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Specific Carbohydrate Diet?


PreOptMegs

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danikali Enthusiast
I have questions:

Is there anywhere on-line where there is a list of safe/legal probiotic brands to use?

Does anyone know what the special instructions are for cooking the dried legal beans?

Open Original Shared Link

That is the website where you can buy the probiotics offline. That's where I got mine. They are about the same price as buying them in the store.

Anyway, Christine, you are lucky that you can tolerate all of those things. I can't have bananas, it seems like I have a problem with any kind of fruit. My main problem is bloating and heartburn at night. Anytime I eat the smallest amount of something that my body doesn't like, I blow up like a balloon and stay that way for a while. It's soooooooooooooooo f'in annoying. (Sorry, but it really is). I'm sick of feeling like I'm not in my own body when I look in the mirror. It's very depressing.

I just feel like I'm never going to be able to tolerate anything besides meat and veggies. I'm getting really depressed again. Is there anyone out there who had problems with foods for a while and can eat them now like a normal person? (SCD legal of course). I'm just really frustrated, really hungry, and really craving my beloved almond butter with rasins.


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cornbread Explorer
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Anytime I eat the smallest amount of something that my body doesn't like, I blow up like a balloon and stay that way for a while. It's soooooooooooooooo f'in annoying. (Sorry, but it really is). I'm sick of feeling like I'm not in my own body when I look in the mirror. It's very depressing.

Dani, I know exactly how you feel. I hate being bloated. I'm a size 2. Looks so ridiculous to wear my regular size clothes but have this pot belly sticking out!

corinne Apprentice

I've been adding just one food every 3 or 4 days. I react to a lot (well it seems most foods) so I've had to go really slow. So far it's just canned fruit, squash, beets, carrots, meat and eggs. All very well cooked. I got impatient at first, but felt sick so decided I needed to go slow.

Guest greengirl
Anyway, Christine, you are lucky that you can tolerate all of those things. I can't have bananas, it seems like I have a problem with any kind of fruit. My main problem is bloating and heartburn at night. Anytime I eat the smallest amount of something that my body doesn't like, I blow up like a balloon and stay that way for a while. It's soooooooooooooooo f'in annoying. (Sorry, but it really is). I'm sick of feeling like I'm not in my own body when I look in the mirror. It's very depressing.

Dani,

I'm sorry you're having such a hard time! I don't know if I am tolerating all the foods either since I have this burning in my intestines, but I don't know what to cut out.

You've only been on the diet for 5 weeks, which probably seems like forever, but in the whole scheme of things it's still early on and perfectly understandable that fruits would cause a problem. Sometimes I'll cook strawberries with honey for a smoothie instead of just adding them raw. I'm trying to stay away from most fruits at this point unless they're cooked.

I'm starting to realize, though, that there isn't one answer that works for everyone. Everyone's body seems to have its own unique way of responding to foods. I, too, keep searching for answers, and, yes, it does get depressing not knowing whether we're on the right track. I think it's just going to take time. Going slow is probably the best bet.

Have you tried some medication for the heartburn? I take protonix once a day and it helps a lot with acid reflux.

Christine

PreOptMegs Explorer

Honestly, here is how I added things in. Yes, I started out very strict on the diet, but since it is fresh fruit season, I have to have some fruit. Basically, I eat the fruit even if I think it is going to cause problems, just to get the craving out. If I get gas later, then I know I wasn't ready for it. Basically, I take out one day on a weekend to eat and try out the foods I want. For the rest of the week, I stick to meats, eggs, cheese, yogurt, and cooked veggies. After about a month of this, I have healed so much that even the fresh fruit doesn't bother me. For me there just comes a time when I have to have my raisins, no matter if my body was ready or not. I can eat them now, but in the beginning I just had to suffer through the gas.

danikali Enthusiast

Okay, so at least I'm not alone on this. That's good news. Yesterday and today, all I've had is carrots and meat, no juice even. I'm making the yogurt (it's at home cooking right now), so I will try that either tomorrow or Friday. But I guess it makes me feel a lot better to know that even if I have the foods that are 'legal' but still bother me, it doesn't stop the healing. For example, preptomegs, you said that once a week you try things like fruit, even if you know they bother you, but eventually, you can tolerate the fruit, even though once a week you give into your cravings. That's very good news. I try not to take any meds for my pain, so last night I took baking soda instead of real med. It doesn't work as well, but I think it helps a little. And yeah, my worst problem is the bloating, and some back pain and heartburn. I would say mostly the bloating though because there are times where I am just really bloated but don't have any pain anywhere. For example, if I have too much nut butter, which is my downfall, I'll have a huge stomach but it doesn't necessarily hurt me. Who knows. But I am wondering how this goat yogurt is going to taste without adding fruit to it......anyone eat it like that? It looked good this morning when I checked on it. I'm excited to see how it turns out.

