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Holiday Blues


Serielda

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Serielda Enthusiast

I hate making posts like this one but after hearing some recent news it has made me feel really down. I can't afford to be down as I have a lot of things I need to learn for work, but I can't seem to shake right now feeling woe is me. I recently learned two former acquaintances just got their first house and My husband and I are still renting an apartment. Granted it's a very nice one but it makes me feel down. Second still feeling angry I can't be a vegan. Dr.s told me due to all the grains in a vegan diet, no due to me still healing and felt it would be safer having me go grain free on top of gluten free. I have bills out the yin yang due to getting diagnosed. I know some would say improving my health is better and one thing at a time but it still doesn't take the omg why is this all happening to me go away. I would just love for once a string of awesome things of the good variety to happen for me. I know one of the best things did happen was finding out I was not a hypochondriac and that what is wrong is treatable before seriously bad and sad things happened worse than it could have been.

I guess the thanksgiving holiday and spending it around the idiots on my hubby's side of the family didn't help since I had to sound like a broken record on why I couldn't eat anything there politely also didn't help. I know I'm still new and stuff and they are too, but ''Ello ever hear of Google? My father is their age and he knows how to google crap, at least I had awesome stuffs at home that wouldn't make me sick. Was anyone else's first holiday season after diagnosis this depressing?

On a positive note I just realized I'm no longer living in that really crazy neighborhood that used to flip me out with all the bad things that went on there and my current home is much calmer.


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nvsmom Community Regular

(((Hugs)))

StephanieL Enthusiast

i am not telling you to disregard dr.'s orders outright. Do you think it would be possible to speak to a nutritionist? I haven't had a lot of luck with them myself but perhaps you can find someone who could help you manage the vegan thing and Celiac.  You can get plenty of protein with plants, nuts and soy if you wanted to and are really committed to staying vegan.  It may take some research but I know people with far more restrictions that have managed that way of eating and stayed healthy.

BlessedMommy Rising Star

Does the doctor have any evidence that cutting out grains and beans will help you to heal?

mamaw Community Regular

Holidays  in general  can  be  pretty depressing then  throw  in a new illness....  hugs  to you.....Please  don't dwell  in what  others  have, your  turn & time  will come...you don't  know  the others  money  situation  or  their   thought  process..they  may not  be  ready for a new home  & may end  up  biting  off  more than  they  have  funds to pay for.. ( that is just  an example)...sometimes when  people  rush into decisions  , big  decisions  to  fast  they  loose  big time.... so it is  better  to  do  lots  of  planning & be prepared  for  future events.....

You  will  catch up at  the right  time.....be happy  that  you are  healing  have a  great partner & are in a safe place...with  gluten-free food... I  always  prepare  gluten-free  food  to take to any  invite...

It  is  hard  for  us to  understand  this   celiac  let  alone  others  who  have  no  clue or  issues.. I find  that  if  it  isn't  effecting  them then they  don't  truly care...Just  a  normal  thing although  it  hurts at times...For  instance  do  you  care  about  MS or  a brain  tumor  if  no one  around  you  has it? yes, you may  care  but  not  enough  to  know  everything about  it...so  don't  be  to hard  on  people  who  lack knowledge  about  celiac  when  they don't  have  it...

The  good  news  is  you  found  you have  many things to be thankful for... And  may health & happiness  follow  you through  this  holiday season....

hugs

Serielda Enthusiast

To address the mentions of nutritionists yes they also agreed on the no grains period thing. I know I've shown some improvements since the changes, which I know positive improvements should trump over a lot, but I still find myself lashing out about it. I feel that helping with a cause I wanted to support strongly was stolen from me by ignorance. like I said very angry about all of this.

mamaw Community Regular

sending  more hugs!  You  are  still all good  when it  comes  to celiac....the feelings  you  have  are  normal   to celiac,  I  think most  of us  have  been  there our   first  few  months  into  recovery....sadness,  anger, denial, an  emotional  roller  coaster  for  many....some  it  takes  much longer  to  find  peace ... the good  thing it  does  happen...


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StephanieL Enthusiast

If you look at your diet, what are you eating in large amounts that you would need a replacement for to be vegan? Perhaps people here can help with suggestions that may help you return to being vegan and that may help some of the anger you are feeling?

((hugs))

BlessedMommy Rising Star

Quinoa, amaranth, wild rice, and buckwheat aren't grains. Is including them in your diet for more variety an option for you? 

Serielda Enthusiast

Blessed, trust me when I asked several sources that did give me a reasonable answer. I tend to agree with you, however they all seem in agreement . So I am trying things their way. After all they specialize in what they do. I understand my constant doubt is not cool as I have seen improvements, and my minor sarcasm about some requests would be like them trying to do my job which is helping run a medium to large IT network they know nil about but trust those who know IT to run. Once I had that analogy I was like ok, they know food and medicine so let's give a benefit of doubt they are doing things right. Since I do feel better.

Serielda Enthusiast

StephanieL, post extreme diet make over there was a freaking ton of rice and veggies and I admit to eating a lot of gluten free soy fake meat things. Cooking at night fell on hubby as I work overnights. I admit he is a trooper and serious keeper. When I was told no gluteny things he stopped eating them . He stated if I couldn't have some of my faves he wasn't gonna have them either as it isn't cool to eat in front of peeps what they can't have.

cap6 Enthusiast

Rice, quinoa are in the grain family and they may not work for you right now as they can be difficult for some people to digest.  Perhaps some time down the line as your gut heals you may be able to reintroduce them into your diet if you wish.  My niece is a vegan and know she eats tons of veggies.  Is fish an option at all for you.  That's a tough one as even beans for protein can be very difficult to digest.    

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    • trents
      @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
      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
      @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
      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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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