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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator

OK....I totally posted in the wrong thread!! :blink:

WTH happened??? :lol::lol:

Ummm....just nevermind my last post cuz it makes no sense...and Amanda isnt here. :ph34r:

I will now move it to the proper thread. :)

Sheeeesh....too many chocolate chips?? :unsure:


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Ridgewalker Contributor

Hi everybody!

Ok, I've been reading along in here for awhile, trying to keep up with new posts, and occasionally going back to random pages to see if I can pick anything up (hopeless,) and I have just a couple questions.

Many of you have problems with metal toxicity.

1- How did you figure that out?

2- How did you get the heavy metals? I've seen you all mention dental fillings, vaccines, mercury-laden fish, etc... But these are things that everyone in the country is exposed to. Why do some people get such a terrible build-up?

AndreaB Contributor
Hi everybody!

Ok, I've been reading along in here for awhile, trying to keep up with new posts, and occasionally going back to random pages to see if I can pick anything up (hopeless,) and I have just a couple questions.

Many of you have problems with metal toxicity.

1- How did you figure that out?

2- How did you get the heavy metals? I've seen you all mention dental fillings, vaccines, mercury-laden fish, etc... But these are things that everyone in the country is exposed to. Why do some people get such a terrible build-up?

Sarah,

I also read on the Lyme thread so I've read you're posts over there. I don't have lyme, but my whole family has some problems with metals, candida. I suspected metals due to our increasing food intolerances and I have a lot of amalgams. My husband was in the military and they are notorius for multiple shots yearly.

As far as why some people have more obvious problems than others........partly genetics I would guess. I would also suspect more people have problems that they think are normal or won't admit to. I would also suspect that some areas are more prone to variable levels of toxins, especially industrial areas. Rachel posted recently about forest fires and how they contribute to the mercury in the air. Pesticide and insecticide are used more and more and have polluted the soil and waters. All these toxins are building up, hence more disease and sickness.

Rachel probably has read much more about this and may have more to say.

Rachel--24 Collaborator
Hi everybody!

Ok, I've been reading along in here for awhile, trying to keep up with new posts, and occasionally going back to random pages to see if I can pick anything up (hopeless,) and I have just a couple questions.

Many of you have problems with metal toxicity.

1- How did you figure that out?

2- How did you get the heavy metals? I've seen you all mention dental fillings, vaccines, mercury-laden fish, etc... But these are things that everyone in the country is exposed to. Why do some people get such a terrible build-up?

Hey Ridgewalker!

No need to try to dig through the pages.....just ask anything. I have no problem with repeating stuff or pulling up older posts. :)

Figuring out metal toxicity wasnt too difficult for me since it was more obvious than in most cases. I actually got sick right after dental work....I went from having no symptoms or intolerances to having major debilitaing illness, multiple chemical sensitivities as well as the food intolerances.

It was hard to get help with it because it was over 3 years until I ended up with the right Dr.'s to deal with this.

There are tests for heavy metal toxicity....provoked urine challenge or hair analysis. It takes an experienced Dr. to read these tests and recognize heavy metal toxicity.

For example with the hair analysis.....having normal or low levels of mercury does not rule out mercury toxixity. In fact....the more severely toxic people (especially autistic kids) will not be excreting mercury....hence nothing is showing up in the hair.

My own hair analysis results about a year after I got sick showed very low mercury but my good minerals were all over the place....totally out of range. That strongly suggests mercury toxicity. My body was holding onto the mercury...therefore its not coming out in the hair. This can give the impression that mercury is not a problem if the person looking at the results isnt very knowledgeable about it.

The same can occur with provoked urine tests (but less likely) if the person is really having difficulties detoxing. I had alot of alternative testing to confirm that heavy metals are indeed a problem. Also...the chronic candida I'm dealing with is highly suggestive of mercury toxicity from amalgams.

