The Poison Protein
May 14, 2008 in Food
This story is about how we learned that my husband Doug has an intolerance to casein, which is a protein in milk. Knowing about it and changing his diet has made a tremendous difference.
My husband Doug used to be sick every single day.
First they thought he had an ulcer, then maybe it was acid reflux. Later they did a sonogram to see if there was a tumor, or a growth, or a rupture in his organs. He had abdominal pain, swelling, shortness of breath, and chest pains for over a year. He didn’t know what the problem was, and the worry was almost as difficult as the physical pain.
He was diagnosed as having acid reflux disease, so he took an expensive prescription medicine for several months, but it didn’t seem to help. His doctor encouraged him to keep taking it, saying that it could take time for everything to heal. Doug couldn’t help but feel like they were just treating the symptoms, but didn’t know what was really wrong. This pain affected every aspect of his life. Some days were better than others, and he knew he felt better when he didn’t eat at all.
A Breakthrough
One day in January 2005, Doug got the flu. I thank God for that flu. He passed out at the doctor’s office with a temperature of 103, and he didn’t eat anything but crackers, water, and 7Up for the next five days. When his fever finally broke, he was still weak and shaky, but somehow he felt better than he had in an entire year.
He had no pain at all in his stomach. He didn’t know how he could feel so good after just getting over the flu! Then he poured himself a tall glass of milk. He was back in bed 45 minutes later with sharp chest pain. He couldn’t take a deep breath, and he felt like there was a strong foot pressed against him. That’s how Doug learned that all this time, it was milk that was making him sick.
At this point we didn’t understand it very well. Thinking it could be lactose intolerance, Doug tried drinking lactose-free milk and taking lactase enzyme pills to help his body digest it, but they didn’t work. The lactose wasn’t the problem; he was still getting sick. He had quite a few tests done to see if anything else could be wrong. He had a dozen different blood tests. He had a battery of allergy tests, but they all came up negative.
He stopped drinking milk, eating ice cream, and putting cream in his coffee, and he felt a lot better. Reluctant to give up milk completely, he struggled with it over the next year, but it was still such an improvement.
Identifying the Problem by Using a Food Journal
By keeping track of his diet and noting how foods made him feel, we eventually realized that what the foods had in common was casein.
Doug has a casein intolerance. Casein is a protein in milk, and it is used as a filler in many commercially-prepared foods. So even though Doug had stopped drinking milk, he was still continually exposed to casein through sandwich breads, gravy mixes, pancake mixes, cereals, protein powders, and many other foods that we never would have suspected.
An intolerance is different from an allergy, which explains why it didn’t show up in the allergy tests. Casein can be hard to recognize because it goes by several different names on an ingredients label. Many foods that are advertised as “non-dairy” or “dairy-free” still contain casein.
Casein Intolerance Symptoms
Gradually Doug’s sensitivity to casein became worse and he had to be more careful. He started getting headaches and a low-grade fever if he ate a biscuit or a pancake made with milk. A food intolerance can be a tricky thing — sometimes you can eat the food and have it only mildly affect you, but other times it can send you right into a tailspin.
One time Doug ordered chicken salad at a restaurant, and before he even finished it, he was in so much pain. It made him extremely sick for three weeks, and he experienced:
- fever
- headaches
- stiffness and aches
- clinical diarrhea
- strange and tingly feelings in his fingers
- shortness of breath
- chest and abdominal pain
A new doctor explained to Doug that he should start viewing casein as if it were poison to his body, and not let himself eat any foods with casein. That was the motivation he needed to give up all milk completely.
Avoiding Casein and Milk
Sometimes it’s hard. Milk, cream, or cheese is part of any classic American dish. He misses pizza. He feels like a burden when a dinner host has to consider his individual needs for a meal. He doesn’t get to share the cake or ice cream at parties. He really misses cheese, not to mention cheesecake. But all of those are well worth giving up when he thinks about how he no longer feels sick the way he used to.
