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/gluten Intolerance And Blood Tests


divamomma

Recommended Posts

divamomma Enthusiast

Would a positive blood test occur with gluten intolerance or ONLY with celiac disease?

Do people with gluten intolerance usually have all negative tests but respond to a gluten-free diet?

Would you say with a positive blood test and positive response to a gluten-free diet that it is celiac disease?


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



Celiac.com Sponsor (A8-M):



cassP Contributor

those are all very tuff questions- especially considering that many doctors dont even know how to answer them.

it might be easier to dissect your tests if i saw which antibody tests were taken and what the numbers were.

it IS confusing because i think an official Celiac dx is just ONE aspect of Gluten Intolerance- i think Gluten can cause a VAST amount of inflammatory and autoimmune diseases.

sorry if i didnt truly answer your question...

mushroom Proficient

As cassP says, you will get different answers to this question depending on who you talk to. Many doctors are still of the opinion that if you don't test positive for celiac disease you can continue to eat gluten without worry. Many (more enlightened in my book) doctors, recognize that there is such a thing as non-celiac gluten intolerance; i.e., that celiac tests are measuring one particular form of gluten intolerance, and that there are other forms that we have not yet devised tests to measure.) And yes, these people whom the tests identify as negative most often respond positively to the gluten free diet.

A positive celiac blood test and biopsy occur only with celiac disease because that is what they have been devised to measure. There are currently no specific tests to measure non-celiac gluten intolerance, although researchers have identified specific genes (non-celiac genes) that are associated with gluten intolerance. MRI's can pick up UBO's (Unidentifed Bright Objects) in the brain which produce symptoms that can mimic MS, but have been traced as reactions to gluten. There are no tests to associate most neurological reactions (like ataxia, migraines, etc) with gluten, but we know that if you stop eating gluten these things often go away.

If you are truly gluten intolerant your symptoms will usually go away in the absence of gluten, unless you have developed (due to leaky gut syndrome) additional food intolerances that your body is reacting to. This may require additional detective work to identify the offending food(s).

If you have tested positive for celiac, and your symptoms go away with a gluten free diet, then you are officially identified as a celiac. (Now, some doctors require a positive biopsy to confirm this diagnosis :o ; a positive response to the diet is not enough for them :rolleyes: )

Skylark Collaborator

Would a positive blood test occur with gluten intolerance or ONLY with celiac disease?

Do people with gluten intolerance usually have all negative tests but respond to a gluten-free diet?

Would you say with a positive blood test and positive response to a gluten-free diet that it is celiac disease?

Based on this new study, I would say anyone with a positive blood test and a response to the diet has celiac disease.

Open Original Shared Link

Gluten intolerance looking more and more like an inflammatory reaction to gluten. That reaction is thought to be the trigger that eventually develops into celiac in some people. In others, it looks like just the inflammatory reaction alone is enough to cause intolerance and make them feel sick from gluten.

mushroom Proficient

Based on this new study, I would say anyone with a positive blood test and a response to the diet has celiac disease.

Open Original Shared Link

Gluten intolerance looking more and more like an inflammatory reaction to gluten. That reaction is thought to be the trigger that eventually develops into celiac in some people. In others, it looks like just the inflammatory reaction alone is enough to cause intolerance and make them feel sick from gluten.

Very interesting link, Skylark. Thank you!

divamomma Enthusiast

Thanks, that's what I thought.

jammom123 Newbie

I'm new to the forum and am loving the exchange of information, thank you all of you! A couple of questions regarding testing of family members. I was diagnosed with DH and subsequently Celiac in September 2010. My dad had several autoimmune diseases, my brother was diagnosed with Celiac in December 2010.

1. Should all of my siblings and all three of my children have the initial blood test?

2. Can a blood test show negative but you can still have Celiac?

3. Are chronic migraines/headaches a possible indicator of Celiac?

Your thoughts would be appreciated!


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Yes to all three questions!