dlp252 Apprentice
But I am wondering how this goat yogurt is going to taste without adding fruit to it......anyone eat it like that? It looked good this morning when I checked on it. I'm excited to see how it turns out.

Think of it as something like sour cream. I used to buy the store bought goat yogurt, and I thought it was a little more tart than a normal unsweetened yogurt--I almost always added some type of sweetener, but I didn't think it was too bad plain either.


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danikali Enthusiast
Think of it as something like sour cream. I used to buy the store bought goat yogurt, and I thought it was a little more tart than a normal unsweetened yogurt--I almost always added some type of sweetener, but I didn't think it was too bad plain either.

Okay, thanks. So I can eat it without adding anything to it and it is still edible...? I hope I can tolerate it, considering I have the whole casein problem. But Donna, you do too, right? And it doesn't bother you? I bought a yogurt machine and just got it on Monday, so I finally get to make it. Everyone keeps talking about the advantages of it, so I thought I better try it if it can help speed up to process of the healing. And it will also be great to add something sweet and different besides having mostly meat and veggies. Right now I can't really tolerate fructose, and I can only have small amounts of almond butter at a time. But I guess that's how nut butter should be eaten! hahah, I just get carried away because I love nut butters!

dlp252 Apprentice
Okay, thanks. So I can eat it without adding anything to it and it is still edible...? I hope I can tolerate it, considering I have the whole casein problem. But Donna, you do too, right? And it doesn't bother you? I bought a yogurt machine and just got it on Monday, so I finally get to make it. Everyone keeps talking about the advantages of it, so I thought I better try it if it can help speed up to process of the healing. And it will also be great to add something sweet and different besides having mostly meat and veggies. Right now I can't really tolerate fructose, and I can only have small amounts of almond butter at a time. But I guess that's how nut butter should be eaten! hahah, I just get carried away because I love nut butters!

Oh, I LOVE nut butters as well...I can eat a whole jar in a week by myself. I haven't had any goat yogurt since I found out I was intolerant to casein...I keep thinking I want to try it, but I'm afraid, lol. If I make my own (and I DID buy a yogurt maker), I was going to try it with coconut milk and a non-dairy yogurt starter. I think if I knew for certain eating it wouldn't damage my intestines I'd eat it in a minute and just live with any discomfort, lol.

Rachel--24 Collaborator
Oh, I LOVE nut butters as well...I can eat a whole jar in a week by myself.

I can eat a whole jar in one hour by myself. :blink:

I think there is something just WRONG with my eating habits. No wonder I got myself sick. <_<

Dani,

I used to make the yogurt out of goats milk...it tasted good to me and I ate it plain. I dont know if I'm the best judge though because I seriously eat almost anything and like it...except sushi. I tried it once and spit it out into my napkin. Gross.

dlp252 Apprentice
I can eat a whole jar in one hour by myself. :blink:

I was originally going to say something close to that because I seriously CAN eat that much in a day, lol.

danikali Enthusiast

I agree with both of you. I have been known to eat a whole jar of nut butter in a day too. When I love something (and I love most foods), I can just keep on going, and going and going......That probably is why our digestive systems are so messed up.

Okay, well I made the goat yogurt and I tried a little bit this morning but it was SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO BITTER! I mean, BITTER! And it wasn't really that thick. Did I do something wrong, or is it supposed to be like this? ANd I have a problem with casein too, but I keep hearing that for most people with casein problems, they can have the goats milk. And my stomach is so bloated everyday of my life, I feel like maybe this would help it? Who knows. Hopefully because I have found no cure for the bloating yet. Maybe I'll go out and get digestive enzymes today or something......anyone have any good results with those?

dlp252 Apprentice
Okay, well I made the goat yogurt and I tried a little bit this morning but it was SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO BITTER! I mean, BITTER! And it wasn't really that thick. Did I do something wrong, or is it supposed to be like this? ANd I have a problem with casein too, but I keep hearing that for most people with casein problems, they can have the goats milk. And my stomach is so bloated everyday of my life, I feel like maybe this would help it? Who knows. Hopefully because I have found no cure for the bloating yet. Maybe I'll go out and get digestive enzymes today or something......anyone have any good results with those?

