Tested negative 3 years ago still unsure

[Cara1]

Hello. I've been dealing with digestive issues for the past few years, went to various doctors and eventually found out I'm lactose intolerant. I thought the mystery was solved when the LI was discovered, but, I started having digestive problems when not consuming lactose in the last month. I am going to go to a GI soon, but, I wanted some insight from those with Celiac to see if it could still be a possibility.

I had a blood test done 3 years ago for Celiac that was negative but, with new symptoms, I question it.

Issues I've dealt with:

-mild inflamed rib feeling off and on on both sides

-never feel full when eating (feel hungry then just not hungry, never like I've had enough food)

-chronic issues with BV (female infection)

-never have a healthy BM anymore the last month-loose in the morning and if I go again it's small and hard (also acidic smelling stool)

-anxiety due to the stomach issues

-the worst symptom I have developed now is excess gas every night that I can't get rid of until I go to the bathroom the following morning

Does any of this sound like Celiac? Thanks.

-

[cyclinglady]

The only way to know for sure is to get retested.  Be sure to ask for the complete blood panel because I personally did not get a positive on the standard TTG screening test yet I had moderate to severe damage.  

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes! 

 

[Cara1]

Thanks for the information. Yeah, my doctor definitely didn't do the full testing.  I've heard recently how the blood tests aren't always accurate, but, I wasn't told that after the test. Do you know if endoscopies (with biopsies) are reliable or is there still a chance they are not?

Also, does anyone know the percent of those who are lactose intolerant and also have Celiac disease? I've never been able to find info on this but wanted to know because I know Celiac can cause lactose intolerance.

[Jays911]

Endoscopies are pretty accurate. My blood work was iffy. My Doc predicted I was not a cellac, but did the scope. I am. And am glad he was willing to do the right thing. My life has been transformed. 

[cyclinglady]

Lactose intolerance is very common among newly diagnosed celiacs, but it is also common in the general aging population and different races (e.g. Asian).  So, I can not answer your question.   An endoscopy is still considered the gold standard in helping to diagnose celiac disease.  But taking just the typical 4 to 6 samples can be a hit or miss!  The small intestine is vast -- the size of a tennis court.  Plus, biopsies are taken at the top of the small intestine and can miss damage as the intestin is about 20 feet.  Sorry, but there are no easy answers when it comes to diagnosing celiac disease.  ?

[Cara1]

Thanks for the help. I figured an endoscopy was better. I can't believe how hard it is to diagnose celiac disease, at least for some. It doesn't help either that doctors (at least in my experience) don't want to even do much testing and  just want to say "it's probably IBS." They didn't even suggest to me before the possibility of food intolerances/allergies causing my stomach problems. Only my GP ordered the one celiac test, and I figured out the LI (and confirmed with my doctor) after I started noticing I would get sick 3-5 hours after ingesting milk.