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

Celiac Testing

Fbmb

Recommended Posts

Fbmb Rising Star
Fbmb
Posted

Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it. 

Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia.

My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week.

Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it.

Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?"

Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high. 

I'm just freaked out. 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading

cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you are so stressed!  But think about it.  Even if you should receive a Crohn's diagnosis, you just going to deal with it.  Chances are, with a celiac family history like yours, it is more likely to be celiac disease.  Try not to worry.  Think of the positive, you could be catching a relatively early diagnosis.  Perhaps, you can help your sibilings and children too.  Not all celiacs have symptoms.  

 

 

Fbmb Rising Star
Fbmb
Posted
  • Author

I guess I feel like if it is celiac that's ok. I know so many people with celiac and I feel ok about it. But anything else terrifies me. I just read online that elevated blood tests can be from crohns and not necessarily  celiac. But I don't know how elevated they mean. I also don't know how common that is.

I don't have symptoms of crohns aside from the intestinal issues. No pain, no elevated white count, no bleeding or anemia, my weight is stable. I just didn't know if the ttg-iga can detect crohns rather than just celiac. 

I do think that my weird hives that I get upon scratching or brushing up against something could be related to celiac, if that's what I have. My PUPPP rash was miserable. I never related it to gluten and I don't know if other women with celiac have experienced that. My anxiety started right around the same time that my dermatographism started. I have keratosis on the backs of my arms and on my thighs. They come and go. After my last pregnancy the backs of my arms felt like sandpaper. I can't help but wondering if it's all connected. 

kareng Grand Master
kareng
Posted

I see no mention of the use of tTg tests to indicate the presence of Chrohns

Open Original Shared Link 

 

 

Fbmb Rising Star
Fbmb
Posted
  • Author

Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.

cyclinglady Grand Master
cyclinglady
Posted

Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  

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

Celiac.com Sponsor (A8-M):


Fbmb Rising Star
Fbmb
Posted
  • Author

Thanks for the advice :) I keep telling myself that if I have to have some kind of weird health issue I would prefer celiac over so many other things. I'm assuming it's what I have, since there are no other reasons why my number was so elevated. And with my good blood work maybe I caught it early before it starts to wreak have on my body. I'm looking forward to talking with the GI, and in the meantime I'll do my best to relax and stay away from Dr. Google. 

GFinDC Veteran
GFinDC
Posted

Hi,

The normal process of diagnosing celiac disease is to do blood antibody testing first, and then do an endoscopy to check for small intestine damage characteristic of celiac disease.  You should not go gluten-free until all testing is completed.  There are several more antibody tests beyond the ttg IGA that can and should be done.  The DGP IgA and DGP IgG are 2 for sure that are specific to celiac disease.  They test for IgA and IgG antibodies to gliaden, the specific protein in wheat that celiacs react to.  Celiacs also react to barley and rye proteins but they don't commonly do tests for antibodies to those proteins.

There is a thread called Newbie 101 in the coping with forum sub-section that has some good information.

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      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.