Another Request To Help With Test Results

[Carrie923]

I've had right side abdominal pain now since March. 2 U/S, CT Scan, Thyroid nuc scan, HIDA Scan (normal) and Endoscopy/Colonoscopy (biopsy results = possible celiac)

Dr then ran Celiac panel and told me results were negative. I'm still having a TON of side pain, now it's up into my ribs and right shoulder blade as well. Hurts to take a deep breath. Hurts to sit certain positions. Just throbbing in my RQ.

GI Dr has now dismissed me. Said she's done everything she can do. I'm so over her and will be requesting another referral. How can she possibly say she's done everything and just leave a patient STILL in abdominal pain!?!??

Can you help with these? I can't make much sense of it. I was gluten-free for 2 weeks prior to this test:

HI Expected

Test Result LO Units Values

------------------------------------------------------------

Celiac Disease Comprehensive Casc

Immunoglobulin A (IgA), S 158 mg/dL 61 - 356

DQ alpha 1 01:02,02:01

-- EXPECTED VALUES --

Not Applicable

DQ beta 1 02:02,06:02

-- EXPECTED VALUES --

Not Applicable

Celiac gene pairs present? Equivocal

Method: Low to Medium or High Resolution Molecular Testing

Celiac Disease Interpretation SEE COMMENTS

Indeterminate for genes associated with celiac disease and

negative serology. Celiac disease very unlikely. However,

patients who are adhering to a gluten-free diet may be

seronegative.

[mushroom]

Your two weeks of gluten-free eating prior to testing undoubtedly had an effect on your test results. See the last sentence of comments. You make normal quantities of IgA. I have no genetic expertise, but it is apparent that you do not have DQ2 or DQ8 which are considered to be the only celiac genes in the U.S. (and are in fact the most common, but there are others recognized elsewhere).

For valid celiac results you would need to go back on a full gluten diet for at least two months and the results may still be negative, meaning you are perhaps non-celiac gluten intolerant. Are you feeling any better off gluten? Did you go off dairy too? (If you are celiac you usually temporarily lose your ability to digest lactose.) You should get a written copy of your biopsy report to see for yourself what it says.

[Carrie923]

Thanks. I feel good for a while and then the pain all comes back. It's seems like it's cyclical, showing up after ovulation. I only have D with relation to fatty foods (chinese, pizza, fast food) but not every time I eat.

Can you still have Celiac if you don't have the genes?

My Biopsy results:

A - Duodenum - celiac:

Duodenal mucosa with normal villous architecture and increased

intraepithelial lymphocytes (SEE NOTE).

NOTE: The morphological findings are etiologically nonspecific and have

been described in patients with latent celiac disease, bacterial

overgrowth, viral gastroenteritis, in association with NSAID use or H.

pylori gastritis, tropical sprue, immunodeficiency syndromes, and more

recently also as a manifestation of duodenal involvement in Crohn's

disease. Clinical and serological correlation is recommended.

B - Gastric - h. pylori:

Gastric antral and fundic gland mucosa with nonspecific reactive

gastropathy. No H. pylori-like microorganism is seen.

C - GE junction 45 - Barrett's:

Squamocolumnar junctional mucosa (cardia type) with chronic nonspecific

inflammation. There is no evidence of intestinal metaplasia.

D - TI - Crohn's:

Ileal mucosa with reactive appearing lymphoid aggregates, consistent

with Peyer's patches.

E - Random colon - microscopic colitis:

Colonic mucosa within normal limits.

[Teri Lou]

I wonder if you could have lymphocytic colitis? Since the lymphocytes are high. I had that initially and was told to avoid fatty foods, dairy and caffeine and it helped for a while....but then I progressed into Celiac (My understanding is lymphocytic colitis is sometimes almost like a precurser type of thing for celiac) So maybe you have something like this going on too (keep in mind I am just guessing and not a medical professional)

[Skylark]

I see the genetic test and total IgA in your results but not the celiac tests. Is there transglutaminase (TTG), gliadin, or endomysial (EMA)?

You don't "not have the genes". You have one copy of DQ2.2 which confers more risk for celiac than people without that gene. It's not a high-risk gene like DQ2.5 or DQ8, which is why your test is labeled equivocal.

Also, what were the biopsy results that lead to the "possible celiac" note?

[Carrie923]

Sorry -

TTG IgA Ab-Mayo Result: <1.2 Standard: <4.0 (Negative) unit/mL

What other blood test should I have done? I'm waiting for a call back from PCP and I can have her order more but I'm confused as to what to ask for.

The only Biopsy result I saw was the one I posted above:

A - Duodenum - celiac:

Duodenal mucosa with normal villous architecture and increased

intraepithelial lymphocytes (SEE NOTE).

NOTE: The morphological findings are etiologically nonspecific and have

been described in patients with latent celiac disease, bacterial

overgrowth, viral gastroenteritis, in association with NSAID use or H.

pylori gastritis, tropical sprue, immunodeficiency syndromes, and more

recently also as a manifestation of duodenal involvement in Crohn's

disease. Clinical and serological correlation is recommended.

Again, should I be asking for more?

[Skylark]

Yes, push for more! Increased intraepithelial lymphocytes (IELs) can be the first step in developing celiac disease. The IELs are your body's response to intestinal inflammation. Celiac isn't always like flipping a switch. Some people develop it gradually or start with patchy damage, so you can get a biopsy with increased IELs but no autoimmune damage. As your biopsy report mentions, you can get increased IELs for other reasons and it's your doctor's responsibility to rule those out. It's especially important to get H. pylori ruled out because it's so common. She should also be ruling out Crohn's. Tropical sprue is out unless you've been traveling and if you're taking NSAIDs you could try going off them.

If I were you I would definitely ask for deamidated gliadin peptide IgG and IgA and anti-endomysial IgA. If you want to leave no stone unturned, see what your GP thinks of repeating the TTG IgA and adding TTG IgG. Then I would give the diet a good, strict try. That biopsy,your symptoms, plus DQ2.2 is plenty of reason to suspect early stage celiac even with negative blood tests. If you respond well to the diet you have your answer.

[NoGrainNoPain]

Glad I read this, it's similar to my biopsy report. Waiting to take the genetic test. 

[GottaSki]

Welcome...this thread is older...but does contain great advice.

 

Hang in there and let us know if you have further questions by starting your own thread/topic 

[ravenwoodglass]

Glad I read this, it's similar to my biopsy report. Waiting to take the genetic test. 

Genetic testing can be part of the diagnostic process but it is not a definate that you don't have celiac if you don't have either of the two most common celiac associated genes. If you do come back negative on the gene test don't let that convince you not to do a gluten free trial when all your celiac related testing is done.