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

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

  • 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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.