A food intolerance can be difficult to diagnose. Honestly I believe that many people are suffering from a food intolerance, but they don’t even realize it and are medicating the symptoms with prescription drugs. Casein is just one of many food ingredients that can cause problems. People can be intolerant to gluten, MSG, and caffeine, just to name a few others.
It’s a couple years later and we’ve adapted to a milk-free diet. Adding probiotics and enzymes as supplements have helped him avoid getting sick from small accidental exposures. We carefully check ingredients on labels now, and Doug hasn’t felt sick in a long time.
The turning point for us was when we stopped thinking of all the foods with milk that he can’t have, and we started to focus on the foods he can have.
For ideas about dairy-free foods, read Flavorful Food Without Milk.
My daughter is allergic to milk protein. I carried a FAN (food allergy network) card to help me read ingredients at the grocery store. It helped with what specific words to look for. I no longer need the card.
My daughter’s problems started when she was two. She is now thirteen. She knows what to stay away from. On Occasion she’ll eat what she’s not supposed to, but she doesn’t get sick anymore.
Blessings with your pursuit. I know how difficult it is to prepare meals without all the yummy cheese, cream of whatever soup, etc. Even crackers are dusted with something that has milk protein!
My toddler has very visible food allergies to wheat, dairy, eggs, nuts, apples, peaches, pears, nectarines and the like. I’d never imagined food could be so deadly. And what’s worse, it’s taking your article to think to myself… perhaps having “food poisoning” over a dozen times in one year, when I keep a very clean kitchen, could very likely be an intolerance to something I’m eating. Thanks for the heads up. Time to start an elimination diet and journal.
Wow, that’s such a drag for him. I love cheese, too.
I found you because you’d commented on the How to Shop at a Farmers’ Market post on my blog, so I’m thinking that’s one of the things you’re doing to help him avoid casein? Shopping at a good fm is a great way to avoid all sorts of industrial food inputs. Many industrial food inputs can have several names, so even after reading a label you might not be able to know for sure if a particular ingredient is in there. But at the fm, even if you’re buying sauces and jams and salsas, the ingredients are straightforward. If there’s milk in a product, you’ll know it.
Lisa, is there an online version of the card you carried? That sounds really helpful.
Jasi, oh goodness that is a long list of foods for your little one. I definitely think food intolerance or allergies can be hereditary. We’re doing an elimination diet right now for my daughter since we suspect a food intolerance with her too.
Valereee, you’re right about that. I didn’t even think about it that way until you pointed it out, but it’s funny how our tastes have changed towards fresh foods now that we have eliminated the dairy and processed foods.
Rachel, I hear you. Once we cut all the overprocessed ’stuff-from-the-aisles’ out of our diet, it now looks slightly disgusting.
My daughter sometimes picks up items and makes me guess how many ingredients, just for a laugh.
Hey! I found your blog through Megan at SortaCrunchy. Thank you for posting this! My daughter (will be 2 in July) has food allergies to wheat, eggs, potatoes, seeds, nuts, bananas, possibly corn, and we’re still trying to determine legumes and dairy.
She was so miserable (and, as a result, so were we) since about the day she was born! We tried an elimination diet at the beginning, but had no idea someone could be allergic to potatoes, so it was a staple as it is supposed to be a mild, unoffensive food. The diet didn’t seem to work so we gave up, until she was 14 months old. We gave it a go again, and realized she did indeed have major food allergies. It was a huge struggle to cut foods out of our diet (especially for my husband). Because we breastfeed, she gets whatever I eat through my milk, so I had to cut out all these foods as well, as we were testing and trying again. I had so many friends ask, eyes rolling, “Why didn’t you just stop breastfeeding so you can eat whatever you want?” I am so glad I didn’t, because I discovered I am also allergic to several of the things she is, but had no idea.
