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

My Celiac Id?


Wheat Wacker

Recommended Posts

Wheat Wacker Rookie

Has anyone tried this My CELIAC ID ad thats on this site?? It seems logical and is alot cheaper then an endoscopy matched with blood tests. At least a stepping stone to those tests?

I was diagnosed by both blood tests and endoscopy in March, sure it took me a few months to really figure out what gluten free was but I have been a super strict for the last three or more months, have not eaten anything I have not prepared my self and know is gluten free, yet I still suffer abdominal pain and bloating.

I think I might take the Gene test as this will confrim weather I could have been mis Diagnosed?

And idea's or advice,

Cheers


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

The gene test is interesting, but not diagnostic. The genes they test for are associated with celiac disease, but not shown to be solely responsible for the disease. Additionally, you can have celiac disease without having any of the known associated genes.

Skylark Collaborator

The endoscopy is completely diagnostic, especially with supporting blood tests. Your doctor actually saw the villous damage in your intestine and nothing does that but celiac disease.

A lot of celiacs don't tolerate dairy very well. You might try seeing if removing dairy from your diet helps the remaining pain and bloating.

Wheat Wacker Rookie

I have tried to cut dairy out for prolonged periods but I really see no differences. I almost feel like I should start eating wheat again to see if I get sicker or something? The gluten free diet doesn't seems to work this far, I'm going to go back to the doctors again.

The doctor that Diagnosed my was un convincing, about to go on vacation, and told me after my endoscopy that if he didn't see my blood tests he wouldn't think that I had Celiac. but after the lab reports came back from the endoscopy he said I had celiac, almost feel like maybe it was just the easy diagnoses?

Thanks for the advice

Skylark Collaborator

If you were Marsh 2 or worse, my understanding is that there is pretty much nothing else that causes that particular kind of damage in combination with the blood tests. There is not necessarily anything to see on endoscopy before the path report comes back, as the damage can be only microscopic.

I think I read somewhere that inflammatory bowel diseases like microscopic colitis can show a combination of Marsh 1 biopsy (intra-epithelial lymphocytes with no damage) and anti-TTG. You should talk to a GI about that, as I've only been reading about celiac and not other bowel diseases. Seems like that would have been caught on endoscopy too.

GFinDC Veteran

You could have another condition in addition to celiac disease. There is no rule preventing someone from having multiple health issues. If you do a search on "celiac associated condition" or "celiac related condition" you can find lists of other diseases that celiacs tend to get more often than other people get them. Higher risk in other words. Some people are first tested for R. arthritis, or lupus, or fibromyalgia, thyroiditis etc, and then along the way the doc also tests them for celiac, and finds they have it also.

It could also be that you are like many people here that have additional food intolerances beyond gluten. Soy, dairy, nightshades, corn, eggs, etc, etc, any of which can cause GI symptoms and other symptoms too.

You could get your doc to do another series of blood tests for the antibodies. Not to rule out celiac, but to confirm you are actually staying glutenfree and recovering. Some people like to do this every so often as a progress check on how they are recovering and also how well they are maintaining their gluten-free diet.

Once you have celiac though it doesn't go away. Your body will stop pouring out tons of antibodies after a while of being gluten-free, but it doesn't forget how to make them. So new exposures to gluten will kick the autoimmune process right back in gear.

The usual things to double-check for gluten are vitamins, meds, drinks, shared condiments, toasters, pet food, cosmetics/shampoos etc.

Also the time it takes to heal varies. Some people have less damage and heal faster, others may take longer for whatever reason. Other food intolerances can make you feel as bad as gluten does. That would be the first thing I would suspect, if you are sure you are strictly glutenfree.

bincongo Contributor

Has anyone tried this My CELIAC ID ad thats on this site?? It seems logical and is alot cheaper then an endoscopy matched with blood tests. At least a stepping stone to those tests?

I was diagnosed by both blood tests and endoscopy in March, sure it took me a few months to really figure out what gluten free was but I have been a super strict for the last three or more months, have not eaten anything I have not prepared my self and know is gluten free, yet I still suffer abdominal pain and bloating.

I think I might take the Gene test as this will confrim weather I could have been mis Diagnosed?

And idea's or advice,

Cheers

____________________

I don't think I would waste my money on another test because the endoscopy is the "gold standard" for testing. I would ask for a copy of my endoscopy results(the biopsy) and even the blood tests if you haven't done so and really read what it says. You can ask people on this site how to interpret the results.


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



Celiac.com Sponsor (A8-M):



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
      133,332
    • Most Online (within 30 mins)
      7,748

    Nicolah
    Newest Member
    Nicolah
    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)

  • 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.