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Omg...i Might Be On To Something

Rachel--24

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diamondheart Newbie
diamondheart
Posted
HI guys.

I just want to cry. My mom and dad are forcing me to do DMSA chelation while I still have my fillings in. My friends and everyone also. They dont understand that it will hurt me. My dad said no more doctors and that I better take the 133 dollar pills he bought.

I can't stop crying. I need a knowledgable doctor but no health insurance and no money from dad no more. He won't help. They believe in this doctor so much. I might as well take it just to show them how it is going to hurt me.

I don't know what else to do. I would not have gone to the doctor. BUt I thought he was only going to give me IV not DMSA. I am getting worse.

I am in a nightmare.

lisa

Hi Lisa,

It sounds like you know what the right thing to do it is. Trust your intuition! Maybe you can say, yes, I will agree to do the DMSA chelation AFTER I get my fillings removed. I wouldn't take the DMSA just to show them how much it will hurt you because you are the one who pays the price. Your body can not handle more toxicity at this point.

Do whatever you can to convince your parents that taking DMSA before your fillings are out will just make you more mercury toxic. Print off what you can find off the internet if you can do that. Or get a second opinion from another doctor who really understands chelation.

I think Rachel gave you some good advice having been there before herself.

I'm so sorry this is a difficult situation for you. Maybe once your parents have calmed down, you can reason with them. Give it some space. I know you are feeling ill and need help now, but you won't be able to reason with them if they are upset.

Claire

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diamondheart Newbie
diamondheart
Posted
Claire, well, maybe he's right, maybe something else needs to be done ... I'd want to talk to him about it.

Thanks Carla. We talked about all the options yesterday. I wasn't prepared for him to say yesterday, "Well, let's numb you up and re-do the filling"! I was hoping he could just add more composite, but he didn't seem to think that was the answer.

I was worried that I'd have the same problems on the other side of my mouth, but so far so good. My first priority was to get all the amalgam out. I'll wait till I get back from my trip and then deal with the first tooth he did. I can chew on the other side for now. I think I will schedule an appointment for when I return. Or, I'll just see another dentist.

Has anyone here done the blood tests that checks your compatibility with the different dental materials? I had my materials muscle tested, but I'm wondering if I should back that test up with something more concrete?

Claire

CarlaB Enthusiast
CarlaB
Posted

Lisa, I don't know what to suggest. I'm sorry things are so tough for you right now. I think it's a good suggestion to be getting the nutritional support you need along with the chelation.

Is this the doctor who understands mercury removal? If not, I would call her for a second opinion on the chelation. Have your dad talk to her ... since he's paying the bill, he should really hear what she has to say.

Donna, I'm glad you enjoyed your massage. :)

Claire, is the filling just sensitive to heat and cold? Or does it hurt all the time? Is is a big filling? The one of mine that hurt for months was a very large filling and it was only hot/cold that affected it ... cold could even be room temperature water. Eventually the sensitivity went away.

diamondheart Newbie
diamondheart
Posted
Claire, is the filling just sensitive to heat and cold? Or does it hurt all the time? Is is a big filling? The one of mine that hurt for months was a very large filling and it was only hot/cold that affected it ... cold could even be room temperature water. Eventually the sensitivity went away.

Hi Carla, it's a medium sized filling, but it feels deep to me :huh:. It only hurts when I chew on top of it or put any kind of pressure on it, like brushing. It's not sensitive anymore to heat and cold, though it was in the beginning. I'm going to give it another 3 weeks before I decide to do anything. Thanks for asking :) .

Claire

NoGluGirl Contributor
NoGluGirl
Posted

Dear Mia,

Do not worry about not posting! Just rest, and take it easy! We do not want you to exhaust yourself. You know your limits! As everyone else said, we will be here when you decide to post! :)

I am sorry your reaction is doing you in. :( Those are always miserable. It feels like they will never end! I have had a bad three days in a row. I am not sure what is causing it.

The lack of money makes everything more difficult. Affording medical care is impossible it seems. I wish I had money. Everyone who has it is incredibly lucky. They do not know what it is like struggling like we all often do.

Dear tom,

In case you did not know, the female troubles thing is something you better get used to. You said you want to get married? If you get married, you will be forced to buy tampons! It is scary, but true! :lol: I cannot figure out why men love talking about their woohas, but are terrified of tampons! WTH?

