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

Diagnostic Methods And Second Opinions

GFG

Recommended Posts

GFG Newbie
GFG
Posted

Hi,

I was recently diagnosed with Celiac via an Enterolab gene and stool test. It showed I have both a gene and the physical manifestations through the stool results. At this point my only symptom has been fatigue but the demands of my life (won't bore you here) could provide reason for that alone.

I'm working with a nutritionist and MD who encouraged the testing based on other bloodwork and their suspicions. After getting the results I have begun a gluten free diet and cow dairy free as a casein intolerance was also indicated (again, I've never had any symptoms of that).

Subsequently we've had our children tested through the same means and their results came back today that they both have a gene and the manifestation (though no symptoms that are obvious).

Since discovering I have it I've been a total research fiend reading books, GlutenFree living magazine, Living Without magazine, this website, etc. The Enterolab methods are never mentioned; usually a biopsy is used. I also tested negative on the blood test for Celiac (which I've heard can be a false negative).

I'm feeling overwhelmed about starting my 2 yr old and 6 yr old on this path without feeling more confident about the diagnosis. I'd greatly welcome feedback on the integrity of Enterlabs method of diagnosis, as well as what I might do as a validating or second opinion for myself and my children. If it's the right thing I'll go down the path willingly but would feel better with a second opinion and feedback about Enterolab. Is there another lab to have the same tests done?

Thanks for any help! Toni

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

I personally have not had tests done with enterolab since I was diagnosed through positive bloodwork and biopsy. I think that enterlab is reliable. If you have the gene for celiac and positive gluten sensitivity result from enterolab than you should definiately be on the gluten-free diet; however, you could also get the celiac blood panel and see if these results are consistant with the enterolab results. Just make sure you are eating gluten until the tests because you could get fasle negative results.

Some people with celiac disease have no symptoms at all and still have intestinal damage. I actually know someone whose only symptoms of celiac were anemia, fatigue, and low energy. If you indeed have celiac, than you are at a higher risk for conditions such as cancer, osteoporosis, infertility, seizures, ect.

I know the diet seems overwhelming at first, and it is... but it gets better with time and we all can help give you suggestions to make meal time better for your kids. I am both gluten free and dairy free and don't mind it. Once you know what you can/can't have grocery shopping and cooking becomes a lot faster and less stressful.

BTW - always feel welcome to ask any questions about the diet or anything else and we will do our best to help :)

KaitiUSA Enthusiast
KaitiUSA
Posted

The Enterolab is the up and coming thing in my opinion. Some doctors now accept it but others do not.

Blood tests are very accurate, depending on which one you get done.

The tTG test is getting ready to take the place of biopsies for diagnosis in kids.

Biopsies can have false negatives to...in my opinion the blood tests are better.

My doctor did not bother doing a biopsy because I not only had a main gene but my tests were so high that he had no doubt that it was celiac.

GFG Newbie
GFG
Posted
  • Author
The Enterolab is the up and coming thing in my opinion. Some doctors now accept it but others do not.

Blood tests are very accurate, depending on which one you get done.

The tTG test is getting ready to take the place of biopsies for diagnosis in kids.

Biopsies can have false negatives to...in my opinion the blood tests are better.

My doctor did not bother doing a biopsy because I not only had a main gene but my tests were so high that he had no doubt that it was celiac.

Thanks Kati; could you tell me what the tTG test is exactly? Is that what they do at Enterolab or a different test? If a different test do you know how it's administered (I looked it up online but it didn't indicate if it's a blood test, stool test, etc). Thanks so much !

KaitiUSA Enthusiast
KaitiUSA
Posted

This is the complete panel that is very efficient in testing.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG test they do also do in Enterolab but it is by stool sample. The panel above is bloodwork

If you are gluten free it can make test results inaccurate so keep that in mind.

I think the Enterolab is a really good test too.

drewsant Rookie
drewsant
Posted

I have a question about these tests. It's been stated that if you have been gluten-free, then the blood tests will come back negative. I've been on the gluten-free diet for about 3 weeks, and had blood work done last Monday. I know I've screwed up along the way, but I would say about 95% gluten-free. I guess my question is, with the maybe 5% I've eaten with gluten in this time period, would that be enough to show a positive on the blood tests if I have it?

I am feeling much better as far as the stomach goes. Since I haven't gotten a definitive diagnosis, yesterday I decided to test myself to see what would happen. I ate a Chicken Whopper from Burger King last night. This afternoon, I've made like 5 trips to the bathroom in 2 hours. I have a feeling it is Celiac. Although about 3 nights ago, I drank something with alcohol, that at the time, I didn't know had wheat in it--was clear, and looked distilled. So I thought that might make me sick, but it didn't seem to.

KaitiUSA Enthusiast
KaitiUSA
Posted
I have a question about these tests. It's been stated that if you have been gluten-free, then the blood tests will come back negative. I've been on the gluten-free diet for about 3 weeks, and had blood work done last Monday. I know I've screwed up along the way, but I would say about 95% gluten-free. I guess my question is, with the maybe 5% I've eaten with gluten in this time period, would that be enough to show a positive on the blood tests if I have it?

It could mess tests up. You should be on gluten for 3 months prior to testing with eating about equal to 3 pieces of bread every day.

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

Celiac.com Sponsor (A8-M):


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 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    2. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    3. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    5. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    Jane02
    Newest Member
    Jane02
    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

    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to intake enough vitamin D as I can't have dairy and have insufficient sun exposure in the northern hemisphere. I've tried B Complex from Country Life (certified gluten-free) - horrible reaction. I've tried Metagenics vitamin D tab (certified glute-free) - bad reaction. I've tried liquid vitamin D Thorne and D Drops - reactions were mild since I tried a drop of a drop. I understand there could be other things I'm reacting to in my diet, although my diet/intake is pretty consistent with minimal variables so I do think it's something in these supplements. I understand I could be reacting to the active ingredient vitamin/mineral itself or even the filler ingredients. I tried the vitamin D drops since the only filler ingredient is coconut oil, in some brands, which I know I can tolerate really well on its own - I cook with coconut oil frequently and have no 'glutening' reactions at all. Perhaps I'm reacting to the vitamin D itself, although I eat fatty fish every few days, an entire fillet with no 'glutening' reactions, which contains anywhere between 400-600 IU per fillet so I shouldn't be sensitive to vitamin D. All this to say, I'm desperately looking for at least a safe vitamin D supplement. Does anyone know of a safe vitamin D supplement brand? I'd love to know if there are any supplement brands that have absolutely no gluten (especially in flour form) in their facilities. I've heard of Kirkman having no grains in their facility - I may try this brand. Has anyone reacted to this brand?   
    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
×
×
  • 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.