations; constant fatigue, brain fog, loss of motivation, and borderline depression plagued me. Most of my mental symptoms continued even after following the gluten free diet. Incidentally, most of my diet from this point on had consisted of dairy... and by most, I mean the overwhelming majority. I ate cottage cheese, yogurt, cheese, more cottage cheese, and more yogurt.

Milk/Ice Cream would instantly put me to sleep for hours, if I had either before going to sleep I'd easily sleep for 15+ hours. I had started to avoid these but I had never experienced anything that strong eating the cheeses and more refined dairy, so I continued.

I had read a post by a mother commenting on her son's improvement following a casein free diet roughly five days ago, and decided "what the hell, I'll give casein free a shot". What has followed has been roughly the four most energetic days that I've experienced in years. Normally, I wouldn't be here writing this...I just wouldn't have the motivation but for the last couple of days I have felt amazing.

If there's been anything that I've learned in my period of sickness is that I shouldn't draw quick conclusions; an insurmountable amount of factors are present at any given time in most real-life scenarios (especially ones dealing with health), and one should always resist ruling others out prematurely. So I'm not going to say I'm convinced that it's a fact that casein is directly responsible for my ailments at this point in time, but I'll be damned if it doesn't feel like it.

That said, I feel great! My physical symptoms haven't responded as quickly but they are showing improvements. I expect it to take some time and I'm very eager to see how I respond in the long-term and I'm hoping that long last I found what I needed to and this is the answer. My mental symptoms have almost completely subsided.

I just wanted to comment on how much of a contrast there was. Barely responsive, fatigued to the bone - one day - and can't keep me down the next. Did I mention I feel great?

One thing that I was wondering, why isn't there more information on casein intolerance to begin with? You can do a search and almost all of your hits will be bogus supplements or articles about autism, and whether or not a Gluten-free Casein-free diet actually works. There's almost no information out there regarding it's effects on adult celiacs, whether or not it causes an immune response, or it's relation to ailments such as autoimmune diseases and basic enzyme dysfunction. I couldn't find anything out there and that's the primary reason that I had never thought to exclude dairy before -- I figured 'lactose intolerance' yeah, I have that... but so what? I'll deal with it.

Has anyone had anything similar happen to them? Can anyone point me to some worthwhile articles by the medical community? The reason I say medical community is that there are quite a lot of 'disgusting' people out there looking to profit off of the misfortune of those without optimal health. Bogus claims, bogus products (supplements) and just a lot of misinformation.

Anyway, I'll let you guys know how it turns out. Hope for the best.

-Thanks.

Enterolab Results:

Date Specimen Received

05/24/2007

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 11 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 24 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,6)

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Amazing transformation isn't it? :)

I thought there was a decent amount of Gluten-free Casein-free info in relation to celiac, but yes, there is a lot more that's not.

I know a kid that's something towards autistic and sadly, his mom won't consider Gluten-free Casein-free - too hard :o - tho she spends much time & $$ looking for other answers.

But back to Celiac.

Many HERE know casein is a common problem for us. Incredibly tho, when I saw a so-called Celiac expert at Stanford, I was dismayed to see the waiting room's non-dairy creamer has casein. Ugh. It was a room primarily for Celiac patients!!!!!!

It SHOULD be more well-known.

Great to hear your story of triumph!! :)


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

Share this post


Link to post
Share on other sites

Join eNewsletter

Amazing transformation isn't it? :)

I thought there was a decent amount of Gluten-free Casein-free info in relation to celiac, but yes, there is a lot more that's not.

I know a kid that's something towards autistic and sadly, his mom won't consider Gluten-free Casein-free - too hard :o - tho she spends much time & $$ looking for other answers.

But back to Celiac.

Many HERE know casein is a common problem for us. Incredibly tho, when I saw a so-called Celiac expert at Stanford, I was dismayed to see the waiting room's non-dairy creamer has casein. Ugh. It was a room primarily for Celiac patients!!!!!!

It SHOULD be more well-known.

Great to hear your story of triumph!! :)

Print her out a copy of my post and give it to her. Although I was never autistic, I can definitely relate to just how much it can affect someone.

