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

I'm Going To Go Crazy.


1965kid

Recommended Posts

DM11545 Newbie

Like a lot of other people have said 1965, it will get easier. There really is no need to spend a fortune on food because the most wholesome food is generally not that expensive. One of the smartest things that I did was get a large Crock Pot. I like to cook as well but it can get to be a bit much sometimes. The benefits of the crockpot are the time savings and the slow cooking makes me feel good, relaxed and full enough that I am not constantly thinking about what to eat next.... and I know the ingredients are good. I can cook on a Sunday night and have enough food to last for a big chunk of the week. I have a 6 quart crock pot and I fill it with potatoes, onions, gluten free beef broth (from wal mart), chicken, carrots, rice flour (to thicken) and many other good things and I let it cook for 10 hours. It's a much healthier and safer option than eating out especially since you are just getting started.


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



Celiac.com Sponsor (A8-M):



NoGluGirl Contributor

Dear Susie,

You are braver than me! I was too paranoid not to get new cooking utensils and cookware after I found out it was advised. This is a to each their own situation. :) I get violently ill from a microscopic speck of gluten, so I tend to be OCD about this stuff. However, it gave me a great reason to get some of those great food storage containers they came out with that were new! :lol: By the way, this is off topic, but I wanted you to know I am so glad your dog is alright! Patti told us. What a relief!

Dear debmidge,

The family reacting the way they do (as if you are crazy) is why I do not go to family events and eat. Risking a reaction is not smart on my part. My brother has gone out to eat with success I am happy to say. I am not that brave. People who do not have this disease do not know the protocol that must be followed. I hate having to go through a ridiculous amount of effort just to eat a basic snack or meal! I have no choice, though. My parents refuse to follow a gluten-free diet, and I am stuck living here. :(

Dear DM11545,

I was all excited because I thought my crockpot would make things easier. It turns out, it does not even work! :o There was a recall on the model I have and some others. I need to contact the manufacterer and see if I can get a replacement. Pot roast with gluten-free egg noodles would be delicious!

Sincerely,

NoGluGirl

DingoGirl Enthusiast
Dear Susie,

You are braver than me! I was too paranoid not to get new cooking utensils and cookware after I found out it was advised. This is a to each their own situation. :) I get violently ill from a microscopic speck of gluten, so I tend to be OCD about this stuff. However, it gave me a great reason to get some of those great food storage containers they came out with that were new! :lol: By the way, this is off topic, but I wanted you to know I am so glad your dog is alright! Patti told us. What a relief!

Hi Jin! :) thank you, my little Annie girl is doing well.......but mommy is broke from vet bills!!

You know, one thing I forgot to say is that I do live alone, so no one contaminates my cookware - that is a hugely important factor. I, too, in the first year would become quite ill for half the next day from a speck of gluten - now it's not taht way any more......my intestines don't suffer but my brain does. :wacko: so I still am quite careful.

Sometimes, I think I consider the size of the gluten molecule facing ingestion - a bread crumb, for example, is completely toxic and sizable enough to cause a horrid reaction in the gut.....but any gluten haze or residue from a scrubbed pot or pan doesn't seem capable, to me, of causing damage.....I guess in some people it can, though. I am using the same colander, for example, just soaked it in a big pot, scrubbed and scrubbed it to death with a bristle brush, ran it through the DW, and never have had a problem.......

MedicMan Newbie

Thank you all for sharing your experiences.

I'm a brand new Celiac diagnosee, having spent the last year in and out of hospitals, world renouned teaching hospitals, without any success and alot of medicine. I was diagnosed with around 8 different diseases/syndromes, all of which are typical symptoms of celiac disease. Thanks to my wife and google, and a new family practice physician that was willing to actually listen and learn, who provided the analysis we requested. I'm now two months into my new life style, with a couple of cross contamination incidents and subsequent suffering. Suffering simply doesn't seem like a big enough word to encompass 3-4 days of pure misery after each incident.

I discovered this community today. I even left work early to come home and read. This is extremely difficult, I dream about Big Macs. I went with my wife and children to Sam's Club the other day. While there seems to be a great support for Gluten Free labeling at Walmart, especially their Great Value brands, I became very frustrated at seeing all the things I can't eat.

It is a blessing to know how to control my suffering, and that all 8 of my diseases (ha ha) are now resolving. It is wonderful to toss all of the medications and know that some self control (something I'm getting used to) can solve alot of my issues.

It is also great to know that I'm not alone in this fight.

Thank you again,

a new fan,

MedicMan

Ursa Major Collaborator

Hi 1965kid and MedicMan, and welcome to our forum!

There are some things that haven't been said yet that are important, so I'll jump in with those.

It is always wise to eliminate all dairy for the first while of going gluten-free, because the tips of the villi will produce the enzyme lactase to digest dairy, and when the villi are blunted, you will get sick from dairy. Many people won't start feeling better on the gluten-free diet until they cut out dairy, and often, soy.

After a few months you can try dairy and soy again and see if you react to them. Many of us won't be able to have either for life.

And yes, you really need to get rid of all personal care products that contain gluten and replace them with gluten-free ones. Check your shampoo, conditioner, toothpaste, soap, lotions etc. for things like wheat germ oil, barley extract, oat extract (aveeno).

Make sure your vitamins, medicines etc. are gluten-free. Many are not. Often vitamin E is made from wheat germ oil, and wheat starch is frequently used as a filler in medicines and vitamins.

1965kid, you need to have your daughter tested for celiac disease as well. If she has it, you don't want her to get sick, too. And it would be much easier to have a gluten-free household. By the way, she sounds like a great kid, who has a lot of common sense and thinks positive (which also tells me that you're a great dad).

What most doctors don't know is, that a lot of people with celiac disease are overweight. The reason is, that malnutrition can go either way, it can cause weight loss OR weight gain.

You would do well to stay away from all the starchy specialty gluten-free foods for now, one reason being that you'll automatically lose weight if you stick to basic foods only (with the occasional treat being thrown in, of course).

Another piece of advice: Be careful, but don't become paranoid. If you stress too much about cross contamination etc., you will not be able to enjoy life!

It is inevitable that you will get glutened a few times until you get the hang of the diet. Don't beat yourself up when it happens but rather learn from your mistake, make sure you remember what the cause was so you don't do it again, and move on.

DingoGirl Enthusiast

Welcome, MedicMan. Now why don't you go and tell all of the so-called experts at the teaching hospitals what EXACTLY is wrong with you?? ;) Not that likely they'd listen, unfortunately - but maybe a letter would help to open their eyes a bit.... <_<

Ursula's advice is very good. We all tell newbies to this condition to calm down and not freak out - - it's hard not to in the beginning, when we realize how emotional and social food really is. But you WILL get the hang of it and it won't be so hugely traumatic, as it is in the beginning. It just becomes second nature.

And remember, foods in their purest forms don't need labels.....meats/chicken/fish/fruits/veggies. It is a good idea to cut out all if not nearly all dairy.....I know was able to reintroduce it a few months later with no problems.

Hang in there. ;)

HouseKat Apprentice
I was on the phone with my daughter while ago. She suggested we get a steamer and start steaming veggies. I said that sounds great, "and we could get some of that boil in the bag rice to put them on". Then I thought. Oh no, can I have that kind of rice? What brands of rice are Gluten free?

I bought a rice steamer that I can also use to steam meat and veggies in and it can also be used as a crock pot. Best thing I've bought so far.

Kate


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



Celiac.com Sponsor (A8-M):



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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.