2- How did you get the heavy metals? I've seen you all mention dental fillings, vaccines, mercury-laden fish, etc... But these are things that everyone in the country is exposed to. Why do some people get such a terrible build-up?

It depends on the persons genetics. How well can you detox mercury compared to your neighbor?? There is no way to answer this. Some people handle it better than others.....however, it *is* toxic to everyone.

Mercury comes from the environment, the amalgams, the water, the vaccines, the fish and many other sources....its also used as a fungicide for wheat crops. 90% of the mercury burden in our bodies comes from the fillings. The amalgams are the biggest source of exposure to mercury.

Besides genetics...other things come into play. Lyme is one of those things....it can impair the body's ability to detoxify itself....therefore heavy metals are usually (if not always) an issue for those with chronic lyme.

The more things accumulate the more difficult it is for the body to handle it all....the elimination organs become heavily burdened. When the load becomes too great we become symptomatic.

Every person is different in what their body can handle and how many things it takes to push them over the top. Stress, lifestyle, diet, exposure to chemicals, genetics....all of it factors in.

If you have a heavy burden of metals and arent sick....as the immune gets weaker from other added burdens you can be much more susceptible to infections. The infections produce their own toxins...creating a heavier burden.

Heavy metals (especially mercury) also can very much impair detoxification. Mercury can totally block pathways essential for detox....this can make a person much more susceptible to Lyme toxins, or mold toxins, or chemical exposures, etc.

It doesnt really matter what came first....the chicken or the egg....in the end once detoxification is impaired it ALL becomes a problem. Alot of people cant recover without addressing the heavy metals because the burden is so great that the immune system remains weak due to the toxicity. Infections such as Lyme persist because the immune system cannot recover enough to effectively control these infections.

Thats a big factor in why some people are on antibiotics to treat Lyme for years and years. Its because as soon as they stop the treatment the infection is once again gaining ground....the body is still very toxic.

These days we are exposed to more toxins then ever before. There is more mercury in the environment then ever before...our food is loaded with chemicals, plastics are everywhere...and the list goes on and on. More and more people will reach their threshold because the exposure is so great. The increase in Autism as well as chronic conditions such as Fibro and CFS are examples of this.

In the end its not usually ever *one* thing that got us sick. Things stack on top of each other as the body becomes more and more overwhelmed. I used the example of piling books...one on top of the other...eventually the stack will get too high and everything comes crashing down.

Ridgewalker Contributor
:o 90% mercury burden is from the fillings!? Are all metal fillings amalgam? What about metal crowns?
Ridgewalker Contributor

BTW, thanks for the quick replies! :D What you both said makes a lot of sense. I am shocked that the mercury exposure is that high from the fillings, I had no idea.

The Lyme thread stuff, yeah I have to admit I'm kind of stressed and bummed about the possible (probable???) Lyme. Mad, too... that something I hadn't thought about for almost 2 decades is coming back up again as a possibility, because of unreliable testing. Something I know a lot of people around here have felt.

I read somewhere that people with Lyme shouldn't give blood, and that's really disturbing me, because I've donated blood dozens of times. :( Jeez, a couple years ago I was about 2 weeks away from donating a kidney to my 6 year old nephew! (I'd completed all testing for it, and we were ready to go, the docs just wanted me to quit smoking before surgery. Nephew was in bad shape, and they ended up taking another kidney.) If I have it, and the surgery hadn't fallen through, could that have made him sick? From what I've read, the answer is yes... and then I start getting mad again.

I need to get tested and find out for sure, but it'll have to wait till next year because of finances. I don't even have insurance right now, and I want to get that before I get tested, in case it comes out positive.

Thanks again for the info!

AndreaB Contributor
:o 90% mercury burden is from the fillings!? Are all metal fillings amalgam? What about metal crowns?

All metal silver fillings are amalgam. Gold is gold, which is better than mercury but still not good.