I would not be surprised at all if it was capable of causing autism or something related to it. I cannot describe how much of a transformation (as you would call it) that I've experienced in the last couple of days. Drugged is the best way I could describe the feeling. [i know Casein can be an opioid when presented in the bloodstream]

Three-four years of the best years of my life were wasted because I didn't have access to this information, nor anyone to guide me to it. It was that bad.

Anyway, what's the deal with soy? I see a lot of Celiacs avoid it as well but most of the dairy substitutes are soy-based. Any good literature on it and why it's relevant to Celiac disease?

Share this post


Link to post
Share on other sites

Join eNewsletter

I can tell you that after wheat, rye, barley, and oats, soy is the next in line. Many celiacs can not tolerate soy either. I am betting as time goes by, we will fine there is a level of celiac by grains. The original 3, then 4, and eventually all grain intolerant. I do not tolerate any grains. My mom will say to me, "Soy is not gluten, you can have it!" Well, I can't, end of story.

I have been investigating this dairy, lactose, casein theory. Where do I get information on casein? I really do not want to give up my dairy too! :(


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

Share this post


Link to post
Share on other sites

Join eNewsletter

I am CF now too and it has helped with GI problems but I still have the processing problems that you described and it is frustrating. I suspect nutrient deficencies but I pass out everytime I have blood drawn so it's hard to drag myself in and go through that to get tested, even though I really want to find out. Sigh... After hearing from you I will hold on to some hope that I will get my mind back some day. It's improved alot but not as much as I'd like.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

Share this post


Link to post
Share on other sites

Join eNewsletter

:P Lets see you gave up half of what you tested intolerant to & got a 50% improvement!!! :lol::lol:

but seriously, yes dairy can be as destructive to some of us as gluten, if not more so...

anyone that does not want to give up dairy is just kidding themselves. Dairy is very very addictive & a lot harder to give up than gluten. That is why some people will not/cannot give it up.

The good news for me is that after many years of trying to add dairy back in & it never working, I gave up & realized that it was not good for me. (I am also mostly grain free) now if I want to bake something once or twice a year, I can have some butter & not have a problem. & I let myself have a little See's chocolates & do not have a problem. but can I buy a little hard cheese to cook with - NO, I cannot ever...

Share this post


Link to post
Share on other sites

Join eNewsletter

We are a dairy/casein-free home here as well. I was a dairy fiend prior to discovering all of my dd's food issues. Before this all came down....I couldn't imagine life without dairy. lol! It is strange how life throws you curve balls that you'd never imagine being able to handle.

That being said, I do have some articles on the problems associated with dairy. You can also find more "medical" information if you do a search on "alpha s1 casein". That seems to be the protein that is most likely to cause autoimmune problems.

In the meantime, these articles do give a good general overview...though not one specific to Celiac. HTH

http://www.guardian.co.uk/weekend/story/0,...1104740,00.html

http://www.pcrm.org/health/Info_on_Veg_Diets/dairy.html

http://www.icpa4kids.org/research/articles.../dairydogma.htm

I've been gluten free for around a year and change and during this period I showed a considerable improvement, but I never felt 'well'.

As a child I was always very small and thin, but I was considered very intelligent. At around 17 everything reversed, I gained a considerable amount of weight and suffered a myriad of symptoms. About three years passed and the doctors had tested everything. It's about this time that I stumbled across this site and Celiac disease; I immediately had my blood tested and it came back negative, then I went through Enterolab and results showed me very positive to both the gluten and casein allergies.

I began following a gluten-free diet and I made the occasional mistake (who hasn't?). My physical symptoms improved and my liver ALT/AST levels dropped from a dangerously high levels. I noticed roughly 50% improvement and the rest and rashes all over my body cleared up after a couple months.

