Biopsy Positive- Now Doc Wants Blood Work?

[starrymazed610]

Hello everyone!

I am newly returning to these boards, as I once frequented them a few years ago.

In 2008, I heard about Celiac's and read a list of frequent symptoms. I have always had too many stomach issues to mention, and so I made an appt with a GI dr, but immediately went gluten free. I was gluten-free for a few weeks when I visited the dr and explained what was going on. They gave me the barium test, blood work for celiacs, and then I had an upper endoscopy. The results left me more confused than ever. The blood work was negative for Celiac, but the other tests found a hiatal hernia, GERD, a stomach ulcer, and possible slow emptying stomach. The results of the biopsy stated there was damage to the villi  but when I went in for a follow up, I was told I did NOT have celiac disease. 

Since then, I had another baby, developed more food (fruit and and vegetable) allergies, and stomach issues progressed. I was kinda gluten-free on and off, here and there but not really. I recently moved and found a new GI dr. I scheduled an appt with him, because at times, the bloating is unbelievably painful and my stomach hurts so bad that I cannot eat anything without pain. This comes and goes. He did routine blood work and scheduled another upper endoscopy. After the endoscopy, he told me they found inflammation of my esophagus and stomach and that biopsies were taken. The biopsies were positive for Celiacs he told me, but NOW he wants to have blood work to confirm. I have only been gluten-free for two days now, so I am sure it wouldn't affect the blood test, but my fear is that it will be negative again and then I'll be back to where I was before- not knowing whether I have it or not. 

Has this happened to anyone else? I have three children who have stomach issues, too. My oldest had an upper endoscopy when she was eight and it was negative. 

Any input would be greatly appreciated!!

[Takala]

I don't usually say this, but....  your problem isn't the diagnostic process at this point.  You've had 2 positive biopsies over a 5 year span and have never adhered fully to a gluten free diet.   Untreated celiac (not sticking to a gluten free diet) will frequently result in yet more food allergies and intolerances because of "leaky gut."  It will result in food cravings caused by malnutrition because flat villi don't work as they should.    It will also damage the rest of your body, as vitamin and mineral shortages affect the production of hormones. 

 

I don't have a positive blood test result, but the other physical damage that I will be having to suffer with the rest of my life, on a daily basis, because physicians were fighting the diagnosis in pursuit of more insurance reimbursements is enough to motivate me to stay the heck off of gluten.  It would be nice if the doctors could get their act together on the issuing of diagnosis, ( a few have, more are and will be) but that won't happen until Big Pharma has its Magic Pill/shot for them to distribute, so I'm not holding my breath. 

[EmiPark210]

If you had a positive biopsy result then you have celiacs. I don't know why your doctor wants blood tests unless s/he is testing for something besides celiacs. Your initial tests could have come back negative because a few weeks is time enough to heal.

Celiac can turn on at any time so make sure your children stay on at least a light gluten diet for at least 3 months before testing and if their tests come back negative, continue to get them tested every couple of years.

[bartfull]

Your doctor should definitely test you for vitamin deficiencies. If you have been celiac for this long you haven't been absorbing the nutrients you need so you will probably have to supplement. Maybe that is what he is talking about when he says he wants to do some blood tests? If not, ask him to do so.

 

And yes, if your kids are having stomach issues it is very possible that they have celiac too. If it turns out that they do, you can make the whole house gluten-free which will help tremendously - no chance of cross-contamination in a gluten-free household.

[starrymazed610]

Thank you for the responses. I already had a CBC and some blood work for deficiencies done. This is just for Celiac, I believe. The doctors office just called me and told  me they are faxing over the paper work to the lab so I can go and get my blood drawn tomorrow. When the doctor called me the other day to give me the results of the biopsy  he told me he wanted to get blood work taken next, and if that was positive then I would have to meet with a Registered Dietitian and have my children tested. When I mentioned the fact that there seems to be a lot of false negatives for the blood work, he agreed, and said that the biopsy is still the gold standard for diagnosing, yet fell short of actually diagnosing me. I guess that is why I am frustrated. I have spent years not feeling well, and feel as though these doctors admit possible celiac, but fall short with actually diagnosing me. Problem is, it is hard for some doctors and family to take me seriously without an "official" diagnosis...

[pricklypear1971]

At a certain point, excluding an alternative credible diagnosis, you've got to just go gluten-free and see what happens.

