Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Disease Testing?

Emily22

Recommended Posts

Emily22 Newbie
Emily22
Posted

Hello everyone!

I am new to this forum and I have been recently diagnosed with gluten sensitivity. I had a genetic test done and stool testing as well. The thing I am confused most about is what my results mean exactly. My fecal Anti-gliadin IgA was 49 units, fecal Anti-tissue Transglutaminase IgA was 11 units. My interpretation of this was that I have an autoimmune reaction to transglutaminase, secondary to dietary gluten sensitivity. What does this mean? Also, I have two copies of a gene that are turned on and they are: HLA-DQB1 Molecular analysis, Allele 1 0303 and HLA-DQB1 Molecular analysis, Allele 2 0502. So although I do not have the main HLA-DQB1 0201 or 0302, I still have two copies of a the gene, just not the main genes. My question is what does all of this mean? I don't really understand it. Recently going gluten free I have experience my period being 2 weeks late and I have not got mine this month yet (already 2 weeks late), and a lot of other problems. I was diagnosed in May with Chronic Fatigue and Lyme Disease. If anyone has any insight into any of these things I would greatly appreciate the help. Thank you.

Emily

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Hi, Emily and welcome.

I'm a little confused. Is your only "diagnosis" from Enterolab or was a doctor involved?

Enterolab tests are only suggestive, not diagnostic. There are antibodies to gluten in your stool, meaning that your body might recognize gluten as foreign and react. A lot of people who have the anti-gliadin antibodies feel better if they don't eat gluten, but not everyone. You also have a little anti-tTG in your stool which means a doctor should test you for celiac, but also for inflammatory bowel diseases like microscopic colitis and Crohn's if you have a lot of GI symptoms. You should get any celiac testing before you go off gluten if you want accurate results. Then give the diet a try since it might help you.

The genetic test is not for genes that are "turned on", but rather which ones you have out of a set of about 20. Everybody has two HLA-DQB1 genes, one from each parent. There are three that are very strongly associated with celiac, which you don't have. That doesn't rule out celiac at all, as either of the genes you do have sometimes turn up in celiac disease and people with gluten sensitivity.

Hope this helps a little.

sb2178 Enthusiast
sb2178
Posted

Yes, definitely get official testing. Blood work and/or biopsy. BUT, be aware that false negatives are pretty common, particularly if you eat a "gluten light" diet. After your testing, try eliminating gluten and dairy to see if that helps with your symptoms. Official testing is helpful in knowing how to direct your care in the future and to be sure that you take the diet seriously.

The diet is really the best test, as sensitivity doesn't necessarily show up in blood work.

Emily22 Newbie
Emily22
Posted
  • Author

Hi, Emily and welcome.

I'm a little confused. Is your only "diagnosis" from Enterolab or was a doctor involved?

Enterolab tests are only suggestive, not diagnostic. There are antibodies to gluten in your stool, meaning that your body might recognize gluten as foreign and react. A lot of people who have the anti-gliadin antibodies feel better if they don't eat gluten, but not everyone. You also have a little anti-tTG in your stool which means a doctor should test you for celiac, but also for inflammatory bowel diseases like microscopic colitis and Crohn's if you have a lot of GI symptoms. You should get any celiac testing before you go off gluten if you want accurate results. Then give the diet a try since it might help you.

The genetic test is not for genes that are "turned on", but rather which ones you have out of a set of about 20. Everybody has two HLA-DQB1 genes, one from each parent. There are three that are very strongly associated with celiac, which you don't have. That doesn't rule out celiac at all, as either of the genes you do have sometimes turn up in celiac disease and people with gluten sensitivity.

Hope this helps a little.

Yes, my only diagnosis is from Enterolabs. My Lyme literate doctor had me do the test and she highly recommended me for the diet, since I have many of the symptoms. My symptoms for Lyme and gluten sensitivity mesh and sometimes it's very hard to tell which is which. With that being said I have already started the Gluten Free diet and I feel better for the most part. It's just hard getting food living in small town Iowa when you have to travel a lot. I try to eat lean meats, fruits and vegetables for the most part. Also, I have this skin condition and I'm not sure what it is. They are little red itchy bumps. I went to my dermatologist and she said it didn't look like dermatitis herpetiformis, but they took a biopsy and are testing for everything under the sun. I have no idea if you or anyone knows about this topic. Thank you for you insight it was helpful.

Emily

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. trents
      - trents commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      22

      Is Ka'Chava Gluten-Free?

      I contacted the company and they explained that the barley ingredient is taken from barley sprouts, not the mature grain head seeds. The sprouts do not contain gluten. Gluten production comes at a later stage in the plant's development. This is science. Some of you who are reacting to this product may be reacting to other ingredients and not gluten or...
    2. Dulcita
      - Dulcita replied to Nantzie's topic in Food Intolerance & Leaky Gut
      45

      Tapioca Intolerance?

      Celiac, and sensitive to latex, kiwi, avocado, bananas and tapioca. After having a reaction to another Amy’s product (canned chili) which is labeled gluten-free and has no listed tapioca ingredients, I have realized that for those of us who are sensitive to tapioca, it may be even worse than I thought. Not sure if I’ve got this right, but I do know that com...
    3. Carolewez
      - Carolewez commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      22

      Is Ka'Chava Gluten-Free?

