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Razzle Dazzle Brazell

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Razzle Dazzle Brazell Enthusiast

I feel so depressed right now and I am resolved to give in and accept things for how they are meant to be. I get sick now anytime I have carbohydrates and sugars. It just progresses to more and more complicated diet. Well call me an addict or a bafoon but I cannot live my life with no carbohydrates and no sugars and you know what...I was not made to live without carbohydrates and sugar. In my current mindset, I am going to just do what I want while I can and enjoy my life as much as I can because I have found it impossible to stay away from sugar. I regret doing that stupid gluten challenge. I feel as though that three week period completely messed up my immune system and sent me on the path to hell. I just don't care anymore


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Celiac Mindwarp Community Regular

Hey razzle

Just wanted to let you know I was wrecked like you after my gluten challenge. It took me a few weeks to start feeling better, once gluten-free. My sugar levels were a mess. I found I needed to eat good nutritious foods and lay off the junk. I have been better than for years now.

The challenge was hell for me, but my silver lining was that it convinced me never to eat gluten again, and that my problems are real. It convinced my GI to give me a non celiac gluten Intolerance diagnosis after my genes were negative.

Hang in there, be kind to yourself

Mw x

Razzle Dazzle Brazell Enthusiast

Thanx for the encouragement. My problem is that all I crave now is carbs and sugar and im still losing weight. I went low carb for a while and felt immensely better until I started a more physically demanding job. Since I started it I cannot stay away from carbs and sugar. I still think I have candida and I dont have hope it is conquerable. It seems it is a lifelong thing and I know that is not something I cant do for a year let alone a lifetime. I have alot of money on a credit card that I am trying to pay off from purchasing my own kitchen equipment to try and expand my diet without making myself sick. After that I guess I may try at getting more tests done. Then thanks to Obama I have a delimma of having to pay for health insurance premium and deductible I cannot afford by the beginning of next year. I have had every food allergy test done you can imagine. I feel like I am playing slots with my life and I am running low on tokens

Gemini Experienced

Thanx for the encouragement. My problem is that all I crave now is carbs and sugar and im still losing weight. I went low carb for a while and felt immensely better until I started a more physically demanding job. Since I started it I cannot stay away from carbs and sugar. I still think I have candida and I dont have hope it is conquerable. It seems it is a lifelong thing and I know that is not something I cant do for a year let alone a lifetime. I have alot of money on a credit card that I am trying to pay off from purchasing my own kitchen equipment to try and expand my diet without making myself sick. After that I guess I may try at getting more tests done. Then thanks to Obama I have a delimma of having to pay for health insurance premium and deductible I cannot afford by the beginning of next year. I have had every food allergy test done you can imagine. I feel like I am playing slots with my life and I am running low on tokens

Razzle.....have you been tested for diabetes? You say that you are eating carbs and sugar yet still losing weight. That can be a symptom of diabetes. I am sorry to have to bring that up but you sound so miserable....I feel bad about that. We have all been there and it is really hard to remain positive. It doesn't help to have to be forced to pay for health care by the government......I totally get that. I do have insurance through my job but it isn't that cheap for group policies either. This whole health care thing is gonna blow up and it's crazy to force people to buy into it or be punished. Like that doesn't add a lot of stress...... <_<

Hang in there because if you are feeling bad because of a gluten challenge, it may take a while for everything to calm down. But you already know that. Take care of yourself and I hope you feel better really soon.

Razzle Dazzle Brazell Enthusiast

No diabetes screened for that regularly all my life because my grandmother has it and I used to be overweight and had a sedentary lifestyle. Blood Sugar is always good fasting or otherwise. I never even became borderline.

My symptoms include: abdominal swelling and extreme fatigue, brain fog, itchy and burning, sore scalp, pain in the back of my head (like someone hit me with a baseball bat) and anxiety, achey joints, inability to fully exhale due to sharp pain in upper left quadrant of abdomen. Citric acid causes severe symptoms of all these as well as making me stutter. I will have problems putting the words together on my lips though i can in my mind. Gluten only causes abdominal swelling part, anxiety, and fatigue as well as bladder incontinence.

shadowicewolf Proficient

Remember can't never could do anything :)

Can you satisfy your need for sugar by eating naturally sugery things? Like an apple with a little honey drizzled on it?

Carbs and sugar end up being the same thing in the long run (if i remembered my Bio lectures correctly).

What are you currently eating? Are you getting enough nutrients in your diet? Sometimes we crave and want something more when we're not getting enough of.

