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

A Good Doc In Orlando Fl, Anyone?


gluten free overseas

Recommended Posts

gluten free overseas Apprentice

Hi, everyone. I live overseas in a country where celiac is so rare that the hospitals do not have the capability to test for it. So I did a self-diagnosis through an elimination diet. Like most of you, my life has dramatically changed even in the couple months I've been off gluten. It's too late for me to get the blood tests because I've been off gluten for a while, and there's no way I'm eating gluten again ever--I get glutened through cc, no way am I ever eating a slice of bread.

So. I have two small children. Both show some possible signs--fatigue with one, severe constipation with the other. I have not put them on the gluten-free diet yet because I want to get them tested first. I am visiting the States in two weeks-- we'll be 2 weeks in Orlando FL, and 4 weeks in Syracuse, NY. I have been trying to arrange doctors appointments to get my children tested while I'm visiting the States. My mother just said that she had a huge conversation with a pediatric gastro doctor's nurse (on in Orlando FL) and this doctor we had an appointment with has never ordered blood tests for celiac for children--basically, doesn't know much about it and would have to refer me to someone else anyway. I'm in a time crunch and need to get the blood test done in a short time frame. Does anyone know of a good doctor who could (himself or herself) order the blood tests? In Orlando or Syracuse?

What to do what to do? Do I just put my children on a gluten free diet and do an elimination thing with them too? I mean, it's hard on a child--all the class parties and halloween and everything--I don't want to put them on it if they don't have it. But I don't want them to suffer like I did as a child. I'm kind of stressed out and close to tears.

Any advice?


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



Celiac.com Sponsor (A8-M):



viviendoparajesus Apprentice

I had a genetic test through Entero Labs, which did not require a doctor's order to get it. It does not require having gluten to do the test. I would talk to your kids about it and how you suffered and how this might help them feel better to try not having gluten. Given the gluten free product industry it is a good time to go gluten free. I think it is important to consider symptom relief but also the damages that might go unseen. Therefore, if you and the kids feel better avoiding gluten it could be worth it. Sure it is hard not to be able to have mainstream/ popular foods and be the odd person out, but it is worse to be sick and to be trying to heal years of damages. You seem to have experiences years of being sick, so it seems like it would help them to at least give a gluten free diet a try. I live in the Orlando area and I do not know about a good doctor let alone one who works with children. I do not think this is a good area for getting tested and treated for Celiac's/Gluten Intolerance. Since you have not been tested yourself you do not know exactly what could have been passed on to your children. Eliminating gluten would help if it is gluten/wheat allergy, celiac's, gluten intolerance, etc - but different tests are going to be positive for each of them. Hopefully there is a doctor in Syracuse. I really liked the Entero Labs test since I did not have to eat gluten and make myself sick and it seems more accurate since it is looking at my genes. In addition, I have had lots of symptoms but I usually look fine on lab tests, so by looking at my genes it gave an idea of what was going on versus me seeming like I am fine on the ordinary blood tests. Best wishes.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    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

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.