      I found this comment section somewhat toxic by a few of the folks. My family has been consuming Ka’chava for the last two years. I am the only one with celiac in our house. I would enjoy a smoothie twice a week, only because every time it would rip apart my guts. I figured it was due to some of the greens, etc in the blend. As various products/supplements w...
    4. Katya773
      - Katya773 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Wholefoods 365 Organic Wheatgrass Powder

      Hi Everyone, I recently purchased this wheatgrass not realizing that it wasn’t gluten free. I had two servings before I got really sick. Abdominal cramps , diarrhea and horrible nausea. My daughter read the label and told me it wasn’t labeled gluten free. I thought this was safe because supposedly it’s healthy. I called WholeFoods and they told ...
    5. emily 1
      - emily 1 replied to emily 1's topic in Coping with Celiac Disease
      8

      Black Pepper Reactions

      Yes, unfortunately I was diagnosed about 15 years ago. Some of us I guess the gut never heals and from what I've learned you can actually have a setback which is probably the stage I am at where I actually have become more sensitive to more items.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,013
    • Most Online (within 30 mins)
      7,748
    Darryl O
    Newest Member
    Darryl O
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.8k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Dulcita
      Tapioca Intolerance?

      By Dulcita · Posted

      Celiac, and sensitive to latex, kiwi, avocado, bananas and tapioca. After having a reaction to another Amy’s product (canned chili) which is labeled gluten-free and has no listed tapioca ingredients, I have realized that for those of us who are sensitive to tapioca, it may be even worse than I thought. Not sure if I’ve got this right, but I do know that companies that focus on gluten-free foods use a lot of tapioca. If a certain product doesn’t have any tapioca ingredients, they see no reason to list tapioca or its relatives in the “known allergens” or the “produced in a facility that also uses …..” statement — because it hasn’t been designated a known allergen.  They probably don’t even feel it necessary to apply the kind of Best Practices protocols (extra cleaning) to a production line that may have used tapioca in a previous product. So we may be ingesting tapioca when we are eating something, seemingly tapioca free, produced in a gluten-free dedicated facility. Really discouraging. 
    • Katya773
      Wholefoods 365 Organic Wheatgrass Powder

      By Katya773 · Posted

      Hi Everyone,   I recently purchased this wheatgrass not realizing that it wasn’t gluten free. I had two servings before I got really sick. Abdominal cramps , diarrhea and horrible nausea. My daughter read the label and told me it wasn’t labeled gluten free. I thought this was safe because supposedly it’s healthy. I called WholeFoods and they told me that they can find out more about the product and email me when it was picked and harvested. I was diagnosed back in 2019 and I really should know better! Anyone else had a reaction to wheatgrass powder? 
    • emily 1
      Black Pepper Reactions

      By emily 1 · Posted

      Yes, unfortunately I was diagnosed about 15 years ago. Some of us I guess the gut never heals and from what I've learned you can actually have a setback which is probably the stage I am at where I actually have become more sensitive to more items.
    • Blue Roan
      Black Pepper Reactions

      By Blue Roan · Posted

      Hi Emily! I was just diagnosed a year ago and could not touch nuts, corn (or anything with corn-based ingredients), lactose, or black pepper in the first 8 or so months. Otherwise I had a lot of abdominal discomfort, dizziness/vertigo (especially with corn and pepper) and inflammation throughout the body. I was pretty much eating plain cooked veggies and chicken for the first few months because they were safe and reliable.  Over time, I have slowly started to tolerate some of the no-no foods, but my system is still sensitive to the pepper and has a limit to corn/lactose before symptoms occur. When you’re first diagnosed, you will likely be sensitive to a lot of other foods because your gut is healing from the damage and your body needs to reset. I find that keeping a food diary  and only slowly introducing other foods back into your diet over time is helpful. It is frustrating to feel so limited, but give it some time and patience. It can take the gut years to fully heal in many cases. 
    • Blue Roan
      Irregular periods AFTER going gluten-free?

      By Blue Roan · Posted

      Hi there, I am 30 and was diagnosed with celiac almost a year ago after a series of severe “unexplained” abdominal episodes. Everything is improving and I am feeling so much better overall except my cycle is worse. Has anyone else had a similar experience?  I got my period as a pre-teen and my cycles have been regular for as long as I can remember: every 21 days, lasting 5 days. My periods were heavy and I always had severe cramping at the start that subsided after the first two days.  I went gluten-free immediately when I was diagnosed in February. At first, my cycles were the same but around July, I started noticing very crazy symptoms around that time of the month: chills all over the body, severe headaches, some hot flashes, dry mouth and then cramps starting a few days earlier than usual. My cycles also started happening later and later. This time around, I’m on Day 35 and no period so far, but still cramping/abdominal pain/nausea on and off for the past week. It has been feeling like it’s about to happen any minute but nothing. I even get the pelvic contractions/pains but nothing after. I cannot sleep from all the hormonal fluctuations and chills. I can confirm I am not pregnant.  I’ve seen the endocrinologist, OBGYN, primary, and multiple gastro doctors throughout the year. No IBD ( but possible IBS), thyroid panel normal, thyroid ultrasound normal, negative for Hashimoto’s. I had a full vitamin panel and all levels normal (no anemia or vitamin B deficiency). After some testing, the gyn thinks PCOS is highly unlikely and that my body is “still adjusting” to going gluten-free. I’ve been strict gluten-free for nearly a year though.   All of my regular labs are normal and my antibodies are on a downward trend. I am really confused because more of my research points to the gluten-free diet resulting in better cycles rather than the opposite. While my cycles are not as heavy, they’re more unpredictable and uncomfortable with all these new symptoms. 
×
×
  • Create New...