For The Casein Sensitive.....

[danikali]

Okay everyone, I'm on the SCD diet so I was reading about the yogart that we are supposed to make. It says for those with casein sensitivity, NOT allergy, we can probably have goats milk. It also says that it is like any other sensitivity, and it may one day go away. Here's the website:

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She explains how although goats milk does have casein, it is a different kind of casein and it is digested in a different way altogether.

What do you guys think? Would you try it?

[dlp252]

I'm undecided on this. I was actually eating goat yogurt (store bought) before I was diagnosed by Enterolab with casein intolerance, but I was also eating regular greek yogurt too (alternating the two), so I don't know if both of those contributed to the antibodies or just the greek stuff did. I may try it once, but I'm not sure if I'm going to continue unless I am sure the damage isn't being done regardless of any outward symptoms.

[danikali]

I'm undecided on this. I was actually eating goat yogurt (store bought) before I was diagnosed by Enterolab with casein intolerance, but I was also eating regular greek yogurt too (alternating the two), so I don't know if both of those contributed to the antibodies or just the greek stuff did. I may try it once, but I'm not sure if I'm going to continue unless I am sure the damage isn't being done regardless of any outward symptoms.

I agree. I'm kind of afraid to take the chance because from what I understand, casein does a lot more to people than just give them stomach problems. Maybe after I've been on the diet for a long time..

[Matilda]

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[danikali]

I tried goat milk yoghurt and keffir after a few months, and now also eat goat cheese. I've tried tiny bits of cow's cheese with no problems, but other dairy products are still giving me D whenever I try them. I wouldn't just drink the goats milk straight.

By the way Dani, I haven't been reading for a while, and missed your diagnosis by Dr Green. Did he just go on symptoms etc? Did he put any credance in your Enterolab results?

Thanks for the advice.

So, Dr, Green actually never heard of enterolab when I went to see him! I don't remember for sure if he said 'I've never heard of that.' or if he just acted like that was a foreign lab to him, but he def. didn't say much about it.

I was reading excerpts from his book the other day in the book store, and I don't know if I like the way he thinks, to be honest. He said, the only way to know FOR SURE, that someone has celiac disease is by a positive biopsy. He also said that people should NEVER go on the diet UNLESS they have the positive biopsy. So in that respect, I think, for being the 'Celiac King' or at least supposed to be, he sounded just like any other doctor regarding the gluten free diet.

My biopsy, was first inconclusive by my first GI and when viewed by Dr. Green, positive, but I wonder what he would have said if the biopsy came back negative. Would he have told me to go back on the gluten? Or that it wasn't as big a deal as full blown Celiac? Who knows.

[Nancym]

I react to goat's milk just like regular milk. I might try it again after 6 months on SCD but for now, it just makes me feel bad.

[lonewolf]

I would wait for at least 6 months, or better yet, a year. I waited for several years, and even now, try to stick with small amounts of raw goat cheese. Pasteurizing changes the protein structure (the casein) of the milk and makes it harder to digest, so raw products are better. But make sure you get them from a reputable source!

[Matilda]

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[tarnalberry]

There's no way for you to know other than trying. I think goat's milk bothered me as well, but I also never found one that I could tolerate the taste. ;-)

[Felidae]

I just bought some goats milk yogurt as well as some cheese. I'll let you know how it goes.

[danikali]

Matilda, I know what you mean. When I told him about enterolab and how my tests came back positive, he made me feel like it meant nothing at all and right after he made his comment on it, I felt like I was sent back to square one, and pretty hopeless. This was before he looked at my biopsies of course, because he had to get that info. from my old doc. But I asked him if people could be gluten intolerant and not have celiac disease, and he said, well, I'm sure they can, but then they take gluten out, feel better, start getting sick again, take corn out, feel better, start getting sick again...etc. etc. So I pretty much felt hopeless after talking to him. Then when he called me and told me that I had the DQ8 gene, and the biopsy was positive, I was glad I went to him because with his judgement, I knew for sure it was Celiac. But it makes me wonder because I do have celiac disease, but I have still gone through that process that explained and pretty much implied, doesn't happen to Celiac patients. (take gluten out, feel better, start getting sick again, take corn out, feel better, start getting sick again...etc. etc. ) Also, when I looked in his new book, I didn't see anything about other food intolerances. So it makes me really wonder about him. (He did seem kind of like a pompous man when I met him) I don't mean to talk so badly about him, but I guess I had really really really high expectations. To me, he was just another doctor. No miracle worker.