Ninja Contributor

Hi Razzle,

Have you looked into/been tested for SIBO? I've heard that many people who continue to develop food intolerances, to the point of losing many whole, good, and nutritious foods, have had SIBO. Abdominal bloating, cramps, pain, "fullness" and weight loss are just some of the symptoms.

HUGS,

Laura


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Razzle Dazzle Brazell Enthusiast

I think I will just cough up the cash and get a bloodwork for different intestinal infection agents. I guess I gotta do what I gotta do. I am just afraid that it will be an endless and futile chase that only results in mounting debt.

Razzle Dazzle Brazell Enthusiast

i eat eggs, rice grits, or buckwheatmeal in the mornings. Lunch is usually baked chicken or sauteed turkey, baked turkey loin. vegetables are broccoli, cauliflower, summer squash, green beans, potatoes from time to time. I eat mostly lean protein except the past couple of weeks i have been having quite a bit of baked goods like rice bread, breaded chicken, scalloped potatos, mashed potatoes, meatloaf with millet...it really is random except meat. I try to eat different things

ndw3363 Contributor

I know the feeling well - and I share your pain. I too have trouble with Candida - and I notice my carb/sugar cravings are SO much worse after I've "cheated" and had something in that category. Most recently I was eating gluten-free snickerdoodles with cream cheese frosting...so good, but SO bad! In this instance, your body is craving things that are bad for it. I try to fight the cravings by telling the bad yeasties that they will NOT get the best of me! I'm in control, not them! Doesn't always work, but after a couple days of eating right, I don't have those cravings anymore. My go to "sweet" fix now is cashews mixed with a spoonful of Enjoy Life choc chips. Lunch I try to eat turkey/salami rollups (no bread) with an apple or some broccoli slaw. Dinner is always a meat and a vegetable - faves are pork chops, fish or chicken with a side of roasted broccoli or sauteed spinanch w/ snow peas (and tons of garlic cause that's how I roll) :-) Let me know if you need some recipes - I doesn't have to be so terrible. Hang in there!!!!!

Takala Enthusiast

Ditch the millet ! Ditch the millet ! Cross contamination city, and it can be as bad as oats for some of us. :ph34r:

You need more good fats- LOTS of fats - from coconut milk or oil, lard, bacon, vegetable or olive oils, nuts, avocado, etc, and some natural carbohydrates in the form of starchy vegetables and fruits, if you are going to eat like this ("sugarless") and have half a chance of succeeding. Can you do legumes in the form of peanut butter or very well drained and rinsed canned beans ? Sweet potatoes ? Squash ? One of the most filling things to eat is canned pure pumpkin puree mixed with canned coconut milk, it can be savory for a soup base, or sweet for a breakfast, and sometimes this mixture baked with eggs to form a custard. Can you tolerate some form of stevia for a sweet taste ? What about agave or honey ?

You need to get something else in there at breakfast. A pure rice first meal = not good. Add some fat to that, somehow. Can you puree part of a banana with some green leafy vegetables and/or parsley and some berries for a smoothie ? What about a baked sweet potato with some almond butter ? What about leftovers for breakfast ? Cannot bear the thought of fish that early? What about shrimp or chicken? You can take some cooked brown rice pasta, and mix it up with a fast homemade thai- style peanut sauce and coconut aminos and top it with some shredded vegetables.

You are hungry for micronutrients, and that is why you are having such cravings. The body interprets needs "nutrients" as basic ferocious hunger for sugar. Most regular people feel this and try to satiate it with highly processed "white" carbs such as white rice, white bread, white potatoes ( I am a big fan of eating some fat if you eat a white potato, such as frying it, so it slows the whole processing thing down) and bad things like white flour pastries, cakes, cookies, etc made with lots of white sugar. These things are processed quickly and spike a blood sugar high (wheeeeeee :o !) and then comes a blood sugar crash (and boom goes the dynamite :ph34r::wacko::o ). This sets up a bad cycle of eating "white things" - (as my neighbor calls them :lol: ) and wanting more and more of them.

If you do go to using gluten free flours and baking ingredients, try using the highest protein ones you can find, and combining two or more of them for the maximum nutrition. For example, you can use brown rice flour instead of white, and add a seed or nut meal flour. A sorghum flour mixed with amaranth or buckwheat can make a good all purpose "breading" coating, for example.

Be careful with your buckwheat sources, you do know that the Bob's red mill brand is all oat cross contaminated, don't you ? :( I am grinding the Burkett Mills (Pocono) cereal in a coffee grinder to get my own buckwheat flours. Buckwheat is technically a seed, as is amaranth. You can also try quinoa if you can stand the taste.

You can make a fantastic pancake/flatbread with just buckwheat flour and soaked chia seeds (and the other ingredients) - another way to add oil fat to your diet.

