Celiacs and a correlation?

[Brennabug]

Hej everyone.. i have removed gluten from my diet just to "see" and am enjoying feeling good and massive weightloss. Havent been to the dr for a diagnosis.. but read this and tell me what you think>? could that be more than a few of us? me? i had the skin problems.. bone pain, muscles cramps, headaches, tiredness. Those things are all gone now. unless i go for the pasta.. Low carb comments in this piece.
anyone esle see themselves here?


http://www.celiac.com/st_prod.html?p_prodid=1346

bren

[Nancy LC]

Yeah, I discovered this was a problem for me over a year ago.

I do NOT recommend seeing your doctor about it after you've been GF. The blood test results and biopsy return a lot of negatives for people who find symptom relief after going GF. It returns a lot of false negatives for people not GF too (the blood tests). The medical science on detecting this is pretty poor still, at least in this country.

However, I think enterolab.com does a much, much better job at identifying people who will improve. Be sure to read the FAQ and the essay. This guy is a GI researcher and he's publishing this year. I've heard him speak. I think he's brilliant.

I also had a big problem with casein too, the enterolab test checked that as well.

Check out The Gluten File in my siggy. Tons of stuff there.
Also there are some very good gluten forums around if you have questions and what not.

Oops, siggy didn't show up. Here's The Gluten File (http://jccglutenfree.googlepages.com/home).

[Analog6]

Me too. I had abdominal bloating or pain, diarrhea, constipation, gaseousness, or nausea without vomiting, acid reflux in the esophagus, fatigue, joint pains, mouth ulcers, bone pain, and for me migraine.
After 50 odd years of weekly at least migraines, since going low carb and coincidentally giving up all gluten containing products, I have not had a migraine in 13 months. That's good enopugh for me and I'llnever go back to eating them.

In all that time not one doctor suggested gluten intolerance as a possible cause, yet it is quite well documented on some migraine and medical sites (as I've found out now I've cured myself!).

[waywardsis]

I was just recently diagnosed as gluten and casein intolerant. If it wasn't for this place, I never would have even considered it a possibility. All I thought I had as symptoms were bloating and occasional constipation/diarrhea - turns out a lot more symptoms were linked (skin problems, allergies etc), I'd just assumed they were normal since I'd always had them. I smoked heavily most of my life as well, and that actually masks gastro symptoms; I only noticed them after I'd quit smoking this past January.

I'd always thought I was a compulsive eater as well - I had no idea that the intense food cravings (crackers, pasta, bread, cheese) were resulting from intolerance. I can't tell you the emotional pain and self-loathing I went through, thinking I was just a big pig who couldn't stop eating, a glutton who never felt full. Started LCing, and all that vanished - I had no idea it was because I'd given up wheat.

I too wonder how many of us here have intolerances that have been relieved by removing these foods, and how many people who are "stalled" are so bc they are still eating foods they are intolerant to (like dairy or soy) and don't know it.

Analog - congrats! I'm hoping my Aunt will do the same. Gluten sensitivity is genetic, in my case, and as a lifelong daily migraine sufferer I just know she'd find relief if she cut some foods out of her diet. It's the only thing she hasn't tried in her 50+ years with this - and of course, it's never been suggested to her.

[Nancy LC]

a glutton who never felt full.
Instead you were a gluten who never felt full!

I had a lot of migraines when I was younger but they fell off. Thanks god! My sister however gets them all the time. I think she'd rather be dead than give up wheat though.

[Roe809]

I had to reply to this...in fact, your article inspired me to finally sign up with this forum! I get killer heartburn when I eat anything starchy...especially bagels, but also bread (without meat), donuts, pasta, etc. I don't eat near enough to justify my weight (I've run the numbers through FitDay), but I've been fighting the same 30 pounds for most of my life. Low carb works, but I can never stick to it. Could the problem be gluten? Does anyone else get heartburn from bagels? I've mentioned this to more than one doctor and never gotten anything but a blank look. Thanks.