Her major symptoms occur in her respiratory system, intestines, sleep, sometimes skin but not often, but the absolutely most dramatic symptoms occur in her behavior, which is known as brain allergy. It’s absolutely fascinating and is worth looking up. My family is absolutely convinced that so many of the children diagnosed with bi-polar (as ridiculous and unbelievable as that is) ADD, ADHD, and many other “social” and behavioral disorders are actually suffering from allergies to foods in the “typical” American diet – fast foods, boxed meals, chicken nuggets with who-knows-what in it, etc.
As I was researching brain allergy and the symptoms, that’s when the light went on and I realized I also am allergic to several of the things she is allergic to. The biggest clue for me was that I lost 40+ pounds in about 3 months with no effort whatsoever once I cut wheat, eggs and potatoes out of my diet (as well as snack foods and quick-bite things that are packed full of fillers), whereas before I was very active and counting calories, etc. and *gaining* weight.
Sorry to write so much but I would hope that it could be useful for others!
Some symptoms of brain allergy include: addictive behaviors like cravings for & compulsive eating of food you’re allergic to, brain fog, indecisiveness, difficulty concentrating, mood swings (manic and polar), anxiety, irritability, and way more. There is a lot of information in this article:
http://www.wholeapproach.com/newsletter/pop200304.html
And this one is what helped me confirm brain allergy for both me and my daughter
http://www.alternative-doctor.com/allergydotcom/brainallergy.htm
http://www.askdrsears.com also has a lot of great information on food allergies.
As with your husband, I’ve noticed with my daughter that the longer she goes without eating something she’s allergic to, when one of her little friends slips her a snack when I’m not looking, her reactions get bigger and worse.
I’d echo that our tastes have also changed. Thanks again for posting this, I think so many people have food intolerances and allergies that they are totally unaware of.
We’ve recently discovered that two of my sons are probably casein intolerant. I’m eliminating dairy, and implementing the GAPS protocol. I’ve heard it’s very helpful for healing up a lot of these intolerances, since so much depends on having a healthy gut and immune system. http://www.gutandpsychologysydrome.com . Your comments about health and ADHD, bipolar are right on. (Although probably not all allergies, but gut problems, from SAD – “Standard American Diet”.)
Hi Jenn, Thanks so much for taking the time to write something that could be so helpful for others. That is an amazing testimony you and your daughter have! What you said reminds me of Doug’s story of being hyperactive as a child. He was on medication for a year, and then his family changed his diet to remove food coloring and sugar I think. It completely fixed everything.
It can be really tough to determine a food allergy. Especially with kids, since they can’t communicate in words with you. Even older kids often don’t know that it’s not normal to have your stomach hurt all the time, or some other problem. It would have taken me a long time to guess potatoes. You are very blessed to have figured those foods out while your daughter was so young. And with people having all kinds of different symptoms for allergies and intolerances — well, that’s why I think the internet is great, so we can share stories beyond the classic symptom list to help others.
Hi Jenn, a random web search led me here. Just wondering if you could tell me more about your husband’s difficulty breathing when he had casein in his body. I have been getting some strange symptoms over the years.I am 25…. used to get chest pains sometimes get tingly fingers…..my face feels hot every often …but most of all i feel clogged up hard to breath…..like my diaphram is tied in aknot, just cant get a full breath in some days….and sort of breath alot. No asthma, or smokes and blood pressure is fine…..very tense muscles toooo. Thankyou for any advice you can give…. Had too many tests one verything come up negative
lots of typo’s ooops…. i meant short of breath not (sort )
and tests on everything not (one very thing)……….were negative
Hi Melanie,
I showed your comment to my husband Doug, and he nodded his head and said that’s exactly what he used to feel like. His symptoms started when he was about 33.
I would suggest you do a trial to go without casein for two weeks and see if you feel better. Just try it, because it won’t cost anything and there are no harmful side effects. But you have to do it completely, no cheating, and read food ingredients carefully. If it is due to a casein intolerance, then those symptoms indicate your body is having an extreme sensitivity and will react to small doses of dairy and casein.
