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

So Frustrated!


Juliette

Recommended Posts

Juliette Rookie

Hi everyone,

I'm feeling really down about everything today. I guess I just need to talk to people who actually understand. I'm sorry if it seems like I'm ranting.

I'm six weeks gluten-free. At the moment, I'm only eating

Plain fruit

Plain vegetables

Rice

Potato

Nuts

And my stomach is still bad. I still feel unwell, and although some of my physical symptoms have gone down (shaking hands, headaches)my digestion is worse than it was before I started the diet. How is that possible?

I have been taking vitamin supplements (Iron, Calcium, Vit C etc) but now I've stopped to see if it helps my stomach calm down a bit. I've been off dairy for about two weeks now, even though I never saw it having any negative impact before. I'm so frustrated that I don't know what is helping my body, and what's hurting it, and I'm worried that I'm never going to be able to eat anything with any variety, or flavour, again.

I have an appointment with a specialist, but it's not until July. And at the moment, I feel so fed up and frustrated about not knowing anything.

I'm sorry for ranting, I just feel so lost. I've had to postpone my finals because I was too ill to attend, and I wanted to be able to go to my end of year prom but now I'm scared I won't be able to.

Did anyone else suddenly find it difficult to digest processed or complicated foods after starting the gluten-free diet, and did the difficulty go away or improve over time?


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



Celiac.com Sponsor (A8-M):



rgarton Contributor

Hey sorry for your struggles at the moment! I can totally relate though! And don't say sorry for ranting! It feels good to have a rant sometimes!

You basically are on the diet I am on, and was on as soon as i went gluten-free. I didn't notice any improvement until 5 months after going gluten free. I envy the people that feel better after a week! I guess it depends on the person. I would check your vitamins to make sure they are gluten-free, mine weren't! And carry on taking them, they will only help you heal quicker.

Its such a shame about your finals, and hopefully you will start to heal for your prom, but don't put too much stress into it because it'll only make your tummy worse! Maybe try some relaxation exercises to reduce stress and anxiety? And make another app with your doctor for any suggestions they can make?

I can feel your frustration, even after 5 months im still hugely frustrated but i know it will get better eventually! I have been literally poisoning my body so i guess i have to go with the flow, let it do it's thing.

bonnie blue Explorer

Juliette,

We are here for you sweet girl. I noticed potatoes are on your diet, I had alot of issues with potatoes, sometimes the starches can be hard to digest. I hate to see you go off of the vitamins, you didn't list B12, that was like a miracle pill for me. I am on the Spring Valley sublingual dots 500 mcg a day, they dissolve under your tongue for quicker absorption. Also I meditate daily now, it may seem silly to some but I just put myself in a quiet space and just concentrate on me and my hopes for a healthy body and mind.

I do hope you can go to your prom, I know you are having a hard time now, but know that we are all here for you, sending you out big hugs, keep us updated, and take care. B)

Juliette Rookie

Thank you for your advice. I appreciate any help I can get, and it's good to know that what I'm experiencing is not unusual, even if it is horrible.

I'm sorry to hear that it took you five months until you felt better...I hope you will be at full health soon :)

Katrala Contributor

Are your veggies canned, raw, frozen?

I was surprised to recently find out that some brands for canned veggies (green beans being the first I noticed) had traces of wheat, etc.

I'd also check the vitamins to be sure they are safe.

brendygirl Community Regular

Try to remember-it's the rainy days that help us appreciate the sunny ones. Maybe reading gluten free blogs could help validate your feelings and give you eating ideas. Sometimes, your mind will jump to plenty of excuses of why you can't or why the ideas are ridiculous, but try to focus on the "can" and the "I'll try" attitude.

Yes, I had a hard time eating the gluten free baked goods and stuff with the flour blends and guar gum (which is a natural laxative!) and xantham gum and all that stuff. Celiacs often suffer from lactose intolerance for a variety of reasons, so maybe avoid dairy at first?