[Brennabug]

Roe

if i can save just one person the heartache (and heartburn) of this simple easy to fix problem... my life is doing really great

YES heartburn was killing me! i would get it ALL day everyday.. sometimes even to the point that i had to do childbirth breathing just to get through a moment. I really didnt even stop to think about it though becuase so many other things have gone on. I noticed when i went low carb that it was greatly relieved. Now that i have gone gluten free... wow.. i cant remember the last time i actually had it. So thank you too for that reminder. Welcome to these wonderful forums!

As for sticking to it. I am doing a fasting cycle so sticking to anything is pretty easy right now because i have to get REALLY hungry before i eat. But if your just goin gto go gluten free.. or LC and gluten free. Be prepared the first 2-4 ARE hard. because you DO crave this stuff! you have to find it within you to stick to it.


Bren

[Roe809]

Bren..Thanks. I am definitely going to try gluten-free, although I know it is not easily available. However, it might be better for me to try that first than to go all the way low carb...it'll still give me a few more food choices. I am so glad I saw your post! I've never had anyone know about the heartburn before. Wish me luck. :)

[Nancy LC]

Gluten is a long protein that, when partially digest, resembles an opiate peptide. So the theory is that it gets into your blood stream from the "leaky gut" that wheat causes (search on zonulin) and gives you a little high. So when you're getting off wheat, casein too, it is a bit like kicking a heroine addiction. Pretty tough to do. But if you continue to eat it a little bit, it's like giving more drugs to the drug addict. You really have to think of this stuff as poison. Because it really is!

I was very fortunate to know a poster from here who thought her symptoms were thyroid related, but then she got tested for gluten sensitivity and found out that was the issue. She told me about that and a light went on in my head. I immediately got all the gluten out of my diet and my chronic IBS cleared up most of the way. After 4-5 months I decided to have enterolab test me, found out casein was also a problem, and gave that up (mostly, I still eat butter sometimes and have the occassional dairy product cheat).

A lot of my symptoms that I thought were hypothyroid related went away.

[Roe809]

I forgot to mention, I've also been hypothyroid and on medication for it for 13 1/2 years, and the medicine never does a thing for me. I've experimented with not taking it, and I don't feel a bit different. I've still overweight, tired, cold....This may be beginning to make sense.

[Brennabug]

Just remember. read read READ labels!!! this has been the most eye opening thing for me.. there is gluten in almost EVERYTHING you can buy off a shelf.. unless its fresh. Also.. be wise and skip going out to eat for about 3-4 weeks.. because they even have added gluten in things you would never think they would! it is like coming off herion.. good example LOL.. even a little bit.. a SMIDGE.. and oww heck... *sighs* i know when i have had some unknowingly cause my skin immediately breaks out. As for the caesins... yeah well.. i just dont do dairy while LCing.. i will experiment again with it when i am at or near goal.

[Nancy LC]

Roe, if you're ready to give the diet a trial, here's an excellent resource: http://www.celiac.com/st_main.html?p_catid=12&sid=91hH9H1VLCQfBaF-47106600908.1a

The forum there is very good for questions and information, too.

[Roe809]

Thank you, everyone!

[Nancy LC]

But one word of warning, if you're wanting to get tested for Celiac disease, don't go gluten free first. It can cause false negatives as the body heals relatively quickly. The exception being if you use Enterolab for testing, they can detect it much longer than it can be detected in blood tests.

My other advice is, no matter what the testing shows, try at least the GF diet. Lots of people with negative results (from blood tests, not so much stool test from Enterolab) still have positive results from a dietary trial.

[alisbabe]

I too found that the insomnia eased, as did the bloating, cramps and diarrhoea. I class myself as gluten intolerant now, didn't bother with the doc tho.

[ojoj]

My mum was diagnosed with celiac disease when she was 70, prior to the diagnosis, she'd had "tummy problems" and aching joints for years.

I also had IBS and aching joints, but never put it down to celiacs, until I started Atkins and all my symtoms cleared up more or less overnight. I've not been tested and cant see the point, I'm just gonna believe that gluten was my problem and not eat it again!!!

Jo

[KarenJ]

I too found that the insomnia eased, as did the bloating, cramps and diarrhoea. I class myself as gluten intolerant now, didn't bother with the doc tho.

