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

Has Anyone Had A Second Opinion On Their Biopsies?

Tritty

Recommended Posts

Tritty Rookie
Tritty
Posted

OK - so I'm really confused :)

My son is 17 months old and keeps getting smaller and smaller on the percentage scale. Soon he's going to fall off of it :(

Anyway, my ped sent him to a ped GI and they've tested his ttg's etc a couple of times - and no positives (Not surprising since he's only 17 months). HOwever, they went ahead and did an endoscopy two weeks ago b/c he has the gene and isn't gaining weight, has a distended belly, etc. They said they thought everything looked normal, but had to review the actual biopsies. When reviewed they found that he has eosinophilic esophogitis. WHite blood cells in the esophogus that I guess make the esophogus constrict and harder to eat. Usually caused by many food allergies. So they did the RAST test and only milk came up as a MILD allergy. NOt enough to cause the eosinophils (they think). His doctor ordered my biopsies from the lab that processed them to compare mine to his. He is curious if I really have eosinophilic esophogitis and not celiac. However, my ttg's were high. ANd my biopsies were done 6 weeks after I started my diet (I was losing too much weight to wait - so I'm afraid they won't see what they need...). But I guess if I am responding so well to my diet and I show the eosinophils that it might show some relation between the two? There is a Dr doing research as celiac presenting itself in this way. Does anyone know anything about it? Or anything about eosinophilic esophogitis?

THANKS!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
OK - so I'm really confused :)

My son is 17 months old and keeps getting smaller and smaller on the percentage scale. Soon he's going to fall off of it :(

Anyway, my ped sent him to a ped GI and they've tested his ttg's etc a couple of times - and no positives (Not surprising since he's only 17 months). HOwever, they went ahead and did an endoscopy two weeks ago b/c he has the gene and isn't gaining weight, has a distended belly, etc. They said they thought everything looked normal, but had to review the actual biopsies. When reviewed they found that he has eosinophilic esophogitis. WHite blood cells in the esophogus that I guess make the esophogus constrict and harder to eat. Usually caused by many food allergies. So they did the RAST test and only milk came up as a MILD allergy. NOt enough to cause the eosinophils (they think). His doctor ordered my biopsies from the lab that processed them to compare mine to his. He is curious if I really have eosinophilic esophogitis and not celiac. However, my ttg's were high. ANd my biopsies were done 6 weeks after I started my diet (I was losing too much weight to wait - so I'm afraid they won't see what they need...). But I guess if I am responding so well to my diet and I show the eosinophils that it might show some relation between the two? There is a Dr doing research as celiac presenting itself in this way. Does anyone know anything about it? Or anything about eosinophilic esophogitis?

THANKS!

If memory serves me eosinophilic esophogitis is one of the findings for celiac. Gluten will also not show up on a RAST test as it is an intolerance and not a true allergy. I would stick with the diet for a while before deciding that you both don't need it.

tabdegner Apprentice
tabdegner
Posted

A friend of mine had a second opinion on a biopsy. She went to a celiac specialist in Chicago. She said that the doctor looked at her biopsy and could immediately tell that they cut it the wrong way. Apparently with a celiac biopsy, it has to be cut a certain way when they take it. The new doctor said that because they cut it the wrong way, they cut off the portion that would have shown damage. He said that she most likely did have celiac -- he could see that it was probably damaged in the biopsy, but very very hard to see.

I would really like a second opinion on my biopsy as well. We may move to the Chicago area in a few months, and I'll probably get a second opinion, too. I had no idea that the celiac biopsies had to be cut differently than a normal biopsy.

Anyone else hear of this?

Tritty Rookie
Tritty
Posted
  • Author

No, I had not heard that they needed to be cut a certain way. I think he may just think I have this on top of celiac - or that this is how some of my damage from celiac showed. And if it is - since he doesn't have any of the other damage - they would assume he has celiac too. Does anyone here have both - or is this how anyone's presented itself?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,685
    • Most Online (within 30 mins)
      7,748
    Janahawk
    Newest Member
    Janahawk
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By trents · Posted

      Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it. To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.     I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Trents: Due to a genetic mutation, my daughter has inherited from both parents she cannot process the Folic Acid provided in the fortified American grains.   An MD told her to avoid eating fortified grains.   My daughter makes the assumption that unless she makes the food item, that the baker used a fortified grain so she has been limiting her gluten intake since 2020.   Her Psychiatrist was who tested her for MTHFR gene issue because she suffers from depression and severe anxiety. The Psychatrist also instructed my daughter to supplement with a methylated version of folate once she knew my daughter was homozygous, because the methylated version bypasses the mutated gene step so her body can absorb it.  Low folate absorption impacts serotonin and dopamine production.  My husband and I also both have two other homozygous gene mutations that interfere with vitamin absorption: MTRR and VDR taq.  The first interferes with B-12 absorption which requires us to take a methylated B-12 vitamin and the second with Vitamin D absorption so we have to take higher doses to stay within normal levels.   My brother, who has the exact same gene mutations, went through 10x health genetic testing for vitamin supplements (paid by his employer) and received a huge report saying the same things about which types of supplements had to be taken.  Gary Brecka does videos on how these gene mutations impact the vitamin absorption pathways.       If my brother had not gotten his testing through work, he would never would have started his supplement journey.  His testing is what triggered my getting functional health testing that tested similar biomarkers to his.  Again the celiac testing was an add-on test that I did off the cuff.  
    • trents
      Colonoscopy with large are of inflammation

      By trents · Posted

      Welcome to the forum, @growlinhard1! If eliminating gluten from your diet makes significant improvement in your symptoms then there are two possibilities. Either you have celiac disease (aka, gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity, aka, gluten sensitivity). The difference is that celiac disease is an autoimmune disorder that creates inflammation and, over time, damages the lining of the small bowel which inhibits nutrient absorption whereas NCGS does not damage the lining of the small bowel. They share many of the same symptoms. At the end of the day, the antidote for both is to abstain from foods that contain wheat, barley or rye, the three gluten-containing grains. Some countries supply stipends and healthcare benefits for those with an official celiac diagnosis. If you live in the USA that does not apply. The main reasons for seeking an official celiac diagnosis are psychological and social. Many people have a hard time not falling off the gluten free bandwagon without an official diagnosis. They find it easy to rationalize it all away as being temporary or due to something else. When you have an official diagnosis, you tend to take gluten-free eating more seriously. Socially, family and friends are more likely to respect and attempt to comply with your need to eat gluten free if you have an official diagnosis of celiac disease. Your physician is more likely to take you seriously as well if you have an official diagnosis because there are typically other health problems that are spinoffs which develop from celiac disease in time. One autoimmune disease invites others. There are no tests for NCGS. Celiac disease must first be ruled out. We do have specific tests for celiac disease. By the way, some experts believe that NCGS can transition into celiac disease. If your endoscopy/biopsy is only a month away, I would encourage you to stick it out and go back on gluten to get an official diagnosis. You still have time to get a valid test result if you start back on gluten now, 10g of gluten daily which is about the amount found in 4-6 slices of wheat bread.
    • BoiseNic
      dermatitis herpetiformis outbreaks while on strict gluten-free diet

      By BoiseNic · Posted

      I have the same problem. No matter what I eat, I seem to get a break out every 1 to 2 months. I do not do oats, citrus fruits, apples, onions and other foods also, as those cause reactions. The only time I have zero problems is when I fast. The only staple grain I have is quinoa, as that doesn't seem to cause me issues. I have linked mine to a microbiome imbalance. I am currently on month 3 of Skinesa. It's supposed to take 3 months before seeing results. I guess we'll see.
×
×
  • Create New...