my blood tests have come back negative for coeliac

SueznRN · Joined: 17 Aug 2005 Posts: 125

Hi there,
I had almost every one of those symptoms you listed. I was diagnosed last year with CD after an upper endoscopy. My blood work was negative as well which goes to show that false negative blood work frequently happens. The endoscopy with biopsy showed withouth a doubt, I have CD...
Good luck and let us know how it goes.
Susan

aklap · Joined: 02 Oct 2004 Posts: 8795 Location: WI, USA

neartenby · Joined: 02 Apr 2006 Posts: 28

sorry, I missed the replies here somehow when I refreshed last!

I'm 33, don't think I'm menopausal, but who knows? Everything else seems to be packing in on me why not my ovaries? (sorry feeling sorry for myself today, have been as full of air as a balloon all day Sad

) I have been growing strange long hairs (luckily blond, fine and pluckable :p) on my chin the last 6 months though, and that's not something I expected at my age Smile

I don't know what my numbers were for B12, I'll ask.

Noatak · Joined: 13 Nov 2005 Posts: 494 Location: Massachusetts

At age 33, while full blown menopause is not likely, peri-menopausal symptoms are certainly a possibility. Don't panic as these can start years before actual menopause sets in but your ovaries are still fully functional and doing their job. I had hot flashes and night sweats set in about 7 years before I hit menopause.

I have also read that celiac's can contribute towards an earlier menopause start date. My female family members all had early menopause and I was the oldest at 45, however, I am the only one so far who has been dx'd with CD. The rest of them are in denial that they could have it and haven't been tested! So maybe this medical theory is correct, but who really knows? Shocked

I would press the celiac theory with your doctor and if they are not responsive after your negative blood work, maybe a trial GF diet may provide some answers for you. To me, that is the gold standard test, not the biopsy!

neartenby · Joined: 02 Apr 2006 Posts: 28

I've been GF for almost two weeks now. And the most horrid symptoms have gone (the agonising cramping and vomitting) - but the ones I've always had are still there. And the wind and bloating is still horrible. Obviously I would expect that after just two weeks but sometimes its worse than at others, and pretty much anything I eat gives me discomfort right after. I'm wondering whether I have multiple allergies or intolerances now Sad

I really should have addressed all this earlier you know. I knew there was a problem between me and wheat/ yeast, have known it for years. I have been a regular antacid cruncher since my teens. And first had thrush when I was a little girl. And yet even in my thirties I have had days where I've eaten nothing but bread and sugar. Self-destructive and avoidant behaviour at its most pointless.

Noatak · Joined: 13 Nov 2005 Posts: 494 Location: Massachusetts

Not to worry....I should have figured out the wheat thing long before I got really sick but I think there was some denial going on. It's natural and now you have reached your limit so denial goes away! You are ready to find the truth and heal.

emilyallsz · Joined: 18 May 2006 Posts: 34

QUESTION has anyone else had negative tests when they were already avoiding gluten and then did the challenge and retested positive????

i just got a call from the allergist today regarding my blood work. he said
"you don't have celiacs." i said ok , "what tests were run" (didn't know enough to ask ahead of time) and he said, "the ones that test the antibodies for wheat. (he didn't say gluten...) the antibodies for gliadin the transglutaWHATEVER." i'm not kidding he said whatever. i just said, ok i can get a copy of those when i next come in?" (next week for more skinprick tests.) does he know what he is doing???

i know that i am looking for something that caused or contributes to my chronic headache & candida/vulvadynia issues and raynauds and recent digestive bowel issues. i have read before about the "yeast conenction" and as badly as i wanted to believe it and tried it - it never really made sense to me. i've really tried to keep an open mind regarding other issues that might be my problema dn not trying to assume or diagnose myself with celiacs.

but reading people's stories here and Dr. Greene's book and i finally found something that actually made sense to me. when someone first mentioned to me have you tried wheat as a food elimination i really thought it was crazy, i don't have a reaction to wheat.but i had avoided dairy and corn wiht not much improvement. but the more i avoided wheat, reintroduced it, read about it and went overseas and it really starting all coming together. and i thought it was soo likely a possibilty that i had celiac. i have been trying to avoid wheat (and then gluten as i understood more) but the doc said these tests wouldn't matter if i was on gluten or not. the dr. was blase enough about the celiac to begin with.... now i really don't know what to do.

trying to keep an open mind that even though he may not know what he is doing, once i have the test results i can read them and see what was run. and/or maybe even take them to another doctor... sigh....