If you discover that you start feeling better without it, then email me and I’ll try to send you more resources for what can help.
Thank you so much for telling Dougs story. I am 24 and have been sick for a year & a half! I am newly married and can’t stand feeling sick all the time! I had, internal & external ultrasounds, stomach emptying tests, cat scans, gallbladder testing, blood tests, stomach scope (found ulcers), colonoscopy, echo, and many natural tests. The only thing that I found out was that i had a casein intolerence. 4 weeks before my wedding I tried a casein free diet but the only difference I noticed was that I had a little more energy. Now in addition to my nausea and extreme exhaustion, I get a burning headache after I eat and I am very irribable. I am desperate for an answer! I am on my 3rd day of a casein free diet again and reading Dougs story has helped to restore hope of feeling normal again. Thanks!
Hi – I developed severe itching problems in 2003 and two immunologists, two allergists and four dermatologists couldn’t solve it. I stumbled across a website; Enterolab.com in Dallas who specialize in food intolerances using a stool sample and found gluten, chicken egg and casein problems. Changed my life. Stool igA testing is much more sensitive than blood samples.
Good luck.
John, can you tell me more about Enterolab? Since being diagnosed with celiac in late 2007, I have continued to experience chronic diarrhea even though I am completely gluten free all this time. After reading your blurb, I thought that there might be something to these tests that might help me as well.
Thank you.
Dappy, I’m not sure if you are still active on this site but wanted to add an improtant comment regarding your chronic diarrhea. Please see a gastroenterologist. You may have one of the inflammable bowel diseases – ulcerative colitis or Crohn’s disease. Chronic diarrhea is a classic symptom of both and can get terribly worse without medication. Many people with UC and CD started with Celiac and visa versa.
I have two sons and a husband that I am sure have this. The 2 yr old is watched closely with what he eats. Others not so into this yet. My youngest son also is “allergic” to MSG. You might check that out also, he would bang his head on the floor at early morning wakings wanting these foods. When removed the headaches stopped, mine have to now that we don’t eat msg or milk.
A google search about casein intolerance led me here. My doctor thinks I may have a casein or whey intolerance. Hard cheese and milk seem to be my worst enimies. Hard cheese however, is lactose free(about 99.9%) So that pretty much ruled lactose intolerance out. I’ve had stabbing pains in my right lower abdomen, been to the ER i don’t know how many times and told it was an ovarian cyst. Then my husband demanded an abdominal x-ray be done and they found a very large intestional blockage, which led us to believe its a food intolerance. i agree the benefits of feeling and functioning properly keeps me away from dairy and out weighs my love of cheese. I’m realizing just how many foods are processed with these two additives and its slightly depressing. This is a great post! everyone’s comments are very helpful! what a gem to find on the internet.
Same experience here! It’s casein alright. Consumption of hard cheese and milk use to put me in bed for days at a time, until finally – a 2-year-long finally – I realized casein was messing with my stomach and my head. Doctors told me it was anxiety and to avoid caffeine and sugar! I did so but felt even worse! Have been better for over a year now, tolerate coffee quite easily, while studiously avoid casein in all forms.
Thanks. After i was weaned over 55 years ago I was one sick kid, apparently, and would slough off my gut lining. The country doctor thought I was allergic to wheat (not a celiac), milk, and soy. Gluten is another potentially poisonous protein ans are some of the soy proteins.
I “outgrew” it. (Meaning I no longer was deathly sick.) When various maladies have cropped up since my 30’s doctors pooh-pooed the food intolerance hypothesis. Of course, gluten and casein free were nearly impossible in the 1950’s and only recently have become just moderately difficult. Adding soy and corn will be fun.
I went gluten free in October: big change in almost every aspect and I am off off two heart medications and half dose on the last. But I am getting random bad responses that make me suspect that the soy & casien, and maybe corn are issues in and of themselves, not beacuse of the gluten messsed up the gut.