Some quick food ideas that come to mind-that have pure ingredients with minimal processing, or have always been gluten free without substituted ingredients:

Smoothies (I even eat Jamba Juice) If you don't want dairy, use a gluten-free soymilk or rice milk or almond milk

apple with peanut butter and Udi granola

popsicles

Craisins, make your own gluten-free trail mix

potato chips or tortilla chips (just corn, oil, salt-even baked ones)-make nachos with soy cheese or just salsa

soup-some Progresso soups are labeled gluten free and they just have vegetables and gluten free broth

eggs, egg salad, deviled eggs, omelettes

tuna, tuna salad

jell-o, M&Ms (lots of flavors)

cereal- Rice Chex, gluten free health cereals- I like Nature Valley Corn Flakes gluten free...alone or with milk substitutes above

quinoa- it's a seed, so it shouldn't be that hard on you, especially if you tolerate rice- I cook in Swanson Chic Broth and add peas

brown rice pasta- the ones I use only have brown rice and water as ingredients, so if you can eat rice...

Try a variety of fruit- blackberries, kiwi, starfruit, pineapple, guava, mango, etc. Put on skewers like a fruit kabob

Corn tortillas- buy the fresh kind with just corn masa flour and water and salt- top with black beans, soy cheese, salsa, etc.

Hummus, salsa, pico de gallo, and other gluten free toppings

There's also a list online called 50 gluten-free Things You Can Eat Right Now

This has been described as the toughest diet there is, and I've read it takes 3 years to get a good handle on it, so be patient with yourself. It's a journey. You will buy expensive things that you end up throwing away, spend lots of time making things and shopping for things that you won't like. Lots of gluten free stuff doesn't have preservatives, so it goes bad quickly, too. You may even "poison" yourself unwittingly. It's a long road, so educate yourself and be patient.

SPOIL YOURSELF in ways that you can. Buy fancy bath stuff, go to the cooking store and buy a garnishing tool set (mine was $7) to make the foods you can eat (like fruit) look special and appetizing, buy yourself some flowers, start an herb garden to use on your salads, buy new dishes, toaster, utensils, so you know it's "safe". Call yourself and your diet "special" and others "regular" (not normal) or mundane or plain or run-of-the-mill or white bread. Change your language and change your thinking. Attend a support group (ask at your doctor or search online or on this site). I learned so much going to a cdf celiac convention and found so many products and resources. Do a celiac 5k or run and raise money and awareness for your new cause! Be glad you don't need shots or medicines or dialysis, just a diet! Dump your shampoo with hydrolized wheat protein and questionable makeup and buy new, gluten free ones! Express your feelings, coin fun terms for your new circumstances (my friends call me silly-as$, a play on the word celiac), write a poem or journal about it. And on and on!

Best wishes to you on your path...

shadowicewolf Proficient

raw fruits and veggies can irritate you further when healing. Also add some sweet potatos to that list (something i can't help but reccoment enough).


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



Celiac.com Sponsor (A8-M):



Lori2 Contributor

It seems to me that your diet is almost totally carbs. Your body won't function well without proteins. You are getting some fats in the nuts.

eatmeat4good Enthusiast

I couldn't do any fruits or vegetables for a long time...like 2 months.

I ate chicken breast, nuts, a little banana, beef cooked well in broth.

Protein is very healing. I tolerated all protein except eggs...don't know why.

I'm at 7 months and only really upped the vegetable and fruit intake in the last few weeks as I was able to tolerate it.

I agree with minimizing starches, although I had to have a little rice to go with the meat.

It takes a while for your intestines to regenerate. Try using more protein, it should help things tremendously...at least it did for me.

Juliette Rookie

Thank you so much for the advice everyone.

I will definitely look into increasing my protein intake, and I will try and find a way of keeping my diet varied and interesting without over-complicating it with processed foods.

It's amazing how many times I've said 'I just want to be better.'

I thought, at the beginning, it would just happen. I guess I'm just disappointed that it hasn't worked out that way.

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 Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    2. - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    4. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

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

    • Total Members
      133,097
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.