Ditto.

I've been eating low carb for two & a half years now, and still shocked at how many symptoms dissappeared.

Would the enterolab tests work on someone eating low carb for years?

[Nancy LC]

Well, wheat is in a lot of things: Supplements, soy sauce, many, many packaged food, low carb speciality breads. So it really depends on what you've been eating. Lowcarb actually made my gluten intolerance symptoms more pronounced since gluten is the protein portion of wheat, and it gets used lots in low carb baking (carbquick, low carb bars, Dreamfields, etc).

Enterolab states they can detect the antibodies for about a year after eliminating gluten. I guess it depends on what you've been eating!

[KarenJ]

Thanks, NancyLC. I almost knew you'd say that. I do (sometimes) eat Dreamfields and bake with Carbquick- but have a growing disdain for Frankenfoods. I'll have to start a log.
I know I feel best eating nothing but meats, eggs, fat, and veggies.

[Nancy LC]

Oh yeah, forgot a big gluten thing... BEER! :(

Actually... Paleo dieters consider grains to be a Frankenfood. :D Dairy too. :lol:

[Java Finch]

http://gluten-free.org/hoggan/dubious.txt

Should we all be gluten free?

Being dairy free scares me most, though. I like my cheese and my whole milk in my espresso each morning!!!

[Analog6]

I had to reply to this...in fact, your article inspired me to finally sign up with this forum! I get killer heartburn when I eat anything starchy...especially bagels, but also bread (without meat), donuts, pasta, etc. I don't eat near enough to justify my weight (I've run the numbers through FitDay), but I've been fighting the same 30 pounds for most of my life. Low carb works, but I can never stick to it. Could the problem be gluten? Does anyone else get heartburn from bagels? I've mentioned this to more than one doctor and never gotten anything but a blank look. Thanks.

Sounds just like I was, Roe. Any bakery product, even a supposedly benign thing like spanokopita would give me unbearable heartburn.

Try cutting out all wheat products for a week and see if you see an improvement. I always thought it was the fat giving me the heartburn, and was never disabused of this notion by a doctor!

[Roe809]

Sounds just like I was, Roe. Any bakery product, even a supposedly benign thing like spanokopita would give me unbearable heartburn.

Try cutting out all wheat products for a week and see if you see an improvement. I always thought it was the fat giving me the heartburn, and was never disabused of this notion by a doctor!

I don't think it is going to take a week....just the first day has seen an improvement. I'm now wondering...my 14 year old daughter has frequent problems with headaches, joint aches, fatigue, stomach pain...maybe I need to talk her out of eating bread! She also drinks a LOT of milk, and hates protein. Mmmmm.....

[Nancy LC]

It depends really, some people go months before seeing improvement. It took me 2 days before my IBS resolved, lots longer for the brain fog to clear up. Glad to hear you're doing better!

Yeah, it is really hard to get teenager's to change their diet. Eating is such a part of their acceptance ritual, to be different is devastating to a teenager. They really grapple with that over on the gluten free forums.

[babe]

Ditto.

I've been eating low carb for two & a half years now, and still shocked at how many symptoms dissappeared.

Would the enterolab tests work on someone eating low carb for years?

i've been lc for a couple of years but my weight loss stopped, and all my labs (glucose, c-reactive protein, homocysteine (?sp), cholesterol) were all going in the wrong direction. my cardiologist, who is gluten intolerant herself, did the blood test which was negative so she encourage me to do the entero lab ones. this isn't covered my my insurance so i had to stall for a while (and ya, denial is the big river in egypt :lol: ). i finally sent the poo off to texas. well, the poo was pretty much negative for antibodies, but the genetic part of the test was positive. ( i sprung extra for the genetic test simply because i was afraid it would be negative because of the lc)

so yes, i am gluten intolerant even though i've never had real dramatic symptoms i've never had any gi problems, but i do have a fair amt of joint/muscle pain, headaches, brain fog, and all my labs still indicate inflammation. and since i've been pretty lc for a long while the question now becomes - what the heck do i have to give up now? i've never been big with the lc baking and frankenfoods, but i eat out a lot and that is going to be the biggest issue in identifing hidden gluten. i'm not sure that i'm really that dedicated. sigh.

so karen, alisbabe, what changes did you make in your diets?

and nancy, i find it interesting that you had more gluten symptoms on lc, i wonder if that's why my lab work went screwy.

