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

Un-Diagnosed

JDilly

Recommended Posts

JDilly Newbie
JDilly
Posted

Ten years ago I was diagnosed with celiac disease through positive blood work. No endoscopy. Both mine and my sister's antibodies were off the charts. I've been completely gluten free ever since. My mother went for a gene test and didn't carry either, so I went myself. Negative for DQ2 and DQ8... Am I un-diagnosed? I feel pretty lost. Do I have an intolerance now, or allergy?

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

If the positive blood work was anti-EMA or anti-TTG (the autoimmune tests) and you feel much better off gluten you are almost certainly celiac. Celiac tests do not overlap with wheat allergy tests at all. They're completely different antibodies. I bet you had a lot of celiac symptoms too if they caught it ten years ago.

About 1% of celiacs do not have DQ2 or DQ8 so we haven't got all the genes identified yet. Whatever that mystery gene is, it's clearly in your family!

JDilly Newbie
JDilly
Posted
  • Author

If the positive blood work was anti-EMA or anti-TTG (the autoimmune tests) and you feel much better off gluten you are almost certainly celiac. Celiac tests do not overlap with wheat allergy tests at all. They're completely different antibodies. I bet you had a lot of celiac symptoms too if they caught it ten years ago.

About 1% of celiacs do not have DQ2 or DQ8 so we haven't got all the genes identified yet. Whatever that mystery gene is, it's clearly in your family!

Well, my mother saw us getting sick so fought with the doctor to test us way back then. It was the TTG, and I don't have the issues or lactose intolerance anymore. My doctor thinks it was either a false positive, or a gluten intolerance mimicking the positive on the test, or the phantom gene. But she is pro me staying gluten free, because the current research is still new. I think I should go to Europe, they seem to have a more advanced gene test over there. Vacation time! lol.

Skylark Collaborator
Skylark
Posted

Your doctor is only repeating the incorrect information she was given that all celaics MUST be DQ2 or DQ8. Open Original Shared Link is a big genetic study where they found celiacs without DQ2 or DQ8.

Gluten intolerance doesn't cause positive TTG. That is an autoimmune antibody. It comes up in some other autoimmune diseases but if it went away when you stopped eating gluten it was probably from celiac. As you've probably read, the lactose intolerance happens when the tips of the villi are damaged. A false positive is always possible on labs, but you said both you and your sister were off the charts so it seems highly unlikely.

What tests are they doing in Europe? I haven't run across new genetic tests and that sounds really interesting!

JDilly Newbie
JDilly
Posted
  • Author

Your doctor is only repeating the incorrect information she was given that all celaics MUST be DQ2 or DQ8. Open Original Shared Link is a big genetic study where they found celiacs without DQ2 or DQ8.

Gluten intolerance doesn't cause positive TTG. That is an autoimmune antibody. It comes up in some other autoimmune diseases but if it went away when you stopped eating gluten it was probably from celiac. As you've probably read, the lactose intolerance happens when the tips of the villi are damaged. A false positive is always possible on labs, but you said both you and your sister were off the charts so it seems highly unlikely.

What tests are they doing in Europe? I haven't run across new genetic tests and that sounds really interesting!

Interesting study! I'm right by the city, so I was thinking of making an appointment with Dr. Peter Greene. I have had the antibodies tested twice since after going gluten free (to be sure I wasn't getting any in my diet), and it was negative both times. So they essentially went away when off gluten. My sister has no symptoms other than the high antibodies.

I'm not sure of a source for the methods in Europe, but I heard that they run more of the DQ genes as having the potential for celiacs than the US does.

I feel like I'm just questioning everything now. Like, what if I was reacting to a wheat allergy, instead of milk, and I assumed it was one over the other? You've definitely given me some good information, though. If I do the gluten challenge, I'd monitor the antibodies closely, and do the biopsy like I should have done the first time. But I don't think I'd even want to do that if I start feeling sick again.

Skylark Collaborator
Skylark
Posted

Well, good luck sorting it out. B)

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. Jay Heying
      - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    2. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    3. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    5. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,885
    • Most Online (within 30 mins)
      7,748
    KateFC
    Newest Member
    KateFC
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jay Heying
      Celiac friendly probiotics

      By Jay Heying · Posted

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • 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.