Don't know about the bitter...I found the goat milk to be way more bitter than soy milk for instance...the goat yogurt was more tart than normal unsweetened yogurt, but I don't know if I'd call it bitter. I bought Stoneybrook Farms (I think) goat yogurt and it was runnier than normal yogurt...I kind of like mine really thick, but it was okay if I added lots of stuff to it. I sometimes would strain it through cheesecloth to separate the liquid from the more solid stuff...that takes a few hours or overnight though.

I was eating both goat yogurt and greek yogurt for the few months before I sent in my Enterolab tests, so I'm not sure if the antibiodies would have been from the regular or the goat yogurt. I know my allergist (before he retired) told me he though goat milk or yogurt would be okay since over my lifetime I probably hadn't had that much of it to build up antibodies...I don't know though...I ate quite a bit of it in the last 4 years.

danikali Enthusiast
Don't know about the bitter...I found the goat milk to be way more bitter than soy milk for instance...the goat yogurt was more tart than normal unsweetened yogurt, but I don't know if I'd call it bitter. I bought Stoneybrook Farms (I think) goat yogurt and it was runnier than normal yogurt...I kind of like mine really thick, but it was okay if I added lots of stuff to it. I sometimes would strain it through cheesecloth to separate the liquid from the more solid stuff...that takes a few hours or overnight though.

I was eating both goat yogurt and greek yogurt for the few months before I sent in my Enterolab tests, so I'm not sure if the antibiodies would have been from the regular or the goat yogurt. I know my allergist (before he retired) told me he though goat milk or yogurt would be okay since over my lifetime I probably hadn't had that much of it to build up antibodies...I don't know though...I ate quite a bit of it in the last 4 years.

Yeah, I guess I would call it tart. It was verrrrry tart! For example, did you ever have those white sugar sticks that comes with the pure sugar powder in different colors? Well, you know the taste that you would get after stick a bunch of that sugar in your mouth? That's what it tastes like. I'm kind of trying to wait on adding fruit back to my diet, but I don't know how I'll be able to eat this yogurt plain. It's so sweet! You said sour cream before, and that's what I imagined I was eating when I tasted it. I could never eat sour cream straight, so I don't know how I'm going to manage this. But if it will help me system, I have to figure out SOME way!

dperk Rookie

I have been on a gluten free diet for a 18 months, and I have been on the SCD diet for a year. I wasn't able to eat all of the foods that were legal, and kept losing more foods instead of gaining them. I hardly made it past the intro diet. I couldn't tolerate raw fruit, some nuts or yogurt - and lots more. Than almonds started bother me - and that was really bad news. I know that this diet helps, but I was at a stand still - and maybe sliding backwards. So I looked into other things that might help. I found this website - Open Original Shared Link - and have been doing the liver cleanses and parasitic cleanses. I was desperate - I had to try something, anything. Well, after 4 liver cleanses, I can say that it was like the icing on the cake. I can now eat things I haven't been able to eat in a year. I'm able to eat bananas, avacado, tahini, pecans, walnuts and even goats milk yogurt and cheese. It's amazing. So any of you that are still having trouble after doing the diet, please look into the liver cleanse. It really, really worked for me. I will slowly get off the SCD diet now - if this keeps up.

Hope this helps others out there.

Debbie

danikali Enthusiast
I have been on a gluten free diet for a 18 months, and I have been on the SCD diet for a year. I wasn't able to eat all of the foods that were legal, and kept losing more foods instead of gaining them. I hardly made it past the intro diet. I couldn't tolerate raw fruit, some nuts or yogurt - and lots more. Than almonds started bother me - and that was really bad news. I know that this diet helps, but I was at a stand still - and maybe sliding backwards. So I looked into other things that might help. I found this website - Open Original Shared Link - and have been doing the liver cleanses and parasitic cleanses. I was desperate - I had to try something, anything. Well, after 4 liver cleanses, I can say that it was like the icing on the cake. I can now eat things I haven't been able to eat in a year. I'm able to eat bananas, avacado, tahini, pecans, walnuts and even goats milk yogurt and cheese. It's amazing. So any of you that are still having trouble after doing the diet, please look into the liver cleanse. It really, really worked for me. I will slowly get off the SCD diet now - if this keeps up.

