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

Missed Diagnosis,conflicting Diagnosis

lexusca

By lexusca
in Coping with Celiac Disease

Recommended Posts

lexusca Rookie
lexusca
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

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

Celiac.com Sponsor (A8-M):


zus888 Contributor
zus888
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

Yes, but my Gi doc had a the complete opposite recommendation. I also got a 2nd opinion with the same recommendation as my Gi doc, which was to go on a strict gluten-free diet and get re-scoped in about a year. That's really the only way to rule out or confirm celiac. (Villous blunting was found in endoscopic biopsy, but blood tests were mostly negative - I had one weak positive Gliadin IgG).

mamaw Community Regular
mamaw
Posted

Sounds like another mainstream doctor who knows nothing about celiac or gluten sensitivity... there are tons of these . type doctors running loose & getting paid big bucks.......sorry ....I would not subject myself to scopes even monthly...I would either go gluten-free on my own or else find a doctor who knows about celiac...

If you let us know where you are from maybe someone will give you a name of a doctor who understands celiac.

Hope you find answers soon

blessings

mamaw

sa1937 Community Regular
sa1937
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

Huh? I am also very confused by your post.

You mean you already got the biopsy results? It usually takes a week or so. IF the biopsy was positive, it would trump the negative blood work and you have celiac. False negatives are not uncommon on the celiac blood panel. Did you get copies of the celiac panel (hopefully your dr. requested the complete panel or the new DGP test) as well as a copy of the biopsy results? If not, get copies and post results here when you do...there are some knowledgeable people here who can help you interpret them.

I'm more than confused by a repeat scope, cat scan and bloodwork. ??? If your biopsy was positive, why would your dr. want you to go back to eating gluten?

txplowgirl Enthusiast
txplowgirl
Posted

Positive biopsy is the Gold standard diagnosis. You are Celiac and the dr is an idiot.

zus888 Contributor
zus888
Posted

Actually, villous blunting and the other biopsy results that are representative of celiac aren't NECESSARILY due to celiac. The physiological changes to the small intestine could also be due to soy or milk intolerance, Crohns, intestinal carcinoma, lymphoma, and some others that I cannot remember. Yes, the chances of it being celiac is much greater than the other issues, but you'd have to do more testing to really be sure. The "testing" my doc has suggested is doing a strict gluten-free diet for a year, do another scope, and if my intestines are healthy, then we have our answer. If not, then we'll need to look further into the other possible causes.

I have talked to him about this because they found inflamed abdominal lymph nodes during an ultrasound in monitoring another disease I have. To me, I feel the chances of my biopsies being the result of something more sinister (like lymphoma) are higher because we have what could be another symptom or sign that points to that. I didn't want him to jump to conclusions and diagnose celiac without as least considering the other possibilities because if it is something like cancer, then the earlier we find it and deal with it, the better chances I have. So, those possibilities are in the back of his mind (as with the doc who gave me the second opinion), but we are all hoping that it is celiac (and chances are that's exactly what it is). But only until we see improvement after going gluten-free will we know for sure.

Personally, I also find it VERY odd to get weekly blood tests for celiac, let alone the scope and CT scan.

ReferencePlease Newbie
ReferencePlease
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

If you feel better being off gluten, don't go near the stuff. I have opted to skip any more testing because making myself ill to get the proper label (celiac or wheat intolerant) is just not worth it.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.