I never felt like I knew I should feel, instead I felt dumb. I had known what it's like to be smart, to have a quick wit, and to be extremely responsive and all that was lost. I was very forgetful; I'd almost compare it to a mild form of Alzheimer's. I could barely carry conversations; constant fatigue, brain fog, loss of motivation, and borderline depression plagued me. Most of my mental symptoms continued even after following the gluten free diet. Incidentally, most of my diet from this point on had consisted of dairy... and by most, I mean the overwhelming majority. I ate cottage cheese, yogurt, cheese, more cottage cheese, and more yogurt.

Milk/Ice Cream would instantly put me to sleep for hours, if I had either before going to sleep I'd easily sleep for 15+ hours. I had started to avoid these but I had never experienced anything that strong eating the cheeses and more refined dairy, so I continued.

I had read a post by a mother commenting on her son's improvement following a casein free diet roughly five days ago, and decided "what the hell, I'll give casein free a shot". What has followed has been roughly the four most energetic days that I've experienced in years. Normally, I wouldn't be here writing this...I just wouldn't have the motivation but for the last couple of days I have felt amazing.

If there's been anything that I've learned in my period of sickness is that I shouldn't draw quick conclusions; an insurmountable amount of factors are present at any given time in most real-life scenarios (especially ones dealing with health), and one should always resist ruling others out prematurely. So I'm not going to say I'm convinced that it's a fact that casein is directly responsible for my ailments at this point in time, but I'll be damned if it doesn't feel like it.

That said, I feel great! My physical symptoms haven't responded as quickly but they are showing improvements. I expect it to take some time and I'm very eager to see how I respond in the long-term and I'm hoping that long last I found what I needed to and this is the answer. My mental symptoms have almost completely subsided.

I just wanted to comment on how much of a contrast there was. Barely responsive, fatigued to the bone - one day - and can't keep me down the next. Did I mention I feel great?

One thing that I was wondering, why isn't there more information on casein intolerance to begin with? You can do a search and almost all of your hits will be bogus supplements or articles about autism, and whether or not a Gluten-free Casein-free diet actually works. There's almost no information out there regarding it's effects on adult celiacs, whether or not it causes an immune response, or it's relation to ailments such as autoimmune diseases and basic enzyme dysfunction. I couldn't find anything out there and that's the primary reason that I had never thought to exclude dairy before -- I figured 'lactose intolerance' yeah, I have that... but so what? I'll deal with it.

Has anyone had anything similar happen to them? Can anyone point me to some worthwhile articles by the medical community? The reason I say medical community is that there are quite a lot of 'disgusting' people out there looking to profit off of the misfortune of those without optimal health. Bogus claims, bogus products (supplements) and just a lot of misinformation.

Anyway, I'll let you guys know how it turns out. Hope for the best.

-Thanks.

Enterolab Results:

Date Specimen Received


Vicky

Share this post


Link to post
Share on other sites

Join eNewsletter

Maybe the reason going off diary helps is because dairy actually could contain either gluten or gluten metabolites present from giving the cows grains..

INSTEAD OF GRASS LIKE THEY ARE SUPPOSED TO EAT!

so your test should be to get grass-fed dairy products, try them...and report back (or the very least PM me) if they bother you.

I would be interested.

I'm going off all dairy now also. Even butter.


I eat whatever I want. But I listen to my body. I just can't eat a lot of diary or grains. If I do eat them, I savor and chew them slowly and well... I don't like feeling sluggish and if I eat alot of those things I start feeling sluggish. I feel very cleaned out now. I like to eat lots of raw fruits and veggies. I think for me I just can't eat things that are inflammatory, and dairy and all grains are inflammatory to me. So looks like I'll be eating mainly fruits, veggies, wild or grass-fed meats, and figure out what other stuff I can eat thats not too inflammatory. I'll probably also drink wine or brandy and use other plants things that are anti-inflammatory. Yeah!

Share this post


Link to post
Share on other sites

Join eNewsletter

I think there's a real strong entrenched resistance to looking at the typical dietary components because everyone likes to eat that way and doctors assume that people won't comply with dietary restrictions. So most researchers avoid researching that. Also, it is really hard to get research funds for anything outside the ordinary. That is exactly how the ADA treats diabetics. They assume they won't stop eating sugar and starches so they give you medication to make up for it... except it doesn't really work.

