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Omg...i Might Be On To Something


Rachel--24

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rinne Apprentice
Rinne....I found this. Its a person's treatment plan. It includes the rife machine.

Open Original Shared Link

Here's more....but I'm thinking you may have already seen this stuff??

Open Original Shared Link

Thanks Rachel, I'll check it out.

Rinne....was it you that said I wanted to "Rachel" my treatments??

Yeah...I seriously want to be at the Dr.'s every single day!!

Yup, that was me and I'm still chuckling at my own wit. :ph34r::lol::ph34r:

Carla, I think that I have had Lyme for a very long time but that I was doing okay until I was bitten by the tick in 2003, I think that tipped me toward ill health. Prior to that I followed a mostly organic and unprocessed diet and was doing perhaps not great but my health seemed solid to me. Since 2003 it has been downhill and the past year of nausea and weight loss has just made it impossible to ignore or pass off as related to old physical injuries. My mother says she knows two women with Celiac, once diagnosed they have recovered, that makes sense to me. I persisted because I could just not believe that I was suddenly getting all sorts of food sensitivities and I realized that the pain I was feeling in my abdominal area was actually in the tissue. I started paying attention to the quality of the pain and I found myself unconsciously pulling the skin away from my body. I realized that when I did that I wasn't having pain related to digestion.

I'm with Rachel, I gotta know. I don't want to be treated forever, I want to be well.


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Rachel--24 Collaborator
My mother says she knows two women with Celiac, once diagnosed they have recovered, that makes sense to me.

Rinne,

That was my feeling as well...it just plain didnt make sense to me. Alot of people wonder why they are developing so many intolerances and ill health after years of being gluten-free...I think at that point its not just an issue of Celiac. May not be Lyme but definately something else going on.

I think we have to really *listen* to our bodies and when something that should work....clearly isnt working....in my mind this warrants further investigation.

I got the same feeling as you...that something *other* than food was doing this to me.....something that was inside me and never leaving...not even for a day. I was thinking if this was food intolerances...wouldnt I get better w/ elimination of the foods?? I tried every elimination and yet the symptoms never left...some diets leave me feeling better but never "cured".

miamia Rookie
Rinne,

That was my feeling as well...it just plain didnt make sense to me. Alot of people wonder why they are developing so many intolerances and ill health after years of being gluten-free...I think at that point its not just an issue of Celiac. May not be Lyme but definately something else going on.

I think we have to really *listen* to our bodies and when something that should work....clearly isnt working....in my mind this warrants further investigation.

I got the same feeling as you...that something *other* than food was doing this to me.....something that was inside me and never leaving...not even for a day. I was thinking if this was food intolerances...wouldnt I get better w/ elimination of the foods?? I tried every elimination and yet the symptoms never left...some diets leave me feeling better but never "cured".

rachel

i know exactly how you feel I feel like its almost impossible at this point to pinpoint one food or foods that triggermy reactions there are so many other components always playing a part- molds, chemicals, etc. except for dairy I was always able to eat pretty much anything I wanted now pretty much nothing. I know for me it is way way more than the gluten. I am so happy you discovered the lyme- I am still looking for my trigger. I coulden't find my igenix results last night but I am gonna ask my doc for a copy just to see if someone else can go over them just to confirm it is negative. I am determined to figure out my trigger or underlying problem. I am gonna really use you to remind me it is posible because sometimes I feel like I will never know what is really wrong with me

miamia

happygirl Collaborator

goodmorning all...

jerseyangel Proficient

Well, it was a busy night around here!

Julie, My opinion on the crackers is to err on the side of caution and skip them. I should have done that yesterday with some roasted almonds--I managed to gluten myself. :(

Andrea, Glad you spoke to your dad. Let us know :)

Laura, I had elevated billirubin levels, too. The more I learn about these eos disorders, the more I find I have in common. :unsure: Good luck today!

