Misdiagnosed?

[Paintball Player]

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?

[psawyer]

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]

  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]

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]

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

[Lisa]

  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.