You've got to read about how celiac testing can come up falsely negative, see how it may apply to you...and then do what you need to do to get healthy.

Honestly, family and friends will do what they'll do, regardless of what a doctor says. Heck, my mother has so many food issues now (compared to eating everything under the sun when younger), admits "gluten is probably an issue" - and then refuses to get blood work, testing, or try a gluten-free diet. So I just sit there, in utter awe of how she continues to abuse her body...

And having a dx will do nothing to "educate" friends or family when you eat out or at their homes. A doctors pronouncement does not deposit understanding, knowledge, and gluten-free cooking skills directly into their brains.

A dx is not a magic bullet. Going gluten-free may be.

[starrymazed610]

Well, i got my labcorp results tonight: 

 

 

Test Low Normal High Reference Range Units Immunoglobulin A, Qn, Serum   123   91-414 mg/dL T-Transglutaminase (Ttg) Iga   <2   0-3   T-Transglutaminase (Ttg) Igg   3   0-5 U/mL Deamidated Gliadin Abs, Igg   4   0-19 units Deamidated Gliadin Abs, Iga   7   0-19 units Endomysial Antibody Iga   Negative   Negative  

 

 

 

NEGATIVE for celiac??? This is completely frustrating. I haven't talked to my doctor yet, but how can I have a positive biopsy????

[nvsmom]

As I understand it, celiac blood tests measure a type of reaction to gluten or in response to the intestinal lining of the intestine being damaged - they are more of a response to the autoimmune attack triggered by gliadin (gluten) in some individuals.... I do not believe they cause the celiac disease.

 

Your body may not create those antibodies in response to the gliadin or the damage, but it does not mean you do not have celiac disease. According to the Canadian Celiac Association:

Celiac disease is a medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients: protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.

 

Celiac disease is damage to the gut and not the ability to make specific autoantibodies (although these tend to crop up in most celiacs just like most, but not all, celiacs get stomach aches).

 

A positive biopsy indicates celiac disease... in your case, two positive biopsies. I would start on the gluten-free diet soon - and I hope you feel better on it.    Best wishes.

[cavernio]

Villous atrophy can be caused by things besides celiac disease. I don't know what they are, but I remember my GI rattling off a list of half a dozen of them when I pressed him for sure if I had celiac disease. I think most of them were very rare and/or there are other indicators for them. If your doctor wants to see positive bloodwork, he might be trying to rule out these other possible, probably highly unlikely issues. If you are concerned, I would ask your doc about them and if he has considered your villous atrophy isn't caused by having celiac disease.

Alternatively, the doc could be trying to get a measure of your antibodies to get a 'sick' baseline measure for them, so he can compare levels in 4 or 6 months after you've been gluten free.

 

Regardless, as long as your celiac testing is done, you should be strictly gluten free as it is obviously the most likely cause, and is what you've been diagnosed with.

 

Negative bloodwork can happen for a few reasons, because of human error (eg: lab mixed up your vials with someone else's, or put the wrong name on the wrong sheet, etc), because you are one of the those people who will has abnormally low IgA, and it won't ever become elevated, because the antibodies in your blood will show a response to a gluten-free diet much quicker than your intestines will, so maybe those 2 days being gluten free did affect them, and I also think the tests themselve might not measure accurately all the time. There's a 10% chance for any celiac to have negative bloodwork but yet show a positive biopsy.

[BZBee]

My diagnosis was the backwards approach too. 7 years ago I had issues with bile and my pancreas and my blood work tested negative for Celiac. I was diagnosed with pancreatic insufficiency, IBS, and GERD. flash forward to this year I had an endoscopy because my GERD was out of control. Dr. Says he took 9 biopsies and shown me pictures of my mucosal lesions and scaffolding in my intestines and said it was suspicious of celiac. Pathology report showed all nine biopsies as positive with severe and total vilious atrophy. Then, I had to get the bloodwork. The bloodwork tested positive also. They said the bloodwork was routine procedure for diagnosing celiac. Basically, the blood work is what they usually use to predetermine the need or endoscopy, and the biopsies determine if you have the disease or not. We just did ours backwards.

[starrymazed610]

Thanks for the responses! I have been gluten free for over a week now, regardless. I know that something is not right with all my stomach issues. I have been feeling a lot better since going gluten-free, but the craziest thing I've noticed is that my throat has not been "growling"! I have noticed my children all have that issue too. 

I guess right now I will wait and see what my GI doc says and go from there.