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

Starting Over Gluten Free


imsohungry

Recommended Posts

imsohungry Collaborator

Hi everyone,

I have not posted in many years. I went off the gluten free diet because I was told that I do not have Celiac. Well, three years later the stomach problems are worse than ever. I am staying up at night and sleeping on the couch to avoid waking my husband and toddler every time I need to run to the bath. Sometimes I'm skipping dinner altogether, and I rarely eat when out of the house.

Imodium, aciphex, and lomotil are what I use to get by from day to day.

The ONLY time in my life I have ever had a normal stomach was when I was on the gluten-free diet for a few years. I have decided to start gluten-free again. But WOW I have a lot to remember!!!

Just wanted to reintroduce myself, and I look forward to getting to know you and learning from others on this site again.

-Julie :)


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



Celiac.com Sponsor (A8-M):



Bobbijo6681 Apprentice

Welcome back!!! This is the best place to get information and help! I have found that I have learned more here than from both my GI Dr, and the Nutrionist he sent me to.

Hopefully you will see positive changes soon!!

Reba32 Rookie

remember, just because you don't have diagnosed Celiac, doesn't mean you're not gluten intolerant. Had you continued on eating gluten, it is entirely possible that you could become Celiac if you are gluten intolerant. I have read in many places that Celiac is just gluten intolerance gone horribly wrong.

You'll be back into the swing of things in no time! Not much has changed in 3 years I'm sure. Just don't eat anything with wheat, barley or rye in it. ;)

newgfcali Rookie

I have read in many places that Celiac is just gluten intolerance gone horribly wrong.

Gluten intolerance: :)

Gluten intolerance gone horribly wrong: :angry:

lol!

sandsurfgirl Collaborator

I was told by my OB that I might have celiac and she sent me to a GI. He never tested me and gave me a long list of reasons why I didn't have it. I was so relieved! I mean who wants to have celiac and do that restrictive diet?

Well... my health got worse and worse. I had two horrific pregnancies and my son barely made it out alive when he was born.

I finally ended up with yet another attack that sent me to the ER and the ER doc had celiac! I told him my story and he said to get tested, but regardless of the tests go gluten free. He told me about the inaccuracy of the tests.

I did come up positive for celiac, but if I didn't I was doing it no matter what. I am so sorry some idiot did the same thing to you. Go gluten free and don't look back. You DO have celiac. For me, I make no distinction between gluten intolerance and celiac. It's so easy to miss the damage in the intestines if they biopsy the wrong part. The symptoms and treatment are the same. Call it celiac and move on.

Welcome back to a life of health!

imsohungry Collaborator

Thank you everyone. I hope to be healthy again soon! Wishing you all the best. :)

-Julie

ravenwoodglass Mentor

Hi everyone,

I have not posted in many years. I went off the gluten free diet because I was told that I do not have Celiac. Well, three years later the stomach problems are worse than ever. I am staying up at night and sleeping on the couch to avoid waking my husband and toddler every time I need to run to the bath. Sometimes I'm skipping dinner altogether, and I rarely eat when out of the house.

Imodium, aciphex, and lomotil are what I use to get by from day to day.

The ONLY time in my life I have ever had a normal stomach was when I was on the gluten-free diet for a few years. I have decided to start gluten-free again. But WOW I have a lot to remember!!!

Just wanted to reintroduce myself, and I look forward to getting to know you and learning from others on this site again.

-Julie :)

I am glad to hear you are going back to the diet. The having to get up in the middle of the night thing is unfortunately all to familiar. :angry: I really don't miss those days at all and hopefully they will be a thing of the past for you also very soon.

You'll get the hang of things again soon and we are here if you have any questions. There are a lot more products for us every day and hopefully you will find the changes easier than they were the first time.


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



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

Since you have been off for so long, you need to heal again. Eat clean and simple and avoid gluten free foods for awhile. Don't be surprised if you have withdrawals get sicker for a bit. Most of us do.

psawyer Proficient

Welcome back, Julie! :)

mamaw Community Regular

Hi Julie

Welcome back---- has it been that long? Time sure does fly by... But I remeber you....

mamaw

cyberprof Enthusiast

Thank you everyone. I hope to be healthy again soon! Wishing you all the best. :)

-Julie

I remember you too, Julie. Welcome back!

I hope you feel great soon! Feeling good is the best revenge...or something like that!

~Laura

missy'smom Collaborator

I remember you too. Welcome back! Hope you're feeling much better soon. I seem remember having some laughs with you on a thread about flops and kitchen disasters.

imsohungry Collaborator

LOL...yep, that was me. LOTS of kitchen disasters. ;)

I remembeer you all too!

The people who are helpful, funny, positive, and nonjudgmental are the ones who always stand out in my mind...that goes for any site I'm a "regular" on.

Thank you all for responding to my post. B)

mamaw Community Regular

Julie

I think once you get started again it will all come back to you quickly. And hopefully the cooking blunders will never cross your path again!!!! You know one mistake & one learns for life!!!!

good luck with that!

You will do great just stick to the gluten-free lifestyle so you can be healthy & happy....

blessings

mamaw

missy'smom Collaborator

LOL...yep, that was me. LOTS of kitchen disasters. ;)

I remembeer you all too!

The people who are helpful, funny, positive, and nonjudgmental are the ones who always stand out in my mind...that goes for any site I'm a "regular" on.

Thank you all for responding to my post. B)

I appreciated that thread so much. If you are the one who started it, thank you! I rarely laugh at things and take everything so seriously but I remember getting alot of good laughs on that one and it really helped at the time. I'm happy to say that I've made some good progress since then. I don't keep a graveyard of flops in my garage anymore! :ph34r::lol:

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • 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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.