Intro/need Advice/feeling Frustrated

[RobinRubin]

I have been suffering from abdominal pain and bloating since I was at least 13 years old. When I was 15, I went to a pediatric GI doctor to have the symptoms evaluated.  I was tested for lactose intolerance, parasites, and had an upper GI, all came back negative.  I just turned 42 years old.  Two years ago I broke out with hives one day, and the next day my feet swelled, like balloons. I never figured out why this happened, allergy tests were negative.   Six months later I developed an intensely itchy, vesicular rash on my forearms.  I thought I had scabies.  I scratched all night long (for weeks), bled from scratching.  Of course the doctors had no idea what it was.  It went away and came back a few months later.  I figured it must be sunscreen, or the sun (I tested the sunscreen on my belly, no reaction from it).  I have purple marks where the rash was.  

 

I saw an integrative nutritionist who believes I have yeast overgrowth (this was fall 2012).  She wanted me to do a blood test.  I brought the lab work to my PCP but she refused.  I can't do an elimination diet because I am nursing a 4 month old.  My PCP wanted me to have a pelvic ultrasound for the bloating, but I refused.

 

I have given up gluten on and off for about 2 years now. (DH had 18 inches of his colon removed 1/2012 for "diverticulitis" and has been gluten-free since 8/12).  I definitely do not get bloated, rashes, or have pain when I avoid gluten.  My joint pain is going away, too.  And I am not so irritable! But, I knew if I were to be tested for celiac I had to be eating gluten, so I ate a sandwich before going in for the test.  By the way, I also realized a few weeks ago that my baby gets green, watery diarrhea when I eat gluten.

 

I finally got in to see a GI specialist today, which was a waste of time.  I had a blood test  a few weeks ago, before today's visit.  She said my Celiac tests were negative (she did IGA blood, TIS Transglutamina) and HLA DQB which says, "This DQB1 genotype is a very low risk in Celiac Disease predisposition." 

 

Basically, she sent me on my way and said if I feel better not eating gluten, then don't eat it.

 

It's not like I want to be diagnosed with Celiac, but that rash I had sounds just like Dermatitis Herpetiforms.  The GI doctor said it usually occurs in flexeral areas but I have read it could form anywhere.

She did not do any physical evaluation other than palpate my abdomen.  No questions of other symptoms.  

 

I am just frustrated because like I said, this problem has been going on my entire life pretty much.  I hated school because my stomach always hurt so much, I could not wait to get home.  

 

I would trust the lab results if it were not for that rash (and other than a sandwich the day of the test, I haven't been eating gluten).  But she said the HLA DQ test is the most accurate regardless of whether or not I was eating gluten.  And I suppose I was "hoping" she might offer me some other suggestions or look to evaluate other reasons for my pain/bloating, not just send me on my way. I mean, the work up I had done was done in 1987!  It is now 2014!

 

Any advice? 

Thank you!

 

 

 

[Deekle]

A sandwich before a biopsy or serology test is not going to work to diagnose celiac disease.   Celiac is caused by autoantibodies attacking the mucosa of your gut.  Antibodies are part of the adaptive immune system and take time to really ramp up.  In order to have detectable levels, you should be eating gluten for around 6 weeks for serology and about 2 weeks for a biopsy.

 

The DQB1 info is kind of useless without knowing which alleles you fall under.  (DQB1*0201, *0202 and *0302 are linked with celiac disease and correspond to HLA-DQ2 and HLA-DQ8)  at least 95% of celiacs will beither DQ2 or DQ8.

 

The gold standard of celiac diagnosis is a biopsy.

 

Kareng likes to link to this site and it has a lot of useful information.  You might want to take a look.  It will explain a lot of info about how diagnosis works.

 

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[124chicksinger]

I am no expert, and tested negative for celiac disease recently, but strongly believe I am sensitive or intolerant to gluten.  That written, I already know that you're having gone gluten free - then eating a sandwich the day of the test - is reason enough for a negative result.  One must eat gluten successively, at least I believe the equivalent of 2 slices of bread daily (if not more), for a period of weeks, perhaps 6 weeks (?) to get the gluten into the system to be tested.  

 

Certainly, someone else here can address that.

 

As to the rash, I also am susceptible to a petechia looking rash, currently again reappearing on my right ankle and working its way up my leg; also just starting again on my left foot.  This is 2.5 weeks after removing gluten, so I cannot say it is gluten related or an allergy to something else, be that food or environmental.   If your rash is viable right now, you should make an "emergency" appointment with a dermatologist who can, at the least, give it a looksee, and at the most, scrape it and send it for testing.