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

Gluten Free Trial For Celiac Diagnosis?

Spunky007

Recommended Posts

Spunky007 Apprentice
Spunky007
Posted

Hi all-

I'm new here, and I posted this topic on a runners website discussion board, but I thought a site like this might provide me with more information!

Here's the short version of my story/symptoms:

I've struggled with "stomach issues" for years now, and I've also had trouble gaining weight despite being underweight. I struggle to eat 3000+ calories, but it's so hard to "just eat" when I'm always uncomfortable and feel like I have to go to the bathroom constantly [both ways].

These are my strongest symptoms:

-constipation and the opposite [always going, but have trouble going]

-rectal bleeding

-delayed puberty

-no weight loss, but underweight

-lack of period

-muscle cramps

-abdominal distention, discomfort

-flatulence [all the time, no matter if I eat gassy foods or not]

-Dry Skin

-Constant feeling as though I need to use the restroom, and never feeling

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

Celiac.com Sponsor (A8-M):


Phyllis28 Apprentice
Phyllis28
Posted

If you plan to have a biopsy you need to continue to eat gluten. A biopsy can still be negative at this point because celiac can be patchy or you could be gluten intolerent only. One advantage to a biopsy is the doctor can look for other diseases at the same time.

A gluten free trial is a valid way to determine if gluten is making you sick. A biopsy after being gluten free will be negative. I never had a biopsy. I got better on a gluten free diet. That was proof enough for me.

I would suggest a gluten/dairy free diet to begin with. Eat only naturally gluten free foods. If the results are good add back dairy and processed foods slowly.

itchygirl Newbie
itchygirl
Posted

I did the unnatural totally processed route- :lol: I drank gallons of Ensure Plus when I was first going gluten free. Its got no gluten and no lactose. And I did not have to think about what to eat, which is hard enough for me on a good day....Ensure and bananas...

Has your doctor sent you to an endo or a metabolic disease expert yet?

Spunky007 Apprentice
Spunky007
Posted
  • Author

Yikes...should I be avoiding dairy too? I thought milk WAS naturally gluten free! :o

I already feel like I can barely eat anything [probably because Im a cereal, snack, carb addict] and I have yogurt and cottage cheese nonstop! oh no...

It doesn't help that I eat a lot and like convenience!

It will all be worth it if this turns out to be the problem though, so I want to make sure and do it right!

I won't be getting a biopsy any time in the near future. I don't have insurance right now, so all medical service is cut off. My Dr. WAS talking about sending me to an endo/metabolic specialist...so perhaps in the future. But for now I can't wait, this is a ridiculous way to live and getting worse.

Spunky007 Apprentice
Spunky007
Posted
  • Author

One other Question-what is the difference between gluten intolerance and celiac?

Phyllis28 Apprentice
Phyllis28
Posted

Dairy is naturally gluten free. It is your choice to eliminate dairy or not and in what quantities.

It is my understanding, from other posts, that the tips of the villi is where dairy is digested. If your villi have been flattened by celiac then dairy could cause problems until healing takes place. I eat dairy without any problems.

Someone else will have to comment on the difference between celiac and gluten intolerance.

kbtoyssni Contributor
kbtoyssni
Posted
-Do you think it is possible that I am suffering from Celiacs, despite negative bloodwork?

-Is a gluten free trial a good next step for me?

If so:

-Starting yesterday I am aiming to go 3 weeks gluten free, until the end of march, is this sufficient time to notice a change?

-any tips I should know about for going gluten free that might mess up the detox/healing/results?

You certainly could be celiac. Bloodwork isn't exactly know for it's accuracy. There are many false negatives. It takes a long time for the antibodies that build up in the intestines to leak out into the blood so positive blood work means you're really sick. It's certainly worth trying the gluten-free diet (but do remember going gluten-free pretty much guarantees future negative blood test and biopsies).

Three weeks may be sufficient. If you have other intolerances you may not notice a change, though. I gradually got better over the course of a few weeks and didn't notice until I ate wheat again. That was when I knew I had an issue.

Watch for contamination: toasters, condiments that have been double-dipped into, wooden spoons, pet food, lotions. And eat natural foods like meat and veggies and rice - they're easy to prepare and don't have as many ingredients to check!

Yikes...should I be avoiding dairy too? I thought milk WAS naturally gluten free! ohmy.gif

I already feel like I can barely eat anything [probably because Im a cereal, snack, carb addict] and I have yogurt and cottage cheese nonstop! oh no...

It doesn't help that I eat a lot and like convenience!

Milk is naturally gluten-free, but the tips of your villi is where lactase is produced. If your villi are damaged you won't be able to digest lactose well until you heal. So many choose to eliminate dairy at first. And remember that gluten is an addictive substance to celiacs. You may be a carbaholic now, but in time your addiction will decrease, and you won't have those cravings.

One other Question-what is the difference between gluten intolerance and celiac?

I feel that gluten intolerance is a spectrum with celiac being at the very end when you have a lot of damage. The treatment is the same - a strict gluten-free diet so I never bother too much with the difference. There are some who will say that there's the gluten intolerance to celiac spectrum and a separate just gluten intolerance spectrum that makes you feel sick when you eat gluten but isn't autoimmune and won't cause the same kind of long-term damage. Not a lot of research in this area so who knows.

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

Celiac.com Sponsor (A8-M):


The Lovebug Rookie
The Lovebug
Posted

Hi Spunky,

Your symptoms certainly sound like they could be celiac. The Mayo Clinic website says that positive response to a gluten-free diet should in-and-of-itself be diagnostic for Celiac. I went gluten free after reading about Celiac online, and my symptoms subsided within about 24 to 48 hours. So I would think that a 3 week trial is plenty of time. If it IS celiac, and you go gluten-free, you'll probably know almost immediately.

Some doctors insist on doing tests while others (many of the experts in the field) don't. The gluten-free diet is probably the most specific, non-invasive and inexpensive test you can do.

You mention lack of a period, which can be Celiac related but can also be a result of running, can't it? It seems to me I've heard that avid runners often stop menstruating.

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):

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.