ROTFLMAO about the banana peel! :lol: I never tried it, since I cannot smoke anything in general. My drug of choice is coffee, I suppose. Sugar is probably in there as well. Technically, it is highly addictive. I am working on getting off of that, though. I am doing a lot better than I was.

I have not tried millet yet. Some people really like it, others do not. Quinoa makes me nervous as well, since I have never tried it. I agree that it is often what you cook something with, not necessarily the food itself that has flavor. Anything is disgusting to me that is bland.

Dear Donna,

That massage sounded heavenly! B) It is amazing how much it helped your neck! Who knows? Maybe you will be able to afford more of them now that you are done with BioSet. Taking off work once in a while would not be a bad idea to help recharge your batteries.

The cookies might have caused the D. Too much of anything seems to cause it. I have to be careful not to overdo things, either. Sometimes I get sick from a small amount of things now. Here lately, nothing seems to set well.

Dear covsooze,

Your son said such a cute thing! Even he seems to understand how important healthy food is! You must have taught him well! I would not mind being put in jail with chocolate, though. That is not a very good punishment. Unless of course, it is in a safe you cannot get into! This would be an example of cruel and unusual punishment.

Hair analysis is a worthwhile pursuit for some people. It depends on whether you are excreting the metals or not, too. When you cannot detox, things do not show up in the hair shaft, because it is not leaving the body. This is what happened to a few people on this thread. I am not sure if I want to do the hair or not, because I know the other test would be more accurate if I cannot remove the toxins.

Dear Rachel,

Thank you for the hair analysis information! I am not sure whether I should do it or not. It was quite inexpensive. However, I am not sure if I would be excreting anything or not. You cannot always tell that by some of these tests.

Dear Claire,

I am glad your teeth are alright for the most part. That is terrible that one tooth was just filed to oblivion. How ridiculous is that? A lot of people have fuzzy logic. I cannot believe you had a piece of the dental dam in your mouth! :o

Dear Lisa,

I am like you. I am stuck and have no choice. My parents are idiots and I have to pay for it.

They refuse to believe my doctor's word for it that I have Celiac! I have been sick a lot from cc.

Why would they care? It is not their body being poisoned. A friend of mine suggested I contact a social worker. I am thinking about it. If it can get me out of here, it is worth pursuing. I am tired of all of the crap from everyone.

Dear Andrea,

How are the children doing? I know you are probably nervous about the boys and how they will do on the LED. Any mother would be. Maybe they will not be so drained like T. The individual system really does play a major role in this.

Dear Patti,

How are you doing? Did you finish your antibiotics? Are you doing better? I know they are hard on your stomach. I know I have yet to recover from the Flagyl.

Dear Christine,

I love your new avatar! You look great in your pic! Hopefully, your situation will be fixed soon. I never tried the Nuva Ring. I am on Depo. Maybe you will feel better once you are using it again.

Dear Carla,

Congratulations on that property! I am glad your husband will be close-by more often now. Fall is not too long from now! In fact, I think we will have an early fall this year. The sun has been setting earlier already.

Sincerely,

Jin

P.S. Does anyone know where Bev and Susie are?

AndreaB Contributor
AndreaB
Posted
How are the children doing? I know you are probably nervous about the boys and how they will do on the LED. Any mother would be. Maybe they will not be so drained like T. The individual system really does play a major role in this.

I'm more concerned about Seth since he can't tell me how he feels. It seems the sulfa group is a hard one and I'm expecting some discomfort and tiredness from it for them. Talitha will probably be having the fungal toxins done.

She has been awful about her water lately so I don't know how that's going to go. We aren't too happy with her right now. I told my husband you can lead a horse to water but you can't make him drink. His reply.....she's not a horse.

P.S. Does anyone know where Bev and Susie are?

Bev has been posting on D/S. She's going through a rough time. I think Susan has been posting on the Funny Pages thread.

I do hope you can get out of the house somehow soon. It'd be nice if your folks could get you the western blots though.

NoGluGirl Contributor
NoGluGirl
Posted

Dear Andrea,

I could see why you would worry more about Seth. It is not easy to figure out what hurts them when they are like he is. Hopefully, the boys will not get such severe fatigue. That is always difficult to deal with. Sleepy kids are cranky kids.