Nice to see everyone else--going back to lay down for a while. My husband took the day off today so we could hang out and get some things done here--and I'm absolutely useless. Stupid roasted nuts :angry:

miamia Rookie
Ok...I was at Curezone reading the Lyme forum and one poster was asking about the best treatment for her 5 year old...who had the rash and was symptomatic. THEN she posts this later on....

Seee....this is what I'm saying. Kids play together so if several kids in one family end up with Lyme I'm thinking its not from contact but from actual *tick bites*. This is WAY more logical to me. Also if Lyme were so easily spread it would happen much more often that other people are getting infected in the home, workplace, etc....but it just doesnt seem to happen that way.

Rinne...on the Lyme forum there are alot of posts about Samento/cats claw....I'm gonna have to read up on what they are saying... but not until after my bath. :)

Good idea.

There are ALOT of people who've had Lyme for decades and didnt know it. I think Lymetoo had it since childhood and was just "sick" most of the time. It *can* get worse though...if something else happened to put your body under even more stess....it could get worse. Thats a good reason to know for sure. You could prevent things that havent yet occurred from ever occurring if you have Lyme and get treated for it now.

I dunno....maybe I'm gung-ho but I know when its me I just need to know ASAP. Whenever a Dr. suggests a test and asks when I'd like to do it....my answer is always the same "RIGHT NOW". :rolleyes:

Same with the Bioset...he talked to me about it.....saying he wanted another test to confirm Lyme. Either conventional or Bioset....he told me to think about it...if I wanted to do Bioset he would give me the # to call. I was like...."I dont wanna waste time...I'll take the # now...I just wanna get started." I'm sooooo impatient sometimes! :lol:

Rachel-

I don't think its about impatience - well it is but its our health- sometimes I feel like I call my doctors office a million times when I am waiting to find out results or have a new idea- I know the women in his office must hate me sometimes I feel lke such a pest and then I think god I am suffering I cannot really care what someone thinks about me I'de rather me a pest than sick!!!!

Well, it was a busy night around here!

Julie, My opinion on the crackers is to err on the side of caution and skip them. I should have done that yesterday with some roasted almonds--I managed to gluten myself. :(

Andrea, Glad you spoke to your dad. Let us know :)

Laura, I had elevated billirubin levels, too. The more I learn about these eos disorders, the more I find I have in common. :unsure: Good luck today!

Nice to see everyone else--going back to lay down for a while. My husband took the day off today so we could hang out and get some things done here--and I'm absolutely useless. Stupid roasted nuts :angry:

sorry about the roasted nuts- me and nuts don't get along at all right now. I am also finding a lot of similarities with me and the eos info. The really interesting thing to me is sometimes when you are researching a disease or illness there are like a zillion symptome and really anyone could have them but the symptoms for this are much more specific and really fit my case.

Miamia

jerseyangel Proficient

Miamia--

I agree about the many symptoms. The thing about this is the numerous food intolerances and now the elevated billirubin. I definately think that for both of us, it's worth checking into.

I'm a little unclear about when the food intolerances would have shown up--mine didn't until I was gluten-free for several months. Of course, they could have been present before, I just don't know....

I've always had the feeling that there might be something else going on--so many things cause reactions. It's possible, too, that it's because of the damage from the untreated Celiac--so confusing :blink:


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miamia Rookie
Miamia--

I agree about the many symptoms. The thing about this is the numerous food intolerances and now the elevated billirubin. I definately think that for both of us, it's worth checking into.

I'm a little unclear about when the food intolerances would have shown up--mine didn't until I was gluten-free for several months. Of course, they could have been present before, I just don't know....

I've always had the feeling that there might be something else going on--so many things cause reactions. It's possible, too, that it's because of the damage from the untreated Celiac--so confusing :blink:

My crazy food reactions didn't start til I was gluten free either. I think I said something like this yesturday but I feel like I am "allergic " to like one or two things. But I react to everything. I mean I don't think I ma really allergic to romaine lettuce I think my body can't handle it same with things like plain turkey and really basic foods.

