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

New At This...


Finallyglutenfree

Recommended Posts

Finallyglutenfree Newbie

All I can say is I feel like I've woken from a 40 year nightmare. Only recently did I find out I have Celiac and have started learning how to eat to avoid the depression, anger, foggy brain, etc. I'm trying my best to be careful yet still here and there all of a sudden I start to feel down again and full of anxiety. Wheat's the worst. I'm a different person on that stuff. So I've been avoiding it like the plague. But lately I'm noticing even when I eat corn or rice I feel "off". Does this happen to anyone else? What the heck is there to eat if I take out those too?


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Hello & Welcome

Some  people  feel  very sad & angry  to get  a  formal dx's but  for others  it  is a life  changing  moment  to better  health...We all process  things  different so  no right or  wrong  way. There  is a learning  curve to master  the gluten-free  lifestyle , it  takes  time  but most  get  it  figured out. Celiac  is like a chameleon as  no two are  exactly alike so  what  works for one  may not be  good for another...

1. Start out  with things  you already know to eat: "naked foods" meats, fish, veggies, fruits, without  marinades, rubs, sauces, coatings. You  can  add  your own  seasoning  that  is gluten-free.

 

2. Try to avoid  processed  gluten free foods  in the beginning even  if  they are  gluten-free...some  people  even avoid  dairy  for  6 months  or so....all this  gives  the  intestinal tract a  chance to heal  without  added  junk.....but  if  you are  craving  something  give in to a  bite, you never  want to feel food  deprived. It  also  is  better  to try to  eat  at home . Restaurants /fast food  gluten-free  or not  in the  beginning  can play havoc  ...if you must  eat  out  be  very  selective  &  go to places  that  have a gluten-free menu ....&  don't  be  afraid to ask lots of questions.IE: do you add  pancake batter to your scrambled  eggs, do you cook  the gluten-free  pasta in the  same  water as  the  wheat pasta?Do  you have gluten-free  soy  sauce?

 

 

3. Clean out  the kitchen:  make  sure  no scratches  in pots & pans, plastic  or  wooden utensils..Scratched  items  that  had  been used  for  wheat  can  hold gluten  in the  deep scratches. Toaster  for  just  gluten-free( can't  get  rid  of  wheat  crumbs in a  toaster). Breadmaker can  be  a  problem as well.

Make  a separate  shelf  on top  for  all your  gluten-free  foods. Decide  if  you  will have a  dual kitchen with  wheat  products & gluten-free  or  go all gluten-free....If  it's a  dual kitchen  talk to everyone  in the home  & make  ground  rules. No  double  dipping  in  jars, condiments, no  wheat  items  directly on  any  counters, things  like  that.

 

4. Taking  away  gluten  is  alike to loosing a loved one, we  also  go through  a  grieving  process: anger, sadness,   why me, bargaining &  finally  hope & healing... gluten can also be like an opiate for  some....

 

And  yes to your  question: some  people  react to  rice,  esp corn, soy, GMO  products, MSG & so on. again  as  you move  along  you  will find  the  things  that  bother  you.. You  will begin  to be able to read  what your  body is telling you... Listen....at  first  your  selection may be  limited  but  you  may well be able to add  a lot more  into your  diet  once  you are  healed....

 

5. Educate  yourself in  steps  & try not to  do  all the learning  in a  day  , week or   month.  Being gluten-free  is a 24/7 daily  learning  experience. Take  your time  & master  each  phrase  as  you go  then  you  will not  have to back  tract  as  much....there  will be  ups & downs  &  even  mishaps. Don't  beat  your self  up  for a  mistake but  make it a learning  experience....it is only a mistake  when  nothing is  learned  !A good  lesson  learned  is knowledge.

 

6.  Look  for a  local  gluten-free  support  group  & latch onto a  knowledgeable  strict  celiac  .....Strict  is the  key  word.....