T is probably having a difficult time. Of course, not as difficult as you! This type of thing wears you out. It is nearly impossible to feel good about a situation when you feel stuck.

You can only do the best you can do!

Thanks for the update on Bev and Susie. I wondered where they went! It was like they just disappeared. It was terrible. I miss their posts. What is going on with Bev?

I wish I could get those Western Blots. I hate being so sick. I wonder if that is what is really causing this. The stomach problems are not tolerable. Sherry said she takes Licorice root for the nausea. I need something that does not make me so drowsy. The Phenergan makes me so drowsy!

Sincerely,

Jin

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covsooze Enthusiast
covsooze
Posted
I am not sure if I want to do the hair or not, because I know the other test would be more accurate if I cannot remove the toxins.

Hi Jin

Forgive me, I'm very new to all this talk of toxicity, but what is 'the other test'? Unfortunately, the health system is very different here in the UK, so although we get 'free' healthcare on the NHS, that doesn't include anything that's even vaguely alternative, so I would have to pay for any tests or treatments that have been discussed on this thread, and right now, that's not possible.

Hi Lisa

I don't know much, if anything about chelation, so i can't give you any advice, but I just wanted you to know that i'm thinking of you. Rachel's right about your parents, I'm sure, even though they maybe wrong with what they're saying you need to do, they'll be saying it coz they love you so much. I'm praying that that love will help them to realise that you're right.

Susie x

miamia Rookie
miamia
Posted

Donna-

you are so weet for thinking of me . It really means alot!!! (alot) I am so glad you enjoyed your massage and if my vote counts i think a good massage is a perfectly legitamate reason for taking off from work.

Yesturday i had an IV of minerals and one one of glutathione. I felt so bad when i went in that it was hard to judge my reaction to it. I felt so sick i cried the whole time almost the nurse their is a very tough women and she was trying to convince me to stop i told her i never cry so when ever i feel like i can i have to just do it. I am way to optimisitc a person and every time i get sad at all i have this stupid happy voice in my head that makes it impossible for me to stay this way- although i think this is overall a good thing sometimes its annoying becuase i know that there is a part of me that is sad and i feel like she needs to let it out and the stupid happy voice is stiffling her!!!!

happygirl Collaborator
happygirl
Posted

LOVE YOU MIA----------THINKING ABOUT YOU.

CarlaB Enthusiast
CarlaB
Posted
P.S. Does anyone know where Bev and Susie are?

They're both on the funny pages ... Bev was MIA for a couple days and mentioned feeling bad once she came back.

Mia, you are so cute ... I don't think the happy voice is all that stupid, just a little more overbearing. :) Don't let the happy voice make the sad voice box it up ... you'll just have to deal with it all at a later date ... that's a defense mechanism I'm guilty of ... but not anymore. B)

christine 25 Newbie
christine 25
Posted
I used hair analysis...mercury showed up very low in the results. Most of the metals were low. Cadmium and Bismuth were high.

The mercury was stored in my body and not getting excreted . Even though the metals were low my minerals were all out of balance.

When that happens it may indicate mercury toxicity. Someone can be extremely toxic yet have low levles showing up in the hair analysis....but in most cases the minerals would be out of range.

In my case it was the minerals which showed there was a problem.

Rachel,

Which lab did your hair analysis?

I was reading on line, mercola, and other people say that its hard to find a good lab, because most of them wash the hair with detergents and chemicals, and it can effect the results.

Do I need a doctor to order them? THe analysis can vary from lab to lab, ive heard, so im thinking of not wasting my money.

DId anyone have luck, or feel the results they got helped? El expensivo! $$ and me es el broko.

THANKS

AndreaB Contributor
AndreaB
Posted

Hope today's going better for you Mia.

Tell you happy voice that it's ok to cry.

Love and hugs.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
LOVE YOU MIA----------THINKING ABOUT YOU.

I'll second what she said!

Love you Mia and YES...let the tears flow if need be. :)

Hope you are recovering from the bad food incident. I'll be sending some good vibes you way. :wub:

AndreaB Contributor
AndreaB
Posted

Well, I've decided to get my root canal tooth pulled. I'll be having it taken care of next month. I just don't want to sit on this thing another year.