Miamia

Fiddle-Faddle Community Regular
Fiddle Faddle, I recognize that poem from my childhood....is it Shel Silverstein??

Yes, it is! Can't remember the name of the book it was in, but it was full of silly little poems like that, very cute!

It's GoodNews/BadNews time. The bad news is that my MIL is very ill, and, as she's nearly 98, she may be on her way "upstairs," so to speak. The good news is that she has had nearly 98 very good years (with a few tough ones in the 1940's), and a large, loving family (she is an amazing lady).

I expect that we will be going out soon either to say goodbye or for a funeral :( . Aren't some of you in the San Jose area? That's where we would be going...

Rachel--24 Collaborator
I am gonna really use you to remind me it is posible because sometimes I feel like I will never know what is really wrong with me

miamia

Miamia....you will find out. Hang in there and keep having that desire and drive and it will come. :) Patience is the hard the part though.....as you can see from my posts...I struggle with this even after diagnosis. :ph34r:

Patti...sorry about the glutening. :(

Laura, good luck today!!

Alison, good morning to you and everyone else....I'm off to work now. :)

I expect that we will be going out soon either to say goodbye or for a funeral :( . Aren't some of you in the San Jose area? That's where we would be going...

Sorry to hear that. :(

I'm in the San Jose area.

rinne Apprentice
Rinne,

That was my feeling as well...it just plain didnt make sense to me. Alot of people wonder why they are developing so many intolerances and ill health after years of being gluten-free...I think at that point its not just an issue of Celiac. May not be Lyme but definately something else going on.

I think we have to really *listen* to our bodies and when something that should work....clearly isnt working....in my mind this warrants further investigation.

I got the same feeling as you...that something *other* than food was doing this to me.....something that was inside me and never leaving...not even for a day. I was thinking if this was food intolerances...wouldnt I get better w/ elimination of the foods?? I tried every elimination and yet the symptoms never left...some diets leave me feeling better but never "cured".

I'm very grateful for your persistence Rachel, it really helped me trust my own sense that something else was going on that no diet change would fix, even though diet changes helped.

I see now that many things I did were not helpful because I didn't understand in the beginning that self-moderating my diet, health store supplements, chiropractic work and acupuncture would not be sufficient to deal with what was wrong. The most helpful treatment was lying still twice a week for one hour during my acupuncture appointment, allowing myself to really feel my body and through doing that knowing that I was in trouble. Anyone can do this, just lie down, lie still and follow your breath below your thoughts and listen to your body.

Miamia, I so hope that you can find answers, when you get your copy of the Igenex results there are several Lyme boards where you could post them, I am sure there are Lymies out there who know how to read them.

Patti, sorry you got glutened. Yes, stupid nuts.

Julie, how are you doing? I've thought of what you said about chlorine. I have a friend who's daughter was swimming 6 days a week but has dropped out, she has a terrible rash and just won't go. My friend has been pressuring her to return to it and I am hoping this information will change her views. Thanks.

I think 98 would be a great age to live to, congratulations to her for living a life to be celebrated.

I hope it is a good day for all.

Judyin Philly Enthusiast
My husband took the day off today so we could hang out and get some things done here--and I'm absolutely useless. Stupid roasted nuts :angry:

patti, i'm so sorry about your day..and Mark taking off.

best laid plans right????

now about the nuts...

remember how you always remind me....

.REMEMBER WHEN YOU WERE BAKING UP A STORM AND WERE OK??? ARE YOU SURE IT'S THE NUTS :ph34r:

...PROBABLY YOUR ABSOLUTLY RIGHT ...BUT YOU TAUGHT ME TO THINK 'OUTSIDE THE CELIAC BOX''' :o

PLEASE LET ME KNOW BY EMAIL HOW YOU ARE DOING TODAY.

WILL BE GETTING OFF HERE AND ''''THE PLAN IS TO DO BULBS TODAY'' NOW THAT'S THE PLAN..PRAYING I DO IT.

LOVE

AND HUGS.

