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I Hate I Hate I Hate...

penguin

By penguin
in Coping with Celiac Disease

Recommended Posts

Guest nini
Guest nini
Posted
Nini,

Sorry to go off topic, I know you are having personal problems, but I'm wondering about Chiropractors. What exactly are they used for? Do you believe they get results?

Again, sorry you are having work problems.

yes I believe that Chiropractors get results, chiropractic is usually thought of as treatment for whiplash after car accidents. That is only one of the things they are good for, also for headaches, back pain, neck pain... I believe that they are also good for general well being, keeping the nervous system free from blockage, the nervous system can function better.

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  • Replies 162
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Judyin Philly Enthusiast
Judyin Philly
Posted

HI

MAYBE WE SHOULD START A THREAD ON --"HOW CHIROPRACTORS HAVE HELPED US"...THOSE THAT WANT TO CAN START THEIR OWN THREAD OF WHY THEY HATE THEM.

MINE IS THE ONLY EXPERT ON celiac disease THAT I HAVE SEEN. MY INTERNIST & GI TOLD ME TO CONSULT HER ON THE DIET AS SHE KNEW MORE ABOUT IT THAN THEY DID...GIVEN HOW SHE'D HELPED ME OVER THE 11 YEARS I'VE GONE TO HER.

IT TOOK 3 YEARS TO GET UP THE COURAGE TO SEE HER AS I DIDN'T BELIEVE IN THEM. THAT BEING SAID. ' THERE ARE GOOD ONES WHO ADJUST EACH PATIENT IN A DIFFERENT WAY BASED ON THEIR PARTICULAR NEED' JUST AS THERE ARE BAD DR.S THERE ARE ALSO BAD CHIRO'S.

MY SWIMMING TEACHER OF 5 YEARS BEGGED ME TO SEE HER.

SHE CAME TO MY HOUSE AFTER DX'D AND PERSONALLY 'DEGULTEN MY KITCHE'

I WOULDN'T BE WALKING TODAY WITHOUT HER.

JUDY IN PHILLY

PS NISILA--I THINK THE IDEA OF A REHAB PLACE MIGHT BE GOOD. BET YOUR CHIRO WOULD GIVE A GOOD REFERENCE...I FORGET --DO YOU HAVE A DEGREE OR CERTIFICATION..I HAVE A FRIEND WHO JUST WENT FOR MASSAGE THEARPIST AND IS SO BUSY SHE'S EXHAUSED..I KNOW THERE IS A PLACE FOR YOU SOME WHERE OUT THERE.

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

Judyin Philly -- Great idea!

I took your advice and here it is....

How Chiropractors Have Helped Us, A alternative to main stream medicine we can explore

Open Original Shared Link

Judyin Philly Enthusiast
Judyin Philly
Posted
Judyin Philly -- Great idea!

I took your advice and here it is....

How Chiropractors Have Helped Us, A alternative to main stream medicine we can explore

Open Original Shared Link

Sillyak--

Thanks so much for doing this.

I hope this thread will help others find the help we have.

I'll copy this and add my post tomorrow when I'm not so tired. Going to bed.

Thanks again.

Ursula. loved both your posts. they are amazing 'healers' aren't they.

judy

Nantzie Collaborator
Nantzie
Posted

I hate that good people have bad things happen to them.

I hate that losing people hurts.

I hate that love is the biggest, most painful risk we can take.

But above all that, today, right this minute, after working out almost EVERY day this last two weeks...

I

HATE

BACK FAT!!!!

Blech.

ianm Apprentice
ianm
Posted

Nini I don't know anything about your occupation so I can't offer any suggestions. There is a better job out there and this may be a sign to start looking. Good luck and hope all works out.

Guest nini
Guest nini
Posted
Nini I don't know anything about your occupation so I can't offer any suggestions. There is a better job out there and this may be a sign to start looking. Good luck and hope all works out.

thanks Ian. I updated my resume yesterday, so I'm ready to start looking...