Some old friends (from where we moved from 3 years ago) stopped by and I was talking to them about the dental stuff. She sees someone in Seattle who removes amalgams safely. He's more expensive than the guy over in Spokane but I've got to face reality that I can't drive 12 hours in one day. Hubby wanted me to check out flying over there and renting a car but that would negate most of the savings anyway.

We plan on making this dentist in Seattle our family dentist. Still a long drive but worth it to see the right dentist. I'll also be having an exam so I can know exactly what needs to be done and how much it will cost. I'm suspecting I won't be able to take care of the crowns I had done a few years ago for a while but we'll see.

I've told Dr. E we have so much money to work with and once it's out the children will have to stop their treatments. I just hope it won't throw things off too much to have a couple year break in treatment if they haven't completed it by the time we run out of funds.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I'm more concerned about Seth since he can't tell me how he feels. It seems the sulfa group is a hard one and I'm expecting some discomfort and tiredness from it for them. Talitha will probably be having the fungal toxins done.

I'm having the sulfa group done in 2 days. Its already here...my first LED is only 2 days away. :D

My mom must have read your post from the other day cuz now shes gonna drive me.

The girl told me that I'll most likely be tired but she also said that during the 25 hour detox period I should be going outside and just taking a walk....drinking all my water, etc.

Yeah...I agree with Mitch...Talitha is not a horse. :lol:

Hopefully you can find a way to get her to drink the water. What about a reward for her if she drinks it all?

I'm worried about bm's. They said its critical that I'm having at least 2 bm's through this detox period.

I dont know how I'm gonna do that. :unsure:

He would rather me be going on my own than having to bother with the enemas. He said the magnesium and Vit C. will regulate my bowels. I have to increase until I'm having loose stools a couple times a day. Today I'm at 3 capsules each (taken together).

Does anyone know if this should be enough? Heck...so far its not working. Yesterday I had one bm and it was definately not loose. I'm still more on the "C" side of things. :(

I was happy to at least be having daily bm's on my own but this is not good enough once I start LED.

The Dr. said I'm totally depleted of magnesium and Vit. C...my body needs it real bad. He wants me taking these and at the same time its supposed to keep my bowels moving. He said we'll be killing 2 birds with one stone by taking the mag. and vit. C.

I think he also mentioned water...that along with my water intake these will keep my bowels moving. Hmmm....maybe I'm not drinking enough water? <_<

Donna....the massage sounds AWESOME!!

Sheeeesh.....one of these day I'm gonna pick up the phone and schedule for one of these heavenly treatments.....hot rocks and all. :P

AndreaB Contributor
AndreaB
Posted
I'm having the sulfa group done in 2 days. Its already here...my first LED is only 2 days away. :D

My mom must have read your post from the other day cuz now shes gonna drive me.

The girl told me that I'll most likely be tired but she also said that during the 25 hour detox period I should be going outside and just taking a walk....drinking all my water, etc.

I'm glad your mom is taking you. I know you aren't Talitha but she couldn't walk real well right after her treatment. I'd hate to see you try to drive if it affects you in any way.

As far as the Vit C....I don't know. I've just been giving Talitha 500 mg. She says she's going twice a day. Micah and Seth don't have a problem there.....at least not usually.

If your body is that depleted it may take some time to build up to where the extra will make a difference. I assume you're handling it ok?

Is your appointment in the afternoon? I assume so, so that means we won't see you until Saturday evening.

covsooze Enthusiast
covsooze
Posted

Rachel, I seem to remember reading that once you're taking the amount of vit c your body needs, that's when you'll start getting the loose bms, so maybe it does indicate that you need the vit c a lot. Also, do try and drink a lot of water (2 litres at least). Can you tolerate anythign like figs or sharon fruit, coz they'd help :P How much is in each of the capsules?

I bought some vit c yesterday and once I'd opened it (but not taken any) I realised it didn't say gluten free on it, as the other vits in that range do. Neither does it say that it has gluten in it. What it does say is dextrose (from wheat). I thought that was ok for coeliacs. Am I wrong?