 

No  two  people  heal  alike  so  some  foods  may be bother  some  & not others. The  body  is  a  very  technical  machine so  it  may  fight  you  back  some  days. I love digestive  enzymes  to help  with that. They  break down  the carbs, proteins & such  that  we  eat...I also  am a  lover of  probiotics, they are the fighters  in our intestinal  tract....( there is  some  talk  now  about  some  not  being  gluten-free  so  be  selective  if  you  choose to take them).

 

Keep asking  questions  , you  are on the right   path...

 

hugs

MsMarginalized Rookie

Education is the best advice ever. Just be careful where you get it from. I just finished reading Jennifers Way by Jennifer Esposito. Another good author is Elizabeth Hasselbeck. Your public library probably has most (if not all) of Elizabeths books (she has a few). There is a lot here on line, too. Just be careful.

 

My 2cents for your first little bit of time after diagnosis: shop the outside of your grocery store.  Fresh fruits & vegs., fresh meat, seafood. Lightly steam the vegs & don't over-do the heavy fiber ones.  Be careful with dairy...sometimes folks find that they are sensitive at first because of the damage done by the disease.  I'm lucky that there's a gluten-free bakery w/in 30 miles of my home. If there's not one near you, poke around here at the Glutenfree mall. Also check out same brand items on Amazon/other on-line retailers.

 

Good luck & God bless.

 

edited to add: there are a few gluten free bloggers out there...poke around them. Some aren't my cup of tea, but since you can read their previous postings, you can see which one's know what they're talking about.

Jays911 Contributor

And still, no matter what you do, expect to be glutened from time to time.  I got hit this weekend, and all I can trace it to is adding some vanilla flavoring to a diet coke.  Corn doesn't bother me, but soy hits me hard.  Live and learn.

Finallyglutenfree Newbie

Thanks for the great advise everybody :) man does it ever help having people to talk to that are going through the same thing! I can't believe that something that can affect a person's life so profoundly isn't more known. I've been on practically every anti depressant there is, plus dexadrin to try to keep me awake and focused for most of my life. You would think with all my symptoms at least one doctor would have suspected this. I hate to think of how many people are out there struggling with their mental health that have no idea the problem is something as simple as a food allergy! I've been going through almost a grieving process now that I know what's wrong. How diff would my life have been had I have known this at a young age! The pain I could have avoided had I known! It's so maddening. The way I found out is a friend got me to start juicing to lose weight and within a couple weeks I was a different person! Then a relative suggested maybe I was celiac. I'd never even heard of it! So I went for the blood test/biopsy and low and behold, there was the reason behind my mood disorder, depression, rages, extreme anxiety, exhaustion, muscle weakness, etc etc. sorry for babbling on lol but I'm just floored by it all. I'm trying to be positive that I have a new lease on life but can't help but be sad and angry for all the years I've lost. I'm sure many if not most of you have gone through the same feelings. I guess it will just take some time to adjust and accept.

mamaw Community Regular

very sad  celiac  is  still  not  known very well  but  the last   few  years  things  have been  moving in the right  direction....no human  wants to see another  human  in  such  pain &  anguish...try not  to dwell on the past  but  use  that  angry energy to  grow  with knowledge of  celiac  so  a few  years  down the road  you too  can be  guiding  someone  to a gluten-free  lifestyle...and  you  will be  a new  healthy happy  celiac ....for  future  years to come...

If  you have  family  siblings  or  children please  have  them tested.....

 You are well on  your  way to  growing...  Kiddos  to you...

GF Lover Rising Star

Remember, Celiac is not an allergy.  It's an Autoimmune Disease.

 

Good luck to you.


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

And go to the Newbie 101 thread in the coping section to learn more.

Finallyglutenfree Newbie

Thanks :) :)

Archived

This topic is now archived and is closed to further replies.

  • 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,411
    • Most Online (within 30 mins)
      7,748

    Rebekah1922
    Newest Member
    Rebekah1922
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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.
×
×
  • 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.