JUDY

goodmorning all...

and hello to the lyme ladies. :) I am fascinated by all that you are writing. Thank you so much for sharing!

I am off to Rockville, MD today for another fun filled app't...should we place bets if the term "IBS" gets thrown around? I'm feeling rather fiesty today...he better watch out. :)

Andrea, happy you got to talk to your dad. Hugs.

good luck at dr's today

i'll put a bet on the ""IBS"""

anyone else in on her bet???

judy

CarlaB Enthusiast

Patti, Judy has a great point ... last week when you were feeling so great, I was thinking, oh, no, she's building enough energy to do some healing ... that's what always happens to me, a spurt of endless energy, followed by not being able to get out of bed.

FiddleFaddle, 98 is a nice old age to live to, that hardest part is that we miss them ... my thoughts and prayers go out to you and your mil.

Rinne, you and Rachel are right. There has to be something else going on. I HAVE gotten somewhat better gluten-free/casein-free. My joint pain, excessive bruising, brain fog (mostly) and insomnia have gone away. Until recently, so had my d. I don't look as guant as I did, though I am almost as thin as I was. I am having muscle aches now. Last night I was practicing flute with the church choir and had trouble holding it up ... my right arm was getting very sore. I have noticed other muscle aches as well. My weight seems to have stabilized, but at about 5 pounds lower than it was. It's still within the range that I consider to be healthy (123-126 lbs.).

I know that my doctor said there would be detoxing symptoms, but, like Rinne, I've been into health food (and supplements) for YEARS! So, this diet is not that much different from what I was doing before except that I'm eating fewer carbs (the bad ones -- no sugar). I guess it could be that I'm detoxing heavy metals and other toxins, but I just think that since the stress I was under has been gone for 5 months, since I've been doing nothing but resting and focusing on getting better, and since I've changed my diet a couple months ago, I should be getting somewhat better. My 85 year old grandmother gets around better than I do!!

If it's not Lyme, what is it? Ugh. I don't think it's other food allergies as it just doesn't seem to be food related anymore. Oh, and the most recent decline in my health was after I had been very ill and on doxycycline for 21 days. I had been sick before, off and on, always related to stress, but that was the last straw.

Laura, we've ALL got IBS!!! I consider that the "We don't know what's wrong so we'll call it this" diagnosis!! For sure, that's what you have!!!

Judyin Philly Enthusiast
It's GoodNews/BadNews time. The bad news is that my MIL is very ill, and, as she's nearly 98, she may be on her way "upstairs," so to speak. The good news is that she has had nearly 98 very good years (with a few tough ones in the 1940's), and a large, loving family (she is an amazing lady).

I expect that we will be going out soon either to say goodbye or for a funeral :( . Aren't some of you in the San Jose area? That's where we would be going...

MISSED THIS SOME HOW.

SO SORRY BUT OF COURSE SHE DID HAVE A GOOD LIFE BUT HEY,,,WE SURE WILL MISS THEM.

WILL SEND POSITIVE VIBES OF SUPPORT YOUR WAY.

JUDY

jerseyangel Proficient

Judy and Carla,

I would normally tend to agree with you, but yesterday, I felt absolutely fine before I ate the almonds. I had problems in the past with nuts roasted in peanut oil, so I saw these over the weekend, roasted in canola oil. They also make flavored nuts, and these had an off flavor that made me think that they might have been made soon after the last batch of the flavored ones.

It definately feels like gluten--I haven't had a gluten reaction in a while.

Anyway, guess what? Mark started to get a toothache last night, got into the dentist at 7:30 this morning, and ended up having the first 1/2 of a root canal done! He's tough, though, and these things don't phase him a bit.

It's just kind of funny--Maybe we're just getting old :lol:

Carla, I'm sorry that you're still not much better. I think it's a good idea for you to get tested for Lyme, considering your history.

Judy--did you get tested already or are you still planning to? I know you just had some bloodwork done--

rinne Apprentice

Hi Judy, nice to see you so bright this morning.

