Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

CarlaB Enthusiast
CarlaB
Posted

I was doing what you're doing back in 1991 ... looking into candida and amalgams ... it helped me put this Lyme in remission for about 12 years. So, even if there's another underlying cause, since you're not really sick, not to say you aren't sick at all, no matter what it is, taking care of metals and candida should help.

Even when I went on the anti-candida diet, I did not get yeast infections in the traditional sense.

Sugar is evil ...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
Rachel--24
Posted
  • Author
You are probably right about the metals, and the kids could have been exposed through you. What I wonder, though, is what pushes someone over the edge? So many people have amalgams and never get sick, then there are others who do. I know it can be because of Lyme, but I wonder what else can do it?

Carla,

A TON of things can do it. Its not always a matter of one thing pushing someone over the edge.....although it may seem that way.

Genetics plays a role in how well a person can detox. Also, environmental causes, chemicals/neurotoxins in food, mold, stress, etc.

As the mercury builds up over time it slows down the liver's ability to detox....when that starts happening the other things dont get detoxed as well and everthing just builds up inside....until the liver just cant handle the toxic burden. Food sensitivities and allergies are a good indicator that toxins are building up.

The amount of chemicals and harmful substances in our air, food and water have steadily increased over the years...this all has an affect on our health. When you add amalgams into the picture...plus thimersol....plus everday exposure to mercury (and other metals) in the environment and in household items....it makes it ALOT harder for the body to cope with the toxins.

I dont think its the amalgams by themselves....we are all exposed to plenty of harmful toxins everyday....the fact that mercury slows down the livers ability to detox makes it hard for the body to deal with the ever growing amount of chemicals and pollution.

Here is a short list of independent risk factors, which can either cause accumulation of metals in an otherwise healthy body
CarlaB Enthusiast
CarlaB
Posted
I just noticed you put up a new avatar. I like it. :)

The thing that clued me in is you and hubby were looking a big squished and blurry.

Thanks. It was time for something new. I changed my personal photo, too. I look like Rachel ... I have a hat on!! :P

Interesting stuff, Rachel. I have many things on that list.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Even when I went on the anti-candida diet, I did not get yeast infections in the traditional sense.

I dont have yeast infections in the "traditional sense" either. Even though I've got major fungal issues...I havent had a single yeast infection throughout my entire illness. :)

I think I've only had two yeast infections my entire life.

I think when the candida and fungal issues are high due to metals.....the yeasts are actually binding with mercury at the cells. Yeast can live off of the mercury...believe it or not...the yeast "eats" mercury. :o

You will not get rid of yeast w/out getting rid of the metals.

CarlaB Enthusiast
CarlaB
Posted

Well, Andrea, I counted my pills, you made me curious with all the emoticons you used! Including the two charcoal capsules I started taking today to help with the herx, I take 49 pills per day. Most are supplements and probiotics, 6 are Nystatin ... all are recommended by my doctor.

And, NO, I'm not going to figure out what all these pills cost per month!! I do know that back in 1991 I wouldn't have been able to afford to get better ... the trip to NY would have been cost prohibitive. I think I did take a lot of supplements back then though.

AndreaB Contributor
AndreaB
Posted
I copied the list below.

Here is a short list of independent risk factors, which can either cause accumulation of metals in an otherwise healthy body

AndreaB Contributor
AndreaB
Posted
Well, Andrea, I counted my pills, you made me curious with all the emoticons you used! Including the two charcoal capsules I started taking today to help with the herx, I take 49 pills per day. Most are supplements and probiotics, 6 are Nystatin ... all are recommended by my doctor.

I think I'd get tired of swallowing those every day. :):blink:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
I think I'd get tired of swallowing those every day. :):blink:

Trust me when I say I am! :wacko::wacko::wacko:

Not only do I not have an appetite because of the babesia and the medication side effects, but eating means I have to take pills. LOL

dlp252 Apprentice
dlp252
Posted
Cruise sounds GREAT! Health sounds even better though! ;)

Yep, that's what I ended up telling my friend today. :( Although she should know, lol. About a year ago I had to cancel a trip to Australia with her because of sickness...that was when I discovered my gluten/casein intolerance.

