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Finallyglutenfree

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Finallyglutenfree Newbie
Finallyglutenfree
Posted

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?

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mamaw Community Regular
mamaw
Posted

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
MsMarginalized
Posted

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
Jays911
Posted

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
Finallyglutenfree
Posted
  • Author

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
mamaw
Posted

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
GF Lover
Posted

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

 

Good luck to you.

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bartfull Rising Star
bartfull
Posted

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

Finallyglutenfree Newbie
Finallyglutenfree
Posted
  • Author

Thanks :) :)

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    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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