Help With Celiac-Like Symptoms But 2 Negative Blood Tests

[dzaz]

I'm hoping I can get some input for what's been going on with me, and thanks in advance.

Over the past 5 years, I've had pretty normal health but perhaps every 14 months I'll get: abdominal distention, incredible gas, stools become very loose and rancid, and exhaustion. The bouts last for between 1 to 2 months and seem to resolve on their own with no diet change or meds. Last bout was 2006 and after lots of testing, they decided I had caught a parasite in the Caribbean, treated it, symptoms went away.

Same thing happened a month ago but this time after about 2 weeks of the symptoms I got a sudden sharp pain in lower right-side abdomen (like an ovarian cyst bursting); doctor checked for appendicitis (nope) but CT showed small bowel malapsorption and bile duct dilation. 2 Celiac blood tests came beck negative. Doctor said try going off gluten and dairy; I did and felt better within days.

Saw doctor yesterday; he said to add dairy back in and see how it goes and wants a MRI for "interesting" CT results of bowel and bile duct.

He said if dairy goes okay, to try gluten and if that doesn't go okay, to do the endoscopy. My question is what's the reasoning behind the endoscopy? If the gluten hurt, the gluten hurt, right? Would the endoscopy give results that would results in some sort of treatment (medication, surgery) or is it just more information? (FWIW I had a yogurt last night and my stars, that was a mistake).

I understand the blood test results can be non-conclusive and I'm fine with staying gluten and dairy free if I feel better, but my questions are: the small bowel and bile duct irregularities: are those Celiac markers or something else? And is there any point to adding gluten back and and getting the endoscopy?

Thanks for all responses; the internet can be a little overwhelming.

[GlutenFreeManna]

Welcome! The Endoscopy gives more information about how much damage you have. However it's not always conclusive either. The damage could be patchy and if they don't take enough samples from the right places then they may miss it. The question you need to ask yourself is if you need to have a doctor diagnosis to stick to the diet or to convince other people in your life you need to stick to the diet. If you can do the diet without cheating and feel good then you should just do that. There's no surgery or medication for celiac disease/gluten intolerance. The diet is the only treatment at this time. You may need to take additional vitamins and will want to watch for other auto-immune diseases.

[dzaz]

Thanks; this is exactly what I was wondering about the endoscopy.

I'm still confused about the dilated bile duct and small bowel malabsorption. Celiac-type of thing or not?

Thanks again!

[Kay DH]

Small bowel malabsorption is a characteristic of celiac disease. With celiac, it results from damage to the villi in the duodenum (just south of the stomach). These villi, like little fingers, absorb nutrients. A person's immune system attacks the villi and damaged villi cannot absorb nutrients. If you do have an endocopy, make sure the doctor has you on 4+ slices of bread/day for at least 4 weeks and takes multiple samples for biopsy. Regarding bile ducts, celiac can affect multiple organs. A family member, for example, had to have the gallbladder removed this year (she's going gluten free now).

[star25]

hi im new here ive also had abdominal issues mine started 8months ago

after a kidney infection ever since suffered non stop uti (but no symptoms till

it reaches kidneys).....then started getting right side abdo pain lower/upper

then moved to left side,started getting tenderness then suddenly hit with

weight gain of 3stone no reason took me months to get the doctor to take

me seriously and my blood tests always showed high wwc and crp,,finally seen

a gastro who ordered ct scan and upper endoscopy/gastroscopy.....

before this started getting very loud gas and my intestines makes alot of noise

i sometimes get headaches and get the most awlful side and back pain...

they tested me for thryoid--neg the usaul testing then celiacs which came

back neg,i get constapiated and odd diarrea,loose and fatty stools sometimes...

i thought it was gallbladder as i found things like pastry's,choc,gravey etc made

pain worsen...i even look pregnant but im not.....ct scan showed i had swollon lymth nodes taking it in my small bowels like i said bloods showed nothing

but inflammation im waiting on 2 biopsys taken last week from gastroscopy

one for h-polri and one for celiacs they decided to take one for celiacs

as the test showed i had multi erosions (non ulcer)....i think my problems

are linked to the uti's aswell so been researching myself wether celiacs and utis are related etc..........however i think its worth having the camera since

it can look inside.......good luck

[Skylark]

Thanks; this is exactly what I was wondering about the endoscopy.

I'm still confused about the dilated bile duct and small bowel malabsorption. Celiac-type of thing or not?

Thanks again!

A doctor cannot see the celiac villous damage on CT. The damage is microscopic. Malabsorption can be celiac, but also Crohn's or microsocopic colitis. I've noticed a lot of people on this board have gall bladder and bile duct problems, so that is consistent with celiac. With the endoscopy, your doctor would take a biopsy and look for the celiac damage and rule out other problems.

There is no treatment for celiac other than the gluten-free diet, so if gluten hurts you pretty much have the answer you need. Your doctor is probably trying to be conservative and make sure you don't have other things going on.