I have some biochemistry and considerable life sciences background, and find myself more an expert than my doctor. I don’t want to waste too much time on a food journal, but want it to be effective. How detailed do you need to get to make it worthwhile but not excessive?
I think this is the best description/representation of a food intolerance I have read yet, so thank you for sharing this!
I was recently diagnosed with a gluten intolerance and suspect that I have a casein intolerance, as well, and I am finding that it is very difficult for people to understand what an intolerance is. An allergy that causes an immediate, predictable response of swelling, rashes, etc. makes sense, but an intolerance that causes major symptoms right away sometimes, mild symptoms hours later other times, or can cause hidden terrible damage to one’s inner organs over many years – that is more difficult to grasp.
But stories like your husbands help people to understand. And the more people hear stories like this, the more quickly others will think to test for food intolerances as a cause of their symptoms. And this is a good thing. =)
One extra note- With my allergy, it sometimes waited 12-30 hours before aweful symptoms started. After the internal fighting fails, the end result is the immune response you see way later. But right, some can present themselves right away- others not till later (after it builds up eough to explode). It also depends on the severiy of the allegy. ie, my numbers are “very high”:
< 0.35 = absent/undetectable
0.35-0.70 = low level
0.71-3.50 = moderate level
3.50-17.50 = high level
17.6-50.00 = very high
above 50.00 =very high
mine was 17.0, very high could lead to anaphylaxis (chest pain and or breathing ceases) so, how your symptoms presentand when depend on the severity and your own body.
I was born with a “milk allergy” and it was not discovered until I was 10 years old. I would go into seizures and pass out. upon waking up, I would throw up aweful things (things that should be evactauted via colon- for lack of a better term). Back then, they still had immunotherapy via injection (some allegist claim that never exsisted…until I presented medical records of having the shots for three years). I did great afterward. I could eat dairy in moderation with no problem. The problems would start if I over indulged.
Now after delivering my second child, my allergy rapidly became worse again. Last week I was tested for milk properties and the casein showed up very high for allergy. An actual allergy- which means your body is havin an immune system response to the “invador” and tries to flush it out or fight it. Horrible stomach pains, almost doubled over…vomiting, headache, red eyes, circles under the eyes, etc.
An intolerance is something I’ve only heard coupled with “lactose” because an intolerance is the body lacking the enzyme that properly breaks down the milk sugar (lactose).
Is anyone sure they don’t have an “allergy” and not an intolerance? I’m beside myself that they do not give injections for this anymore. They worked wonders for me when I was young.
My main point is to share some other aspects like these symptoms, tests done (blood panel for allergy), how pregnancy can trigger it to escalate, and a little history of how allergists used to treat it.
I would love if someone could share a website or good list of foods that do not contain casein. Alot list what to stay away from, but are nill on the things you can have. I’ve heard some vegetables can contain this protien as well. Definately a lifestyle change! Hang in there to anyone who has this, I know it’s not fun! I hope your husband finds it easier as time goes by. I do remember learning from my childhood allergist that “if you have the allergy- that is the one food your body will crave” unless you are totally casein free for two weeks (body detoxifies and craving goes away).
He can still have vegan cheese so long as it hasn’t been produced in a factory where milk was used on the machinery. You have to look out for that, in every food he eats though. I’ve had casein intolerance for 15 years now. My diet is very limited, but thankfully I currently live in an area where, though I’m not part of it myself, there’s an Adventist church on every other corner, and they have their own market and so on. They’re really big on everything being milk & egg free, though sadly, they’re not always good at knowing what’s in their foods (they’re big on using butter instead of shortening, for instance). It’s still made it a TON easier for me to find foods I can eat by living around here. It might be worth it for you guys to contact a local Seventh-day Adventist church and ask to talk with someone who has the same problem Doug has. Warning: some of their “food replacement” ideas will be really dorky & insult your taste buds. But here and there you’ll learn of a real gem that will make the whole process of fully transitioning to a milk-free existence tons easier.
