Celiac (Sprue) Disease Community
Could it still be celiac?
About This Community:

This patient support community is for discussions relating to Celiac (Sprue) disease, anemia, behavioral changes and neurological issues, dental issues, diet and nutrition, infertility, gastrointestinal issues, gluten-free recipes, growth issues, infants and children with Celiac, pain management, and skin and dermatology issues.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Could it still be celiac?

Hi,
I'll try to make this as short as possible.  When I was a child I would get violently sick at least once or twice a year ending up the hospital for vomiting/diarrhea/dehydration.   They were never able to find a cause for these episodes (this was back in the 1980's so Celiac was not a routine test).  I eventually "outgrew" these problems around 12 years old and then they returned in my late teens after a surgery.  I have only had episodes as an adult after going through an illness or surgery.  
I was diagnosed 1 year ago with severe Vitamin D deficiency and borderline low levels of Vitamin B, Magnesium, and iron.  My calcium levels were low also (attributed to Vitamin D).  My Vitamin D level has only risen by 10 over the last year of being on high prescription strength doses.  When I first was diagnosed with the low D they did a celiac blood test (I'm not sure which antibody test they did) that came back negative.  Over the year though, I developed heavy menstrual bleeding, migraines, nausea, fluctuating constipation/diarrhea, and the yellow floating stools that are the telltale sign of celiac.  My gyno even ended up performing a laparoscopy due to the stomach/pelvic pain and heavy bleeding I was experiencing.  It all came back negative for gyno issues.  
After all that, my question is this:  has anyone else out there had a negative blood celiac test and later been diagnosed positive for celiac?  Are the blood tests completely accurate?  Is it worth the time to push my doctor to be retested?
Related Discussions
5 Comments Post a Comment
Blank
259041_tn?1206486447
I know someone who tested negative but a biopsy proved celiac. You need a endoscopy with biopsy, it's still the "gold" standard. It certainly sounds like classic celiac. Have you tried going gluten free and see how you feel?
Blank
627145_tn?1230309226
My surgeon says the tests are very inaccurate.  I haven't had any positive tests, but he says I definitely have a problem with gluten and I have to follow the gluten-free diet.  He has no doubt.  He is not a fan of wheat for anybody, and has a second practice that's about helping to slow aging.  No wheat is allowed on his anti-aging diet, so we are helping ourselves stay young by avoiding wheat/gluten.  :)

I feel only feel good when I'm gluten free, so I know he's right.
Blank
Avatar_f_tn
Hashimoto's thyroid disease can also cause the gastro issues and people with Hashi typically have low D, iron and B12. Get your TGab and TPOab antibody tests. Those tests may come back negative if you are gluten free, so you might also want the TSH, FT3 and FT4 tests to determine thyroid levels and a thyroid ultrasound if you have any thyroid swelling. Do not let a doctor rely on the TSH as the only marker. It is a pituitary hormone and not always reliable.

Many Hashimoto's patients do better on a GF diet.

:) Tamra
Blank
1092854_tn?1292623951
yes your thyroid can be a problem but due to celiac. my mom has celiac's and was first told it was her thyroid was her prb. She will get very sick if there are even a trace of gluten in her food. All her vit levels were very low. She also told me that you can get a neg blood test and it be wrong yes the golden way to know is a byopisy. Does anyone in ur family have some of the same prbs as you??? As this more than likely does. I have had alot of prbs myself and had colonoscopy he said there was inflammation but nothing and left me at that with a letter what a Dr. So I know there is more too it just dont have ins and have had other issues and big med bills now had CIN2 that is precervical cancer it was removed along with a cyst on my ovary drained. They did blood work and it was neg. but I know there still is something going on. The thing is my prb are more like Flair ups not something every day sometime it can be but just like it came it can b gone. the GI dr told me he was 100% sure that I had Chrons and then did colonoscopy and said no it was ilitis. Sorry for the jumping around just get so irritated.. I know that there is prb and that my mom has celiac's and my aunt is having prb too same as me and they wont do anything for her either she too had been told she has thyroid prb. my grandfather had thyroid prb he has now passed to sroscies of the liver not due to drinking we think all the prbs he had was due to celiac's. here soon i think that i will get more blood work done for celiac's and i saw u can as well for chrons.
good luck to u all hope this help if u can follow it sorry
nikki
Blank
Avatar_f_tn
False negative blood tests are all too common. Celiac testing is still developing and it's still not where it should be, which is why most people aren't diagnosed until they have late-stage damage. Some docs insist that blood tests will not become positive until the damage to your intestinal tract is serious enough to leak substances into your bloodstream, but most docs will swear by the blood tests and refuse to do a biopsy if the blood results are negative. Worse, many docs don't bother to run more than the single IgA test rather than the full panel - and the IgA test will not be accurate if you're IgA deficient.

There's also the matter of non-celiac gluten sensitivity, which is a whole other can o' worms, and probably very, very common. The medical community is only JUST starting to recognize NCGS, though, and they're only just beginning to run studies.

One route you can take is antibody and/or genetic testing from Enterolab - you can order it directly from the lab, it's all done by mail. The test is still accurate even if you've gone gluten-free in the past year. It's controversial, and expensive, but if you can't bring yourself to go gluten-free without some results in black-and-white, it may be worth it. It was for me.  

The other thing you can do, which is much cheaper, is to simply go 100% gluten-free for a month. You may not see all your problems clear up within 30 days - it can take a year! - but in that time you should probably see a difference. You can keep the cost down, if that concerns you, by sticking to the naturally gluten-free foods like fresh produce, meats, rice, potatoes, beans, etc, - you don't have to go out and buy all the specialty products like GF bread (it's healthier that way anyway).

At worst, you were mildly inconvenienced for a month and missed having pizza. At best, you've gotten all your symptoms under control, feel better than you ever have, and know what you have to do to stay healthy. It's worth it!
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Celiac (Sprue) Disease Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
13 hrs ago by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Digestive Answerers
Avatar_f_tn
Blank
CalGal
CA
1340994_tn?1374197577
Blank
Caryopteris
Raleigh, NC