I could be wrong but with my amalgams (which I've had for over 20 years), the fluoridated water before our filter in the kitchen, hubby's massive shots in the military......just seems like that would be it.

Sure sounds like it could be it.

YEAH!! I agree.....nobody realizes it until its gone.

Stupid healthy people! :angry:

:lol::lol::lol:

Just kidding.....I couldnt resist that one. :P

:lol:

I haven't had a yeast infection for I don't know how long. I would think if it were candida that it would be worse but maybe that is becoming a problem.

Oddly, when I was a teenager I a couple of the traditional yeast infections...that was after I had all the fillings in...I had a couple in my 20s, especially after I got married (not married anymore, lol), but I haven't had it since my 20s.

Thanks. It was time for something new. I changed my personal photo, too. I look like Rachel ... I have a hat on!! :P

Love both new pictures!

You will not get rid of yeast w/out getting rid of the metals.

Yep, I'm sticking to the no sugar diet really well, but have decided NOT to do much to aggressively kill the yeast until I chelate...I've just been reading too much about this lately, lol.

Well, Andrea, I counted my pills, you made me curious with all the emoticons you used! Including the two charcoal capsules I started taking today to help with the herx, I take 49 pills per day. Most are supplements and probiotics, 6 are Nystatin ... all are recommended by my doctor.

Oh Sheesh!!! :lol: I thought it was bad when I was doing the H.Pylori thing...I was taking 27 pills per day, plus some sublingual stuff.

CarlaB Enthusiast
CarlaB
Posted
Love both new pictures!

Thank you. I was feeling rotten when the avatar one was taken. LOL

Oh Sheesh!!! :lol: I thought it was bad when I was doing the H.Pylori thing...I was taking 27 pills per day, plus some sublingual stuff.

It's amazing how it all adds up! There would be two more of another supplement if it didn't have barley.

diamondheart Newbie
diamondheart
Posted

Just a quick drive by here.

Laura, glad to hear you are starting treatment! Hope you feel better soon.

I take Therelac, too. Also ultraflora, and I'm starting on vsl#3, which I ordered online. It looks interesting. There was an article about it and gluten that was very interesting. They don't claim to cure celiac, but it does change the gliandin protein. Open Original Shared Link

I haven't counted my pills ... I think I take about 40.

Carla, I'm interested in all the probiotics you take. Do you notice a difference on all three versus one? I take the UltraFlora too. Isn't some of it redundant? I'm wondering if all the hype on vsl #3 is worth the cost? Those are some pretty expensive probiotics. I'm hoping the homemade kefir I am making will give me a boost in probiotics without the cost. I just switched over to goat's milk for my kefir. I don't know if you can have dairy?

Sugar is evil ...

I agree! I've decided to cut out sugar and alcohol for a while, at least until I get pregnant and have a baby. I've been doing ok, but I still have cravings for sugar that drive me insane (where is that crosseyed smilie face Rachel uses?). I think I need to concentrate on healing my adrenal glands. I know I don't get enough sleep, and spending my free time in the evening reading boards instead of sleeping or meditating is not helping! My new acupuncturist thinks I have symptoms consistent with adrenal fatique. Considering that Dr. F has me on a couple of different supplements for adrenal balanacing, I don't doubt her!

Stupid sugar :angry: !

Claire

CarlaB Enthusiast
CarlaB
Posted

Claire, I'm on some pretty serious antibiotics and when I added another one into the mix, I started having diarrhea. My doctor suggested starting the vsl#3. He also told me to take the other two and I have been since he told me to.

I didn't take just one since I've been on all the medications, so I don't know if there's a difference. But I do know that we have many bacterias, and these different probiotics are providing different bacterias. I also know that when I started them I had never in my life been as regular and healthy (if you know what I mean ;)) as I have been on them.

The vsl #3 has something like 450 billion instead of the usual 1 billion that a probiotic will have ... so I guess it's worth the money. I know for me it is, I'm doing everything I can to help my body deal with the drugs I'm on!!

I can have dairy, and I mix the vsl #3 with kifir.

I truly think anyone who has chronic illness has adrenal fatigue at some level. Getting sleep is essential, too! With Lyme, sleep is so important they say not to have any caffeine. If you get tired, you're supposed to nap -- how old fashioned is that? :lol: Plus, with Lyme there is no alcohol (makes most of us sick anyway) or sugar ... it feeds the bugs.

AndreaB Contributor
AndreaB
Posted
(where is that crosseyed smilie face Rachel uses?).

When you are replying you'll see the emoticons to the left. On top of that box it says Show All. It will then bring up a separate window with all of them.

Judyin Philly Enthusiast
Judyin Philly
Posted
Hi Judy! Anything new with YOUR testing?

THANKS DONNA

YES, NO SURPRISES..GLUTEN INTOLLERANT, DAILY, CASEIN, HAVE THE GENES TOO FORGET WHICH ONE. WILL ADD AFTER I FIND IT

THANKS FOR CARING

Judy...thanks!

Prayers and hugs right back at ya! :wub:

THANKS TOO RACHEL..

happygirl Collaborator
happygirl
Posted

x

Judyin Philly Enthusiast
Judyin Philly
Posted

HI LAURA

JUST SAW THIS AND KNOW YOU PROBABLY POSTED STILL NOT CAUGHT UP READING

HOW DID THE IV GO AS FAR AS AGREEING WITH YOU?

WERE YOU OK WITH IT

GOOD LUCK TOMORROW.

J

AndreaB Contributor
AndreaB
Posted
Still a little overwhelmed and unsure....

I'm sure I would be too.

Love and hugs. :wub:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Still a little overwhelmed and unsure....

I dont blame you....I'm overwhelmed, confused and very often I'm uncertain. :unsure:

Is it that you're unsure of the diagnosis?? Thats where I always start questioning everything. Its hard when you cant *see* something and everything seems unclear or hazy. I guess all we can do is start the treatment and see what happens.

How does your family feel about the diagnosis?

Good luck tomorrow with your 2nd IV. :)

diamondheart Newbie
diamondheart
Posted
Claire, I'm on some pretty serious antibiotics and when I added another one into the mix, I started having diarrhea. My doctor suggested starting the vsl#3. He also told me to take the other two and I have been since he told me to.

Oh yeah, I forgot about the antibiotics! That makes total sense then.

The vsl #3 has something like 450 billion instead of the usual 1 billion that a probiotic will have ... so I guess it's worth the money.

What I want to know is how do they count to 450 billion in one little capsule, LOL?! Carl Sagan would be proud.

Claire

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I saw Anna tonight...she was working on miasms. She said Candida is acting like a miasm.....that its really deep rooted. :(

We went through the pathogenic molds and yeasts again. Its the same ones that usually come up....Candida Tropicalis, Aspergillus Niger and some other ones.....I think I had like 3 different strains of Aspergillus coming up.

I was kind of brain fogged so not sure if I got everything right. She was saying our immune system's are kind of stupid. :lol::lol:

She said the immune system is actually really smart.....but then it has a sort of "linear" way of thinking. It sometimes misses the "bigger" picture. She said it tends to zero in on very specific antigens...or pathogens....but then misses alot because it is being too specific in whats its looking for.

In my case it seems to be missing the WHOLE freakin picture!! :huh:

I think my immune system is really in some serious need of guidance. :rolleyes:

Anyways, she was saying like with Candida....there is more than one strain but my immune system may only be focused on C. Albicans and not really recognizing other candida strains. Or it may see a "piece" of Candida and then not recognize it as it should and it may just let it go because it doesnt recognize that its candida. :rolleyes:

Or when the immune system sees Candida and its attached to mercury....it may get confused. Is it metal? Is it Candida? What should I do with this? :huh:

So she said it gets very confused and may just let it go....instead of getting rid of it.

Instead the candida/mercury may get carried off by white blood cells which may then "store" it into the brain or into other tissue because the immune system didnt know what to do with it.

So yeah...if my immune system is "storing" candida and other bad things because it doesnt want the stuff floating around....I'd say my immune system is pretty stupid. <_<

I *think* this is what Anna was saying. :unsure:

I think she is trying to get my immune system to recognize these things.....*ALL* of them.....so that my immune system will start getting rid of them. She wants my immune system to see that they do not BELONG....so that they can start getting excreted.

She started me on some kind of miasm detox....but she started me really low. I never get to start anything at a normal dose. I think I just take 2 drops a day. I noticed it has sulfur which kind of scares me but I started taking it tonight and I didnt notice any reaction.

I read that with NDF no sulfur foods (onions, garlic, broccoli, eggs, etc) should be eaten until after the second urination after taking NDF. I think this might be why I got so sick on Saturday. I ate all that veggie soup before I ever even excreted anything from my dose of NDF.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Found this on an Mercury/Autism site....

Q: My child is Gluten-free Casein-free. Can I continue the diet?

If it makes your child feel better, then by all means continue. Bernie Windham has written a paper that describes how mercury interferes with the enzyme that is needed to digest gluten and casein. Many people who are mercury toxic are sensitive to food that are high in sulfur, which includes all dairy products.

Regarding yeast: Mercury causes damage to the immune system, and a weakened immune system allows yeast, bacteria and and all sorts of other nasties to proliferate in the body. Yeast overgrowth can cause "leaky gut"

AndreaB Contributor
AndreaB
Posted

Rachel,

Reading right along.

Don't have much to say. I'm going through another hurt phase. Tracked down insurance today, very small policy according to mom but left to his wife. I don't really have a problem with that, I just told mom it would have been nice to get something no matter how small. He was going to give us the rest of his retirement check but again according to my mom that needs to be returned to the state. Talked to his wife yesterday. That's how I found out about the retirement check as she wanted me to let mom know to divide between my brother and I.

Then she told me it could be 2 years before they come up this way. We were told it would be this summer and I told her we want to go down to the coast for that but I have to wonder if we'll know about that. Time will tell I guess.

Such a big change from the weekend. I was so up. Don't worry, this won't keep me down long. :)

NoGluGirl Contributor
NoGluGirl
Posted

Dear Rachel and Carla,

Will do with the posts! No prob! I hate healthy people, too. They whine and cry about stupid things. Boohoo I broke a nail! They should be grateful they do not feel like their arm is going to fall off! :)

Dear Laura,

Good luck with that IV! We are all pulling for you in Rachelville! Wow, it sure was something that diagnosis of yours. You never hear about RMSF these days. Why don't they talk about it more? You have to wonder.

Dear Claire,

Sugar is so addictive! I don't know when I will get off of it. You get withdrawal. It drives you crazy! I have reduced my intake of caffeine and sugar at least. I am still having heart palpitations, though.

Dear Lyme Sufferers,

Do you guys get ringing in your ears? I get it twice a day sometimes. It is so annoying! It is like having the freakin' Emergency Broadcasting System in your ear! There are times you just cannot stand it!

Sincerely,

NoGluGirl

miamia Rookie
miamia
Posted
Trust me when I say I am! :wacko::wacko::wacko:

Not only do I not have an appetite because of the babesia and the medication side effects, but eating means I have to take pills. LOL

carla

I totaly know how you feel I have no appetitie to begin with and then by the time I take all my supplements eating juwst becomes painful for me!! SO frutrating

CarlaB Enthusiast
CarlaB
Posted
What I want to know is how do they count to 450 billion in one little capsule, LOL?! Carl Sagan would be proud.

I think they have a bunch of savants do it!! :lol::lol: Actually, it's a powder that you mix with a drink. I put it in kifir ... I can't have sugar, the probiotic is lemon flavored, so I use it as flavoring for my plain kifir.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748
    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.