Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Can't Get A Diagnosis! Frustrated!

nu-to-no-glu

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted
I just registered today. Hello everyone. I am getting tested for Celiacs and Crohn's soon. This is all pretty scary. I've been reading some posts and felt instantly sad for everyone. I'm 41 yrs old. No one in the family with celiacs ( that we know of). I was just wondering....Should my allergist or gastroenterologist test for this? I am so confused with everything. I went into the ER for throwing up for 6 wks from a sinus infection...3 days later...I might have celiacs or crohn's; have a cyst on my ovary; found spots on my lungs, and I am now on a very special gluten-free diet until I am officially diagnosed. Very overwhelming. Oh yea... I am vit b12 deficient. :( OK I am done pouting now. I will read more of your guy's stuff. Maybe I can get a handle on this. After a nap.....Thanks for listening.

The doctors putting you on the diet before they do any testing will cause the tests to be a false negative. However sometimes dietary response is the best test there is. If your doctors are going to test you need to go back on gluten until the tests are finished. Otherwise they will want you to do a lengthy gluten challege which can be a really nasty experience after we have been gluten free and started to heal.

  • 1 month later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


csoctavia Newbie
csoctavia
Posted

hi,

I'm having the same problem with getting a doc on my side.After my son,I gained almost 40 lbs (I'm 5' and never wieghed over 100)and can not lose it.My doc keeps saying its stress or IBS.I had no control of bms and was sick after every meal. I saw on tv this diet were you give up 5 things,one was gluten.I finally started to feel better! After the 21 days I entered everything back into my diet and was fine till I ate gluten.I have been off it for almost 4 months and now my doc just tested me.He sent me to five other docs that all said I should get tested for it,but he didn't agree. Ofcouse the test came out neg.He wants me to eat gluten for 2 months then come back.I don't want to be that sick again!! My doc finally decided that he is not comfortable saying I have celiac disease but if not eating gluten helps,don't eat it.He just told me this yesterday.Don't know what to do next,but maybe I'll just stop eating gluten and say the heck w/docs!!My only advice to you is do what makes you feel good,I take fiber choice in the morn to help with making it to the bathroom,and for your baby,butt paste,you can get it at wal-mart,it will cure the diaper rash up almost immeditly,I swear by it!!Hope I helped,and if anyone has advice for me,please do,I'm pretty much just giving up on docs and living my life now,but if you know how to lose weight,help please!!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to coeliacmamma's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      New diagnosis

      I've tried a few bread recipes but I am by no means an expert. However, this recipe is the best bread I've made to date. It uses 3 grains (or their flours if you prefer) and requires a strong blender (like a Vitamix) but no bread machine. I use it to make English muffins or a loaf of bread. The muffins are a little easier to make and the bread comes out in...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to coeliacmamma's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      New diagnosis

      I don't have a bread machine but it sure looks like the bread I remember from BC. This is on my "to do" list.
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Summer 2026 Issue
      7

      Why Life with Celiac Disease Hasn't Improved in 10 Years, According to New Study

      Since being diagnosed with celiac, I have to come to understand that The Purpose of Man is to spread wheat across the planet. We are the puppets of wheat and collectively we lavish great effort in its service. It has become so natural and ubiquitous that no one even notices it is there until they run into or become an apostate (ie, celiac/NCGS/allergic) who...
    4. trents
      - trents replied to BelleDeJour's topic in Dermatitis Herpetiformis
      23

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      I think seafood in general will be high in iodine.
    5. Scott Adams
      - Scott Adams replied to coeliacmamma's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      New diagnosis

      This recipe was created by a scientist and posted years ago. I will admit I haven't made it, but it's also supposed to be quite good:
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,157
    • Most Online (within 30 mins)
      10,442
    CSchmidt
    Newest Member
    CSchmidt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      New diagnosis

      By Aretaeus Cappadocia · Posted

      I've tried a few bread recipes but I am by no means an expert. However, this recipe is the best bread I've made to date. It uses 3 grains (or their flours if you prefer) and requires a strong blender (like a Vitamix) but no bread machine. I use it to make English muffins or a loaf of bread. The muffins are a little easier to make and the bread comes out in premade portions. It passes the sandwich test and it tastes great over several days (to my taste, store-bought gluten-free breads tend to lose their flavor on the second day) This recipe is pretty flexible in terms of varying ratios or types of grains.  https://www.instagram.com/p/DPDnyaJjpHh/
    • Aretaeus Cappadocia
      New diagnosis

      By Aretaeus Cappadocia · Posted

      I don't have a bread machine but it sure looks like the bread I remember from BC. This is on my "to do" list.
    • trents
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By trents · Posted

      I think seafood in general will be high in iodine.
    • Scott Adams
      New diagnosis

      By Scott Adams · Posted

      This recipe was created by a scientist and posted years ago. I will admit I haven't made it, but it's also supposed to be quite good:  
    • Scott Adams
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By Scott Adams · Posted

      That sounds like really encouraging progress, and it is great that you are narrowing things down so carefully. It can be surprising how something like added iodine in a milk alternative might make a difference for some people with dermatitis herpetiformis-type symptoms, so your note may definitely help someone else who is still dealing with that last bit of itching. It also sounds like you are finding a more comfortable routine with almond and soy milk, simple safe meals, and watching individual triggers like tuna without feeling completely restricted. This really is a learning curve, and keeping track of what improves or worsens symptoms is often the only way to spot patterns. I hope the dermatology appointment goes well...let us know.
×
×
  • Create New...