I'm not.

I had the bright idea that we should get rid of the T.V. and after twenty years of living with one I didn't want my sweetie agreed to if he could get a T.V. card for his portable. So that is what we did and that has been fine but I am feeling wretched this morning, overdid the peanut butter yesterday and threw up big time, and all I want to do is lie down and watch the tube. My sweetie even left his computer at home for me so I could do that but now I can't make the sound work and I am even more tangled up in my misery than if he had just taken the damn thing. :lol: I see how completely contrary I am, even when I get what I want I am still not happy. :ph34r:

I was thinking about what you said about energy Carla, I feel like I am just beginning to understand how truly exhausted my body is and how stressful this experience has been, and it's not over yet. :rolleyes:

CarlaB Enthusiast
I was thinking about what you said about energy Carla, I feel like I am just beginning to understand how truly exhausted my body is and how stressful this experience has been, and it's not over yet. :rolleyes:

I know what you mean. If it was just my adrenals, surely I would be feeling somewhat better by now.

We only had our TV available for use with movies for YEARS. Only recently we got cable, just the very basic $10 so that we can get the local channels. Now we watch a few shows, but after only watching movies for about 12 years, we turn it off when our show is over. Having it for just movies was a nice compromise ... it wasn't completely gone, but you really had to make a choice before you even turned it on. You cannot see ours from the table or from the kitchen.

AndreaB Contributor

Patti,

Sorry about those nuts. Since you've been feeling so much better lately, maybe it will pass quickly. Are you going to look into eos? How was the program yesterday?

Carla,

Get tested for Lyme. I'm thinking the same as everyone else here.

Rinne,

Sorry about you being sick. Try and get some more rest and we'll see you back here when you are up to it.

Alison,

Your MIL has had a good, long life. Doesn't make it much easier to deal with on our side though does it.

Miamia,

Thinking you should get tested for eos. too. Let us know when you find your lyme test.

Rachel,

Hope your day is going well.

I hope I didn't miss anyone. Gotta go get the kids toast ready.......back in a few.

evie Rookie

I think 98 would be a great age to live to, congratulations to her for living a life to be celebrated.

I hope it is a good day for all.

rinne Apprentice

Evie, I am so sorry to hear that, what a struggle it all is sometimes, I do hope that the medications will help and that you are feeling better soon.

Andrea, yes, you are right I really do need to sleep and I am off to do that right now. Thanks.

AndreaB Contributor
I am in need of all your prayers, have picked up a very bad problem. Possibly when I had a 36 hr. stay in the hospital early September I picked up c. diificile (very virulent diarrhea problem). Have been on a med for it for nearly 10 days with no improvement, now Dr. wants me to start phenergan and lomomotil. Sure hope something will help, am also using Pedialyte but getting quite weak and losing weight. I had done so well getting better from celiac, was so thankful for that. Thank you all so much for all your help and understandingi.

Evie,

We will keep you in our prayers for healing and health. Love you. :wub:

DingoGirl Enthusiast
I don't even feel like going back to him but he is one of the few dentists in the city who take care of fillings properly. :angry: Fortunately I was wearing my pearls and they are my ladylike leash. :lol:

Rinne...this reminded me....my older dog Tika/Stinker always wore a strand of pearls, it was her trademark...her nanny, Lauren, who is like my younger sister, used to retrieve Stinker while I was at work (in Monterey, before Stinker was hired at tasting room with me) and they ran around all over town and on the CSU Monterey campus, Tika in her pearls....they wrote two books together also. ;) BTW Tika was wearing her peals 10 years ago, before the gigantic jewelry trend in dogs...she is so ahead of her time.

Elevated liver enzymes go hand and hand with celiac, correct??

Laura, best of luck with your appt tomorrow :) Keep us posted.

Fiddle Faddle, I recognize that poem from my childhood....is it Shel Silverstein??

