Positive Biopsy, Negative Blood Work... Years Of Unexplained Symptoms Please Help :)

[SnowedIn]

I am a total newbie at this forum posting so please forgive me if I ramble, or include information that is completely irrelevant.  

 

I put the basic notes right below, then a brief history for curiosity and perhaps someone who can relate

 

 

~POTS- postural orthostatic tachycardia syndrome, cardiologist/POTS specialist believes this to be secondary

~VERTIGO- after certain meals

~IRRITABLE- in between meals

~TACHYCARDIA- unrelated to POTS, usually after eating certain meals

~POSTIVE D DIMERS- 4 to date (in 2 years) PE ruled out, dr's say it's from inflammation

~RHEUMATOID ARTHRITIS- Rheumy diagnosed based on extreme joint pain and positive Rheumatoid Factor but not sure if this 100%.  My gut is saying NO

~EXTREME JOINT PAIN- comes and goes, can't quite figure out triggers

~SINUS INFLAMMATION- always on my MRI's but I don't have a sinus infection

~CONSTIPATION- can go 2-3 days w/o BM

~BULLSEYE RASH- treated for ringworm never went away with medicine dr says it's "just a rash"

~ECZEMA- tiny little raised bumps that itch

~WEIGHT FLUCUTATION- 2-3 LBS a day

~BLOATING FEELING- sometimes sternum sticks out that's how bad it gets.  Feel very full after certain meals after just a few bites

~NUMBNESS AND TINGLING- hands and feet

 

 

BIOPSY:

I was admitted to the hospital from the ER on Monday of last week (12/2/2013) with abdominal pain and severe dehydration.  I had spent a week and a half vomiting after meals, and a pain under sternum.  PC diagnosed h pylori the week before admission.  ER dr found "sludge" in gallbladder, I was admitted and under the general surgeon's care.  I underwent a hidascan the following morning in hospital which showed slowing defraction time, instead of 34+ seconds it was 17 seconds.  Surgeon was not convinced GB was the issue as my pain is on my left side (stomach).  Within an hour I was in with the hospital's GI for an upper GI scope.  GI dr said he saw irritation but no sure signs that would explain the stomach pain and vomiting, was able to take a few biopsies.  GI dr office called on Thursday (2 days later) that my biopsy of my upper intestines showed a change in the vili and suggests Celiac's disease.  Blood was drawn today (12/9/2013) to diagnose Celiacs.  Due to the on going health issues I have had I have had numerous negative Celiac's panels.  However, the reason why I have had so many Celiac panels done in the first place is b/c how eerily similar my symptoms are to those of people who have Celiac's disease.  Is it possible to have Celiac's w/o positive blood work?  What else would cause changes in my vili that present as Celiac's but isn't? 

 

Started in October of 2011, still no real answers.  Blood work shows major malabsorption issues (low vitamin d, potassium, B12, sodium), positive d dimers (no PE present), neurologist work up shows white matter on brain but not concerned about MS, cardiologist work up shows POTS and tremors they believe are related to POTS however, I notice them after certain foods I eat, I respond well to prednisone for joint pain, just recently lost my vision but came back. Known INTOLLERANCES (not allergies blood work ruled out) baker's and brewer's yeast, soy, and most nuts. 

 

Any help would be greatly appreciated.   I am happy to answer any questions as I am sure I have left important clues out.

 

Previous Celiac's panel (most recent)

 

TISSUE TRANSGLUATMINASE AB IGA - <1.2

 

TISSUE TRANSGLUATMINASE AB IGG- 1.8

 

GLIADIN AB, IGA- 4.6

 

GLIADIN AB, IGG- 3.7

 

IGA 238

[Piccolo]

Snowedin,

 

Welcome,  Yes you are one of us.  It is overwhelming at first.  It looks like you have many of the neurological symtoms of celiac.  The unidentified white spots are one.  It also sounds like you have Dermatitis herpetforma which is the skin form of celiac.

 

I have had a few times where dizziness was a side effect for me.

 

It is best to start simple.  As long as you just eat whole foods meats, fruit and vegetables.  you may have to drop dairy for a while because the villi that absorb the lactose are damaged and need to heal.

 

You will need a new toaster, pasta strainer and wooden spoons etc.  Condiments are another issue.  You need your own that has not touched wheat bread (mustard, mayo, butter, peanut butter, etc.)

 

It will get easier as time goes on.  One more thing all first degree relatives need to be tested.

 

Hope that helped.

 

Susan

[dilettantesteph]

I think that you need to find a doctor who is more knowledgeable about celiac disease.  You don't need positive blood work for a diagnosis.  A positive biopsy is the gold standard for diagnosis.  You  need a doctor who can look at the results of the biopsy with a better understanding of the disease. 

[NoGlutenCooties]

From what I understand, a positive biopsy means you have Celiac.  There seems to be some disagreement about how reliable the bloodtests are but I know some have reported negative bloodtests with a positive biopsy as well as "borderline" bloodtest results that rely on the doctor making the right call.  The true test will be if you go completely, 100% gluten-free and your symptoms go away.  But you have to go 100%.  Just to give you fair warning, some have reported that their symptoms actually got a bit worse before they got better - seems to be a natural part of the healing process.  Other food sensitivities/intolerances seem to be common with Celiac too, so as Piccolo suggested, stick to simple, easily digested whole food at first and go easy on your body.  It has a lot of healing to do.

 

Good luck and welcome to the forum!

[sweetsailing]

_{Hi there,}

 

_{I don't doubt your biopsy, however some of your symptoms (bullseye rash in particular) could suggest Lyme disease.  Have you been tested for Lyme disease?  Many symptoms of Lyme disease and celiac disease overlap and are fairly similar.  Just a thought.}

 

_Thanks

[nora-n]

the celiac blood tests are antibody and IgA type tests, and the sickest patients do not make enough of those antibodies for the tests to work. I even saw references that 20% of biopsy proven celiacs with total villous atrophy have negative blood tests

[1desperateladysaved]

I would like to know more about this information.  Do you know where you saw information about flattened villi and lack of IgA?  I have been looking, wondering about that.  .