Christine - we've just sent off our hair for analysis to a UK lab called Foresight (they specialise in advice re conception). It wasn't hugely expensive (otherwise we couldn't have done it). I'll let you know how we go with the results & their interpretation. Foresight actually have their expert interpret them for you, but a lot of labs just give you the results and you have to get a dr to give the advice, wqhich would obviously make it more expensive.

Susie x

dlp252 Apprentice
dlp252
Posted

Hum, Susie, I don't know if I'd take the dextrose from wheat...sounds iffy to me. :P

Donna....the massage sounds AWESOME!!

Sheeeesh.....one of these day I'm gonna pick up the phone and schedule for one of these heavenly treatments.....hot rocks and all.

Yes, the PT guy is at HN and he told me yesterday that he's thinking of doing the hot stone treatments (I had mine at the place in Willow Glen)...he's going to see if HN will buy the stuff, lol.

Re the Vitamin C. I am taking 2.5+ grams a day of ascorbic acid powder and about 500 mg of magnesium capsules plus some extra in the multiple vitamin I take.

tom Contributor
tom
Posted
What it does say is dextrose (from wheat). I thought that was ok for coeliacs. Am I wrong?

I say don't take it. Many stores here even accept returns of opened and partly used pills.

There's NO way I would take it, and I wouldn't even knowingly TOUCH one of the pills!!!!! :ph34r:

(Hmmmm is there anything else I'm admittedly wildly irrational about? I think not) :wacko:

Lisa & Mia!!!!! Get better soon!!

Lisa, I have NO idea what I would do in your situation. :( but I do wish u don't resort to making yourself sicker to prove something to people who *still* may not understand.

jerseyangel Proficient
jerseyangel
Posted

Hi Susie,

I wouldn't take the vitamin with the wheat dextrose, either. :)

AndreaB Contributor
AndreaB
Posted
Hi Susie,

I wouldn't take the vitamin with the wheat dextrose, either. :)

Ditto.

UR Groovy Explorer
UR Groovy
Posted

Hi

I've been reading along, but if I were to reply to everything I wanted to, I'd be here all day, so please forgive me for my self-indulgence.

CHLORELLA: I've been taking the Chlorella for a couple days without any problems so far. I didn't see any in liquid form that didn't have grasses in addition to the chlorella, so I just went with the capsules. It'll have to do for now.

QUIT DATE: Tomorrow is the day. I'm looking forward to whatever it's going to take to be a non-smoker. In preparation for this, I've been not too lazy. Interestingly enough, I've been having normal bm's - like when I first 86'd the gluten. Maybe it's the probiotics (which I have been taking every day). I went a day with no coffee Monday and no ill effects - no headaches, nothing like that. I've been walking every day and have a list a mile long of little and big things to keep me (us) busy. Seaworld, beach walks, got my new Ipod hooked up (loaded lots of Primus - Ah, Primus), tasks around here, romantic dinner Friday night, etc.

HOPE: I think that, in addition to the probiotics, something that may be improving my situation is that I have hope. I think that hope is highly under-rated. I believe that things will get better and I believe that the faith that many of you have (faith that you will get better) has pushed me in that direction and I want to again say Thank You.

Have great days everyone.

tom Contributor
tom
Posted
Dear tom,

In case you did not know, the female troubles thing is something you better get used to. You said you want to get married? If you get married, you will be forced to buy tampons! It is scary, but true! :lol: I cannot figure out why men love talking about their woohas, but are terrified of tampons! WTH?

ROFL "woohas"???!! :lol: (btw there are many things many guys do that I do not)

And GOODGOLLYMISSMOLLY who said anything about *married*!!?? I'm ready for a girlfriend!!! The "toothbrushes but not a *lot* of clothes at each other's place" kind. ;)

Don't be too surprised that the 1st time I bought fem hygiene products was in the mid-80s. :P

(Some comedian had a funny bit about what the tampon-buying guy says to the playboy-buying guy. Alas - it escapes me)

I would not mind being put in jail with chocolate, though. That is not a very good punishment. Unless of course, it is in a safe you cannot get into! This would be an example of cruel and unusual punishment.

:lol::lol::lol:

AndreaB Contributor
AndreaB
Posted

Kat,

Thanks for the check in. Sounds like you have everything under control etc.

Hope is very important. :D

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    • trents
      how much gluten do I need to eat before blood tests?

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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
      Accuracy of testing concerns

      By trents · Posted

      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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