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Hi everyone! 

I got diagnosed last August after suffering from Mono. Since then things have been okay but not great. Still an icky stomach, started taking pre/probiotics and some vitamins. Now after a year a few months..for a week or two I’ve been getting migranes, sinus pressure and body aches? (Which is weird)..I’m currently putting myself on a dairy-free diet to see if it will help. I hope it does but the other part of me hopes it isnt dairy and maybe ive just glutned myself somewhere in the past week lol. I love my cheese, I can live without milk but cheese is my thing! Any sugguestions or help if anyone is dairy free and these were also their symptoms? Thanks! 

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Could your probiotics or vitamins have gluten in them?

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33 minutes ago, BrittanyM said:

Hi everyone! 

I got diagnosed last August after suffering from Mono. Since then things have been okay but not great. Still an icky stomach, started taking pre/probiotics and some vitamins. Now after a year a few months..for a week or two I’ve been getting migranes, sinus pressure and body aches? (Which is weird)..I’m currently putting myself on a dairy-free diet to see if it will help. I hope it does but the other part of me hopes it isnt dairy and maybe ive just glutned myself somewhere in the past week lol. I love my cheese, I can live without milk but cheese is my thing! Any sugguestions or help if anyone is dairy free and these were also their symptoms? Thanks! 

Plenty of dairy free cheese, I make own cheese sauce, I buy dairy free cheese extracts, I make my own vegan Parmesan, and I buy dairy free cheese often. I love the new leaf cuisine diary cheese spreads, the smoked Gouda is to die for. I sometimes snack on daiya cheese like yesterday I had some Daiya Havarti and jalapeno slices with my omelette. Bit of a list at the end of this, note their are more options but the ones are things I have tried and are also soy free. The dairy thing is something most celiacs only have a issue with for a few months. Some have life time issues with dairy like me, I also went and watched a bunch of anti diary propaganda and did a bunch of research to convince myself to give it up when I became lactose intolerant 10+ years ago. >.> like why do human drink cow milk....same as drinking dog milk.,...both not for human consumption why drink it when it is meant for another species. Anyway just what I confirm with myself to no touch it.

Dairy Free Alternatives to Dairy Foods

https://www.bluediamond.com/brand/almond-breeze
^ Almond, cashew, coconut, blends etc.

https://silk.com/products
^ More Almond, cashew, coconut, blends, they also offer yogurt and icecream alternatives.

http://sodeliciousdairyfree.com/products
^ They offer many coconut options, Yogurt, cheese, milks, icecream pints, icecream bars.

http://malkorganics.com/products/
^VERY high end minimally processed almond milk, one the the best

https://www.ripplefoods.com/products/
^ NUT FREE, Dairy Free options of a rich milk alternative from yellow peas (legumes)

http://goodkarmafoods.com/products/
^Flax Based milk alternatives

http://www.leafcuisine.com/raw-vegan-food-dairy-free-probiotic-cashew-spreads/
^ BEST and least processed cheese spreads, cream cheese etc. I can eat these without any issues

https://daiyafoods.com/
^Offers Vegan cheese slices, cheese blocks, cheese shreds, pizza, CHEESE CAKES!, yogurt, s

https://followyourheart.com/products/
^ Diary free and vegan, cheese, spreads, dips, dressings, condiments

https://winkfrozendesserts.com/collections/wink-frozen-desserts-pints
*^ICE CREAM by the pint AND THEY SHIP IT TO YOU, Dairy free, soy free, sugar free, PERFECT bliss I suggest getting the gluten free pastry pack

PS I have a vegan bacon cheese sauce and a vegan queso dip on my recipe blog on my profile if you want to try them both are good in other recipes like the sauce makes a excellent base in potato gratin or broccoli casserole.

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I am not able to eat dairy and it has been over three years since diagnosis of celiac.  However, I am not lactose intolerant.  My symptoms are headache, neck and back pain l, congestion and swollen joints.  I have been told it is the protein in dairy for me versus the lactose.  I have also been allergy tested and do not have an allergy.  And like you...  I LOVE cheese.  Sometimes I go for it and just know that I will suffer the consequences.  Keep a food journal because I also react to corn, oats, soy and eggs.  All inflammatory foods to boot!  Good luck.