WheatFreePDX · Joined: 29 Mar 2005 Posts: 91 Location: Portland, OR

Hi Emily: My main symptom was candida/vulvadynia issues. I had tried everything to help it & nothing did. Finally I was diagnosed Celiac & after a year it's getting much better (if not competely gone). I rarely hear this being a symptom but it sure affected me. I would definately get a copy of the actual levels of your antigliadins. If it's a 10 E.U. or more go GF & heal!

Best of luck to you; those problems are the WORST!
_________________
Diagnosed with celiac disease (bloodwork & biopsy). GF (again in my adult life) since March 2005.

emilyallsz · Joined: 18 May 2006 Posts: 34

thanks
sorry to hear you went thru the candida +pain stuff tooo but as usual it is comforting to hear of others who felt that staying away from gluten helped their candida issues.

sandeehier · Joined: 07 May 2006 Posts: 9

emilyallsz: Your doctor said it wouldn't matter if you were eating gluten or not when he ran your blood panel? Of course you didn't test positive for gluten antibodies -- you weren't being exposed to gluten!

My husband and kids all tested negative too, and they get terrible symptoms if they eat gluten. Don't do a challenge and make yourself sick just to confirm what you already know.

Best of luck & feel better!

emilyallsz · Joined: 18 May 2006 Posts: 34

i got a copy of my blood tests back today and the doc this time was a lot more understanding. he said they show negative but they are not 100% and agreed that yeah if you are off gluten ( I have been for maybe two months now) there is disagreement how long the antibodies would remain to show on a test. he suggested consuming gluten and taking the tests again. i did read in Dr. Green's book though that eating the gluten again would be before a biopsy not just blood tests... the doctor brought up that the biopsy is something that is still the definitive answer and something that could be done... but we both agreed although it is a minor procedure it is still of course a procedure! having never been admitted to the hospital for anything i don't take that lightly! not sure where to go from here....

i was able to find out the tests that were run adn get a copy. i am a bit disappointed that it doesn't look like i got the tTG but honestly I am unfamiliar with looking at these test results;

TEST RESULT REFERENCE

>ENDOMYSIAL IGA
GLIADIN ABS Negative Negative

> GLIADIN IGG AB 4.9 <=25.0 EU
> GLIADIN IGA AB 4.9 <=25.0 EU
>RETICULIN ABS Negative Negative [/i]

jherara · Joined: 27 Jul 2006 Posts: 47

The key is to "research, research, research.." to find out what tests mean and what "ranges" are typically looked at and why those ranges are set the way they are. "Research, research, research..." to find out what symptoms could mean and what is implied whenever a diagnosis is made.

My Skin test/IgE and IgA bloodwork - all negative (I stopped worrying about wheat except for whole wheat and rye at that point b/c only they seemed to cause symptoms)
My B12 last year at this time of year was extremely low (which the local rural hospital considered then "normal" and what Penn State Milton Hershey told me recently was seriously "critical" and could have resulted in coma) and during the lowest points I experienced serious numbness in hands/feet, I had a tiny pin-sized hole appear in one knuckle that when pushed seemed to feel like a nerve (I later found out it was a nerve exposed). After B12 treatment began, within 5 months skin grew over the spot and there was improvement. My tachycardia problems subsided and my fingernail color--which had been pale to purplish--changed the very first week to a healthy pink.
My Vitamin K was so low that bruises were appearing from "normal wear and tear" of muscles on calves and arms.
My symptoms progressed to right side intestinal pain that started like a "tight belt" feeling and progressed to constant nausea, bloating, pain, et cetera. I couldn't eat spinach or bananas for months and I can no longer touch a banana without getting horribly sick.

Why is all of this important? B/c in all of the above instances there were doctors who said that "everything is fine"..."you look healthy"... or my favorite "the test doesn't lie--your're in the 'normal' range."

If your doctor says your tests are ok--keep the following in mind--just as there are different body heights/dimension and differences between male and female body types...there are just as many vitamin and/or illness and/or symptom differences.

If not for a very concerned CVS pharmacist I probably would have taken an over the counter B12 and be in a coma by now. He gave me the info on how to recognize B12 deficiency versus simple vitamin improvement and why sublingual treatment is chosen when shots aren't recommended in the case of sensitive patients. He also pointed out that I should get a second opinion since I was in his pharmacy with a then PCP advising to start taking B12 vitamins, but not recognizing the difference between normal "vitamins" and shots.

If not for a concerned new PCP--the wheat allergy and sensitivity might have continued to go un-diagnosed and my immune system be further damaged.

Don't take any doctor's "ok" as the final answer--b/c again, that doctor might not know enough or might think they do, but not be up-to-date or have enough experience or is just overconfident.