And Tiffany, does goats milk taste bad? It's not like regular milk?

I just bought some goats milk yogurt as well as some cheese. I'll let you know how it goes.

Are you casein sensitive?

[dlp252]

but I also never found one that I could tolerate the taste. ;-)

Yep, I bought some goat milk and took a big sip and nearly spit it out, lol. I did like the goat milk yogurt for some reason though--although to be honest I did add DaVinci sugar free syrup to it and nuts and/or sunflower seeds, so maybe that's why.

[aikiducky]

I can't tolerate cow's milk, but I'm fine with a little bit of goat's cheese. I try to keep it in moderation though, and, I wasn't very sick to start with, I got better pretty quickly. So my case might not be something to go on.

Pauliina

[chrissy]

store bought goat milk is probably not going to taste very good. but, if you milk your own goat and feed it grain, (no weed munching) you might not even be able to tell the difference between it and cows milk. i have an old cream separator out in my garage waiting for the day that i get a goat again.

christine

[Rachel--24]

To me, he was just another doctor. No miracle worker.

Yeah...he does sound like any other other doctor. I'm not really surprised though. I dont care how "famous" he is I'd take my "unknown" doctor over Dr. Green any day...especially after reading your posts.

I attended a lecture given by my doctor the other night. It was titled "Celiac Disease..What your doctor didn't tell you". It was really informative but I didnt learn awhole lot I didnt know already. He's my doctor so it was all stuff we'd already talked about. Anyways, he brought up Dr. Fine which caught my attention (he's never discussed Enterolab with me). He does have a copy of my Enterolab results (and all other labwork over last 3 years) and once when I brought up the fact that for 3 years none of the tests run on me ever came up positive for anything he said "Thats not true...these results are positive" and he pulled out my Enterolab results. I assume he believes they are valid.

During the lecture he didnt discuss Enterolab but brought up studies and research done by Dr. Fine. He was talking about the prevelance of Celiac and non-celiac gluten sensitivity. He said 1 out of 111 has Celiac but 95% will never be diagnosed. For every one person diagnosed there are 40-something (cant remember exact #) that dont get diagnosed. These are statistics for those with Celiac. He said that the number of people gluten sensitive is much higher. He said that Dr. Fine finds that 1 out of every 2 people who are symptomatic have gluten intolerance.

During the lecture he also talked about the biopsy and said that its still considered the gold standard but this will change. I know from my own discussions with him that he feels the biopsy is not a reliable diagnostic tool.

I think my doctor is the opposite of Dr. Green because he will test just about anyone who is having health problems for Celiac...and regardless of results he'll recommend the diet to see if it helps. He has books for recommended reading....he does not have Dr. Green's book. His favorite books are Dangerous Grains and Going Against the Grain. Its so amazing to me how 2 doctors can study the same disease and yet hold very different opinions.

[Matilda]

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[CMCM]

Hi Rachel.

I hope you're doing well.

I'm glad you like your doctor. I liked Dani's description of Dr Green as a bit pompous.

I was just reading Dr Fines BMJ letter about stool testing on the home page. Have we talked about that here? As you might guess I've glutened myself somehow I think, and am suddenly taking an interest again.

It was lovely not to be thinking about this stuff for a while, but I've been getting just too confident and adventurous I think. Believe me there's light at the end of the tunnel.

I have to say the SCD was a big mistake for me, I never managed to get off the introductory stage without feeling I was cheating, I lost loads of weight and got really depressed. It did teach me to think more carefully about processed food, but I felt so much better when I got back to eating some starchy stuff. So maybe it did work but it certainly didn't feel like it at the time.

Anyway, good luck with it, but be careful about your weight, and if you start getting depressed eat some potatoes or something!

Best wishes,

Tilly

My feeling about Dr. Green's book was that it wasn't particularly original, and it really didn't contain anything new and enlightening. On my list of "celiac books to read" it would probably rate at the bottom of everything I've read thus far. It had simple explanations and useful facts in it, and was clearly organized, but just not all that impressive. I definitely got the impression that he was of the "old school" attitudes. Dr. Fine is the revolutionary doctor/researcher in the whole celiac diagnosis picture. And it doesn't surprise me in the least that Dr. Green doesn't appear to know about Enterolab....actually, it shows me the limit of Dr. Green's knowledge, and demonstrates that he doesn't think at all outside the box. Conservative thinking isn't how discoveries are made. Some only report, others discover.