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The casein in milk is very similar to the gluten protein, and over time the ammune  system can react to the casein as though it was gluten. This happens over time, and though you may have been able to consume dairy previously, you may have to avoid it now. Not good to suffer the consequences, it can do damage that you are not aware of.

 

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1 hour ago, PTArt said:

The casein in milk is very similar to the gluten protein, and over time the ammune  system can react to the casein as though it was gluten. This happens over time, and though you may have been able to consume dairy previously, you may have to avoid it now. Not good to suffer the consequences, it can do damage that you are not aware of.

 

Is there new legitimate research on this?  Please post a link.  I have not seen anything that proves that assumption.

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There's this study...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

On 12/12/2017 at 8:12 AM, kareng said:

Is there new legitimate research on this?  Please post a link.  I have not seen anything that proves that assumption.

 

On 12/12/2017 at 7:04 AM, PTArt said:

The casein in milk is very similar to the gluten protein, and over time the ammune  system can react to the casein as though it was gluten. This happens over time, and though you may have been able to consume dairy previously, you may have to avoid it now. Not good to suffer the consequences, it can do damage that you are not aware of.

 

 

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2 hours ago, knitty kitty said:

Knitty Kitty, 

Did you read and understand the study?  It did not say that milk proteins can trigger celiac disease (or mention cross reactions), but that they can cause an inflammatory response similar to what occurs in Celiac patients.  The study suggests this might be as a result of a leaky gut and other food proteins may cause the same effects.  We all know that celiacs tend to have too much zonulin causing “leaky gut” for a better term.  Foods, like corn, soy, etc. can cause the same effect (villi damage or symptoms)  as stated in the study.  

The milk proteins did NOT raise specific antibodies for gluten.  However, they can damage intestinal villi (as can many things besides gluten).  

https://www.verywell.com/villous-atrophy-562583

The study suggests that if celiac disease patients are still experiencing symptoms they may need to look for hidden gluten or consider a milk (or another food) protein intolerance.  

We normally suggest to people who are not recovering fast on a gluten free diet to maintain a food/symptom diary to help indentify additional food intolerances or allergies.  After all, celiac disease is under the umbrella of Hypersensitivity (Type 4) and it makes sense that we would be more intolerant or allergic than the average person.  

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15 minutes ago, cyclinglady said:

Knitty Kitty, 

Did you read and understand the study?  It did not say that milk proteins can trigger celiac disease (or mention cross reactions), but that they can cause an inflammatory response similar to what occurs in Celiac patients.  The study suggests this might be as a result of a leaky gut and other food proteins may cause the same effects.  We all know that celiacs tend to have too much zonulin causing “leaky gut” for a better term.  Foods, like corn, soy, etc. can cause the same effect (villi damage or symptoms)  as stated in the study.  

The milk proteins did NOT raise specific antibodies for gluten.  However, they can damage intestinal villi (as can many things besides gluten).  

https://www.verywell.com/villous-atrophy-562583

The study suggests that if celiac disease patients are still experiencing symptoms they may need to look for hidden gluten or consider a milk (or another food) protein intolerance.  

We normally suggest to people who are not recovering fast on a gluten free diet to maintain a food/symptom diary to help indentify additional food intolerances or allergies.  After all, celiac disease is under the umbrella of Hypersensitivity (Type 4) and it makes sense that we would be more intolerant or allergic than the average person.  

That's what I thought, too!  

I think a lorn of people are having problems with lactose.... not casein.  I know one of the above posters said low lactose foods were fine

 

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On 12/7/2017 at 4:51 PM, BrittanyM said:

Hi everyone! 

I got diagnosed last August after suffering from Mono. Since then things have been okay but not great. Still an icky stomach, started taking pre/probiotics and some vitamins. Now after a year a few months..for a week or two I’ve been getting migranes, sinus pressure and body aches? (Which is weird)..I’m currently putting myself on a dairy-free diet to see if it will help. I hope it does but the other part of me hopes it isnt dairy and maybe ive just glutned myself somewhere in the past week lol. I love my cheese, I can live without milk but cheese is my thing! Any sugguestions or help if anyone is dairy free and these were also their symptoms? Thanks! 