I am very emotional today, crying at the drop of a pin. Whenever I have reactions to anything I am eating and then try to go without this is what happens, it's like weepy withdrawal or somthing......does this happen to anyone else??

Julie...so sorry you're an emotional wreck. I hope it passes soon, I get weepy and anxious and even PSYCHO from gluten consumption, I don't know about teh withdrawal.

I would stay away from Edward and Sons....I recommend Trader Joe's Savory Thins (good, safe and cheap) or Mary's Gone Crackers - DELISH but pricey. Feel better...

BTW my best friend always tests w/ elevated liver enzymes, and there is literally nothing else wrong with her.....she's the most annoyingly healthy person I know. It's puzzling....they've biopsied it and everything, no clue, been going on for years.

ONE MORE REASON TO NOT EAT GLUTEN.....I have serious breakouts. Harumph. :angry:

This is another thing ... my symptoms have always appeared after periods of great stress. Every single time. I lived under constant stress when I lived with my mom and step-father (as a child), so I never felt good then.

I know Lyme has a link to stress, but I wonder if gluten intolerance does, too. I do carry the gluten intolerance genes, and my granfather on one side I would guess had it -- it's pretty obvious actually.

Carla - I was in constant stress also in my family. It was a crazy place...an emotionally impoverished and disparate battleground, yet appeared quite normal and upright to the outside world....we all (the four kids) came out with ISSUES, one brother took his own life and I have spent at least 50 percent of my own life contemplating same. This stress can only do harm to the body, and it's a constant battle to work to regain and undo those stressors for us.....all we can do is fight and try and try some more....some days it seems one step forward, two steps back....I would definitely look into Lyme in your case. But I do think gluten-intolerance causes the propensity to react or be affected mentally/emotionally in a more acute manner, DEFNITELY. and I know this because having removed it, I am no longer in a constant sad and confused fog. In college I also dropped down to six units a couple of semesters and could hardly get out of bed. It took almost six years to graduate and I was so proud to have done it.

I am off to Rockville, MD today for another fun filled app't...should we place bets if the term "IBS" gets thrown around? I'm feeling rather fiesty today...he better watch out. :)

Just PUNCH HIM if he even says IBS.....at the very least, a withering stare and tell him you will not accept that waste-basket diagnosis......harumph! :angry:

It's GoodNews/BadNews time. The bad news is that my MIL is very ill, and, as she's nearly 98, she may be on her way "upstairs," so to speak. The good news is that she has had nearly 98 very good years (with a few tough ones in the 1940's), and a large, loving family (she is an amazing lady).

Allison - - what a good old gal she sounds like and has given adn had lots of love. Hugs to you....

I had the bright idea that we should get rid of the T.V. and after twenty years of living with one I didn't want my sweetie agreed to if he could get a T.V. card for his portable. So that is what we did and that has been fine but I am feeling wretched this morning, overdid the peanut butter yesterday and threw up big time, and all I want to do is lie down and watch the tube. My sweetie even left his computer at home for me so I could do that but now I can't make the sound work and I am even more tangled up in my misery than if he had just taken the damn thing. :lol: I see how completely contrary I am, even when I get what I want I am still not happy. :ph34r:

RINNE - - what were you thinking....Lymies and Celiacs and people with any sort of chronic pain or malaise NEED their TV's :lol::lol: My god, what would I have done in all those years of Couch Depression (my own term, feel free to use it :) ).....no energy for ANYTHING, not even reading at times, so the TV was my friend.... ha ha ha ......SO happy that I don't watch nearly asmuch as I used to, but it is there, big comforting empty vortex on bad days..... :lol:

I am in need of all your prayers, have picked up a very bad problem. Possibly when I had a 36 hr. stay in the hospital early September I picked up c. diificile (very virulent diarrhea problem). Have been on a med for it for nearly 10 days with no improvement, now Dr. wants me to start phenergan and lomomotil. Sure hope something will help, am also using Pedialyte but getting quite weak and losing weight. I had done so well getting better from celiac, was so thankful for that. Thank you all so much for all your help and understandingi.

