Pinpointing your trigger for developing celiac disease, if there is one?

[ymayhew]

Hi everyone. I am new here and to the whole world of celiac disease. After a positive ANA with high titer and positive/high ttg igg levels, I had a biopsy done two days ago and am waiting for the results.

I had biopsies taken in 2015 (not specifically looking for celiac disease) and it was negative. In 2016 I started working at a pizza shop that uses HIGH GLUTEN flour. My symptoms (weight loss, diarrhea, extreme fatigue, general feeling like crap) came on quickly after being on vacation for 10 days, where I was removed from being around so much gluten for 12+ hrs a day.

Am I crazy for thinking my job could have caused, or exasterbated, celiac disease? 

[GFinDC]

Hi ymayhew,

A lot of people have at least one of the genes for celiac disease.  Approximately 30% or so in the USA.  However a relatively small percentage actually develop celiac disease.  It may be that a virus kicks off the celiac reaction, but I don't know if that is proven.  The reason celiac starts in some but not others is still a mystery.

It seems like people have worse symptoms after being off gluten and then going back on it per member posts here.  That seems to align with your experience of being away and coming back to work in the pizza joint.  You'll probably need to find a different job if you have celiac disease.

You only need one positive antibody result for celiac damage to occur.  Even if your biopsy doesn't show celiac damage, I suggest going gluten-free.  Celiac testing is not perfect yet and false negatives are possible.

Edited December 14, 2018 by GFinDC

[cyclinglady]

I agree with GFinDC!  

Even if the biopsies are negative, trial the gluten-free diet.   Talk to your doctor about the ANA and the implications.  It is often a false positive with celiac disease and will resolve when celiac disease is treated.  

[ch88]

On 12/13/2018 at 2:50 PM, ymayhew said:

Am I crazy for thinking my job could have caused, or exasterbated, celiac disease? 

I have heard that breathing lots of flour can cause an allergic reaction to gluten. This is known as a "bakers allergy." I doubt that that was the trigger for celiac disease. 

[Beverage]

Eyes ears nose and mouth all lead to the gut.  Breathing in airborne flour through the nose or mouth get that flour to the same place as eating it.  This is NOT an allergic reaction if you have Celiac's disease.

Allergies to gluten can be developed, but it's different response of the immune system than Celiac's which is an auto-immune (body attacks itself) disease.

[notme]

you probably shouldn't be breathing all that flour if you have celiac (i wouldn't - even if it didn't make me physically ill, just the thought would lolz)

from what i understand, you can have the gene and some people never develop the disease.  but it can be triggered by a number of things, including traumatic events, extreme illness, pregnancy/childbirth <that was mine) and there are so many different symptoms that it flies under the radar while you're trying to figure out other problems - ie:  migraines, rash, fatigue, etc and a whole host of other problems when you start becoming malnourished and lacking vitamins and nutrients. 

you had a positive?  you're done with your testing?  get off the gluten.  i still have doctors telling me i 'might not really have it' and if i would have waited for everybody to agree, i would be dead by now.  my response to the diet was all the proof i needed.  it took a very long time for my guts to heal but i was also undiagnosed for 25 years.  lately, things have been pretty great.  i've been able to add back just about everything but gluten lolz oats are still 'iffy' but i've come a very long way.

good luck!

[Alaskaguy]

While in retrospect it is quite obvious that I had GI symptoms of celiac disease for most of my life (I am 56 years old now), it was only after getting a bread machine in 2012 that I started to get the dermatitis herpetiformis.  Up until then, I was eating whole-wheat pasta, and wheat-containing breakfast cereals, but only rarely ever ate bread (I was picky, and only liked artisanal bread).  And then, I was suddenly eating bread four or five days a week!  And not only bread, but whole wheat bread, to which to improve the texture I was adding EXTRA GLUTEN!  And then I would wonder why my symptoms would abate (but not disappear completely) in the summers --- because in the summer, I was almost never making bread.

Interestingly, a few years ago, I read in an LDS ("Mormon") Church publication that they had modified their longstanding advice for their members to stockpile large amounts of wheat before any other food, due to the recognition that suddenly relying on wheat for one's daily diet, when one had not done so before, "could lead to certain food-related sensitivities and unexpected health problems".