You can also tamp down the cravings by making sure you take a gluten free B vitamin complex, and a calcium supplement (not tums, try a calcium citrate) and some form of vitamin D and magnesium.

Juliebove Rising Star

Ditch the millet ! Ditch the millet ! Cross contamination city, and it can be as bad as oats for some of us. :ph34r:

You need more good fats- LOTS of fats - from coconut milk or oil, lard, bacon, vegetable or olive oils, nuts, avocado, etc, and some natural carbohydrates in the form of starchy vegetables and fruits, if you are going to eat like this ("sugarless") and have half a chance of succeeding. Can you do legumes in the form of peanut butter or very well drained and rinsed canned beans ? Sweet potatoes ? Squash ? One of the most filling things to eat is canned pure pumpkin puree mixed with canned coconut milk, it can be savory for a soup base, or sweet for a breakfast, and sometimes this mixture baked with eggs to form a custard. Can you tolerate some form of stevia for a sweet taste ? What about agave or honey ?

You need to get something else in there at breakfast. A pure rice first meal = not good. Add some fat to that, somehow. Can you puree part of a banana with some green leafy vegetables and/or parsley and some berries for a smoothie ? What about a baked sweet potato with some almond butter ? What about leftovers for breakfast ? Cannot bear the thought of fish that early? What about shrimp or chicken? You can take some cooked brown rice pasta, and mix it up with a fast homemade thai- style peanut sauce and coconut aminos and top it with some shredded vegetables.

You are hungry for micronutrients, and that is why you are having such cravings. The body interprets needs "nutrients" as basic ferocious hunger for sugar. Most regular people feel this and try to satiate it with highly processed "white" carbs such as white rice, white bread, white potatoes ( I am a big fan of eating some fat if you eat a white potato, such as frying it, so it slows the whole processing thing down) and bad things like white flour pastries, cakes, cookies, etc made with lots of white sugar. These things are processed quickly and spike a blood sugar high (wheeeeeee :o !) and then comes a blood sugar crash (and boom goes the dynamite :ph34r::wacko::o ). This sets up a bad cycle of eating "white things" - (as my neighbor calls them :lol: ) and wanting more and more of them.

If you do go to using gluten free flours and baking ingredients, try using the highest protein ones you can find, and combining two or more of them for the maximum nutrition. For example, you can use brown rice flour instead of white, and add a seed or nut meal flour. A sorghum flour mixed with amaranth or buckwheat can make a good all purpose "breading" coating, for example.

Be careful with your buckwheat sources, you do know that the Bob's red mill brand is all oat cross contaminated, don't you ? :( I am grinding the Burkett Mills (Pocono) cereal in a coffee grinder to get my own buckwheat flours. Buckwheat is technically a seed, as is amaranth. You can also try quinoa if you can stand the taste.

You can make a fantastic pancake/flatbread with just buckwheat flour and soaked chia seeds (and the other ingredients) - another way to add oil fat to your diet.

You can also tamp down the cravings by making sure you take a gluten free B vitamin complex, and a calcium supplement (not tums, try a calcium citrate) and some form of vitamin D and magnesium.

Very interesting. I rarely get cravings and when I do, I am always lacking in some nutrient. Like magnesium. I do use the Cron-O-Meter online often and run all of my food through it. I can then see what I am lacking and take more supps if needed.

1desperateladysaved Proficient

Sorry about the gluten challenge things. I think if you hang on a while longer you will begin to feel better again. I hope you get some definative answers from any and all tests.

I just realized that my craving for junky sweets is gone. I loath them. I still am attracted to some fruits and starchy foods. I always combine any fruit with meals or protein. I hope you are able to absorb sugar from your food.

Diana

Razzle Dazzle Brazell Enthusiast

gasp I think the millet probably got me. That stinks because I found millet to be the best in frying breaded items. I dont bread all the time but still. I went kinda low sat fat when I found eating too much red meats or cashews made for foul smelling and floating pale eliminations. My color has returned to normal now. I used to fry a lot in coconut oil though. I think I will pick that back up. I think I am going to go ahead and switch to sweetened coconut milk just because it will help fight the temptation to drink juices with citric acid and corn syrup because of the blandness.

Speaking of blandness, I have a real problem with tasting things except sweet and herbs. Why? beats me but I salt everything to death and pepper everything to death and that is why i get hypertensive and will literally burn my tongue and throat with all the spice. I think this is what had caused my salicylate sensitivity. Dont want to back down that path. I wonder if it is because of the thrush I had and how long it will take for the lack in taste to go away since my thrush has been gone a while. or maybe it is poor oral hygeine. I react to acidic liquids in plastic bottles pretty strongly. I have been brushing out my whole mouth with just baking soda for a while now.