My hematologist said it was ok for me to be on 2000 mcg per day sublingual for the rest of my life. Keep in mind that 2000mcg/day is the equivalent of a B12 shot every day. After the first week of treatments, B12 injections are usually slowed down to once a month. I was on 2000 mcg for 3 months when I started to get really sick last year.

If mistakes or errors like the above occur....they can help or they can hinder or they can cause permanent disabilities or damage.

One year later, IgG is positive. Fecal testing is positive. Genetic testing is positive. My body is "positive"..."ly" happy that I've begun to cut problem foods out: my skin is clearer, I experience acid reflux less, I feel better in general, and now I have answers to many of the health problems that I've had. Don't stop pursuing those answers.

Determination to get to the truth and not just take the doctor's "ok"(s) got me there and it will get you there too!!

Good luck!! Smile

_________________
J.

aklap · Joined: 02 Oct 2004 Posts: 8795 Location: WI, USA

Hi J,

Yes 133 B12 is deathly low!!!!!!! I am glad you got the help you did. B12 levels are best in the 800, 900+ ranges. B12 is non toxic and can't be overdosed - it is just excreted. I take 1000-2000mg sublingual per day myself.

How are you doing now??
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

jherara · Joined: 27 Jul 2006 Posts: 47

Actually - please be careful unless of course the 800-900 range appears to be helping. At 2000mcg I was getting horribly sick (500 from blood test at that time). I investigated the "toxicity" of B12 levels and discovered that just as there are many doctors that I came across who didn't recognize B12 deficiency...there are just as many that recommend high dosing B12 b/c there aren't enough test studies out there about B12 effects on the body.

Also, there's a difference between sublingual and regular B12 absorption. Sublingual B12 has an almost 100% absorption rate. Vitamins have on average about a 2% absorption rate. That means that no matter how much B12 you took that day through a vitamin - the amount is still smaller typically tne the sublingual.

As for the research I did on B12 toxicity--several studies found that high doses of B12 (at least in mice test subjects and some sample test groups) appear to cause liver/kidney damage and increase the rate and chance for cellular mutations. In the case of B12, there appeared to be a tie (according to one of the European studies that I looked at) between high dosage and certain cancer growths.

Anywho, I'm doing a lot better. I was extremely allergic to Joop cologne that a work colleague wore in May and was in the hospital and so dehydrated that my B12 level shot back down to 346, but I'm back up again. I still have days where I "lose my mind" a bit--especially if my K shoots down which is fairly easy as my body doesn't store Vitamin K like it stores other vitamins and as a mineral it is extremely water soluble. On those days I can't stand a lot of noises or I start feeling nervous/shaky. If I don't get my apple juice or some other form of Vitamin K in quantity that day...I'll have a bruise appear with a few days on one of my legs--typically left. BUT, I look at this as being a learning experience. I'll find my happy medium of maintainence soon--just not at one time.

Thank you for asking.
_________________
J.

emilyallsz · Joined: 18 May 2006 Posts: 34

thanks so much for the info. it is always good to hear people's stories because it is frustrating to deal with trying to figure out what is going on. at least it is comforting to know you are not alone and answers are possible!

i found some better doctors who ran more blood tests including the tTg and some other things for example, just to make sure i don't have a bacterial infection.

they were very open to the idea of celiac disease (unlike the other doctors i have dealt with) and felt it was the top thing to rule in or out. however, they seem to think from my descriptions/symptoms etc that i have IBS. this was at first wierd to me because i thought that IBS was a catchall for what doctors told you when they didn't think anything was wrong or didn't know what was wrong with you. i have an appt in a few weeks to discuss my results so we will have to see what happens. they said although they thought from my previous tests and symptoms etc that i was not a celiac but that it was still a possibility.

what amazing doctors. knowledgable and personable, professional "bedside" manner- amazing! if anyone lives in boston and can get to Beth Isreal Deaconness gastroenterolgy celiac center please do!!! they are a world apart form other doctors i have seen with all these crazy issues!

i knew from my experience and detailed food journal that i was reacting to all gluten items- wheat rye and worst, barley. but i also seemed to be reacting to other things. this is why i went to see them. i just could not figure it out. i was surprised to see that on the first IBS site i looked on, that wheat rye and barley as well as the same foods i had also been reacting to were listed as trigger foods.

i am of course trying to maintain a gluten free diet also because i have vulvadynia that has gotten a lot better the past couple years but has never gone away. having conversed with some women on this forum and realizing that once they were diagnosed as being celiac and went GF, that was only thing that helped their vulvadynia; i am willing to go gluten-free just for that reason alone.