Have been keeping up with all of you and your problems and joys, wish everyone a GOOD day. evie

EVIE - I had a terrible case of C. Diff.....PLEASE be very aggressive and vigilant with your treatment - - my God, sometimes the TREATMENT can make you as sick as the disease. I was on Flagyl - have you been on this? PLEASE don't let this get out of control - I had to go to hospital and get IV drip, lost 20 pounds in two weeks, was SO sick and dehydrated. OFten wondered if this was the trigger for Celiac. I am going to PM you......

Dang, it took me so long to catch up! Wishing you all a day of good health.....no more time to write, actually going to Fleming's today for lunch w/ my mom and nieces, am excited! :rolleyes: My mom had to put her 14-y-old cat Bob down yesterday......they are a mess. Well, my stepfather is.....a grown man sobbing.....so sad. :( So we are honoring bob's long life today and having some laughs.

Lots of love to you all, Lymies and otherwise.....

oh, Andrea - - PLEASE schedule a visit to see your dad....when my dad was dying (colon cancer at 56 years old), a nurse looked at him on a Saturday morning, said, his vitals are good, he may have 3 weeks (we were waiting for my brother to fly in a few days later). He planned his funeral that day, the director came to our house. Later that afternoon we prayed together, he asked some questions about God and forgiveness.....it was one of the most beautiful days of my life, the things he said, the look on his face, and the epiphanic moment he had about how God viewed him. He died an hour later, cardiac arrest. I look forward to seeing him when it's my time to go.

Dang, this got all serious all of a sudden...... :huh:

hugs and love..... :)

AndreaB Contributor

Laura,

I'm sorry, forgot to put my vote in for your appointment.

I vote for the IBS word being thrown around. Since you're feeling feisty today, can't wait for the update. :)

Susan,

Thanks for your input about my dad. He's not up to a visit with a almost toddler right now. I do plan on going down in November. Still need to get more info.

DingoGirl Enthusiast
:o OMG I am so chatty today. too much over-sharing and will probably ERASE later!! :lol: My life is an open book.......
Judyin Philly Enthusiast

:blink: OH MY GOSH :blink: SO MUCH SADDNESS AND ILLNESS ON THE BOARD TODAY.

I STILL CAN'T GET THE HANG OF MULTIPAL POST 'QUOTES'

I KNOW I'LL LEAVE SOME ONE OUT SO PLEASE FORGIVE.

EVIE--BEV HAD THIS AWHILE BACK MAYBE SHE CAN HELP. I'LL SURE PRAY FOR YOU. THIS IS A NASTY BUG

LAURAJ CAN'T WAIT FOR THE VOTES TO COME IN RE: THE IBS...HOPE YOU GET SOME CONCRET NEWS.

PATTI AGREE AFTER YOUR POST IT MOST LIKELY WAS THE NUTS...NUTS... :) WELL POOR MARK, AT LEAST YOU DIDN'T MISS OUT ON HIS HELP TODAY. MAYBE BOTH YOU YOU CAN REST UP TODAY. HOPE HE'S BETTER. IT HAPPENED TO ME WITH MY TEETH..ONE ROOT CANAL, THEN RIGHT AFTER THAT ANOTHER AND THEN ANOTHER AND THEN 2 PULLED..ALL IN ONE YEAR??/ WHAT'S UP WITH THIS...OH WISE ONE WITH ALL THE KNOWLEDGE :)

SUSAN ENJOY YOUR 'BOB' CELEBRATION..SOUNDS FUN.

ANDREA--GOOD LUCK WITH YOUR DAD ISSUE.

CARLA, YOU NEVER STOPPING AMAZING ME WITH YOUR COURAGE AND NEW INFO SHARING..WOW.

RINNE--SO SORRY YOUR SICK TODAY AND NOW TV TO DROWND YOUR SORROWS..HOPE YOU FEEL BETTER SOON.

JUDY

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      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?

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

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    • suek54
      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
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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