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. - Wheatwacked replied to Ginger38's topic in Related Issues & Disorders
      16

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - cristiana replied to Ginger38's topic in Related Issues & Disorders
      16

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Tazfromoz replied to Ginger38's topic in Related Issues & Disorders
      16

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

    5. - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

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

    • Total Members
      133,077
    • Most Online (within 30 mins)
      7,748

    JanetteB
    Newest Member
    JanetteB
    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

    • Wheatwacked
      When I had my Shingles attack in 2019 my vitamin D was at 49 ng/ml.  Doctor gave me an antiviral shot and 2 tubes of lidocaine. Sufficient intake of vitamin D and the antiviral essential mineral Zinc can help reduce risk of viral infections.   I've been taking Zinc Glyconate lozenges since 2004 for airborne viruses. I have not had a cold since, even while friends and family were dropping like flies. Evidence supporting the use of: Zinc For the health condition: Shingles  
    • cristiana
      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
×
×
  • 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.