Metal in crowns is also amalgam but I'm not sure if it's a problem or not. I had a porcelain crown I just had pulled that I'd had a root canal in and it had mercury around the base of it. I was quite surprised since I was under the impression it was all porcelain. My dentist had said that the part around the base wasn't problematic due to the high heat it's exposed to, that the mercury vaporizes.


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confusedks Enthusiast

Rachel,

I had never posted that before about the bite. I don't know why, but it dawned on me the other day when I was talking to my mom. It got really swollen and it was bad, but since I was going out of town the next day, we didn't do anything other than rub mosquito cream/ointment on it. Which porbably just spread the tick's bacteria. Also, I didn't even realize I just got back from camp right before the bite. :huh::o Ohhhhhhh, this is all making sense now. We will talk to this Dr. today and see what he says about all of this. Like I said earlier, if nothing else, he can order us the tests for Lyme through Igenex.

I didn't mean I was asymptomatic before camp, I was very symptomatic. I don't think camp had anything to do with it. I was feeling crappy before camp, but everything got way worse when I started school in Sept. because of the stress and lack of sleep due to studying, etc.

Carla,

The only problem with the temp. thing is that I never know when my period is starting or ending, etc. So I guess I just wait and hope I actually get it this month? And then on the 6th day of my cycle check it? We'll see if my brain fog will let up enough for me to remember!? Also, read above!

Andrea,

I know. It is really suspicious. I will talk to the Dr. about Lyme testing.

Kassandra :(

miamia Rookie

ok i don't really feel good enough to post althought i had a doctors appt so i have a few updates to give but i did n=some research on plant sterols and its actually really interesting and i found alot of info on how good they are for celiacs.

Here is one site on them

Open Original Shared Link

miamia Rookie

oh i know some people here have tried alpha-lipioc acid- what kind of reactions have you had?

CarlaB Enthusiast

Kassandra, are you talking about two different camps? One where you got a bite and one this year?

If you're not having regular periods, then you're not ovulating regularly, just take your temp at any time ... if you start a period within two weeks of taking your temps, then take them again. You will have a period two weeks after you ovulate (approx).

OK....I totally posted in the wrong thread!! :blink:

Thank goodness .... I didn't think my brain fog was THAT bad to not even know an Amanda on this thread!

Hi everybody!

Ok, I've been reading along in here for awhile, trying to keep up with new posts, and occasionally going back to random pages to see if I can pick anything up (hopeless,) and I have just a couple questions.

Many of you have problems with metal toxicity.

1- How did you figure that out?

2- How did you get the heavy metals? I've seen you all mention dental fillings, vaccines, mercury-laden fish, etc... But these are things that everyone in the country is exposed to. Why do some people get such a terrible build-up?

Sarah, I think most of your questions have been answered ... I had a provoked urine test and was positive for lead. I had my amalgams out and detoxed the mercury over 15 years ago, so mercury wasn't much of a problem this time though I did have some. I don't know how I got lead ... but it is commonly found in foods (chocolate) and lipstick.

I think we are all exposed to toxins .... if we're detoxing at the same rate (or better) than we are taking more toxins on, we are okay ... if not, then when they build up past a certain point, we will become ill, but it will be an ambiguous illness like most of us have, meaning several things contributing to making us ill.

I think this is why the ADA can do testing and determine amalgams to be safe ....if they test them on people with a lower toxic burden, they seem to be ... not that they are, but they also aren't the only toxic thing we are exposed to ... it builds up.

When I took away the toxic burden of the mercury years ago, my body could keep the Lyme under control. It wasn't until I was under a heavy stress load that I became sick from it again and that happened over 12 years later.

So, to return to health, I am not *just* taking antibiotics. I have chelated heavy metals. I am doing things to detox daily (saunas, coffee enemas, supplements, whey). I exercise several days per week. I eat no sugar, alcohol, or caffeine. Lots of sleep and rest. Etc.

Miamia, I hope you are feeling better soon. :)

CarlaB Enthusiast
oh i know some people here have tried alpha-lipioc acid- what kind of reactions have you had?

