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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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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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