Anyway, food intolerances can be really insidious. I had a whole bunch of strange things that happen to me with dairy products I never heard anyone else suffer with like muscle spasms. Some of the other ones are more typical, excess mucous, sinus problems, congestion and constipation.

I keep slipping off the casein free diet though and I can get away with a couple of days of bad eating but then the symptoms come roaring back.

I still have issues with my energy levels though.

Share this post


Link to post
Share on other sites

Join eNewsletter

I've had a hard time giving up dairy. I've cut back a lot, and only eat cheese, but it's my one fun thing left to eat. I don't do gluten, soy, corn, most meats. I sometimes feel like so many parts of my life are regulated that I just have to have one thing that's bad for me. It's just unfortunate that 'bad for me' equates to immediate abdominal discomfort rather than massive heart attack 30 years later. :rolleyes:


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites

Join eNewsletter

Casein is one of the proteins in dairy. Lactose, which you often hear of people being intolerant of, is a sugar. You can remove lactose fairly easily by fermenting dairy into cheese or yogurt, but casein you can't. So if you're avoiding casein you really need to give up all dairy.

Share this post


Link to post
Share on other sites

Join eNewsletter

You're right there is not much info on casein out there...i've been wondering why as well. I think it's because it's still an unrecognized sensitivtiy by the scientific community. They are used to milk allergies to be in babies and grown out of. I did find a few articles when I searched "adult onset milk allergy"--my own reactions to dairy after being off of it now for almost a year are very close to being allergic like with a tight throat/breathing issues etc. But i've found that some forms of dairy just cause me to crash and sleep for two hours, others cause joint pain...I never wrote down what caused what and now i'm too scared to have any dairy.

The other thing you might want to check into is your thyroid and iron/ferritin levels. Hypothyroid is very common in celiacs and can cause all the symptoms you mentioned, so if cutting the dairy doens't resolve them all, ask for TSH, Free T3 and free T4 tests...and ask people familiar with holistic care to interpret rather than your regular doctor as they just don't know how to interpret them in general! (TSH >2.0 with symptoms can by hypothyroid but docs say it's ok until 4.5).

The reason people with gluten problems also have problems with casein and soy is because the 3 proteins are very similar in structure, with only a few amino acid sequences being different. So once the body has identified gliadin as an invader, it can't differentiate between that and casein, soy so it mounts up the defenses against those too. Also, leaky gut causes molecules to get into blood stream so immune system ramps up against those too, which can be all kinds of foods.

Glad you're feeling so much better! :)

Liz


Liz

Positive enterolab results 11/07:

-antigliadin IgA: 56 (normal <10)

-antitissue tTG IgA: 39 (normal <10)

-anti-casein IgA: 34 (normal <10)

-HLA-DQ: 2,1 (2,6)

Positive blood test IgA and IgG 12/07

Gluten-free Casein-free since 12/07

mostly soy free since 12/07

Diagnosed with adrenal fatigue 08/07

Diagnosed hypothyroid 01/08

Still have mercury fillings, high mercury and lead

Multiple chemical sensitivities

9 year old daughter positive enterolab test for gluten, casein, soy and egg with HLA-DQ 3,1 (7,6)--mostly exhibits behavioral reactions to foods including food dyes, MSG, aspartame

Mother passed away 3 years ago of adenocarcinoma of unknown primary. Two years prior had diarrhea causing her to weigh 86 pounds...Mayo clinic told her to take pepto bismol. NO test for celiac, lifelong hx of ulcers, osteoporosis. I now know she had the celiac gene (my dad has DQ1) and was probably undiagnosed her whole life.

Share this post


Link to post
Share on other sites

Join eNewsletter

A friend has an adult son who is and always has been anaphylactic to casein. I asked her where she went for info and she said that because he is part of a study by their insurance (Kaiser) she really doesn't do much internet research on the topic. (For other health issues in the family she digs long and deep, but not for that one.) Any time she or her son have any questions, they just call their doctor and get an answer. More personal than the internet! :)

So there is research being done, and scientific interest out there, but perhaps it just has not been made available online yet.


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter