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

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
:( Me too, one way or another it has been years and these days if I get a moment or hour of a relatively pain free body I dance around the house. <_< It has become the norm.

I am at the point where I would be grateful for any kind of diagnosis that could lead to treatment, Lyme doesn't scare me anymore, and given my history I will be surprised not to receive a Lyme diagnosis, not knowing is making me feel crazy. :(

Rinne...how much longer until you get tested?? I soooo hope this is the answer for you. I feel like I can say that even though we're talking about Lyme Disease...I know exactly how you feel and you DO get to the point where nothing scares you anymore. To me the most terrifying thing in the world is never finding out a cause for all of this...Lyme is nothing in comparison to the fear of the "unknown".

I was just telling someone yesterday...before I went to my appt....I was saying that all my life I had a fear of fires. My biggest fear was getting trapped in a fire....not even THAT scares me anymore. I think I've already been to hell with this and nothing scares me anymore because of that.

I dance around the house on my good days too...I may not ever feel totally normal in the past 4 years but I definately have hours where I'm feeling great in comparison to what I've gotten used to feeling. I go back and forth....some days I have the radio blasting in my car, window down, happily singing along. Other days I'm more zombie like...no singing....feeling really drained...but for me the radio is always blasting...even if I'm "barely there". :rolleyes:

Have you been tested for parasites before?? You could very well have them...we get more vulnerable to parasites when our immune system is down...so it could definately be that the salt/vit C is ridding your body of them. I dont really know though. :unsure:

I have the blurry eye problem too....it seems like the more toxic I am the blurrier they get. Even exposure to perfumes can cause some temporary blurriness....I experience it daily at work. :(

I just wanted to say that my eyes welled up with tears, seeing that you potentially have SOME answers. I know its not a great answer, but at this point, as you know, an answer is an answer. I can't tell you how happy I am for you...this gives me hope that you will get better.

Thank you Laura....you're very sweet. :)

Its funny but the truth is...I am happy today...really happy. Even the people at work who are all perfectly healthy must have some inkling to how hard this has been for me. They were all sooo excited for me. Not a single person was acting as if it was a BAD thing to have Lymes Disease! :blink: I was thinking that only those of us who are experiencing this can possibly relate to the feeling of needing an answer....no matter what the answer may be. Apparantly even those who are healthy can understand how terrible it can be to not know whats making you sick and to have to wonder each day if the answer will ever come. I could just see how excited everyone was for me and it just made me feel even better about things. :)

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
lindalee Enthusiast
lindalee
Posted
I agree that if we are really ill that detoxing must be done carefully. I've read that cilantro oil is used to pull mercury from the body but that it is important to take chlorella with that so that the chlorella takes the mercury out of your body and it is not reabsorbed through a leaky gut. I'm seeking professional help with this, I've become very wary of health food store remedies and my own ability to figure it out.

Is is cracked chlorella? I haven't bought any yet.

rinne Apprentice
rinne
Posted

Sorry, I haven't heard of cracked chlorella but if you find out more I would be interested in knowing. :)

Rachel, I am glad for your happiness. My tests are next week so I am thinking possibly three weeks until some results from them but I also keep reminding myself that Lyme is a clinical diagnosis and the tests may not show it. It's Limbo Land. :(

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, I am glad for your happiness. My tests are next week so I am thinking possibly three weeks until some results from them but I also keep reminding myself that Lyme is a clinical diagnosis and the tests may not show it. It's Limbo Land. :(

Yeah...the tests might not pick it up but then again...you could get an even more positive result then what I had. Also Igenix has that other test they've developed....I would think you'd be getting results back from that too. My results for that test were positive. I'm gonna keep my fingers crossed for you Rinne.

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

I tried adding in Vitamin C last night and got a reaction. I was pretty sure it was gonna happen because before I took it I noticed it had Rosehips in it. Last time I took vit. c w/ rosehips I got alot worse....it was more than a year ago though. Since it had been so long I thought I'd go ahead and try it. I reacted almost immediately....burning sensations mainly on my face and also my eyes. I was really feeling it and after awhile I started wanting ice cream really bad...I felt like it would help and sure enough it killed the reaction. :o

I had previously thought the problem with rosehips was salicylates....its extremely high in salicylates and should be avoided in all supplements if intolerant to salicylates. I'm almost positive thats what caused the reaction. I have to find some Vit. C. that doesnt have anything else in it. I think this is one of the reasons I have so much trouble with supplements....they all have herbs and those are all really really high in salicylates.

The salicylate intolerance is specifically mentioned in my mercury toxicity book.....its because of mercury interfering with the enzymes. I dont know if Lyme alone can cause this problem so I'm thinking its good that the Dr. is gonna find out if mercury is an issue along with Lyme.

I dont know how I'll get better if I cant take any supplements because of things like salicylates, sulfites and glutamates. This would all be coming from enzyme dysfunction. :(

I'm gonna call the Dr. about it.

miamia Rookie
miamia
Posted
I tried adding in Vitamin C last night and got a reaction. I was pretty sure it was gonna happen because before I took it I noticed it had Rosehips in it. Last time I took vit. c w/ rosehips I got alot worse....it was more than a year ago though. Since it had been so long I thought I'd go ahead and try it. I reacted almost immediately....burning sensations mainly on my face and also my eyes. I was really feeling it and after awhile I started wanting ice cream really bad...I felt like it would help and sure enough it killed the reaction. :o

I had previously thought the problem with rosehips was salicylates....its extremely high in salicylates and should be avoided in all supplements if intolerant to salicylates. I'm almost positive thats what caused the reaction. I have to find some Vit. C. that doesnt have anything else in it. I think this is one of the reasons I have so much trouble with supplements....they all have herbs and those are all really really high in salicylates.

The salicylate intolerance is specifically mentioned in my mercury toxicity book.....its because of mercury interfering with the enzymes. I dont know if Lyme alone can cause this problem so I'm thinking its good that the Dr. is gonna find out if mercury is an issue along with Lyme.

I dont know how I'll get better if I cant take any supplements because of things like salicylates, sulfites and glutamates. This would all be coming from enzyme dysfunction. :(

I'm gonna call the Dr. about it.

Rachel-

this is one of my biggest problems I cannot seem to tolerate any of the supplements or meds that are supposed to help me heal. Even the most benign things seem to bother me. I ahve found a few things I can toleerate and I take them everyday but they don't seem to be enough to do that much. I also can't handle vitamin c even in the purest forms. It stinks becaus eit has alot of beneficial properties and is supposedly helpful if you are having a reaction to food or something else.

Thank you so much for your encouragment in your other post.

Miamia

happygirl Collaborator
happygirl
Posted

x

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi miamia--nice to see you! I don't take suppliments anymore, because I've yet to find one that won't cause a reaction. They seem ok for a few days, then the old symptoms come right back. I've tried so many--stating that they're free of every possible allergen--but it make no difference. So, I've just stopped trying them!

Rinne--I'll be keeping my fingers crossed for you, too. :) You've also spent more than enough time in 'limbo land'. (and I got the name right! :ph34r: )

Rachel--what the heck was I going to say??? Oh yea, I think it's quite possible that the first bite you got--the one with the strange mark--could have been the one that started this. I'd also be interested in what your doctor says about the suppliment issue. I've asked mine--no clue. Just the deer in the headlight look <_<

Laura--Get some rest today :)

dlp252 Apprentice
dlp252
Posted

Good morning to everyone!

Rachel, I'm so glad to hear the change (yes I can hear it, lol) in your posts...you definitely seem VERY happy and excited!

Laura, so sorry you weren't feeling well yesterday!

***

Supplements...it's funny about supplements, I seem to be able to take some of them okay, until I stop for some reason...then I can't take those anymore. What I mean is, that I react to a lot of supplements right off the bat, but sometimes I come across one that doesn't seem to bother me, so I'll take it regularly for a while...if I have to stop taking it for any length of time...for instance when I was taking my Vit C I had to stop taking it a couple of weeks ahead of my surgery in January...then start taking it again, it causes me to react. What the heck is up with that, lol!? :P It happens on all kinds of supplements.

happygirl Collaborator
happygirl
Posted

x

jerseyangel Proficient
jerseyangel
Posted

Keeping my fingers and toes crossed for you! :D

happygirl Collaborator
happygirl
Posted

x

jerseyangel Proficient
jerseyangel
Posted

Oh Laura :( you poor thing. First a big *hug* for you! :) It must be so difficult for you right now with everything that is happening--and you're all alone there. I wish I lived closer--I'd come over, make you some tea and help you unpack (I'm very good at unpacking--I've had a lot of practice :D )

Yes, you will find an answer to all of this. Quite possibly, this new doctor will be able to listen and give you recommendations--I hope so :) Also, remember, you are a smart, capable woman and you will figure this out. I know it ;)

DingoGirl Enthusiast
DingoGirl
Posted

Such hope and encouragement in OMG today.....looks like light at the end of the tunnel! :)

Just a drive-by....wanted to send a big hug to Laura...hang in there, sweetie, and I am definitely thinking you ARE going to get into the dr. at Johns Hopkins.....that will be great....but no more unpacking today and plenty of rest! Hope you feel better soon.

:)

rinne Apprentice
rinne
Posted

Laura, I am sorry you are having to struggle with so much right now. I hope that you can find the answers and treatment for your illness.

These days I see Lyme everywhere. :)

I knew whatever this was it was taking everything from me....sucking the life out of me....I would think about how my life was before this happened. I would focus on getting that back...every single time I thought of giving up I would think about all I'd lost and about how badly I wanted it back. The only way I could get my life back was if I found out why this happened...thats why I've been sitting in front of this computer...endlessly searching for the past 2 years. Who knows...maybe this isnt the end for me yet...hopefully it is but if not....its definately given me a whole lot of HOPE.

Rachel, I told a friend recently that I felt like the "life was being sucked out of me". Unfortunately she suggested that I was over reacting. :huh: There are days when I simply want to lie down and give up, I think life hurts too much and I am tired, sad, in too much pain and don't have the strength to keep trying. Given that I am teary now this just might be one of those days. :ph34r::lol: Maybe not. :) Then I drag myself up and try to do something that will make me feel better, this morning I went off to yoga and that helped.

Now it is time to put some Ruthie Foster on the stereo and do a little dance, maybe if I dance the "happy" will arrive.

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

I hope one day to post like you are (having an answer).

Something that made me think (and I don't know your full history, but I know you have cut out a ton of foods, so I'm sorry if its not applicable) is that a lot of vitamins are corn derived (I know vitamin E is one of them, among others.) So if corn is a problem for you, that might be why you are having trouble with certain supplements. Hope this helps a bit.

I was horribly sick yesterday and last night...just rolling out of bed. I've been ordered by my mom and husband to stop unpacking and spend the day trying to find a doctor in the area who has a clue. I told her about you, Rachel, and she wants me tested for Lyme via the "right" lab...I was tested back pre-Celiac but I'm sure it was not the right lab. She also wants me to see an immunologist because of the potential of chronic mono (and related issues). I had mono and was positive for both CMV and EBV (which, I believe, started this whole ruckus.) I must say, I'm so sad right now. I'm supposed to start my new job (a great, wonderful CAREER job!) on Monday and I just don't know how its going to happen.

Laura

Hi Laura,

Thanks for the tip about corn. We covered corn pretty extensively at the beginning of this thread because at that time I had thought I was "on to something" with the corn intolerance....it turned out not to be corn for me. Its always good to bring up these things again though because it might be the answer for someone else whos reading and doesnt know that corn is in *everything*.

As far as corn goes....I will react to all processed corn ingredients such as corn syrup or corn starch. Its really not the corn itself that I react to. I came to the conclusion that its because of two reasons...first processed corn ingredients contain sulfites...actually just about everything thats processed contain sulfites. Same goes for alot of meds and supplements. Sulfites are everywhere which wouldnt normally be a problem... only if you are intolerant or have something else going on that may be causing sulfites to reach toxic levels in the body. I think thats whats going on in my case. I react to sulfites so its very likely that that would be the reason I would also react to corn syrup...its nothing to do with corn.

The second thing is MSG...(free glutamates).

MSG (yeah..the bad stuff they put in our food) is usually made from corn because corn is very high in natural glutamates. Natuaral glutamates (bound glutamates) arent bad for you...its only when they process the natural stuff and the glutamates are no longer "natural" or "bound"....the glutamates then become what is essentially known as MSG. Its another thing that has made its way into all the processed food, most all meds and supplements and a whole bunch of other stuff...including dairy products. If for some reason your body has stopped being able to process this chemical...it could be yet another reason for reacting to nearly all things processed.

I have never been able to fully determine whether MSG is a big problem for me or not. Its in almost all the same stuff sulfites are in so its hard to know which I'm reacting to. Most people who are extremely sensitive to MSG will also react to Aspartame and sulfites. I think the cause is the same...enzyme dysfunction. Since I know I react to sulfites and aspartame...I'm sure MSG is on the list for me too.

I can eat fresh corn as long as its organic without any problems at all. I eat organic popcorn (that I pop myself) almost everday and its one of the few things that causes no reaction whatsoever. It took me a couple months to figure out whether corn was an issue or not but if you can eat fresh organic corn....you're probably ok with corn....as long as its not processed and loaded with chemicals.

I'm glad you're family is giving you a break from the unpacking to look for some help with this. If you do find someone to test you for Lyme...make sure its Igenix. All I'd heard online was that the other labs are useless and my Dr. told me the same thing. He said the mainstream doctors arent diagnosing anyone with Lyme because they are using far less sensitive labs. Instead the Dr's are mistaking Lyme symptoms for things like Fibromyalgia, arthritis, CFS, etc.

I'm sorry that you're having a rough time. :(

AndreaB Contributor
AndreaB
Posted

Laura,

Hugs to you! Prayers for you getting into Hopkins and seen soon! Get your rest and take care of yourself. I too, wish I lived closer to you so I could help you out. :(

Rachel,

Can you find Vit C without rosehips?

Rinne,

Thoughts and prayers will be with you. Please remind me when you appointment draws near. Looking forward to you getting some answers too.

Donna, Patti, Susan, Julie, Miamia, Lindalee, Evie, Judy and everyone else.......Good morning/afternoon. :)

We get our allergy test results on Tuesday.

Green12 Enthusiast
Green12
Posted
Rachel-

I haven't been posting lately but I have been following. I am so happy for you to ahve gotten to the bottom of things hopefully- you give me hope that one day I will get to the bottom of what is wrong with me. For now I'm still struggling to figure it out

Miamia

MiaMia, just want to express how sorry I am that you are struggling, have been struggling, with all of your health issues and trying to make sense of it all. Support and hugs to you, hang in there, and keep fighting- I beleive the answers are around the corner!!! Please let us know how you are doing.

:( Me too, one way or another it has been years and these days if I get a moment or hour of a relatively pain free body I dance around the house. <_< It has become the norm.

I am at the point where I would be grateful for any kind of diagnosis that could lead to treatment, Lyme doesn't scare me anymore, and given my history I will be surprised not to receive a Lyme diagnosis, not knowing is making me feel crazy. :(

The Salt/Vitamin C treatment seems to be having an effect, this is too gross but I think there are parasites in my ****. :ph34r: My balance has improved also and my eyes don't seem quite as blurry although occasionally they still are.

rinne, same for you :) I'm glad that your spirits are good enough to dance around the house! I believe that that is so important, no matter how bad things are, how bad we feel, to do something that reminds us we are alive and we can overcome, dancing, singing, smiling, laughing, whatever works :lol:

Good to hear the vit C/salt treatment is still going well, and interesting effects at that.

Also wanted to tell about my neck problem, got it resolved!! A few months ago I decided my pillow could be a problem so started rolling a hand towel for just shoulder to neck, pain gone. Told Dr., said that works!! Not sure why, but sure a relief!! Have a good day all. evie

Hi evie! Glad to hear your neck is doing better. I have heard that too, that the best thing to sleep on is a rolled towel, or neck roll style pillow. It supposedly supports the neck and spine in a correct alignment. Hope it continues to work for you :)

Laura- keeping my fingers crossed for you as well that you will get in to the doctor and get to the bottom of things. You hang in there too :)

Simply-V Newbie
Simply-V
Posted

I just wanted to note here that Aspartame, Splenda, MSG, etc are all made from corn or using corn derivatices and can set off anyone who is allergic to corn.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yes, you will find an answer to all of this. Quite possibly, this new doctor will be able to listen and give you recommendations--I hope so :) Also, remember, you are a smart, capable woman and you will figure this out. I know it ;)

Laura, I agree with Patti :)

In one of your first posts you wrote that you would do anything to feel better...you didnt even care what foods you had to cut out...just as long as it made you better. Thats something I must've said a million times and I know I would have never given up on something this important to me....I dont think you'll give up either. I think you'll figure it out and you'll get better....just like Patti said. :)

These days I see Lyme everywhere. :)

Yeah....I know what you mean. :unsure:

I read thats its now the second most widespead infectious disease. Its only second to AIDS. I was thinking its very likely it could be spreading much faster than AIDS....just underdiagnosed. The test for AIDS arent questionable....they KNOW how to diagnose AIDS....its a whole other story with Lyme.

Look what I've had to go through....I've probably seen about 40 doctors, 2 years off work, a gazzilion tests, noone taking me serious...and NOW after four years.... I just find out that I "probably" have Lymes Disease. Its still not even confirmed!!

They tested me for AIDS....no problem...it was ruled out with the one bloodtest. I'm thinking Lyme has gotta be #1. <_<

Green12 Enthusiast
Green12
Posted
I can eat fresh corn as long as its organic without any problems at all. I eat organic popcorn (that I pop myself) almost everday and its one of the few things that causes no reaction whatsoever. It took me a couple months to figure out whether corn was an issue or not but if you can eat fresh organic corn....you're probably ok with corn....as long as its not processed and loaded with chemicals.

Same for me Rachel, I can eat corn on the cob, tamales, and corn tortillas with absolutely no problems. So corn is not a problem for me. The heavily processed stuff is however.

Such hope and encouragement in OMG today.....looks like light at the end of the tunnel! :)

:lol: Susie

My feelings about all of this can best be expressed by the words of the song "Let the Sunshine In" by The Fifth Dimension, you know the song I am talking about?

Everybody sing..... rinne you can dance........

:lol::lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I just wanted to note here that Aspartame, Splenda, MSG, etc are all made from corn or using corn derivatices and can set off anyone who is allergic to corn.

I totally agree...but if the person can tolerate organic corn on the cob or organic popcorn kernals....they probably arent reacting to corn....its the chemicals. It is more common to react to aspartame, msg and splenda than it is to react to corn. MSG and Aspartame are neurotoxins and can cause all sorts of problems. Not sure about Splenda cuz I've never looked into what that can do. Corn in its purest form.....well its just corn. I think the most simple way to determine a corn intolerance would be to eat corn in its purest form and see what happens. If nothing happens but yet you react to everything else thats "derived" from corn....its probably the chemicals.

Of course if someone is IgE to corn....then they shouldnt eat it....period.

DingoGirl Enthusiast
DingoGirl
Posted
Now it is time to put some Ruthie Foster on the stereo and do a little dance, maybe if I dance the "happy" will arrive.

Rinne - who is Ruthie Foster? :)

I so understand how you feel at times....glad you got out to yoga.

Rachel - such scientificness today! I always love reading it, esp. the MSG stuff - - because as we know my brain is like a SIEVE adn I have to read things about 10 times to retain anything. :angry::(

I just wanted to note here that Aspartame, Splenda, MSG, etc are all made from corn or using corn derivatices and can set off anyone who is allergic to corn.

okay....a friend recently told me she read an article in The New YOrker - I have searched and not found it yet - about the accidental discovery of fake sugars. The inventor of same was working on PESTICIDES and ended up with....fake sugar. :o This guy said he in fact would never eat the stuff....and it is pure evil. anyone know anything about this? I"ll see if I can get the article from her. I have always thought real sugar (or fructose, a single sugar and even better) is much better for us than these evil chemical sugars....

dlp252 Apprentice
dlp252
Posted

OMGosh I wish I could give you all a group hug...I'm feeling huggy this morning!

Laura, I just feel so badly for you!

Miamia, and Rinne, you too!

We are all going to get to the bottom of this! I was just thinking the other day that I used to have so much energy and used to really want to get out and do stuff, not so much any more! It's so much of an effort!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rinne - who is Ruthie Foster? :)

Yeah Rinne.....who is she?? :unsure:

I LOVE dancing in my house!! :D Well....actually I love dancing anywhere but lately its just been in my house. <_<

I'm glad you got up and went to yoga Rinne! Way to go...it always makes me feel better to get up and do something.....sometimes its really hard to force myself....but in the end its always worth it. It never fails to make me feel better.

Music, positive thoughts, a little physical activity....its all soooo beneficial. I used to think all that stuff was just hogwash (did I just say hogwash? :blink: ) but yeah....it really does work!!

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
      133,256
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    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)

  • 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.