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

Biopsy Needed If Blood Test Is +?


Tripletmomma2000

Recommended Posts

Tripletmomma2000 Rookie

Hi there,

I tested positive for Celiac at the end of April. I had my children tested (IGA) and 2/3 of the triplets also tested positive. Their pediatrician suggested they go see a Gastro. doctor, and have an endoscopy. Is it really necessary to have the scope, if the blood test shows a + result? My concern is having an invasive procedure, and have the end result be the same (gluten-free diet). We got the + result on the kids this past Thursday, and they immediately went gluten-free, so they've been "clean" for about 5 days now.

What's the up side of getting the scope done? Is there one?


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



Celiac.com Sponsor (A8-M):



Lolabell Newbie
Hi there,

I tested positive for Celiac at the end of April. I had my children tested (IGA) and 2/3 of the triplets also tested positive. Their pediatrician suggested they go see a Gastro. doctor, and have an endoscopy. Is it really necessary to have the scope, if the blood test shows a + result? My concern is having an invasive procedure, and have the end result be the same (gluten-free diet). We got the + result on the kids this past Thursday, and they immediately went gluten-free, so they've been "clean" for about 5 days now.

What's the up side of getting the scope done? Is there one?

The problem with blood tests is the occasional false negative, not the false positive, if any of your children should have the scope, I would think it should be the one that tested negative on the blood test, (IMHO).

Wow, good job on going gluten-free so quickly. My 14 year old son has been gluten and casein free because of leaky gut for 7 years. Oh how I would love to strangle the school district for thinking every good deed has to be rewarded with pizza parties! Be prepared for a long road to tow!

Lisa Mentor

An endoscopy exam can determine the extent of the damage in the small intestines. The biospy can be hit or miss. It, as in the blood test, can rule Celiac in, but not rule it out.

Positive blood test is a Celiac diagnosis.

Triplets, wow :blink:

cruelshoes Enthusiast

A positive diagnosis of celiac disease generally follows this course:

1 - positive results on the bloodwork

2 - positive results on an endoscopy (generally considered the gold standard for diagnosis)

3 - improvement in symptoms on a gluten-free diet

Some people have a different combination of the three. Most MD's will generally not diagnose celiac disease on bloodwork alone. I had the endoscopy done on my son when he was 6. I thought long and hard before I agreed to the procedure. I feel that the more information one can have before committing to a lifestyle like this the better (it really is a lifestyle - much more than a diet). My son will eventually be a teenager (God help me). I don't want there to be any doubt about his diagnosis when he gets into the "screw you, Mom. I'll eat what I want" stage. I have the pictures to prove how damaged his intestines were even though he had NO symptoms. He has a 529 plan with the school district, which he could not get without a diagnosis.

If it means anything, his endoscopy was much harder on me than it was on him. He has no memory of it.

HTH.

  • 2 weeks later...
Tripletmomma2000 Rookie
He has a 529 plan with the school district, which he could not get without a diagnosis.

What is the 529 plan at school? The only 529 I know about is a college savings plan? Will this help my kids in school? Sorry to sound so LAME!

Karen

angel-jd1 Community Regular
What is the 529 plan at school? The only 529 I know about is a college savings plan? Will this help my kids in school? Sorry to sound so LAME!

Karen

Most likely they are talking about a 504 plan. It is a education plan for kids with disabilities that are not on an IEP (Individualized Education Plan). You can read more about it here:

Open Original Shared Link

-Jessica :rolleyes:

cruelshoes Enthusiast
Most likely they are talking about a 504 plan. It is a education plan for kids with disabilities that are not on an IEP (Individualized Education Plan). You can read more about it here:

Open Original Shared Link

-Jessica :rolleyes:

Duh! You are right - I was talking about a 504 plan. Can you tell I am setting up 529 plans for my kids lately? I have them onthe brain. Thanks for clearing that up for me.


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



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular
Duh! You are right - I was talking about a 504 plan. Can you tell I am setting up 529 plans for my kids lately? I have them onthe brain. Thanks for clearing that up for me.

There are too many numbers and acronymns out there!! :lol:

-Jessica :rolleyes:

gaylamac Newbie
A positive diagnosis of celiac disease generally follows this course:

1 - positive results on the bloodwork

2 - positive results on an endoscopy (generally considered the gold standard for diagnosis)

3 - improvement in symptoms on a gluten-free diet

Some people have a different combination of the three. Most MD's will generally not diagnose celiac disease on bloodwork alone. I had the endoscopy done on my son when he was 6. I thought long and hard before I agreed to the procedure. I feel that the more information one can have before committing to a lifestyle like this the better (it really is a lifestyle - much more than a diet). My son will eventually be a teenager (God help me). I don't want there to be any doubt about his diagnosis when he gets into the "screw you, Mom. I'll eat what I want" stage. I have the pictures to prove how damaged his intestines were even though he had NO symptoms. He has a 529 plan with the school district, which he could not get without a diagnosis.

If it means anything, his endoscopy was much harder on me than it was on him. He has no memory of it.

HTH.

Thanks for this. I have been struggling with how to start testing for my 3 sons. They are 21, 20, and 11. Two definitely have symptoms, have never been tested. Any advice on this would be appreciated.

I was diagnosed with celiac last month, at age 44. I had some problems with the testing myself, tested negative back in 2004 for both blood and biopsy. Problems persisted and pushed for tests again last month, again tested negative for blood test but positive with biopsy this time. I am one week into gluten free diet with some improvement. I had to push as my GI Dr. was convinced it couldn't be celiac since my last test was negative. Thanks

gfpaperdoll Rookie
Thanks for this. I have been struggling with how to start testing for my 3 sons. They are 21, 20, and 11. Two definitely have symptoms, have never been tested. Any advice on this would be appreciated.

I was diagnosed with celiac last month, at age 44. I had some problems with the testing myself, tested negative back in 2004 for both blood and biopsy. Problems persisted and pushed for tests again last month, again tested negative for blood test but positive with biopsy this time. I am one week into gluten free diet with some improvement. I had to push as my GI Dr. was convinced it couldn't be celiac since my last test was negative. Thanks

This is exactly the problem with using biobsy as a dxd. You have to be half dead before the damage shows up, of course if you had not insisted on the test they would have never tested you again, & then you would have gone downhill fast or more likely gotten cancer etc...

I suggest to test your sons thru Enterolab.com & get the gene test so they will know what will be going on when they have children...

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,882
    • Most Online (within 30 mins)
      7,748

    Nicole King
    Newest Member
    Nicole King
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed 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.