I actually found this link because I was hoping to learn more about caseinase, which I’ve heard, if it existed anyway, would help, the way lactase (lactaid) helps with lactose intolerance. But anywho, just thought I’d throw that out there. I’m planning on moving soon, and it’s really a scary thought because it won’t be in an Adventist getto, so it’ll be harder to exist. I’ll have to subsist on salads and stir-fry and the like. That’s not tons of fun when it’s every day, every meal.
Hi, About three years ago, a friend of mine had an epileptic seizure. I got on the internet with the search terns…epilepsy, cure…, and came up with the usual jumble of garbage except for one, a veterinary named John Symes from Georgia. He relates that about twenty years ago dogs began dying off and being curious related the deaths to the fact that the Russians had flooded the market with wheat and the dogfood manufacturers, seeing the monetary advantage, substituted the wheat for the corn they had been using in the dogfood. All dogs were not equally effected; like people, some were damaged more than others, and some not at all. The Irish Setter breed was almost made extinct. He found that a similar problem existed with the casein in milk.
He believes that hat these substances do is coat the intestinal villi(they comprise the lining of the intestine)so that they are disabled and cannot absorb nutrients. Without these nutrients, the body is susceptible to a litany of problems generally listed as idiopathic(cause unknown). His site is dogtorj.net. By the way, there have been no more seizures…Clint
I would like to add to my previous post that I have found information that all casein may not be toxic; only that from Holstein cows, which provide most of the milk at the market.
Someone mentioned to me a Rainbow Light product that is supposed to shield one from the ill effects of casein. Does anybody here know about it or something similar?
For the last 15 years, I have had a lot of health problems. Fibromyalgia, chronic fatigue, sinus problems, eczema, headaches, IBS, depression, anxiety, along with a slew of other issues. I was on a handful of daily prescription medications and even considered trying to get disability. My oldest son had been a very colicky baby with sleep problems and was experiencing severe learning disabilities in elementary school. My youngest son had a lot of stomach problems and had developed severe migraines when we increased his milk to strengthen his bones since he was playing football. When the migraines continued to the point where my son couldn’t do anything without getting one, we started seeing a Neurologist. It was then that a possible food allergy could be the problem. We tried an elmination diet with him and immediately linked his migraines with dairy. Both kids needed to be on soy formula as babies so it wasn’t too surprising that they could have a milk intolerance. However, what I didn’t count on was that as soon as we gave up dairy as a family, we all changed. My son who had severe learning disabilities and sleep problems is now reading and sleeping at night. He has normal social interactions now (he had been very shy, anxious, and “dazed” most of the time). My younger son used to have allergic “shiners” and now he has bright eyes, no migraines, and no daily stomach pain. ALL my health problems have disappeared and I feel better than I have ever felt in my life. Since discovering the casein intolerance, I have spread the news on to other fibromyalia sufferers and every person who has given up dairy has recovered from the auto-immune illness. The hard part now is staying off the dairy. We don’t purposely ingest it but seem to get a lot of “accidental” dairy. Restaurants hide it in their food and many manufacturers leave it off their labels. I’ve managed to substitute Silk for milk in all my cooking. But I do cook all the time now in order to replicate the foods that we enjoyed eating out. My son’s birthday is next week and he had wanted a ornately decorated, store-bought cake but when he realized that he’d get sick he decided to design his own “healthy” cake. He’s decided on a dairy-free yellow cake, dairy-free chocolate icing with soy-cream in the middle. And he’s more than happy about it because he was able to create the cake himself. The ironic part of it all is that I come from a long line of dairy farmers on both my parents sides. I had hoped to eventually be able to ingest cheese again but the longer I stay off the dairy, the worse the intolerance becomes. I suppose its a small price to pay for good health and a healthy kids now.
