Awaiting Tests But Can't Eat Gluten - Scared Of False Negative

[Celiac Mindwarp]

Hi, I would love some input.

After 20+ years of symptoms you will all recognize, I finally realized I may have celiac disease. My problem is that I have been wheat free 9 years after doing Atkins and realizing how ill it made me (also gave up alcohol, coffee, tea and should give up sugar, corn).

I tried eating wheat, lasted 3 weeks and was so ill I had to stop. I had blood test 1 week in (too early, cheers doc) but the lab lost my results.

I was off wheat 10 days, back on 5, was so bad I nearly ended up in the emergency room, and was retested.

Surprise, it came back negative.

That was 6 weeks ago, I have a endoscopy in 3 weeks, so it will be a couple of months since gluten, plus 9 years wheat free.

I am pretty sure that will be negative too, but I am pretty convinced I am celiac.

Gluten ingestion not an option, way too ill and have kids to look after.

Do I just need to accept I wont get a diagnosis but will need to be gluten-free for life?

Thanks everyone x

[tarnalberry]

Yes.

If you can't go back on gluten, there is no way to find out if your system is reacting to gluten.

Gene tests give you some information, but they cannot tell you if you are celiac or not.

[tom]

Yes.

If you can't go back on gluten, there is no way to find out if your system is reacting to gluten.

...

Mindwarp sounds pretty convinced his/her system is reacting to gluten. (I know you're really referring to how an accurate antibody test needs that antibody's stimulus.)

The endoscopy/biopsy could show "damage consistent w/ celiac", leaving it up to individual Drs' whether to combine it w/ reactions including ER trips & DX celiac disease/NCGI, or go the opposite way & say "probably IBS, take a daily pill for the rest of your life & maybe see a shrink because it might be all in your head".

So make sure to get a copy of the endoscopy & biopsy reports. The summarized version might say Negative while little details could make you ask "well what *did* cause that then?"

[Celiac Mindwarp]

Thanks for your replies

I didn't include 20 years of vomiting, weight gain despite healthy eating, recurrent miscarriage (9 counts as recurrent I think), migraines, ecxzema, anxiety, extreme fatigue, failure to heal from RSI etc. Plus grandmother with Barretts aesophogus who lives m toast and nutrition drinks, mother apparently had M.E for 30+ years (but I recognize some symptoms...) Aunts with diverticulitis and food intolerance. And a child with severe nut allergy, milk intolerance, asthma, eczema.

I'm going to call today to get copy of blood results before I get my biopsy.

I have no doubt I have a gluten reaction, I guess I'll stick gluten-free and wait for medical science to catch up with where the rest of us are.

Great community here, keeping me sane x

[kittty]

I also refuse to go back on gluten to get a positive test result - I'm out of sick time at work! My doctor suggested having the blood tests done anyway, even though I'd been off gluten for several months, and they came back negative. But there are other blood work results that can point to celiac. I've been going over old test results from the last three years, and even though none of those tests was directly for celiac, there were signs pointing to it. The doctor never thought these things were a concern, so I've studied them on my own.

A high white blood cell count may indicate celiac damage in the intestines

A low MVC count may indicate iron anemia

Low protein and albumin levels could indicate malabsorption, possibly due to celiac

A low A/G ratio may indicate an autoimmune disease like celiac

There are others too, but if you get a copy of your other blood work, go through and look for anything that is high, low, or borderline high or borderline low.

Next week I'm going to ask for a full panel of vitamin/mineral levels. Even though I'm feeling much better and gluten is gone from my life, I'm still not 100% great and my white blood cell count is still high. I'm hoping that will zone in on anything I'm lacking in (like Vitamin B6 or Iron), so I can target my supplements.

[Celiac Mindwarp]

Kitty

That's really helpful, thanks so much.

I'm collecting my last 3 sets of results tomorrow, and will ask doctor to go further back too.

We have to be our own detective it seems.

My DH is new in his job so time to look after the kids (or me on a bad day...) is impossible so sympathy.

I have repetitive strain injury, so I am used to having a condition few understand and many think is not significant (or even real in some cases, grr)

Good luck with improvements