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

Once You Are Gluten Free What Are The Testing Options?


carecare

Recommended Posts

carecare Enthusiast

My dh went gluten free 2 yrs ago for a couple months with great success but decided to eat as before after that period of time and yes, his symptoms came back. Well, he did a paleo eating challenge with his workout group and realized his symptoms did indeed clear up again. He knows now he can't have gluten. Thanksgiving he cheated and he had issues for a good two weeks....off and on diarrhea. His severe indigestion started Thanksgiving evening...but luckily that didn't last 2 wks...it's just the D that's been off and on...and some stomach pain.

Anyway, my question is....once you are already gluten free is there any surefire way of testing for Celiac? I know the bloodwork won't be accurate...however, would a biopsy show celiac if you've been off of gluten for a few months? I know Entrolabs (sp?) does testing...and you don't have to be ingesting gluten to get tested right? but they can't say you have celiac but only gluten intolerance. Well we already know he's gluten intolerance. If I did not have children I'd say fine...live with not having the official diagnosis and just live a gluten free life. I just would like to know for sure. Also, because we aren't a gluten free household I want to make sure we are doing everything right for my husband. If he's true Celiac it would be easier to tell the kids "daddy has Celiac and we need to make our home gluten free."...it would just be easier for everyone if we knew. If he's Celiac I don't want him getting accidentally glutened because we made cookies with flour or baked something with gluten in it and didn't clean things good enough.

So should I encourage him to make an appointment with the dr. and request a biopsy?

Also, anyone know what the dr. meant by this when my daughter had her appendix out 4-5 yrs ago. He said there was fluid around her appendix that is usually present with celiac patients. The fluid had certain type of lymphocytic cells or something in it. She did get the bloodtest for celiac and was negative ( I also remember telling the dr that my daughter hadn't had much gluten rich foods in a few weeks...as she doesn't eat bread so her gluten intake was mostly from some cereal here and there...he thought that would be fine)....but I never seen the numbers and then her pediatrician the last time I saw her (a month ago) was looking through her chart and mentioned something about the numbers on the celiac test but then didn't say anything else. I wondered if it was borderline or something. Should I call up and ask for the results? And the reason I actually got her tested was because for years prior she had so many bouts of illness and diarrhea. However, that has seemed to calm down and she rarely has the cramping and stuff anymore. So I don't know what to think.

Any ideas? :)

CC

edited to add: I did a lot of reading here in the last hour. I think I'm going to encourage a Entrolab full screening. He hates dr's and this way we'll know just a little more and have a clue about what's going on.


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



Celiac.com Sponsor (A8-M):



JillianLindsay Enthusiast

Hello,

Enterolab & other genetic testing can only tell you if someone has a genetic predisposition to celiac disease, it is not a confirmation that they do indeed have it. DRs may dx (diagnose) based on genetic testing plus a positive dietary response.

Lymphocytes (I'm not a Dr, so this is my lay person's understanding) are a type of white blood cell which show an immunte system response. My biopsy showed a lymphocyte overgrowth and this paired with a positive ttg blood test and genetic test confirmed my dx.

I hope that helps at least a little :)

Good luck,

Jillian

My dh went gluten free 2 yrs ago for a couple months with great success but decided to eat as before after that period of time and yes, his symptoms came back. Well, he did a paleo eating challenge with his workout group and realized his symptoms did indeed clear up again. He knows now he can't have gluten. Thanksgiving he cheated and he had issues for a good two weeks....off and on diarrhea. His severe indigestion started Thanksgiving evening...but luckily that didn't last 2 wks...it's just the D that's been off and on...and some stomach pain.

Anyway, my question is....once you are already gluten free is there any surefire way of testing for Celiac? I know the bloodwork won't be accurate...however, would a biopsy show celiac if you've been off of gluten for a few months? I know Entrolabs (sp?) does testing...and you don't have to be ingesting gluten to get tested right? but they can't say you have celiac but only gluten intolerance. Well we already know he's gluten intolerance. If I did not have children I'd say fine...live with not having the official diagnosis and just live a gluten free life. I just would like to know for sure. Also, because we aren't a gluten free household I want to make sure we are doing everything right for my husband. If he's true Celiac it would be easier to tell the kids "daddy has Celiac and we need to make our home gluten free."...it would just be easier for everyone if we knew. If he's Celiac I don't want him getting accidentally glutened because we made cookies with flour or baked something with gluten in it and didn't clean things good enough.

So should I encourage him to make an appointment with the dr. and request a biopsy?