Hope this helps others out there.

Debbie

Debbie, please tell me more about this. I just went to your website and looked at it. I will def. give it a try. I had the goats yogurt on Friday and was okay at first, but later that night until now, I am sicker than anything and can't tolerate anything at all. Where did you hear about this? Could I get sick from this? Do you only do it once with four doses in the two days?? If you want to e-mail me, please do. I'm so desperate. I feel like eventually I won't be able to eat anything without getting sick and I feel so depressed right now. My e-mail is Danikali22@hotmail.com.

"Zap daily the week before and complete the parasite killing program before attempting a liver cleanse."

I would like to do this this coming Saturday, but what does this quote mean? What should I be doing this week before I do my first clense?

Thank you.

danikali Enthusiast

OKay, I just realized what this zapper was, and I can't afford that right now, for one and for two, it seems like a scam and I'm sick of being scammed. Also, I have to do this other clense program for a while first? I can't and won't pay for that stuff, did you Debbie?

Rachel--24 Collaborator

Dani,

I used to do all that stuff you read about on CureZone and I can tell you that it didnt help me one bit. I did coffee enemas and cleanses and all that stuff....it didn't work. Thats just my experience though. I'm getting better since I eliminated all corn and I've gained 10 lbs. in one week. I'm able to eat alot more stuff now. I'm recognizing that when I get "corned" I start reacting to other foods again and eating becomes "scary" because of the symptoms but once the reaction subsides things settle down and my tolerance improves again. I guess its pretty much the same as getting glutened but corn is much harder to avoid. I can drink milk now so I'm not really casein intolerant...it was just that all the milk and dairy products had corn derivatives in them. I got the one brand of corn-free milk and I get no reactions from it!! I'm a little paranoid that I'll become intolerant to casein if I drink the milk regularly so I'll probably chill out on it but at least I can make yogurt now! All the store bought kinds have corn so I'll make my own...don't know where I'll get my starter from though. <_<

Hmmm...I'll have to put some thought into that.

nikki-uk Enthusiast

Rachel,

I've been following your progress and I'm glad to see things have picked up for you and that you've put some weight on-and that you can tolerate a little dairy!!

Hope your progress (and all others) continues :)

danikali Enthusiast

Hi everyone,

Rachel, I'm so extremely happy for you. The fact that you gained 10lbs is amazing and is def. proof that your body is starting to work the way it should. I figured that cleanse wouldn't work when I read about all the other crap you have to buy with it. And I'm glad you reminded me that EVERYTHING will bother you when you eat something that doesn't agree. For example, last night I had carrots and all night last night I was sick. I'm actually taking off of work today because I just feel 100% lousy.

I just talked to someone on SCD who is like an expert, and she reminded me how extremely powerful the goat yogurt is and I should have had as little as 1/8 of a teaspoon to start off with. I had a small bowl of it, so I created whats called a herxheimer reaction, or a die off reaction in my body that was bigger than it had to be, so my symptoms were worse.

For now it's back to meat, and after that, when I add things in, it's going to be extremely extremely slow. I HAVE TO DO THIS. I NEED TO GET BETTER.

miamia Rookie

Rachel-

I ahve been following your posts on the corn issue. I can't even tell you how similar your situation sounds to mine. The candida, leaky gut, malabsorbtion inability to gain weight, etc. I have tried everything and have not gotten better - if anything worse. I ahd never seriously thought about the corn thing before but since you brought it up I have been doing a ton of research. I think i might really try to eliminate it. -I have nothing to lose at this point. I am so happy and hopeful to hear how you have improved. What have you been eating- brushing yur teeth with. God i thought soy was in everything but corn definitly takes the cake.

Any advice would be helpful and pleases please keep posting your progress.

