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

Biopsy Results Tomorrow


mmm1017

Recommended Posts

mmm1017 Rookie

I had my bloodwork and my biopsy last Friday. I know that some GI doctors do the bloodwork first, but mine was pretty certain from my medical history that I was either celiac or gluten intolerant. While she was doing the EGD, she took pictures of the duodenal bulb (with a cracked-earth appearance) and the the duodenum (scalloping). She said it looked like celiac to her but we would wait for the biopsy results. She was also concerned about food residue in the gastric body, fundus, and antrum; so, she did a biopsy there too. I'm supposed to call tomorrow for the results. If the genetic test also comes back positive, my children have to have that done as well. Our allergy doctor is concerned that my 8 year old is already showing signs of celiac and my baby is not gaining weight the way she should. Hopefully, no matter what, my kids can avoid all of this. What are the chances that the appearance of the duodenum is from something else?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Possible, probably not probable, is my best guess.

mmm1017 Rookie

Possible, probably not probable, is my best guess.

On the one hand, I hope it is negative for my children's sake. On the other hand, it would explain my medical history. Milk allergy (from infancy), IBS (diagnosed as a teen), migraines (since childhood), fibromyalgia (diagnosed 3 years ago), hypothyroid, and on and on. It would be wonderful for it all to go away by simply changing my diet. Well, maybe not "simply", but you catch my drift. An end to the pain and fatigue...

mmm1017 Rookie

On the one hand, I hope it is negative for my children's sake. On the other hand, it would explain my medical history. Milk allergy (from infancy), IBS (diagnosed as a teen), migraines (since childhood), fibromyalgia (diagnosed 3 years ago), hypothyroid, and on and on. It would be wonderful for it all to go away by simply changing my diet. Well, maybe not "simply", but you catch my drift. An end to the pain and fatigue...

And they were all positive for celiac. What now?

mushroom Proficient

And they were all positive for celiac. What now?

Welcome to the club - you will have to learn the secret handshake :rolleyes:

The next step is to have your kids tested for celiac too, I would think, since it is so genetically based. Also the genetic testing because they may not test positive for celiac right now so that would show the potential.

You must stop eating gluten now, of course, but the results of the children's testing and a family meeting will be necessary to decide how gluten free your house is going to be, whether your husband would be onboard with not eating gluten at home, etc.,etc.

Fire away with any specific questions you have.

Twinklestars Contributor

I'm glad you have answers for your ongoing medical problems. Gluten free straight away for you, but your kids will need to stay on gluten until they're finished with their testing. I think it's important to get them tested, so you know for sure whether they're celiac. I would imagine a positive diagnosis would make it easier to explain to their school, etc. Good luck :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,352
    • Most Online (within 30 mins)
      7,748

    Linda L Smith
    Newest Member
    Linda L Smith
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
    • Philly224
      Thanks again everyone! Twenty mins on here way more helpful than both Dr's combined 😅
    • trents
    • trents
      I would go for four weeks to ensure a valid test, if you can tolerate it, that is.
×
×
  • Create New...