Also, anyone know what the dr. meant by this when my daughter had her appendix out 4-5 yrs ago. He said there was fluid around her appendix that is usually present with celiac patients. The fluid had certain type of lymphocytic cells or something in it. She did get the bloodtest for celiac and was negative ( I also remember telling the dr that my daughter hadn't had much gluten rich foods in a few weeks...as she doesn't eat bread so her gluten intake was mostly from some cereal here and there...he thought that would be fine)....but I never seen the numbers and then her pediatrician the last time I saw her (a month ago) was looking through her chart and mentioned something about the numbers on the celiac test but then didn't say anything else. I wondered if it was borderline or something. Should I call up and ask for the results? And the reason I actually got her tested was because for years prior she had so many bouts of illness and diarrhea. However, that has seemed to calm down and she rarely has the cramping and stuff anymore. So I don't know what to think.

Any ideas? :)

CC

edited to add: I did a lot of reading here in the last hour. I think I'm going to encourage a Entrolab full screening. He hates dr's and this way we'll know just a little more and have a clue about what's going on.

brigala Explorer

No, there's no surefire way to diagnose Celiac or know the difference between Celiac and some other gluten intolerance unless you're eating gluten consistently for a period of time. Tests MAY come back positive for Celiac, but negative results will be questionable.

Frankly, negative results are questionable enough even on a full-gluten diet.

But it doesn't really matter, does it? Whether your husband is gluten intolerant or Celiac, the treatment is the same. And although the genetic test by Enterolab can't diagnose Celiac, per se, it CAN identify the genetic disposition toward Celiac. And for the purposes of where to go from here with your daughter, the genetic disposition is all that matters. It doesn't matter if your husband has Celiac or not if he has the gene -- your daughter still could have inherited it.

If I were in your shoes, I would have the husband take just the genetic test from Enterolab, and have your daughter take the genetic AND the stool test from Enterolab. That way you'll know what you're dealing with.

My son had the Enterolab stuff done and it shows he doesn't have the Celiac gene but he has two copies of a gene associated with gluten intolerance and he has elevated antibodies to gluten (and to dairy). So he probably does NOT have Celiac disease, but he definitely has a gluten problem (which we already knew, symptomatically).

carecare Enthusiast

Thanks for the responses. I was thinking that same thing. Just having my husband get the genetic testing and my daughter get the full screening. She's really balking at having the household go gluten free and if it comes back showing a gluten intolerance it would give her more evidence that it's for the best. We know for a fact the my husband is intolerant to gluten and he's not willing to go back on gluten for testing. So I'm more concerned about making sure my kids are doing the right thing for their health now. I'm also thinking of getting the full screening done for myself as I've been diagnosed with IBS which flared cooincidentally when I started cooking gluten free for my husband two years ago....it was problems once every two weeks...then gradually became 2-3 times a week 9 months later for which I went to the dr. He had me take fiber supplements everyday and said if it doesn't clear in 2 wks on the fiber he's send me to a gastro doctor. Fiber cleared it right up...but I'm not good with taking the fiber every day and tend to have relapses because of it. I wonder though, if I'm having some intolerance issues to foods. I also have several siblings with IBS (never tested for gluten intoelance)...and siblings and mother with autoimmune disorders...and a father who died of Colon cancer.

Anyway, thanks for all the help :)

CC

No, there's no surefire way to diagnose Celiac or know the difference between Celiac and some other gluten intolerance unless you're eating gluten consistently for a period of time. Tests MAY come back positive for Celiac, but negative results will be questionable.

Frankly, negative results are questionable enough even on a full-gluten diet.

But it doesn't really matter, does it? Whether your husband is gluten intolerant or Celiac, the treatment is the same. And although the genetic test by Enterolab can't diagnose Celiac, per se, it CAN identify the genetic disposition toward Celiac. And for the purposes of where to go from here with your daughter, the genetic disposition is all that matters. It doesn't matter if your husband has Celiac or not if he has the gene -- your daughter still could have inherited it.

If I were in your shoes, I would have the husband take just the genetic test from Enterolab, and have your daughter take the genetic AND the stool test from Enterolab. That way you'll know what you're dealing with.

My son had the Enterolab stuff done and it shows he doesn't have the Celiac gene but he has two copies of a gene associated with gluten intolerance and he has elevated antibodies to gluten (and to dairy). So he probably does NOT have Celiac disease, but he definitely has a gluten problem (which we already knew, symptomatically).

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,966
    • Most Online (within 30 mins)
      7,748

    Susan Allsopp
    Newest Member
    Susan Allsopp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Hello @CeliacNew, If you are Vegan to help you feel better, reconsider returning to omnivore.  Actually, since you are already on a very restrictive diet, transitioning to gluten free might be easier for you.  Read the ingredient labels, Particularly vitamin D and Choline require supplements for vegan diet because our primary source is sun, eggs and beef.  B12 also.
    • Wheatwacked
      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
    • cameo674
      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
×
×
  • Create New...