BrittanyM et al,

I just wanted to post this thread that might answer some of your questions about Casein/Dairy JMG had a similar question.

It has two livestrong links in it that explains well about the different kinds of Casein proteins.

I did not know there "types" of the casein protein but like you I knew I was reacting to dairy.

https://www.livestrong.com/article/495564-what-is-sodium-caseinate/

https://www.livestrong.com/article/396733-types-of-casein-protein/

according to livestrong you are out of luck if can't live without cheese if indeed casein is your problem and not lactose.

from livestrong " There is no way to make cheese free of casein proteins. Do not eat cheese if you’ve been diagnosed with a milk allergy."

but there are lactose free cheeses and they will be labeled so like the gluten free things are.

I think the study Knitty Kitty linked studied Cow's Milk . .. it might be you don't react the same to goat's milk or goat cheese since these casein's are different from CM's caseins' according to livestrong.

who knew right?

I hope this is helpful.

posterboy,

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Lactose intolerance occurs when you lack the enzyme (called lactase) necessary to properly break down the milk sugar lactose.  That undigested milk sugar cannot enter the body. But it then feeds gut bacteria producing gas, bloating, discomfort/pain.   There are no extra intestinal symptoms (this is an important point).

However, gut dysbiosis can ultimately be the result of lactose  intolerance (or any sugar intolerance).  Two things have been demonstrated to increase zonulin production (which opens the tight junctions, resulting in leaky gut): Gluten and Bacteria. SIBO (small intestine bacterial overgrowth), which can occur because of lactose intolerance, is essentially a bacterial infection of the small intestines and results in increased intestinal permeability (AKA leaky gut). SIBO can also damage the villi, making your ability to break down foods more compromised, feeding the SIBO/leaky gut cycle. 

With leaky gut you now have large proteins entering the bloodstream illicitting an immune response.  This is the cause of the extra intestinal symptoms and other protein intolerances.   

Its also worth noting that there is a fairly high prevalence of SIBO in those with celiac disease.

See this very informative lecture given by Dr. Fasano on the topic of intestinal permeability:

Zonulin, intestinal permeability and immune mediated disorders: facts and fantasies

https://cellsciencesystems.com/education/webinars/zonulin-intestinal-permeability-and-immune-mediated-disorders-facts-and-fantasies/

 

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"Activation of the adaptive immune system is one prerequisite for the occurrence of celiac disease and is reflected by the development of gliadin antibodies and auto antibodies. Our finding that, in a fraction of coeliac patients, CM protein challenge may induce an inflammatory reaction of the same magnitude, as did gluten challenge, may also suggest an innate as well as adaptive immune response to CM, and casein in particular. However, lack of increased serum antibodies to casein in our casein-sensitive coeliac patients may suggest that casein is less prone than gliadin to drive adaptive immunity."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

Adaptive as well as innate immune response to casein is possible though not as common.  Casein can cause a reaction as severe as gluten.  

http://journals.sagepub.com/doi/abs/10.1177/1082013207077954

"Rich sources of celiac-disease-potentiating peptides were wheat gliadins, barley hordeins and rye secalins as well as low-molecular weight fractions of glutenin. In addition, amino acid sequences with a high degree of identity to the toxic peptides examined were detected in maize zein, oat avenin, protein of rice, yeast and chicken muscles, as well as β-casein and galanin."

Toxic peptides in corn and oats and casein and chicken.  Interesting.  Very interesting.  

  

 

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I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share. 

There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of).

It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point. 

Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen. 

A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese. 

I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein. 

However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad).

I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well...

Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something.

As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS.

While I was there, I decided to see if I could eat the dairy. I could. 

Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave. 

So that's my story. Almost too crazy to believe. 

TL;DR: Black and white cows make me sick, brown cows are my friends.

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    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.