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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.