Chloe and I neither one reacted at all. We probably shouldn't be your guage though ...

BTW, Chloe is herxing on the doxy. She has been getting headaches, which was one of her Lyme symptoms from before. It has not been bad enough for her to miss school, but it is a sign that it's getting to more bugs.

Here in Ohio they have PI tests that the kids have to pass for each class. I think the idea is to keep the classes standardized ... anyway, Chloe has NEVER passed one the first time, EVER. Last week she got 100% on one the first try!!!!!

dlp252 Apprentice
oh i know some people here have tried alpha-lipioc acid- what kind of reactions have you had?

I had reactions when I took too much. I did fine with the original brand and dosage that I took, but when I ran out I bought another brand and it was almost double the amount in each capsule...I continued to take the same amount of capsules (not thinking I guess). It caused horrible mind trippy things and foggyness. That was the period that I was having such a hard time...dark thoughts, crazyness really. I don't remember what all else it did, but as soon as I cut down the dose I was taking I started coming out of that dark place and the rest didn't matter. :P

melmak5 Contributor

For anyone else who is in a rough spot digesting or absorbing nutrients, here is my review of products I have tried thus far. Note, these are just MY reactions and opinions.

I have not included prices, because they vary depending on where you live/shop, but the baby formulas are MUCH more expensive than the protein powders.

Dread ratings are my overall feelings towards having to down another dose.

Jay-Robb

confusedks Enthusiast

Carla,

I got the bite years ago. I went to Girl Scout camp then I came home and the next day we went to Lake Tahoe for vacation. It was the day in between the Tahoe and Camp trip that I got the bite (or it showed up.) So I am talking about 2 different camps. Jin actually was the first one who said that she thought camp this past summer was where I could have gotten a bite. But the only reason I don't think that is because I was having symptoms before camp. Like I said earlier, I don't think camp triggered anything I, but I think because it was close in time to when school started (major stress) Jin thought it was camp. I think everything has been a major contributing factor. When I was hospitalized in June, that was a burden mentally because it started a whole new blanket of health problems with my back which we thought was under control. I think the biggest trigger was moving to New Zealand and coming back. It was a lot to deal with and that's when the complete exhaustion started and has only continued to get worse.

Kassandra

AndreaB Contributor
Here in Ohio they have PI tests that the kids have to pass for each class. I think the idea is to keep the classes standardized ... anyway, Chloe has NEVER passed one the first time, EVER. Last week she got 100% on one the first try!!!!!

That's great news Carla!

UPDATE

I started Chinese herbs two days ago and have had a very good response thus far. (more energy and I am HUNGRY)

I reacted to turkey, prunes and dates and had to pull them out of the rotation.

(sweet potatoes, potatoes, collards, kale, onions, carrots, beef, garlic, baby formula are the "I can eat these without regurgitating or having a mouth reaction, but they still hurt like hell when I do")

Thanks for the update Kristina. I was wondering how you were doing. :) You'll get there, just don't give up.

I got the bite years ago. I went to Girl Scout camp then I came home and the next day we went to Lake Tahoe for vacation. It was the day in between the Tahoe and Camp trip that I got the bite (or it showed up.) So I am talking about 2 different camps. Jin actually was the first one who said that she thought camp this past summer was where I could have gotten a bite. But the only reason I don't think that is because I was having symptoms before camp. Like I said earlier, I don't think camp triggered anything I, but I think because it was close in time to when school started (major stress) Jin thought it was camp. I think everything has been a major contributing factor. When I was hospitalized in June, that was a burden mentally because it started a whole new blanket of health problems with my back which we thought was under control. I think the biggest trigger was moving to New Zealand and coming back. It was a lot to deal with and that's when the complete exhaustion started and has only continued to get worse.

You've been through a lot. Can't wait for your update on the appointment today.