[danikali]

Conservative thinking isn't how discoveries are made. Some only report, others discover.

I completely agree with you. Look at the SCD diet for example. Elaine's daughter was going to die, or have to walk around with a bag for her waste the rest of her life because the 'conservative' doctors said that there were no other options. Well, there was, and it's also saved a lot of other people's lives.

I'm on the intro. diet for SCD right now, and I feel like it's working, except I have a bad headache now. Probably from withdrawl of all of the starches and extra sugars! That's fine though. I just have a feeling that this is my answer. Since taking the grains out alone, which I did a couple days before I started this diet, my knees don't hurt at all anymore! When I took out gluten, it helped a lot because they used to ache when I walked and even just layed in bed. But they were still hurting when I would sit with my legs crossed at my desk. Not anymore!

Oh and Rachel, I'm so happy for you that you got this doctor. I'm not going to Dr. Green anymore. My insurance luckily pays for it, but they have to send me the bill first and I have to submit it. I went to him once, got the gene test and I've already gotten 5 different bills in the mail! No exaggeration! Oh, and I like how you made the point that two different doctors are studying the same exact thing, yet come up with two completely different viewpoints. And it's funny because the people (us) that are actually living their studies, don't agree with Dr. Green, the one who's making bank living the high life in NYC.

[Felidae]

Are you casein sensitive?

Yes, big time. I can't eat any dairy.

[CMCM]

I completely agree with you. Look at the SCD diet for example. Elaine's daughter was going to die, or have to walk around with a bag for her waste the rest of her life because the 'conservative' doctors said that there were no other options. Well, there was, and it's also saved a lot of other people's lives.

I'm on the intro. diet for SCD right now, and I feel like it's working, except I have a bad headache now. Probably from withdrawl of all of the starches and extra sugars! That's fine though. I just have a feeling that this is my answer. Since taking the grains out alone, which I did a couple days before I started this diet, my knees don't hurt at all anymore! When I took out gluten, it helped a lot because they used to ache when I walked and even just layed in bed. But they were still hurting when I would sit with my legs crossed at my desk. Not anymore!

Oh and Rachel, I'm so happy for you that you got this doctor. I'm not going to Dr. Green anymore. My insurance luckily pays for it, but they have to send me the bill first and I have to submit it. I went to him once, got the gene test and I've already gotten 5 different bills in the mail! No exaggeration! Oh, and I like how you made the point that two different doctors are studying the same exact thing, yet come up with two completely different viewpoints. And it's funny because the people (us) that are actually living their studies, don't agree with Dr. Green, the one who's making bank living the high life in NYC.

Oh do tell....add up all your Dr. Green bills, also the testing bills, and tell us how much you had to spend to find out what you found out. Even if insurance will pay for some/all of it, I'd love to know the $$.

As for headaches, I was really plagued with them starting in my early 30's. When Imitrex first came out it was such a miracle, although it didn't 100% eliminate the headache and the pill itself made me feel kind of icky. But let me tell you this....after probably 15 years of migraines, here's what stopped them for me: I took most (not all) sugar out of my diet it what I did have was very very occasional. I also instinctively started limiting grains and dairy at this point, even more than I had previously. I was never one to eat a lot of meat, or to like fatty or fried things (didn't agree with me), but what meat I had tended to be fish or chicken, always lean, skin off, usually baked or grilled. Lots of veggies and fruit. The common thread of what I really didn't eat much of compared to before was: grain, dairy, sugar. It didn't take long, and then I realized I wasn't getting migraines any more. I used to be frantic to make sure I always had Imitrex, but now I haven't had a prescription for several years. One more thing....I also made exercise a regular part of my life. This is a HUGE help in many things. You don't have to kill yourself, but regularly is the key. Something almost every day if possible, even if it's just a walk.

Also, on this diet I absolutely sailed thru menopause....no hot flashes, no weird anything. I felt great. I just believe so much is diet related.....most people don't realize how central to their well being their diet is. And for each of us, dietary needs would obviously be different. However, I can confidently say that I believe grains and sugar aren't good for anyone. Probably not dairy, either.

[Felidae]

I tried goats milk cheese yesterday and I was horribly sick all day today. So, I guess no dairy from any animal for me.