[Nancy LC]

Babe, did you get tested for Casein intolerance? It shares a lot of the similarities with gluten intolerance. And did you get the fecal fat test done? That shows villi damage.

I had more symptoms because of the low carb products all contain high amount of gluten in them. I was eating Carbquik and even had Vital Wheat Gluten at home for adding to things. :p

That's basically the basis for low carb baking... lots and lots of gluten. :p

As for the aches and pains, etc. You might want to check into the Paleo diet. There's a lot of foods that can cause problem like that. Also, intermittent fasting will probably help with the inflammation.

[Java Finch]

A question about entero labs - does a positive test from them = an official "diagnosis"? I know that gluten-free foods are somewhat tax-deductible, right (The extra cost of them over the 'usual' cost)?

Also, how much do they charge for the full workup?

[Nancy LC]

I have no idea about the tax deductability of food.

Define official diagnosis? You won't get a celiac diagnosis from them. They'll just tell you if you react to gluten. If you want a celiac diagnosis, you have to undergo a biopsy.

And there prices, FAQ and essay is at: www.enterolab.com

You might be able to get info at glutenfreeforum.com about tax deductions but... if you're low carbing, you're probably not going to be buying much GF foods. They're all very high carb.

[Catalyst27]

The more I read your post and others, the more I started to think I may have an intolerance or inability to process gluten. Ever since I can remember (6 or 7) it has hurt me to eat. After virtually every meal I'd get heartburn and had at turns constipation and as I got older diarrhea. I love oatmeal and ate it every morning for years and lived with the resulting heart burn. At 25 I tried the Atkins diet to support my roommate and because I had plateaued with my current diet. I immediately noticed it no longer hurt to eat. I wasn't hungry all the time and I slept like a baby. My skin cleared up too...finally. I have recently gotten back on the wagon after being off for 2 years with Atkins and I'm feeling better after only 3 weeks. I'm going to look into cutting out gluten, however, as that apparently seems like it might be the root cause all of all my problems for the past 23 years.

[alisbabe]

so karen, alisbabe, what changes did you make in your diets?


I'm paleoish.

I avoid visible grains, and potatos.

I avoid milk and yoghurt, take cheese, butter, although I was tested positive for milk allergy as a pre-teen. Unfortunately I have a cheese addiction. I will cut it out eventually, but think it's best to make sure I can stick to the rest first.

I eat beans, pulses etc, but intend to cut these out too eventually, and try not to go mad on them.

I eat fruit sparingly, as I find it sets up terrible cravings and also causes some bloating.

Problem is when in a rush and eating tinned/pre-made or when eating out I don't avoid sauces/gravies. I know this is knocking me back. I also eat franken meats like hot dogs (wheat) and salami (sugar).

Just I have two jobs, a small business and a college course lol. And a dog and the tai chi classes, so I don't cook at all 3 days a week, just reheat an evening meal in the microwave.

[waywardsis]

Babe - I'm gluten and casein. I've cut out all grains except corn on occasion, and use almond flour if I'm going to bake muffins. No dairy at all - I make ghee from butter, and use coconut milk in my tea (I am a tea junkie) and cocoa. For cooking fats, I also use lard and duck fat, sometimes coconut oil.

Incidentally, anyone with casein or lactose intol who is a wine drinker may want to check if their preferred brand uses casein in the fining process. I think this more applies to whites than reds but I am still looking in to it.

BTW - Without Nancy I wouldn't have found out what my problem was...and I am soooo grateful to her :rheart:

[babe]

Babe, did you get tested for Casein intolerance? It shares a lot of the similarities with gluten intolerance. And did you get the fecal fat test done? That shows villi damage..
no and of course, now i wish i had!

Also, intermittent fasting will probably help with the inflammation
i've started if about 2 weeks ago but haven't noticed much of a difference.

