Negative Blood Test, But Still Suspect Celiac

[Myrna]

Hi I'm new here and still learning about Celiac. I've been lurking and this forum seems great with info.

I had an appendix operation on New Years and I haven't been feeling well since though mostly since February. It all TMI kind of stuff. At first I thought it was stress or lactose intolerance, but it's continued on. I'm 32 and never had been sick before all this. I used to pride myself on how resilient I am to illness.

Here are my symptoms (sorry if it's a bit gross):

more frequent BMs

sometimes an unsettled stomach

floating, soft, sticky stool (like it sticks to the bowl and is messy)

color change in the stool, it's some times paler sometimes not, but not like it used to be in color.

diarrhea sometimes

gassy

more fatigued

In the past month things seem to be progressively worse after my marathon was over:

I'm not feeling well in the morning, though better in the afternoon, making me not want to eat. (believe me I'm an eater normally) I've lost a few pounds.

My stomach seems more unsettled especially w/my morning runs

I've noticed my runs have become slower and difficult to do. Some of this might be heat related, but I've run harder/farther in worse weather. Now just 4 miles is difficult to reach.

I'm always exhausted. Really exhausted!

I did go to the doctor after I fainted a few weeks ago. I learned that I have reactive hypoglycemia. Now, I've been very good about eating every 2 hours like she said, even if I don't feel like it bec of my stomach issues. She suspected celiac and had me tested along with my gluclose test.

I tested negative to celiac.

After the reading I had done on celiac, I wasn't convinced. So I've done a mini experiment with diet. I ate a lot of gluten filled foods on purpose. I was very sick that day and the morning after. Then I went gluten free for 5 days with 1 slip-up that I know of. I've noticed a difference, though I don't feel fully all better. My BMs were less frequent, no diarrhea, and much less gas and bloating. Also my running is a little better with less or no stomach upset. I'm going to add gluten back tomorrow and see what happens.

I am seeing my regular doctor this week and a GI doctor in a month or so. In prep for my upcoming doctor visits, I want to be prepared and have a few questions:

I've read here that blood tests can be inaccurate. I was wondering how often does that happen?

Is there something more I should ask my doctor for, ie tests?

I know it's a mini experiment, but I wonder if it's enough to bring to my doctor attention?

Does anyone know if there is there something besides celiac that would have similar symptoms?

Is there any connection between celiac and reactive hypoglycemia? I'm thinking it's because I haven't wanted to eat, that is why my blood sugar has been off and I fainted. But I'm curious if there is any other connection.

Thanks in advance and sorry for this post for being long!

[ShayFL]

Welcome!

Did you get your iron/Ferritin checked? Runners often become anemic.

Did they test total IgA to see if you were deficient (and if you are) therefore making the Celiac panel useless???

You would need IgG testing then.

You could still have Celiac with a negative blood test. There are many who have neg. blood/pos. biopsy and visa versa. But you will need to STAY ON GLUTEN for the biopsy to be accurate (and even then it can be patchy damage and they might not catch it).

You could also just be gluten intolerant.

Either way, the cure is the same: A strict Gluten Free diet

You can push for a biopsy and see if your villa are damaged.

You can pay Enterolab for genetic testing and stool testing.

You can just do the diet and see.

It depends on whether you a. want to get well no matter what or b. need an official diagnosis to make you comply to the diet.

[happygirl]

What blood tests did your doctor run for Celiac?

[Myrna]

Thanks ShayFL for the reply!

My doctor only said she was testing for Celiac, but gave no specifics, and I had no idea at the time of what the tests were until I came here. So I doubt she checked total IgA to see if I was deficient. I never went off gluten before the test, but was eating less in general. Also I'm back on gluten after my mini 5day test, just in case I want to be tested again. So far I'm little sick.

I never got my iron checked. I will ask.

I will ask about the biopsy. I wasn't sure if they never did it after a negative blood test.

Maybe I'm gluten intolerant. Does it look like it has the same symptoms without the damage? I'll have to investigate more on that.

I've heard of Enterolab through here, and I'm not sure what they are exatly. Are they a celiac specialist lab my doctor can outsource tests or do I have to approach them myself?

I really would like a diagnoses for a few reasons: 1. Some family members just might not understand without a concrete test result. 2. I like to be reassured what it is for my own sake. 3. I would like to start a family in the future and if I do have celiac, I would like a diagnoses for my future children's sake.

[ShayFL]

You can contact Enerolab directly. I did the genetic tests about 4 months ago.

I tell my family that I have the genes for gluten sensitivity and that my doctor recommended gluten-free diet. I did Enterolab on my own. I just have a supportive doctor. But my family dont personally speak with my physician. I could tell them whatever I want to make them understand. I am not going to photocopy my records to show my family just so they believe me.

Ask your doctor for a copy of ALL of your lab records. It is your legal right. Then come back in here and let us know what they tested.

[happygirl]

You can have genetic testing for Celiac, ordered by your doctor, through an in-network lab for your insurance, so that you don't have to pay out of pocket.

[ShayFL]

If your doctor will do that...then great! Most wont with a neg blood test. But in NEVER hurts to ask.

I have become my own doctor. My physician is just an adjunct to my own care of myself.

And Enterolab tests more than genetics. They test fecal for antibodies to gluten/egg/soy/dairy.

[happygirl]

Open Original Shared Link info about testing that you can take with you to your doctor for genetic testing.

[Myrna]

Thanks so much for the info! I don't know what my doctor will say to all this. Really, I barely know my doctor, since I never had been sick before all this, the last time I saw her was 4 years ago just to meet her for the first time and get a basic physical. My appointment is Friday, now I will relate all and ask to see the test results!