CarlaB Enthusiast
BioChem Whey Protein - powder

+dissolves easily in water

+neutral flavor

+highly processed (smaller protein structures)

-lots of bloating

*overall dread: medium-high

I used the vanilla flavored version of this (Morgan likes the chocolate). It's better if you use a hand blender to mix it. I also add frozen fruit to it ... this morning I had vanilla whey protein, mango, peaches, and blueberries. My "normal" version is to use frozen raspberries. It's really good this way. :) I look forward to it ... once Adam tasted it along with the piece of 'fudge' I eat with it, he no longer felt sorry for me, LOL. If we stay home for date night, he has some with me, otherwise he certainly doesn't need to do what I do to keep my weight up. :P

Anyway, it's delicious this way, I love it!

Carla,

I got the bite years ago. I went to Girl Scout camp then I came home and the next day we went to Lake Tahoe for vacation. It was the day in between the Tahoe and Camp trip that I got the bite (or it showed up.) So I am talking about 2 different camps. Jin actually was the first one who said that she thought camp this past summer was where I could have gotten a bite. But the only reason I don't think that is because I was having symptoms before camp. Like I said earlier, I don't think camp triggered anything I, but I think because it was close in time to when school started (major stress) Jin thought it was camp. I think everything has been a major contributing factor. When I was hospitalized in June, that was a burden mentally because it started a whole new blanket of health problems with my back which we thought was under control. I think the biggest trigger was moving to New Zealand and coming back. It was a lot to deal with and that's when the complete exhaustion started and has only continued to get worse.

Kassandra

Kassandra, interesting ... the first time I got sick from Lyme is after an exchange program in Mexico. If it started this summer, you are three years ahead of me in diagnosis (I was sick this time about four years before I got diagnosed) .... plus you are so much younger ... treatment won't be as hard or as long for you. You will be feeling great by the time you are going to college. :)

dlp252 Apprentice

Shoot, I had a post all done out with replies and comments on several posts and lost it...

Andrea, just wanted to add my concern about the blood!

Okay all, I'll "see" you when I get back!

jerseyangel Proficient

Bye Donna--see you soon :)

AndreaB Contributor

Everything is heading back to normal today. Getting back on the Pau d'Arco along with the Oil of Oregano and cranberry juice must have done the trick.

I've decided not to call the doctor since I'm doing better. The cranberry juice is sooooooooo bitter but I don't want to sweeten it. I mix the Oil with that so it's a very bitter concoction. :blink: If it makes me better I'll deal with it though.

Does dysbiosis cause any kind of reflux. Mitch has mild reflux, depending on what he eats it seems. Any thoughts?

Bye Donna! Have a great trip! We'll miss you and can't wait til you can come back and tell us about it. :wub:

Rachel--24 Collaborator

Mia,

I take ® Lipoic Acid...this is what my Dr. has me taking on my chelation days. I never looked into the difference between ALA and RLA.

This is what it says on the bottle...

Lipoic Acid is one of the most thoroughly researched and highly regarded antioxidants. R-Lipoic is the biologically active portion of the molecule, and provides maximum antioxidant activity at lower dosage levels.

So I take this on my DMSA days (every 3 days)....I'm only taking 1 capsule which is 50 mg. I have not had any problems with it. :)

If you can have that woman muscle test you for the dosage it should help to make sure you're not exceeding your tolerance. You can get nasty symptoms of redistribution if its more than you can tolerate.

The other thing is that if taken by itself it can possibly drag mercury into the brain. Its recommended that it be taken in conjunction with a chelator (DMPS or DMSA).

I dont take it by itself...I take it the same time as my DMSA.

I'm going in for my IV DMPS in a few hours. EEEEK.

Yeah...I'm scared a little. :ph34r:

I called awhile ago to ask if they can leave the vitamin C out. It sounds like they're gonna do that but they wanted to check with the Dr. first. They said I should be fine with just the glutathione and minerals. Hopefully the Dr. doesnt change his mind about me having the IV. I'm waiting for a call back.