[Nancy LC]

I need to go get my latest test results and see if the IF has changed my CRP and other results. Arthritis-wise, I think it'd be helping me if I weren't chowing down on carbs as much as I am. I had potatoes and it has caused some problems.

[KarenJ]

so karen, alisbabe, what changes did you make in your diets?


Like alisbabe, I have an addiction to cheese, but I do eat some dairy. Cream for the coffee, and yogurt.

I eat a lot of meat, butter, eggs, and sardines. I've been backing off veggies, but still eat maybe 3 servings a day.

We eat dessert a few times a week- either a little fruit, a little dark chocolate, or LC cheesecake. I try to keep dessert at about 5-7 net carbs.

Eating out has become a once-a-month thing for us, as we really have no idea what is in the food. After reading Michael Pollan, I find myself looking at the food and asking myself where the corn is. There is corn in it, somewhere. Or wheat. Or sugar.

[Nancy LC]

Celiacs have adapted to eating out. It's always a risk, but you can limit your possibility of accidently eating things you shouldn't. Personally I use the Triumph dining cards. They work very nicely for me.

The problem with continually ingesting stuff you are reacting to is the antibodies do damage and last for months! And it isn't just limited to the gut/intestines, they're finding brain damage associated to gluten sensitivity and the same antibodies in people's brains.

[Nancy LC]

I keep forgetting to post my siggy. The excellent resource, The Gluten File, is linked there.

[KarenJ]

A while back, Dr. Eades commented on some research that Dr. Cordain was doing.
Eades quote:
"we discussed his new research interest, which is diet and epithelial growth factor (EGF). He is doing some real groundbreaking work on what happens to EGF receptors with a non-Paleolithic diet. His data is so powerful that I won’t be surprised if he gets in published in either Nature or Science, the world’ s two leading scientific publications. I don’t want to spill the beans before he’s published, but I can tell you the take home lesson: don’t eat wheat, rice, or corn and drink milk."

My only question is about the syntax of the last sentence, ie, did Eades mean to say not to drink milk, or to drink milk? My guess is no.

Putting all the pieces of the puzzle together by reading the works of Cordain, Eades, Atkins, Enig, Lutz, Colpo, etc; really makes me question wether these substances should be at the core of our food supply. It is only the non-celiacs, the non-crohns, the non-diabetics who have somehow built up an immunity to the disease causing pathogenic grains.

Think of all the nice cows that could be grazing on real grass without all that nasty corn in the way.

[Nancy LC]

I'm betting he meant or drink milk. Dr. Fine thinks milk is responsible for a lot of autoimmune disorders.

I think the problem is that we just haven't had enough time to develope the necessary mutations to handle these foods. And yeah, we've made them the foundation of our nutrition!

Dr. Fine is finding high levels of antibodies to gluten in stool samples of about 30% of the random population and something like 60-70% of those with symptoms.

Slightly more than that have their symptoms improve on adopting a GF diet.

[waywardsis]

Hey Nancy, do you know how many gluten-sensitive are also casein sensitive, percentage-wise? You know, just off the top of your head. ;) Another online buddy who is celiac mentioned to me that after going g-free she noticed reactions to legumes as well, so I wonder if legume proteins (soy etc) are similar to gluten, much like casein is, and best avoided as well.

Karen I'd guess that he meant don't drink milk. I am mourning dairy, I admit, but it is helping me to ask myself, whenever I miss cheese or something, if I'd be so willing to eat it if it was made with human breast milk. That helps put the whole dairy issue into perspective somewhat - why consume a cow's breast milk? I imagine a bunch of women kept artificially lactating and constantly pumping their breasts, and then using that milk to make veggie dip or ice cream. Kind of Handmaid's Tale and creepy.

(note - Yes, I would probably eat breast milk cheese. Once.)

[Nancy LC]

If I recall correctly I think soy and gluten can both do villi damage, giardia too. I don't think casein can, but it can cause a lot of autoimmune diseases, accoding to Dr. Fine.

I don't know about the % of casein sensitivity. I don't think it was in Dr. Fine's presentation I saw.

