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Blood Tests "inconclusive." Help Please..

Atrapos

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Atrapos Newbie
Atrapos
Posted

I'm sure y'all see a ton of these posts, but I wanted to get some insight from Celiac's veterans :)

About two months ago, I had my gallbladder removed because it was infested with gallstones the size of marbles (I'm only twenty years old, so this is weird to begin with). The surgery went fine and was uneventful. However, since the surgery, my abdominal and digestive issues have been getting increasingly bad.

I went to see a gastroenterologist, who immediately jumped on Crohn's disease because of the young age of my gallbladder removal and the location of some particularly sharp abdominal pain (right above the Ileum of the small bowel, apparently). However, after a colonoscopy, the doctor is fairy certain that Crohn's is not the culprit, though I'm waiting for the biopsy still as there was some inflammation and spotting in the Ileum.

Anyway... After being told he was fairly certain it wasn't Crohn's, my mind went to Celiac's disease. I have a family member with it, so there's an increased chance I have it too. I went to my regular doctor, because the gastroenterologist didn't have an opening until after I had to be back in Texas for school (I was in CA where my family and medical insurance is for these tests). She ordered blood tests, of course, but told me they came back negative.

After looking through my blood tests, I can't find where she did the antibody tests at all. Perhaps I'm just missing a sheet. However, the tests did reveal something interesting. I'm anemic and my liver is inflamed.

So basically, after all this rambling, my symptoms are these:

- Abdominal pain and bloating, nausea sometimes

- Alternating constipation and diarrhea, usually fatty and light in color

- Anemia

- Liver inflammation

- Hair seems to be coming out at an increased rate when I brush it

- Ileum pain and inflammation (possibly Crohn's still, but not likely said Gastro.)

- Lactose intolerance, though this may be a lifetime thing

- Weight loss, about 10 lbs in a month, and I only weigh 130 so that's significant

- Extremely tired, often sleeping 10 hours a night. This will be a pain when school starts again.

Even though my antibody tests are negative (supposedly, I can't find them anywhere), my symptoms seem to point to Celiac's very strongly. Have any of you been diagnosed after initial negative antibody tests? Should I continue to eat wheat until my next blood test (Likely about 4 months, I have a busy semester coming up and my insurance wont cover non emergencies in Texas)? Or would you recommend going off gluten and, if it helps, simply assuming celiacs is the culprit and staying on the diet?

Thank you all for your help... I'm desperate for some relief.

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ravenwoodglass Mentor
ravenwoodglass
Posted

False negatives on blood work are not uncommon. You have the symptoms, you have a diagnosed family member and you had a triggering event, the gallbladder surgery (although the gallbladders issues could possibly be related to undiagnosed celiac if you have had GI issues for a while). The choice to continue on gluten for another 4 months is up to you. Can you stict to the diet without a formal diagnosis? If you can then go ahead and give the diet a try. Just be aware that if you later decide you want a formal diagnosis you will need to go back on gluten for about 3 months to get one. If you need to be on the diet you will likely be made very ill by the challenge. How easy is it going to be for you to get safe food at school? If you are formally diagnosed some schools will let you opt out of the meal plan and some will make sure you have someplace to cook. If you are in an apartment that wouldn't be an issue but if you are living in a dorm and relying on the school to feed you it might be.

Atrapos Newbie
Atrapos
Posted
  • Author

Ravenwoodglass-

Thank you so much for the response! I didn't realize gallstones could potentially be caused by undiagnosed Celiacs, though it seems to affect liver functions so I'm not surprised. I've had GI issued most of my life, which I just realized recently (What do you mean diarrhea several times a week isn't normal? I'm not supposed to hurt after eating?!).

I think I'd be happy without a formal diagnosis, I really just want to feel better... Gluten free food wont be a problem, as I love to cook and bake and make nearly every meal at home for myself, my boyfriend, and my roommates. I've talked to them already and they said they'd be happy to eat gluten free food as long as I still cook for them! Hah!

It's nice to know that blood work is not always reliable, I was afraid the doctors were about to give me the dreaded "IBS" diagnosis.

Atrapos Newbie
Atrapos
Posted
  • Author

Oh, and one more thing. I'm -constantly- hungry. Even when I'm doubled over in stomach pain, I'm thinking about what I can eat next. Is this normal for pre-treatment celiacs? Will the hunger abate once I'm on a gluten-free diet if I have the disease?

Edit: I'm also really cold frequently too... I'm currently on my laptop in the back yard (about 95 degrees fahrenheit) because the 75 degree air conditioned house feels freezing to me. Could that be because of not absorbing enough nutrients? Has anyone else experienced that?

ravenwoodglass Mentor
ravenwoodglass
Posted

Oh, and one more thing. I'm -constantly- hungry. Even when I'm doubled over in stomach pain, I'm thinking about what I can eat next. Is this normal for pre-treatment celiacs? Will the hunger abate once I'm on a gluten-free diet if I have the disease?

Edit: I'm also really cold frequently too... I'm currently on my laptop in the back yard (about 95 degrees fahrenheit) because the 75 degree air conditioned house feels freezing to me. Could that be because of not absorbing enough nutrients? Has anyone else experienced that?

For myself being constantly cold was part of the celiac prediagnosis picture along with very low blood pressure. The being constantly hungrey may be because your body isn't getting the nutrients it needs. Some of us have that increase a bit when we first go gluten free as the body is basically going 'yea food I can use, give me more' but it levels out after a while.

scuzy Rookie
scuzy
Posted

I'm kind of in the same situation as you are. My tests came back negative but the symptoms all point to celiac. I finally decided to start the gluten-free diet and have stayed on for that fact that I no longer have a lot of my symptoms. I would recommend that you do the diet for as long as you can, and if it works then I would assume celiac. From what I have been reading on here is that a lot of the tests are inaccurate and a lot of negatives are wrong. Good luck with everything :)

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