Doctor still wants to do a biopsy

Question

My son 4 and daughter 2 tested positive via blood test for Celiac. Their other siblings tested negative. The numbers were pretty high but the doctor still wants to do a biopsy. I’m just trying to decide if I should have it done or just go by the blood test. What are the thoughts on this?

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Jessica 3 years 28 Answers 669 views 0

Answers ( 28 )

  1. I should add that they have no digestive symptoms. My son was tested primarily because of growth delay but that’s it.

  2. You need the biopsy done to confirm for insurance and for school policy if you want to file a 504

  3. Check your insurance. My lab work (fecal & blood) came back with elevated levels and I have all the symptoms. My insurance will not cover a biopsy.

  4. Blood test?? I had to go through colonoscopy & upper GI tests with sevral biopsies to find mine.\nIf my doctor could have found it from a blood test him & I are going to fight!

  5. Many doctors will give you an official diagnosis with just the blood test. My daughter’s doctor didn’t think endoscopy was necessary for a few reasons. #1, I have and it’s genetic. #2, her antibodies were very high in her blood test. Her doctor basically said there’s no way a person withOUT Celiac would be that high. #3, she had lots of symptoms – including visible ones like small stature & very slow growth. Etc etc etc.

    So basically putting her through endoscopy would only tell us the amount of damage – and confirm what we already knew.

    So we opted not to have it done. That was almost 10 yrs ago and it has never ever been questioned – ever – by anyone. She has the official diagnosis in her medical records and no one has ever asked for more than that. Except her doctor wrote a letter on her letterhead for me to give to her school (when she was in primary).

    So – that’s our experience ?.

    But honestly I would follow your doctor’s recommendation. That’s what we did even though they are opposite opinions. The biggest problem is that you can’t easily go back & do the test. They would have to eat gluten again for a while first ?.

  6. You need to have them all get a biopsy. The two that tested positive need a positive biopsy for school and assistants with a 504 plan. The one that tested negative needs one in case of a false negative on blood work. My twin sister and I both have celiac. She had no symptoms and I did have symptoms. If I were in your shoes I would just go through with the biopsy. Best of luck!

  7. The gold standard which most G.I. Doctors will Tell you a biopsy is needed to give Celiacs diagnosed vs gluten sensitivity I know this because my daughter has it and I work in the medical field

  8. My advice is to do some research and find out if you need that endoscopy (the biopsy) done for the official diagnosis, or if the doctor is willing to give official diagnosis without it. The reasons being A) you don’t want to have to get the biopsy later, because they’ll need to eat gluten for a while and suffer to get an accurate result and B) depending on your situation, that official diagnosis can be helpful when trying to navigate the situations in life that come up at elementary, middle, and high school even straight through college. It is an individual choice based on your location and whether you need that official diagnosis, and what the doctor needs to give that. I personally wanted an official diagnosis, but there are some people who are okay to just know it and not confirm. It all does depend. I do know that an endoscopy is an invasive thing for such small children, so that is a hard one. Maybe other parents can weigh in on that.

  9. Also endoscopy take like 10 minutes

  10. My son had a low positive blood test at first and then we did the endoscopy and another blood test and it was confirmed positive. I think if they are still eating glutens I would do the test just to get a firm answer.

  11. Lol your better than me!! I just tested them for the genes! They have both….so I would rather just think they have it to!! No need to stab their little arms and suck their blood out lol….. I dunno if I could handle that…. I’m already gluten free (celiac) so now everyone is gluten free!! 😂

  12. Have the biopsy done. That is the only way to tell for sure.

  13. I got 12 samples taken in my biopsy and it confirmed Celiac Disease.

  14. Has anyone had a CBC and there WBC was low and was told due to gluten/CD and stopped eating gluten and WBC went back up?????please reply

  15. I did the antibody on my kids that thank god was negative but since I have all genetic markers I had their DNA checked and they each do carry markers. So I just keep an eye on them and if they get a high antibody test there is no way on gods green earth I am allowing them to get scoped. Besides the fact my biopsy was actually negative ( only 2 spots biopsies which I now know is not enough) so in the end I had to do DNA anyhow for a diagnosis.

  16. I see no reason for a biopsy. I didn’t have one because the only purpose was to compare it to another one later. No thanks. Just keep them as close to 100 percent gluten free as possible and they’ll heal. They are so lucky to have been diagnosed so early. Good job!

  17. It’s such a huge diet change. I wouldn’t want to be that strict if I wasn’t absolutely sure

  18. I have four kids with celiac disease. The genetic markers came back positive. Two of my kids had scoping while the other two have not. The two that had the scoping have other health issues. If you don’t have them scoped you may not find out the other underlying issues.

  19. I have celiac and I’m a nurse, Even if they’re not showing physical signs they could be doing internal damage. I would follow the doctors recommendation and treat accordingly (avoiding gluten and whatever else). This is imperative to their health especially while developing at such a young age.

  20. And as Brooke said there may be other underlying issues that need to be confronted and it’s best to take care of it right away.

  21. Because I had the “gold standard” dx and my mother the doctor said that my kids who tested positive didn’t need a biopsy. He said there was enough of a genetic link to prove they had it.

  22. i would definately go for a biopsy to clarify. But dont go gf before the biopsy or you wont get a true result.

  23. Well, my MD and Multiple GI’s have been stumped for YEARS with blood work and biopsies, only to find out through much prayer last year in July we thought I just had gluten sensitivity. My symptoms worsened and now they tell me I am to live my life as if I have celiac disease. And let me tell you from experience, if I don’t… I will be in bed for a minimum of 3 days with gluten flu. So blood test, biopsies or not, just listen to your body. It’s fearfully and wonderfully made!😊

  24. Being celiac brings a whole new scheme of pieces to the puzzle. You could develop other autoimmune disorders. With having the biopsy you may be more in tune to what could happen in the future.

  25. gold standard of insurance is both blood and tissue that way they can prove CD .. I did my colo/endo with biopsy to show that I was not CD but NCGS . Both genetic immunity conditions but only a biopsy can differently prove celaic.

  26. The only real way to know is the biopsy. IF you are uncomfortable having your children go through that, you can just go on a gluten free diet and if they feel better than you can just keep them on the diet. You may opt to do the biopsy later when they are older. just my opinion.

  27. Does it really matter if you can’t tolerate no blood test is gonna make a difference to the way you feel when consuming gluten the only thing thats gonna help is to stop eating it

  28. RN…myself Celiac and daughter who is 3… I’d go with blood test because scoping can be a lil too overkill mentally for youngins.. just start the diet and enjoy having happier bellies kiddos!

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