He's got his slides up from the presentation I saw (you need IE to see it) http://www.enterolab.com/StaticPages/Frame_Resources.htm

[arc]

don’t eat wheat, rice, or corn and drink milk.

He means don't eat grains and drink milk at the same time (breakfast cereal, anyone). Apparently, Cordain has found some kind of problem with the combination.

[Bat Spit]

I wonder if legume proteins (soy etc) are similar to gluten, much like casein is, and best avoided as well.

I can't find my link right now, but there is some evidence for this. There is a growing body of autism research that links these three in autistic children and shows that a significant percentage of autistic children taken off those 3 will have dramatic improvements.

Apparently the proteins are the same size and shape, and if you have any problem with permeable intestines/leaky gut, then all three should be avoided.

[arc]

Apparently the proteins are the same size and shape, and if you have any problem with permeable intestines/leaky gut, then all three should be avoided.

Since I've gone gluten free, I can no longer tolerate most legumes (including peanuts, darn it). That was kind of unexpected.

[marty12550]

I had the biopsy done first. When I was waking up from the procedure the doctor mention celiac. That day I stoppped eating gluten. All my symptoms went away. Insomia, severe constipation, severe fatigue, I was on meds for ADHD- couldnt remeber a thing, heartburn, severe nausua to the point I was crying and wiching I could throw up and get over it.

After two weeks of GF the doctor told me my biopsies were normal. I told him how I felt a million times better and all he could say was the biopsies were normal, make another appointment if you have any more problems and walked out of the room. The only thing he is a specialist at is being an a-hole. All in all, I went to 3 gasto doctors. All of them knew near nothing about celiac. The last one had me eat gluten to do the blood test that should have been done first. I was sick the whole time

There is also a book by Dr Green from the Celiac Center at Columbia University- very good explains a lot.

It is very hard to get a correct diagnosis. I am going to try Enterolab myself when I can get the money

[arc]

I never had any tests done. I feel better gluten free, even in a high carb environment, and I get sick if I eat it. That tells me all I need to know. I don't know that I want to get tagged with the celiac label officially anyway. I'm not sure if it would affect life insurance rates or anything like that.

[Catalyst27]

These days especially insurance companies are looking for any reason not to pay claims or deny service. If I ever officially get tested for problems with gluten I'll be paying out of pocket make sure the doc doesn't submit for insurance. Never know when a simple test, even though it comes back negative, is going to haunt you. Used to work processing claims.

[Nancy LC]

If you do pay out of pocket, do Enterolab, not your doctor's tests. The tests they're using in mainstream are not very good.

[twoeyes]

I admit, but it is helping me to ask myself, whenever I miss cheese or something, if I'd be so willing to eat it if it was made with human breast milk. That helps put the whole dairy issue into perspective somewhat - why consume a cow's breast milk? I imagine a bunch of women kept artificially lactating and constantly pumping their breasts, and then using that milk to make veggie dip or ice cream. Kind of Handmaid's Tale and creepy.

(note - Yes, I would probably eat breast milk cheese. Once.)


That is great!!!! I think the may have just helped me!!! :thup:

[inwood140]

I have suffered for years with acid reflux, that is now Barretts Disease. The bloating was unbearable, and I felt like every joint in my body ached. Went off gluten last September and feel like a new person. Just rurned 60 and feel better than I have in years. Since my doctors almost killed me by treating me for diseases I didn't have, I now am listening only to by body, and it tells me that gluten is poison for me.I had to reply to this...in fact, your article inspired me to finally sign up with this forum! I get killer heartburn when I eat anything starchy...especially bagels, but also bread (without meat), donuts, pasta, etc. I don't eat near enough to justify my weight (I've run the numbers through FitDay), but I've been fighting the same 30 pounds for most of my life. Low carb works, but I can never stick to it. Could the problem be gluten? Does anyone else get heartburn from bagels? I've mentioned this to more than one doctor and never gotten anything but a blank look. Thanks.

[waywardsis]

Great - glad you feel better. It really is awful what that stuff can do to us.

[rodmick]

bumping to come back and reread when I have time