I just cant help but think about nine months ago I was a normal person and now my immune system is playing tether ball with my health. oh i also do not tolerate luncheon meats. I have a slicer and still need to learn how to make my own deli slices at home, that will open a whole new world to me. Bacon and turkey slices and i have a sausage maker now.. It may not taste the same but it is something...

gatita Enthusiast

I think I will just cough up the cash and get a bloodwork for different intestinal infection agents. I guess I gotta do what I gotta do. I am just afraid that it will be an endless and futile chase that only results in mounting debt.

I hear you on this!!! Even with insurance I still owe $1000 for all my tests last year. At least I did finally get diagnosed with SIBO recently and hope the treatment works. Sometimes you just gotta keep trying, but I feel your pain...

Razzle Dazzle Brazell Enthusiast

Well that makes me feel better. I am at over two thousand because I had to buy all this kitchen equipment in an attempt to expand my diet by making my own of everything, condiments and deli meats hopefully, sauces and then just getting my own of things to prevent from getting sick using my mom's stuff. I guess it is expensive to set up a kitchen anyway let along getting weird things like food mills and sausage stuffer. I will be alright. I will find out what it is and get it fixed and I will have endured much difficulty and seemingly impossibility that I will be empowered to accomplish what I desire to accomplish in life.

AnnJay Apprentice

Yeah, I get discouraged sometimes too. Especially when just as I think I have it figured out and then I feel sick again. Blah. Since removing gluten 8 months ago I have also had to remove corn, soy, tomatoes, and chocolate. Dairy was already gone. It sounds like we are eating similarly, with meat and vegetables and a bit if starch thrown in. Quinoa sometimes, potatoes sometimes, and rice a few times a week. Cauliflower, parsnips, and other veggies are often starches for me.

And all we want is to feel good again. It's hard. I keep hoping that after a year or so I might be able to add something back to my diet. But I still get sick from the very occasional attempt to eat at a restaurant. And that is so discouraging! It is a daily effort to keep myself fed, healthy, and without cross contamination from my family. But, it is worth it!

Another consoling thought is the hope that medical advances will some day lead to easier dx and treatment for people like us.

Celiac Mindwarp Community Regular

Hey razzle, sounds like you turned the corner. Glad things are looking up :)

I got a lovely new purple toaster and bread bin about 2 weeks before I gave up gluten-free bread... It can be an expensive old time..

CommonTater Contributor

I feel so depressed right now and I am resolved to give in and accept things for how they are meant to be. I get sick now anytime I have carbohydrates and sugars. It just progresses to more and more complicated diet. Well call me an addict or a bafoon but I cannot live my life with no carbohydrates and no sugars and you know what...I was not made to live without carbohydrates and sugar. In my current mindset, I am going to just do what I want while I can and enjoy my life as much as I can because I have found it impossible to stay away from sugar. I regret doing that stupid gluten challenge. I feel as though that three week period completely messed up my immune system and sent me on the path to hell. I just don't care anymore

Can you have Agave in place of sugar, that's what I use?

JNBunnie1 Community Regular

Razzle, I SO FEEL YOUR PAIN. It has taken me six years and dozens of changes to

reach a healthy state. I couldnt have tomatoes for over a year. I don't do well with beans,

red or green peppers, spinach, or citrus. I am now on the lysine diet for 'herpes' thanks to

being infected with cold sores shortly before breaking up with my cheating ex-boyfriend, which

means little to no nuts, which I was using nut butters to bake with a lot before.

The stress of the (horrendous) breakup has left me entirely grain-free as I was experiencing

severe urethritis that was NOT a UTI but just inflammation, so I had to de-inflammatize (is

that a word?) my diet completely. I'm just now getting black and green tea back. Sigh....

I have been on probiotics for years, and upping it a few months ago helped a lot. When my

system feels overwhelmed I do a detox tea for a few days and take charcoal (not together,

of course) and that evens me out. I seem to suffer from a general inability to remove toxins.

All that to say I understand. It sucks. It's hard. And also- everything Takala said! :lol: :lol:

Razzle Dazzle Brazell Enthusiast

thx gatita that makes me hopeful i got a whole slew of tests done and we will see what happens with them. I am supposed to get the results for CBC, Tryptase (whatever that is), ANA, celiac panel (half the cost at 300), and some others... I really hope it reveals something. If not,, I will next get checked for an biointestinal imbalance or infection. I also feeli need to see why i am not properly digesting fats.

