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 Celiac With Little Success


kblair

Recommended Posts

kblair Newbie

I was diagnosed as Celiac with a biopsy in June 2009. Since then I've had some good days, but it seems I have more bad days. I'm having trouble introducing new foods into my diet. I'm eating only natural organic food that I prepare, however, every couple of days I try to add something new. For example, cherries, avocados, and gluten-free peanut butter have cause me hours of gastric pain and sleepless nights. My symptoms are similar to getting gluttened.

Did anyone else out there in the beginning have trouble with food types even though they were gluten free? Any ideas how long it could be before I start feeling "normal" enough to eat other foods besides the 10 things I only eat now?

Crazy in SD,

Kathleen


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



Celiac.com Sponsor (A8-M):



JillianLindsay Enthusiast

Welcome to the forum Kathleen :) I hope it at least feels good to have a diagnosis so you can get yourself on the path to healing.

And yes, many people have problems with new foods when they first go gluten-free. Many people need to avoid dairy, high-acidic foods (cherries, tomatoes, etc.) and highly processed foods (perhaps the peanut butter?). Sticking to a very natural diet is the right idea. Yes, you can slowly add them back in and test them out once you start healing. I was told to wait about 6 months until my tga levels were down in order to allow my body (and tummy) time to heal. Everyone heals at a different rate and in different ways though, it's a bit of trial and error.

I had to give up my morning coffee (for now) :(

Also, we do go through a gluten withdrawal because our bodies have ingested it for our entire lives and it is a bit of a shock to the system to go off cold turkey, even though it's the best thing for Celiacs health-wise :)

I would look at other ways to expand your diet, while still eating natural foods. There are amazing recipes online and gluten-free cookbooks out there to help you get some variety into your meals without experiencing pain afterwards!

Good luck,

Jillian

I was diagnosed as Celiac with a biopsy in June 2009. Since then I've had some good days, but it seems I have more bad days. I'm having trouble introducing new foods into my diet. I'm eating only natural organic food that I prepare, however, every couple of days I try to add something new. For example, cherries, avocados, and gluten-free peanut butter have cause me hours of gastric pain and sleepless nights. My symptoms are similar to getting gluttened.

Did anyone else out there in the beginning have trouble with food types even though they were gluten free? Any ideas how long it could be before I start feeling "normal" enough to eat other foods besides the 10 things I only eat now?

Crazy in SD,

Kathleen

ksymonds84 Enthusiast

Welcome Kathleen! I felt wonderful for 4 months then started noticing dairy giving me a problem so eliminated that. I also suspected Soy because the milk made me miserable but I didn't eliminate all soy. So I had good days mixed in with days where I thought what the heck....gluten free but what set me off stuff. Now at almost two years I found IgA and IgG blood test to soy so after eliminating ALL soy, I feel the best ever! I've also healed enough that I can have hard cheeses and butter but still have problems with regular milk. Even if you don't have other food intolerances, it can take time to heal and everyone is individual on the amount of time that they need. Keeping a food diary helped me trace to what foods could have had gluten me ect. Again, Welcome, this is the best site for learning about celiac!

ang1e0251 Contributor

The food journal is always a good idea to help you get a handle on other sensitivities. In the beginning, I could not tolerate any fruit and had a hard time digesting alternate flours. I was already lactose intolerant so it just seemed more par for the course. But I now can eat any fruit and do, dairy didn't really change for me and I have given up most grains except occasional treats.

I feel better than ever even though my diet seems repetitive. I've just challenged myself to find new ways to prepare these foods and I keep trying new items now and then.

You are still new to the diet. I think your food journal will help you narrow down your problems so you can expand your food selection.

ben-s Newbie

I know how you feel. Coming up to almost a year since I went to see the doctor about the symptoms and I'm still having trouble coping, not only in terms of what I can and can't eat but emotionally, feeling hopeless that I can't even go out and have a proper meal without having to be so careful.

Anyway, others have given much better advice and support than I could. All I can say is just keep trying, for the sake of your physical comfort.

ang1e0251 Contributor

It's natural to have a mourning period over losing a part of your life. But I believe you should set yourself some limits. Allow yourself to feel sorry about losing gluten and all that goes with it for a period of time, then tell yourself, this is it! Now I'm going to pick myself up and look at life from a positive outlook. It's not easy and at first you just have to go through the motions but before you know it, thinking positive will become natural and you will be able to embrace this healthy new life. Talking to others in a supportive situation really helps.

What would you say to an amputee who was feeling sorry for himself? His life is a challenge but doable. I think our celiac lives are a challenge but doable, too. I choose to live my life to the fullest I can. I'm not going to let a little diet change keep me down. I want calm and happiness in my life and I work at it every day.

Archived

This topic is now archived and is closed to further replies.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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.