Miamia

Dani,

I used to do all that stuff you read about on CureZone and I can tell you that it didnt help me one bit. I did coffee enemas and cleanses and all that stuff....it didn't work. Thats just my experience though. I'm getting better since I eliminated all corn and I've gained 10 lbs. in one week. I'm able to eat alot more stuff now. I'm recognizing that when I get "corned" I start reacting to other foods again and eating becomes "scary" because of the symptoms but once the reaction subsides things settle down and my tolerance improves again. I guess its pretty much the same as getting glutened but corn is much harder to avoid. I can drink milk now so I'm not really casein intolerant...it was just that all the milk and dairy products had corn derivatives in them. I got the one brand of corn-free milk and I get no reactions from it!! I'm a little paranoid that I'll become intolerant to casein if I drink the milk regularly so I'll probably chill out on it but at least I can make yogurt now! All the store bought kinds have corn so I'll make my own...don't know where I'll get my starter from though. <_<

Hmmm...I'll have to put some thought into that.

dlp252 Apprentice

Gosh Dani, I'm so sorry you are sick again!!!!

Rachel, I'm so happy you aren't sick again!!!!

dperk Rookie

I think the bottom line is :

Everyone is an individual - and we need to keep searching until we find the right combination that helps us.

For me, I tried a lot of things. It helped to go gluten free. It helped to follow the SCD diet. But I still couldn't eat many foods. There were more foods that were making me sick, and I wasn't able to gain any foods back. I was afraid that if this kept up, I wouldn't be able to eat anything without feeling sick. I was desperate - I had to try something.

I didn't buy the zapper (not sure about that one). I just did the wormwood, walnut hull tincture and cloves for two weeks, then went straight to the liver flush (cleanse). I've done 4 of them now - so I'm no expert.

I can't tell you how excited I am now that I can eat food again. Corn is not my trouble - I've been able to eat fritos again with no problems at all. I'm like a kid in a candy store - I just want to eat food............. After not eating Fritos and tahini for a year - they taste pretty good. And strawberries again, yhea......

I don't want to diminish SCD - I think it did help me to stay on it for a year. It just wasn't all I needed to do - I needed more. And cleaning out my gallbladder and liver was what my system needed, I guess.

Debbie

ON the issue of corn:

I haven't done corn in a year - no diary at all. All I could eat was fresh veggies, canned pears, applesauce, almonds and meat. No corn at all.

And I still had malabsortion, couldn't gain weight, leaky gut - plus a host of others if I tried to add anything else. It wasn't the problem for me.

Rachel--24 Collaborator
ON the issue of corn:

I haven't done corn in a year - no diary at all. All I could eat was fresh veggies, canned pears, applesauce, almonds and meat. No corn at all.

And I still had malabsortion, couldn't gain weight, leaky gut - plus a host of others if I tried to add anything else. It wasn't the problem for me.

Debbie,

I was on a similar diet for several months. I was on a very strict candida diet so only ate organic meat, fish and the allowed vegetables. I ate no fruits at all and definately no corn. There was no reason for me to suspect that corn was a problem because I hadnt eaten any. However corn is in pretty much ALL supplements, medications, toothpaste, etc. My thyroid medication contains corn starch...theres really no way to avoid corn 100% unless you're trying to and being very diligent about it. All frozen and canned fruits and veggies contain corn, applesauce contains corn, iodized salt is from corn, vegetables and fruits are cleaned with a corn wash and the wax on them is derived from corn whether its organic or not. I had reactions to baby peeled organic carrots so figured I was intolerant to carrots but now I've learned those also are not safe for someone who's intolerant to corn. Heck....I thought I was intolerant to everything. I not only reacted to everything I ate but also to the chemicals in my environment...especially perfumes. My leaky gut wasnt getting better, I was still underweight and I still had malabsorption...despite doing all the cleanses, enemas, candida diet, probiotics, gluten free, etc...I tried it all.

This is all getting better just from one week corn-free (mostly). If you were taking supplements, vitamins or medications of any kind...I guarantee you were not corn-free. The majority of my problems came from supplements because my diet was so strict. I didnt eat anything from a can...it was all fresh and I peeled everything because I knew the skins bothered me....I just didnt know why at the time. Corn is most definately the hardest thing to eliminate from your diet. Gluten and dairy are easy in comparison.

danikali Enthusiast

Rachel,

those little baby carrots have corn on them? And applesauce that just says 'apples' in it? Can you give me a list of all of things, just so I can see if I too need to eliminate that? I'm so desperate and scared. I'm really scared.

what about salt that says naturally occuring iodine? what about if my supplements say 'corn free' does that mean 100%?

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      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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