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

New To This

jbuckeye

Recommended Posts

jbuckeye Newbie
jbuckeye
Posted

Hi--it's the weekend, and I just got a message from my gastroenterologist that my tTg came back at a 78.1 I'm supposed to follow up with her for "further testing and education regarding a strict gluten-free diet."

I'm almost 46 and have had a life time of stomach discomfort, so this is bittersweet news.

My questions are:

Is there any other reason a tTg can be high besides celiac disease?

The websites I've read are scaring me because of the risk of cancer. How scared should I be?

Thanks for anyone's help.

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

Celiac.com Sponsor (A8-M):


Rikki Tikki Explorer
Rikki Tikki
Posted

I think that is a pretty high number, so I would imagine that you do indeed have celiac. I don't know of another reason to have such a high number. The further testing is probably an endscopy, but there is no guarantee that they will get the part of the intestine that has damage or that they damage is extensive enough at this point to show. Although, if you have had a lifetime of problems it probably will confirm it. Many doctors feel the endscopy is the gold standard for diagnosis. I am not one that feels the endscopy is a necessary test and probably would not have done it if I had actually understood that a high positive on the blood test was sufficient. She might be sending you to a nutirtionist and people have had varying degrees of sucess with one. I have found that I have received the most helpful and beneficial information from people on this board.

If you stay on the gluten free diet then you cut the risk of intestinal cancer quite a bit. I think what you are feeling is what a lot of people feel when first diagnosed, relief that they finally found the cause, usually after many years of being told it's stress, depression and many other diagnosis, but if you are a woman it's usually that it's all in our heads, then comes the daunting task of figuring out what actually contains gluten and then you become quite comfortable with feeling better and getting your life back.

So welcome, and I am sure you will get a lot of help here! If you have any questions, you can ask anything, no matter how personal and someone will have experienced it, we have all been there and done that. Glad you found your way to this site :D

CarlaB Enthusiast
CarlaB
Posted

I'm 43, my biopsy came back negative, but I had been eating gluten-free for a while before it, so I'm just relying on a stool test for antibodies for my diagnosis. That's less proof than you have already.

I, too, have had a lifetime of stomach problems. Once I couldn't even hold a job, and many times I've been to the er for and IV for rehydration. My doc (ob/gyn for my yearly checkup) told me to quit looking for clinical proof because my dietary response is clinical proof.

I've been gluten-free since December, and this is the first time I have felt good all the time in my life! This is not a diagnosis to be scared of (if you eat gluten-free, your chance of cancer is normal), or to dread. You will feel so much better. Once you get gluten-free, you will realize how many other symptoms you have from your reaction to gluten. There are many foods that are gluten-free naturally -- meat, chicken, fish, eggs, fruit, vegetables, rice, pototoes. I would start with those. It's basic and healthy. As you get used to the diet and start feeling better, add to it with gluten substitutes, etc. I still basically eat that way, but tonight I served a gluten-free lemon-vanilla pound cake with frosting for dessert!! It was too die for!!

I don't know the answer to your question about tTg, so I'll save it for someone else. My tTg was 60 on a scale of under 10 being normal. I think it's pretty specific, but there are people here who know a lot more about diagnosis than I do.

Welcome!

jbuckeye Newbie
jbuckeye
Posted
  • Author

Thank you both for your replies. It helps to know there are sites like this where I can go for info. and advice!

lovegrov Collaborator
lovegrov
Posted

Don't know of any other reason for a ttg that high. You've got celiac.

Having celiac does indeed increase the risk of certain cancers (although it drops lower when you stay gluten-free), but the risk stays low even when you're not gluten-free.

richard

jbuckeye Newbie
jbuckeye
Posted
  • Author

Sigh....

Should I go gluten-free immediately, or do I need to wait for the further testing the doctor mentioned? (the biopsy, I guess)

I hate to think I'm "poisoning" myself by continuing to eat gluten so that I optimize results for a test. Especially when my stomach sticks out about 4 feet. <_<

Rikki Tikki Explorer
Rikki Tikki
Posted

Knowing what I know now I would answer that question by:

I will feel much better once gluten free

How soon do I see the doctor?

How badly do I feel I need the biopsy?

My thoughts now would be I don't want to feel bad another day

I couldn't possibly see the doctor fast enough

I don't really need the official 100% diagnosis for several reasons, one I don't need to have it on my insurance record.

Hope it helps

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

Celiac.com Sponsor (A8-M):


jbuckeye Newbie
jbuckeye
Posted
  • Author

This does help, thanks. I will be able to sleep tonight, and I will call the doctor first thing tomorrow.

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
      133,335
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    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.