I had the fibromyalgia, chronic fatigue, IBS, dermatitis, depression, anxiety and a bunch of other problems as well. I was finally diagnosed with celiac (my dad and grandmother also have it) but also have eliminated lactose. I had wondered about the casein and came across this site. I think I’m also allergic to some fruits and vegetables, MSG and am going to have allergy tests done because I still feel sick.
The pain from the FMS is gone however and I lost 75lbs in 1 1/2 yrs after givng up gluten. The weight would not come off before.
I had still been eating things with casein in them (whey protein isolate) and started experiencing the tightness in my chest and heartburn again and had been at a loss.
Hey! Not sure if your still checking this at all but thought I’d give it a shot. I’m 24 and have known of my casein allergy for 8 years. I’m from Wisconsin were I grew up as cheese being my diet! I was soooo heartbroken when I found out I could no longer eat it. If you havn’t already discovered Tofutti, check it out. They make non dairy (no casein!) sour cream, cream cheese, cheese slices and delicious ice cream and ice cream sandwiches! It was such a blessing when I discovered these! I really missed pizza too, have him try pizza without chese, just double up on pepporoni or something, it’s not quite the same but it’s better than nothing, and pretty good too! Good luck!
Thanks for the recommendations, Katie. We think that pizza without cheese is good as long as there are lots of other toppings.
I have a casein intolerance also. I can’t sleep if I eat any casein. It is a very strong effect, and at times I haven’t been able to sleep for 3 days running after eating just a little dairy. So of course I don’t eat it anymore.
I see you are aware of celiac disease and how it affects the ability to digest day (lactose intolerance). There is also something called casein mediated enteropathy that can cause intestinal damage.
Anyhow, I think anyone with lactose intolerance should get themselves checked for celiac disease. It is more common than people seem to realize.
Yes celiac occurs in 1 in 133 people in the US and if you have a blood relative the chances are even more that you have it. My grandmother and her sister had it and so do my dad and just finding out 2 of my 3 sisters also have it. 97% of people that have it don’t know they have it.
I have been looking into casein allergy/intolerance since I started rotating my daughters food and noticed she is having eczema flare ups after eating probiotic yogurt. My daughter is 11 months old and has had eczema for 3 months. From 5 weeks old she slept through the night for 12 hours but this stopped as soon as I started weaning her. Three doctors and a dermatologist have refused to refer me to a dietician or an allergist so I am trying to determine myself what is affecting her. I always ruled out a milk allergy as she is fed on milk based formula and didn’t have any problems until weaning but I now believe the formula she is on contains whey and not casein. I found a very interesting website (http://www.plantpoisonsandrottenstuff.info/content/elimination-diet/gluten-casein.aspx) which I believe explains the reasons she is having bad flare ups after eating yogurt and not cheese. I think this may be of interest to all the people on here with casein intolerance as it also implies there is a link with gluten intolerance. I noticed the site mentions it is more common in red haired/fair skinned people and both myself and my little girl are very fair with red hair. Unfortunately I think she may be intolerent/allergic to other things as I initially only weaned her on veg, fruit and rice. I have been diagnosed with IBS since she was born and have recently been itching a lot and having tingling/pins and needles. I have had shortness of breath and abdominal pain for years so I really think I should try leaving out casein and gluten too! I’m not sure what I should be giving my little girl now as I’m worried I’m not feeding her enough.
Oh I have also been diagnosed with reflux oesophagitis and hiatus hernia since I was 18 (now 32) which did not get better when I stopped drinking caffeine and alcohol, stopped smoking, cut down on fatty foods and took the medication they gave me.
I have peripheral neropathy..the tingling and dermatits herptaformaris (skin reaction to gluten) if I eat gluten i start itching right away.
Since going gluten free the tingling is going away and so is the dermatitis. You can get topical dapsone for the dermatitis. If it is celiac it causes damage to the small intestine and you don’t absorb nutrients and will be malnourished so continuing to eat gluten if celiac/intolorant is like a double edged sword.
