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

Definitely Need Help...

ge0rgette2

By ge0rgette2
in Coping with Celiac Disease

Recommended Posts

ge0rgette2 Newbie
ge0rgette2
Posted

Hi all ;) hope this finds you well ;)

I've been reading the forum for the past few days --- I need help!!!

I've been to my doctor and asked him to help me figure out whats wrong. They tested for celiac/gluten and i'm negative.

I still manage to get sick after eating foods, simple foods even, a plain bagel just sits in my stomach for hoursssss .. I feel bloated,

indigestion, heartburn and just feeling of ick - then after a few hours, it feels like i've gotten ran over by a truck!

I've experienced GERD and indigestion for 1/2 of my life, I'm 42. I can recall being in my 20's and the doctors saying, "here take this pill everyday", well

that everyday is almost 20 years later. I've been on and off PPI's for 1/2 my life and I'm sick of them. I've taken myself off my PPI last week, been 6 days now.

I have been on Nexium for almost 4 years and it's time! I'm taking digestive enzymes and probiotics religiously now for these 6 days. I've also been taking

DGL with my meals, Apple cider vinegar too! I've tried it all, been on it all.. I'm FRUSTRATED!!

My gastro, cardiologist and PCP don't find anything wrong. Only thing Gastro found was GERD and hiatal hernia about 10 years aog.

I truly feel that they are wrong about the celiac ... What else can I do?? Where do I turn?

Find another doctor - one that will listen, most don't listen. They think it's in my mind -- the pain is sometimes soooo bad

that I feel like i'm having a panic attack or heart attack. I have gotten myself so worked up at times from the pain.

Even on an empty stomach ... something is always churning inside.

I'm thinking of just sticking to a gluten free diet on my own and see how I feel.

Sorry to have written so much and bored you :))

Take care! :)

~G

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Welcome!

Since you haven't gotten any satisfaction from your doctors, why not consider the gluten free diet.

You can give it a go for several weeks and see how you feel. It's not an overnight fix and it will take some dedication and time, but you may find your answer.

I was on prilosec for YEARS and no longer have that need.

If you would like some guidance, we are here to help.

Dixiebell Contributor
Dixiebell
Posted

I say try gluten free. My blood test was negative as was my 9 yr old. I wanted to do gluten-free with him so he wasn't going it alone and to see if I could feel better. I feel so much better. I don't sleep all day any more and was able to stop anti-depressants. I had horrible foot and joint pain that nothing would help. My Dr. told me I should see a mental healthcare specialist for my anxiety. I don't have anxiety anymore. I take B complex, fish oil, D and E. I am so thankful for my sons Dr. for telling us about celiac. Ask as many questions as you need to on here, someone will be able to help you find answers.

mamaw Community Regular
mamaw
Posted

You may not have celiac disease with the villi /intestinal damage but you could easily be gluten sensitive to wheat/gluten & even dairy. I also suggest avoiding these foods strictly for at least three months & see how you feel. After that time if you see no change then do as you please but my experience is you will feel mcuh better & wish to continue being gluten-free. But don't cheat or your elmination progress will not be true.

As far as my thinking goes I feel only cows with more then 1 stomach can digest wheat!!!

I also never heard of anyone dying from lack of wheat.......no matter what mainstream doctors tell you.....

blessings

mamaw

sb2178 Enthusiast
sb2178
Posted

Oh no, cows should eat grass, not wheat. Birds should eat wheat.

Yes, do stick to the diet for a while. If that doesn't help, you can do an elimination diet with food challenges to see if there are more or a broader category of foods that are bothering you. I wish someone had had me do an elimination diet earlier in the whole process. Annoying to do, but the clearest results you can get.

GFinDC Veteran
GFinDC
Posted

I agree. If the doc aren't helping then why not try it and find out for yourself? There is also the problem that some people just don't show positive celiac results for whatever reason. And some people have gluten sensitivity which is no fun either. The tests for celiac are not 100% accurate, and are known to give false results sometimes.

It may take a while for you to get used to the diet. Gluten can hide in lots of places you would never expect. A good way to start is to go with a whole foods diet, nothing processed and keep on that for a couple months. Uo also need to verify everything else is gluten free, including vitamins, medicines, drinks etc... A good test is to eliminate things you aren't sure of and try adding them in again after a few weeks.

Plenty of us have problems with soy and dairy also, so eliminating those would be good as well. You can always add them back in after month or so and see how your body reacts. Remember many chips are fried in soy oil also. Salad dressings are also a soy and gluten hiding place.

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.