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

Misdiagnosed?


Paintball Player

Recommended Posts

Paintball Player Newbie

Tl;dr I've never gotten Ill knowingly consuming products with gluten in it. I think I may have been misdiagnosed.

I'm starting to wonder if I've been misdiagnosed win celiac disease. I was diagnosed in late 2005 and since have maintained a rigid gluten free diet. Since then I've been fine and see the doctor biannually and my stomach/bloodwork is always perfect.

I've tried to see how bad I have allergic reactions to gluten products a few times since I was diagnosed.

#1 Test: I decided to have a slice of cheesecake on m birthday the year following when I was diagnosed. This was sort of a test sort of a birthday treat. I devoured the whole thing including the bread base of it.

Result: I was fine, felt great and nothing was wrong with my stomach.

#2 Test: I used regular flour bread instead of my gluten-free Bread a month ago. I felt fine and never got I'll.

#3 Test: I went to an army base for a course over the summer. I ate food on the base for all 7 days O was there; I know it was not gluten free. I never so much as felt a ping in my summer over the 21 non gluten free meals I consumed there.

It seems whenever I have an allergic reaction it's from something as minscule as a tiny amount of the wrong spice on a steak. I've never gotten sick when I have an indulgence and knowingly consume gluten products.

Furthermore; In my understanding celiac disease is a hereditary trait. Once I was diagnosed every single person in my family and extended family have had their bloodwork tested. Everybody is fine except for me. I am not adopted. The only thing similar to celiac disease is a lactose intolerance which a couple of my cousins (and maybe others) have.

So at this point I have become very skeptical about my 'diagnosis'. Does this sound like I may have been misdiagnosed?


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Celiac disease is NOT an allergy. It is, of course, possible to have celiac disease and also be allergic to wheat.

Your follow-ups being normal is normal when you are strictly following the gluten-free diet. Without gluten to provoke the autoimmune reaction, there are no gluten antibodies and your body heals so the villi are healthy.

It is possible to have "silent," or asymptomatic, celiac disease. It does not mean no harm is being done to your body when you ingest gluten.

You did not say how you were diagnosed. False negatives are possible with both the blood test and the biopsy, but false positives are extremely rare.

ravenwoodglass Mentor
  On 3/15/2011 at 6:29 PM, psawyer said:

Celiac disease is NOT an allergy. It is, of course, possible to have celiac disease and also be allergic to wheat.

Your follow-ups being normal is normal when you are strictly following the gluten-free diet. Without gluten to provoke the autoimmune reaction, there are no gluten antibodies and your body heals so the villi are healthy.

It is possible to have "silent," or asymptomatic, celiac disease. It does not mean no harm is being done to your body when you ingest gluten.

You did not say how you were diagnosed. False negatives are possible with both the blood test and the biopsy, but false positives are extremely rare.

Agree strongly with this. In addition it used to be thought that young people would outgrow celiac because it can take some time for symptoms to appear after we have fully healed. Some will have organs other than the gut effected, issues with thought processes, mood, liver problems, thyroid, joint and muscle issues and so on before gut symptoms become apparent. If you were diagnosed by blood test or biopsy you need to stay gluten free for life.

As to the genetic aspect there are many who have the associated genes but don't develop the disease. Also some folks have impact to other organs but no gut symptoms and people in that instance have an even higher rate of false negatives on blood tests than those with gut issues.

Lisa Mentor

How were you diagnosed? :)

There can be other causes for what would appear to be a positive biopsy.

From a Medscape article:

"Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data."

Celiac Disease CAN and be a cumulative diagnosis through positive blood panel, biopsy/endoscopy exam and positive dietry results.

Paintball Player Newbie

Thanks for the quick replies. Lisa, I had an endoscopy done at Vanderbilts Hospital (university hospital)

Lisa Mentor
  On 3/15/2011 at 8:39 PM, Paintball Player said:

Thanks for the quick replies. Lisa, I had an endoscopy done at Vanderbilts Hospital (university hospital)

Well then, if you don't meet the criteria for the other issues that can cause intestinal atrophy, Celiac may be a true diagnosis.

As it's been mentioned many times, gluten sensitivity has a wide range. Having been gluten free for several years, it may take repeated and consistent gluten exposure for an unknown period of time, for you to achieve a reaction...perhaps by that time maybe some other issue may have jumped in your boat. <_<

I also do not react to cross contamination or even full exposure. I continue to be gluten free, but feel fortunate that I am not severely sensitive as many are here. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,279
    • Most Online (within 30 mins)
      7,748

    cruzio
    Newest Member
    cruzio
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any...
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like...
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity. ...
    • chrish42
      All I can say is this site is great!
    • Scott Adams
      From their website I see "organic barley leaf powder" as an ingredient. Keep in mind that the gluten is in the kernel, and not in the leaves. https://drinkag1.com/about-ag1/ingredients/ctr
×
×
  • Create New...