Also if I eat gluten i will be up for 2 to 3 nights and can’t sleep.
I saw that article, too. Plan to try the gaps protocol (www.gaps.com) to heal up my son’s tummy and then reintroduce raw dairy from a local farm at a later date. (It’s one of the types recommended as easier to tolerate – from Jersey cows.) We’ve dealt with eczema, constipation and clogged ears for 2 years now.
I know this is an old post, but I’ve just found it. I wonder if you have tried non-cow dairy? My husband has severe problems with any cow-dairy because of the casein, but doesn’t have the same reactions to goat’s/sheep/buffalo dairy products because he has no problem at all with lactose. Just a thought.
Did you get an answer? The link on Kerry’s comment above talks about types of casein and which are supposed to be easier to tolerate.
Fascinating comments!
My casein intolerance was diagnosed 25 year ago at age 50, after what seems to have been a mild case of chronic fatigue syndrome or possibly undiagnosed glandular fever. My wonderful GP (whom I found after several doctors were no help at all) took me off wheat and all dairy products. My intolerance to wheat was temporary (about 2 years as predicted), the casein problem is here to stay. It is not extreme, I can tolerate traces in bread etc.
A couple of years ago my craving for cheese got the better of me and I convinced myself that I had outgrown the problem, encouraged by the fact that for about a month I had no adverse reaction. I did enjoy the cheese! By the time the reaction hit me with severe sinus and chest problems and nightly hyperventilation, I did not at once realize what the problem was and thought of a virus infection. Once I woke up, it took me a several weeks to come right. Never again!
I have recently become sensitive to soy protein as well. However, I enjoy cooking and am quite used to a restricted diet of good, basic, fresh, mostly organic food. My friends, too, are happy to share it when I entertain. Rice milk and rice protein are great.
Eating out is restricted, but I can enjoy dairy free Indian food.
HAVE HAD ACID REFLUX AND DIGESTIVE PROBLEMS FOR ABOUT SEVEN YEARS.DOCTORS WANT TO PERSCRIBE PRILOSEC.FOR SEVERAL YEARS NOW I HAVE HAD JOINT PAIN AND TINGLING AND NUMBNESS IN HANDS . COULD THIS BE CAUSED FROM CASEIN INTOLERANCE.
I am so glad I found your blog. I know this is an old post but your husband is the first person other that me that I’ve heard of having a casein intolerance ever. I have a permanent runny nose, achey joints/bones and occasional stomach problems. I’ve tried to give up a few times (since I worked out I have it) but it all tastes soooo good. I can see some of the foods you prepare and learn. Have you heard of others that have this? I’m keen to learn more.
Larissa if you are still on here I would love to hear from you and how you are finding what foods are the best to eat and what to stay away from. Please email me on jacquiburge@hotmail.com.
Hi! My doctor told me I had 20 different intolerances for different foods about 4 years ago – among them both milk and casein. But I can eat cheddar cheese without my body reacting. My doctor said that the protein (casein) in cheddar cheese is broken down due to the production process, so that people with casein intolerance can eat it. Have your husband tried cheddar cheese?
He has a problem with any kind of cheese, and his sensitivity is severe enough that we don’t want to test it further.
Wow this has been an interesting forum to read. I have just been told by my doctor today that I most likely have a casein intolerance! I also have IBS, what I thought might be hay fever, migraines and I get anxious and restless and slight depression. I stayed off dairy for 2 1/2 weeks and tried dairy again and was quite sick! I have noticed I feel soooooo much better off dairy but I LOVE yoghurt and cheese. I am currently working on a remote island so it is very hard to get special foods. Soon I will be returning to civilisation. My doctor told me about milk called A2 which I should be able to drink but I can’t get that here. Anyway thank you heaps for all the ideas. My mum suffers from fibromyalgia and migraines so I have advised her of this site.
Keep the info and stories coming please!