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

Dxed Celiac By Biopsy, Should I Bother With Bloodwork?

JodyM75

Recommended Posts

JodyM75 Apprentice
JodyM75
Posted

I have a 20+ year history of reflux due to a hiatal hernia, and I was recently diagnosed with gastroparesis (delayed stomach emptying).  Both are also symtoms of Celiac, so, before my EGD two weeks ago, I asked the doc to do a test for Celiac.  He wavered and caved in, and I'm glad I asked becuase the test came back positive.

 

I've never had bloodwork or any other tests for Celiac.  At this point, should I bother?  I have an appointment with my regular doc tomorrow, and I'm wondering if I should request any other tests.

 

Thanks,

 

Jody

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I would ask for the blood panel provided you are still consuming gluten. Villi can be damaged from other things (like milk) per the University of Chicago's celiac website. Research, print and hand it over to your doctor. I would hate to have to give up gluten for life if it was not causing damage.

kareng Grand Master
kareng
Posted

I think the blood work would be good for follow up purposes. You need to get it checked after about 6 months gluten-free & then every year. It may not be negative after 6 months , but you could see it going down and know you are on the right track.

JodyM75 Apprentice
JodyM75
Posted
  • Author

I did not know other things can cause villous atrophy.  I will discuss this tomorrow with my PCP and request bloodwork.  I started with the gluten-free bit yesterday.

 

Unlike many people on these boards, my symtpoms are not severe and, frankly, I don't know yet what symptoms this is actually causing.  If it is Celiac, I'm guessing my symptoms would become evident when I took it out of my diet and they disappeared.

 

The GI doctor said I tested positive for "mild celiac" and after researching it I take that to mean the villous damage was mild because you either have Celiac or you don't.  He wanted me to go on a gluten-free diet.  I've been researching like crazy since then! 

 

Jody

Celiacandme Apprentice
Celiacandme
Posted

I agree with Karen. Get the blood work so you know where your levels are now and they can be monitored. It's nice to see them come down after 3 and 6 months on the diet. Then for future blood work as well. I would also request that they check you for any vitamin deficiencies. Happens often with celiac disease and you may need to supplement with vitamins. Iron levels, Vitamin D, B-12, etc. Have them check so you know! Update us when you can!

JodyM75 Apprentice
JodyM75
Posted
  • Author

Thanks for all the input, I will push for the bloodwork when I see the doc today.  I was checked for vitamin deficiencies about 6 months ago and the only one was Vit D, everything else was normal.  I've been on PPIs for 15 years and read that they can cause deficiencies as well, but to my surprise all was pretty normal. 

JodyM75 Apprentice
JodyM75
Posted
  • Author

I have the bloodwork form and she also is requesting a food allergy panel.  I got the impression she didn't think the bloodwork was necessary if I got diagnosed by biopsy.  I'm feeling very unsure and a bit confused right now.  I really dislike trying to navigate through modern medicine....

 

What if the bloodwork doesn't match the biopsy results?  (See, the "What if"s are starting already...)

 

If the villi is being damaged by something else, how will I narrow that down? 

 

Does Celiac damage all the intestine or just the small intestine?

 

Jody

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I did not know other things can cause villous atrophy.  I will discuss this tomorrow with my PCP and request bloodwork.  I started with the gluten-free bit yesterday.

 

Unlike many people on these boards, my symtpoms are not severe and, frankly, I don't know yet what symptoms this is actually causing.  If it is Celiac, I'm guessing my symptoms would become evident when I took it out of my diet and they disappeared.

 

The GI doctor said I tested positive for "mild celiac" and after researching it I take that to mean the villous damage was mild because you either have Celiac or you don't.  He wanted me to go on a gluten-free diet.  I've been researching like crazy since then! 

 

Jody

I was "mildly" positive o my blood test but my biopsy via endoscopy revealed Marsh Stage IIIB, which is severe damage! My only symptom was anemia and since I had two anemias (one iron deficient and the other genetic) the iron deficiency anemia was attributed to men's traction. Stopped that and the doc noticed that I was still anemic. It has been a year since my dx, but I can be scoped to see if I my villi have improved. I am glad I had the biopsy.

cyclinglady Grand Master
cyclinglady
Posted

I have the bloodwork form and she also is requesting a food allergy panel.  I got the impression she didn't think the bloodwork was necessary if I got diagnosed by biopsy.  I'm feeling very unsure and a bit confused right now.  I really dislike trying to navigate through modern medicine....

 

What if the bloodwork doesn't match the biopsy results?  (See, the "What if"s are starting already...)

 

If the villi is being damaged by something else, how will I narrow that down? 

 

Does Celiac damage all the intestine or just the small intestine?

 

Jody

It damages just the small and things like milk can damage villi, but focus on one thing at a time. Mine did not match. My biopsy showed much more severe damage.

Scour the University of Chicago website for complete and accurate information about celiac disease.

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. 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...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

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

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    Moooey
    Newest Member
    Moooey
    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

    • 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.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.