Sunshine411 Newbie

I have been tested for celiac disease & have been on a gluten-free diet for over a month now. We have to wait a week still to get my results back. I have some questions if that's okay.

1. Why do most of your family need to get tested for celiac?

2. How come when I drink powerade my stomach gets upset?

3. Why does it take so long to get diagnosed with celiac disease?

4. The doctor said that if something the blood test was high enough then I don't have to get a biopsy done. If that's true then how do you get diagnosed?

Thanks for reading & I would love some reply's

shopgirl Contributor

1. It's a genetic disease.

2. It's full of sweeteners and other things that aren't good for you. It's possible you could also have a problem with fructose but it's likely that it just disagrees with you.

3. The American medical system isn't known for its expedience. Everything takes a long time.

4. You were diagnosed. By the blood test. If your numbers are off the chart, the biopsy to confirm is unnecessary. Since you've been gluten-free for so long, the biopsy results would be suspect anyway. You need to be actively consuming gluten for accurate tests

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,019
    • Most Online (within 30 mins)
      7,748

    TryingHardToGoGlutenFree
    Newest Member
    TryingHardToGoGlutenFree
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      First off, I’m sorry to hear about the challenges you’ve been facing, both with your recent celiac concerns and the dermatitis you've been dealing with. It’s clear you’ve put in a lot of effort to figure this out, and it’s frustrating to still have lingering questions. Regarding your TTG-IgA result of 11.6 U/mL, you’re correct that many labs and celiac experts consider values above 10 to be indicative of possible celiac disease. However, interpretation can vary depending on the lab and the individual. It’s worth noting that slightly elevated levels can also sometimes occur with other autoimmune conditions, including Hashimoto’s thyroiditis. However, since you already have Hashimoto's and a strong family history of celiac (your daughter’s diagnosis), the most likely explanation is that you also have celiac disease. Here are a few steps you might consider to gain peace of mind: Consult a Gastroenterologist: They have more expertise in celiac diagnostics than a general PCP. They may recommend additional tests like an EMA (endomysial antibody) test or even genetic testing to confirm your predisposition further. Consider a Small Intestinal Biopsy: If there’s uncertainty, a biopsy remains the gold standard for celiac diagnosis. It can provide clarity, especially since your TTG-IgA is borderline. Monitor Symptoms on a Gluten-Free Diet: Since you already have another autoimmune condition and a chronic rash (which could resemble dermatitis herpetiformis, a skin manifestation of celiac disease), some doctors might suggest trying a strict gluten-free diet for a few months under supervision. If you notice a marked improvement, it might be telling. Keep in mind that if you go on a gluten-free diet before an endoscopy/biopsy, you will need to do a gluten challenge and eat lots of gluten daily for at least two weeks before the biopsy. As for your genetic results from 23andMe, having two copies of a celiac-associated gene (HLA-DQ2 or DQ8) does increase your risk of developing celiac disease considerably. However, about 30-40% of the general population carries these genes, and only a small percentage actually develop the disease. The genetic predisposition combined with your elevated TTG-IgA and symptoms could justify further investigation. Lastly, regarding your chronic "dermatitis," it might be worth bringing up the possibility of dermatitis herpetiformis to a dermatologist familiar with celiac disease. This condition is often misdiagnosed as eczema or another dermatitis type and may not respond well to typical creams. A skin biopsy taken near (not on) an affected area can help diagnose it.
    • BertoleAmur
      I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better.
    • Scott Adams
      Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.
    • aperlo34
      Hi Scott, thanks for the reply.    I’m currently taking  3000IU vitamin D3 centrum multivitamin  500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2)   I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me.  Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500.    Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅   I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body! Thank you so much in advance for any input/guidance.    
    • Yaya
      I never had muscle twitching that I would relate to Celiac Disease (celiac disease).  However, I now have Long Covid and muscle twitching, burning, and other issues cropped up with that.  Predating all was restless leg syndrome (RLS).  Are you talking about RLS?  I've had that since '99.  It gets progressively worse.  
×
×
  • Create New...