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Megan Rookie
Megan
Posted

I hate Doctors who request your phone call and don't get back with you for four days, and then it's their nurse. So, anything new that may have happened in those 4 days I have to leave a new message for, which won't be returned for 4 days by his nurse again...

I HATE THE CITY....my country doctors were back with me in 2 hours and they knew my name, my history, and gave me great advice even though I'm seeing someone else...these doctors here I'm just a number or something, obviously not someone they really care about...AAGGHH!!!

I just want to feel good!! or really I want someone to tell me it's not gluten it's something entirely different because I could only afford a day and a half worth of gluten free food....ughhh, I hate this!

francelajoie Explorer
francelajoie
Posted

I HATE MY JOB!

eleep Enthusiast
eleep
Posted

Okay -- here goes (deep breath) :

I hate the fact that my boyfriend of 5 1/2 years and I were about to get engaged in January and, were it not for the sudden revelation about all this Celiac stuff for me and his dissertation defense would still be about to get engaged, or, in fact, engaged, but NO -- he had to go and freak out and actually move out of our shared house and now I need a roommate to cover the last few months of the lease -- not to mention the fact that I'm writing a dissertation as well AND my boyfriend is on the job market looking for an academic job which will take him far away and possibly even make it impossible to heal the rifts in our relationship -- even though we were both ready to take the jump towards marriage together -- because now I'm having second thoughts about writing my dissertation long-distance just so I can move to be with him RIGHT NOW and am thinking that -- if we get back together I'll need at least six months in town here to write before I can move -- (and he's just now said he wants us to date each other again -- last night after three and a half weeks of hellish moving out frenzy and his total refusal to own any of his anger about this. I hate that we've created another rift in the trust between us.

Despite all of this, I'm feeling fabulous and getting a lot of work done and spending time with friends -- which is the ironic other result of finally figuring out what was wrong with my health.

rache Apprentice
rache
Posted

i saw this topic and thought maybe listing my HATES could make me feel better... So here we go!

I hate.....

- not being able to have a whopper w/ cheese and fries at burker king!

- not having an appetite

- the feeling of being full after eating 2 bites of something

- being nauseous 24/7!!!!!!!

- this overall sick feeling i feel like i have ALL the time

- how depressed i always get

- how i feel like an outcast when im around everyone else eating normal foods

- that no one around me understands the frustration with this disease

- that i dont feel like myself anymore

- weighing 88lbs. i really really hate it!

- when people say "i wish i had that disease so i could be skinny'

- paying $6 for a loaf of bread that tastes like cardboard

- that i cant take some miracle pill

- having NO energy

- feeling sick

- feeling sick

- and feeling sick. i hate it!! :(

Guest nini
Guest nini
Posted

I hate job hunting

I hate being broke

I hate having cereal be the ONLY food in the house that I can eat... (see above BROKE)

printmaker81 Rookie
printmaker81
Posted

I'm finally feeling pretty good again, so I can take most of these things with a grain of salt, but it doesn't hurt to vent a litlle here:

I hate when my department head tells me he understands my restricted diet because he's a vegetarian and I can't bless him out because he's my department head.

I hate that immediately after this he tells me we're ordering pizza for a departmental dinner.

I hate being reduced to eating a salad so often when eating out.

I hate being so skinny and feeling guilty for hating that I am so skinny because all my other friends are trying to lose weight. I really hate that I have a friend who is trying to lose a substantial amount of weight and we often go to the gym together, and I just have that feeling that I make her feel bad.

I hate that my 'disease' becomes the topic of conversation at nearly dinner/party/bar when I meet someone new. That whole Now why can't you eat grains -what a freakish body you have-tell me more syndrome. Particularly when my other friends could probably recite my lines for me.

I hate the stinking inconvenience of a gluten free diet.

I hate most of all that my mother almost assuredly have Celiac but won't get tested. It worries me all the time.

I hate nausea. Really. I hate it. Three straight years of it constantly, and somehow I think that should be exempt from ever vomiting again.

Well, I guess now that I've purged myself here, I should count my blessings on the love,love,love page...

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      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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