Rachel--24 Collaborator

Carla....thats awesome about how well Chloe is doing!! :)

I'm so glad she got treated early and is showing so much improvement!

Be back later to respond to more posts. :)

melmak5 Contributor

Scratch everything I said. I just reacted to both baby formulas that were "safe."

I am running out of patience here.

confusedks Enthusiast

Update on my appt:

It turns out he didn't test me for Lyme. We are going to call and ask why because the appt. was 1.5 hours long, so we didn't think about it at the time. But, I did call Igenex and they are sending us the kit and the Dr. said he would be willing to test for it.

He said that because my iron total is high, but my ferritin is so low, he thinks my pituitary gland is not working properly. He even suggested some sort of tumor?! EEK! :huh: The problem is that the iron is in my body, but it's not being converted into ferritin. So his remedy for this is liver. I have to eat liver...EWWW! <_< But we are going to buy it today and I will try to choke it down. Yuck!

He wants to order an MRI of my brain to see my pituitary gland to make sure there is nothing really serious going on there. My gut feeling is that it's okay, but he seems to think something is very wrong.

He also said I have chronic mononucleosis and I have few white blood cells. Since the ratio of mono (viruses) to WBC's is 2:1, he wants to give me Vit. C IV's. He said that my WBC's don't have a chance of fighting away the viruses. My question is... WHY??? Why can't my body fight these? He says that the mono has been there ever since I moved to NZ in 2004. That is a long time, but I think that is when the Lyme may have been triggered.

He also said something about my liver not working well. I don't really remember the exact of what he had to say (brain fog!) but I don't think this was his main concern. He did say that since my Cholesterol and Triglycerides were so low a while ago, that something has turned for the worse because before they were telling me I wasn't eating enough fat and now I'm not eating a lot at all, but my body thinks I am.

We found out I am an A blood type, which is his reason for my stomach problems. He said that because I am not taking (pill) acid with my meals, the protein is going in my stomach and not breaking down, just fermenting. He told me to eat egg white powder with rice milk, etc. but not with fruit. Grr! It's going to taste gross, but oh well. Also, he said no protein with anything but veggies, so no carbs with protein. Since my stomach is very alkalized my body can't break down the carbs AND the protein together; they must be eaten separately. He gave me amino acids to take halfway through a meal to break protein down, we'll see if that helps.

Finally, I am extremely dehydrated. That's what the chloride number was about (if anyone say me labs that I posted.) So, he wants to give me liquid vitamins and minerals to put in water but we are waiting to make sure they are gluten-free before we but them. 3 liters of water a day! That's A LOT compared to what I have been drinking.

Overall, I am a little skeptical. I don't know if I believe that this is getting to the bottom of everything. Why isn't my body converting iron to ferritin? Is it too early to have Vitamin C IV's? Is my body going to be able to handle it? I just am concerned that we are not going to get to the bottom of everything. He didn't even mention anything about my back which is a HUGE part of my health problems. I don't know, am I expecting too much?

I look forward to hearing what everybody thinks.

Kassandra

AndreaB Contributor

Kassandra,

I really believe that lyme is behind what's going on with you. You need to get the Igenex test before you do anything, aside from diet changes (I personally wouldn't do the liver as livers can be high in toxins).

I believe Laura had had mono around your age or something similar. She also has lyme that had brought her down to a few foods she could eat before she found out what she had and started treatment. She just started treatment earlier this year and is doing pretty good now.

Igenex needs to be done, probably M-Th for you since you are in CA. It needs to be overnighted to the lab. I'd call Igenex and get the paperwork and take it in, just to make sure it goes to the right place. I don't trust the doctor to do that, especially if he doesn't normally use them. OOOPPSS Just reread your post and see that you called for the paperwork. :)

Meanwhile, head back over to lymenet and post a question about a doctor in CA who uses natural remedies since you are sensitive to abx.

How are you doing with the fires? I don't know how close you are to them but they sound like they've devastated alot down there.

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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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