Marc49 Explorer

Open Original Shared Link

ANA as you probably know is looking for any inflammatory issues, too many to mention.

One thing I have learned,.......when ANYONE obsesses on a health issue, and spends a lot of time doing research on their own, you are bound to drive yourself to distraction at one point or the other.

This article leads to another article, on and on.

Before you know it, you have yourself dying from your own self diagnosis.

Quit dwelling on it so much, and you just might feel better.

Razzle Dazzle Brazell Enthusiast

Wow Marc49. I find your post totally useless and disrespectful. Perhaps the fact that five days a week I spend a third of my day at work means I am a workaholic. The word obsession implies that I give unrelenting and undeserved attention to what is going on in my body. I only have one body, one life and when what is going on with my body impairs my ability to suffer this life, then it is 100% deserved attention. When what is going on in my body makes it impossible to provide myself safely with mmy most basic neccessity to survive (nutrients), it is gonna get my attention.

And not that it is truly a point worth discussing but I will humor you: there were plenty of times I decided that I would just pretend like nothing was wrong and it just resulted in a lot of pain and suffering and a cascade of torturous symptoms that sapped my ability to function or even breathe or remmemmber what day it was or spend time with my family. Maybe you're right, if I quit dwelling on it and instead decide to starve myself rather thhan think about how to feed myself I will feel better for a day or two.

Ninja Contributor

Razzle,

Have you had any luck with digestive enzymes? (I really liked Enzymedica Digest Spectrum or Digest Gold.) The reason I ask is because fat malabsorption can be caused by pancreatic insufficiency. You might wanna give them a try if you haven't.

Hugs!

Laura

Juliebove Rising Star

Open Original Shared Link

ANA as you probably know is looking for any inflammatory issues, too many to mention.

One thing I have learned,.......when ANYONE obsesses on a health issue, and spends a lot of time doing research on their own, you are bound to drive yourself to distraction at one point or the other.

This article leads to another article, on and on.

Before you know it, you have yourself dying from your own self diagnosis.

Quit dwelling on it so much, and you just might feel better.

I must seriously disagree with you! As a person with mulitple medical problems, I was instructed by different Drs. to do research not only for myself but for my daughter. The bad thing about Drs. is that each one has his or her own specialty. They will concentrate on that and tend to ignore all of the other problems. At least in my experience. I have yet to find one that would put it all together for me. That fell to me. Had I not done research on my own, I would not have known that the statin I was on was causing some of my problems. Or that the diabetes med I was on was in fact raising my blood sugar. Or that some of my problems were caused by menopause. Actually a PA pointed me in that direction! I also wouldn't have learned about many of the deficencies I've had in my diet. Yes, I've been tested for some and some where found. But they didn't find some others.

Yes, I take a ton of vitaming and supplements now. But I have had to go to the Dr. far less than ever before. I can't remember the last time I had a cold or the flu. I did have recent problems that I now know were related to menopause. I had some skin problems, cause unknown. And an eye problem. Again, cause unknown.

I have also found that Drs. are usually of little help when it comes to diet. Unless perhaps it is celiac or a true food allergy. They do seem to understand these things. But they do not seem to understand food intolerances. Because there is no one standard test for these things.

I have never ever thought I was going to die. Although at some points in my life I was sick enough and sometimes made sick by medications that a Dr. prescribed and I couldn't tolerate that I sure wished I *would* die!

Perhaps if you don't suffer from things that you have yet to have ferreted out, then you wouldn't understand the lengths that some of us will go to in order to feel better.

And at times I do have to question whether my life such as it is, is really worth it. Not only do I have to stick myself numerous times each day to check my blood sugar but I have to shoot myself full of insulin most of the time when I eat. Or eat to try to get my blood sugar back up where it should be. I have to watch every bite that I eat, not only for the diabetes but my gastroparesis and my food intolerances. Let's see... I want a big salad. But will I actually digest it today? I have to think about it before I can eat. Or I am not digesting well. Let me run my food through the Cron-O-Meter and see where I am lacking. Oooh! Time to up the vitamin E again. Or... Can I go there? Let me check it out and see where I might be able to park. How far I might have to walk. Will I have to stand in line? Can I bring food in if I need to? Will it be too far away for me to drive to? Because if I spend too much time with my foot on the brake or gas pedal, my leg will cramp up on me. Will I be out in the sun? If I am, my Psoriasis might flare. And then I'll spend a few months (or more) trying to get those itchy red patches to go away.

For me it is always a good thing when I discover a problem and figure out what to do about it. And I seem to be doing pretty well at the moment except for the thinning hair and the occasional bout of low blood sugar. Now if I could just get my daughter well.

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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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