13 replies to this topic

[Prezwilson15]

2 years ago I had the blood test for celiac which came back negative. I've been diagnosed with IBS.

In the past 2 months I've been losing my hair and they have no explanation as to why. The only things blood tests show is that my Vitamin D and iron stores are slightly low.

And my IBS has been OUT OF CONTROL. Starting this morning, I'm trying the gluten free diet since the IBS Diet isn't working. I almost feel like a human being already.

So back to my topic subject, did you have a negative blood test only to discover later that you had celiac disease? Is it possible for those tests to be wrong or inconclusive?

Paula

[sa1937]

2 years ago I had the blood test for celiac which came back negative. I've been diagnosed with IBS.

In the past 2 months I've been losing my hair and they have no explanation as to why. The only things blood tests show is that my Vitamin D and iron stores are slightly low.

And my IBS has been OUT OF CONTROL. Starting this morning, I'm trying the gluten free diet since the IBS Diet isn't working. I almost feel like a human being already.

So back to my topic subject, did you have a negative blood test only to discover later that you had celiac disease? Is it possible for those tests to be wrong or inconclusive?

Paula

Welcome, Paula! Yes, it's entirely possible and not at all uncommon to have a negative blood test and still have celiac. But since your test is two years old, things could change and you may be positive today so the celiac panel should be run again. The usual procedure is to have the tests and then go on to have an endoscopy/biopsy (the supposed "gold standard"). Even then, if the biopsies are taken in the wrong place or damage is patchy, it's possible that may be negative, too. It's possible to have negative blood tests and a positive biopsy (or vice versa).

There are a lot of people on here who are self-diagnosed because their bodies told them the answers their test results and doctors couldn't. My Vitamin D was low, my daughter (also celiac) is hypo-thyroid and anemic.

But whatever you do, don't go gluten-free until all testing is done if you plan to have more testing.

[Jenniferxgfx]

I had a negative blood test 2 yrs ago, and was also told I had ibs, attributing it to fibromyalgia and "related motility issues." I started getting worse, plus anemia requiring iv iron, rock bottom vitamin D (that's going down despite supplements), skin troubles worsening, brain fog and other assorted crap. I also have bad GERD and it was suggested I had gastroparesis (and given reglan recklessly). I had an endoscopy and biopsies were negative for celiac, but by then I'd seen my ibs (and other) symptoms flare after bread or pasta. I've been gluten-free for 3 weeks and I'm never going back.

Ibs is a collection of symptoms, not a good diagnosis. It's what they say to get you out of their office.

Screw the tests. Feeling better is the ultimate test result.

[Prezwilson15]

Thank you both for your replies. Sylvia, I don't think I'm going to do more testing if this can get me feeling better. I have a $3000 deductible on my insurance which is squeezing my budget.

If my hair stops falling out and my digestive issues resolve, I'm good to go.

Paula

[RacerX35]

When I had my test and then went to see my Dr. for the results, he told me that it came back 50/50. He then asked me if I had started trying a gluten free diet before my testing. I couldn't remember and he told me that could have caused my results to come out that way. I then went in for an Endo. The office that did the procedure told me that I did not have celiac, but was gluten sensetive. I have been gluten free for about 1 year now and feel great. I know when I have consumed gluten products though. Since I am epileptic and react to gluten through siezures. I always know when I have eaten some gluten.

Later,

Ray

[anabananakins]

All my tests came back negative. Even the gene test (though I've read since that they only look for specific genes and there are others associated with celiac).

But whenever I describe my symptoms and my recovery after going gluten free, doctors are all "huh, that's weird, you totally sound like you have celiac".

I figure I have it but medical testing just hasn't caught up yet. I mean, I'm obviously intolerant to gluten and isn't the definition of celiac an intolerance to gluten? I usually say that I'm gluten intolerant and if people say "oh, so you have celiac" I say yes if I don't know them, won't see them again and don't care about getting into it but if I do know them I'll say I tested negative but had an amazing recovery when I went gluten-free and it now makes me really sick. I'll explain further about how testing is unreliable if they seem interested.

I find most people respond along the lines of "hey, that's great you know what makes you feel better!". There's the occasional "sucks to be you" but whatever, it sucks worse to eat gluten. No one has ever accused me of being on a fad diet. I think they know me well enough to know that I could always be persuaded to break a (for weight loss) diet but I am absolutely immovable on the gluten-free issue.

[sreese68]

My bloodwork was negative. I went off gluten for 8 weeks at the instruction of my neurologist, who says the bloodwork is too often falsely negative. I ate gluten after 8 weeks of a gluten-free diet and DEFINITELY had neurological reactions to it. I'm now sensitive enough to it that I got glutened when my daughter touched my drink top with gluteny hands, and I drank after her. She had been in the petting zoo at a fair feeding the animals. She used the disinfectant to clean her hands, but it doesn't get gluten off very well since gluten isn't a bacteria.

[ravenwoodglass]

I was negative repeatedly for years and years as I got sicker and sicker. I knew nothing about celiac so didn't know to just try the diet. I was finally diagnosed after an elderly and savvy allergist put me on a strict elimination diet and it was confirmed by my clueless GI doctor.
Do note though that just because you were negative on blood work 2 years ago doesn't mean you would be today. You may have enough damage now for it to show a clear positive. However you don't need a doctors permission to be gluten free and there are folks here who have gone gluten free, seen their problems resolve and then based on their response to the diet gotten a 'gluten intolerant' or celiac diagnosis from their doctors based on that.

[WhenDee]

Hi - I just replied to you about the hair loss! Just realized both topics were you.

I've never been tested. After years of being told a million different things - IBS, hormonal problems, HYPOCHONDRIA (that is my favorite, told me by a doctor who suggested that if I just went on Prozac I would stop trying to make myself seem ill, AHEM) - I had a deep distrust of doctors.

After the stress of an overseas move, my body just broke down. I couldn't find a doctor and got so weak and dehydrated that I couldn't walk on my own. A pharmacist (which can prescribe everything but painkillers here) put me on a strict elimination diet and prescription-type hydrating fluids, and told me I must go to the ER if I wasn't better in 12 hours.

I was so sick then that I did three days on plain rice. Then I added in salad vegetables, one per day. By day four, when I was eating nothing but rice & cucumber, I felt AMAZING. Fantastic. On day 8 when I ate a bite of something with bread in it and completely relapsed (complete with neurological symptoms, including a migraine), there was no going back, ever. We live in a country where medicine is fairly third-world, so my husband begged me not to risk the endoscopy. (One of his coworkers died of complications having pins put in his broken leg.) I didn't care. When I have gotten glutened, it has been so obvious so fast that I will not challenge for a diagnosis - I'm not sure I would survive it!

I told you in the other post that I was also low on Vitamin D. I was chronically tired, had terrible stomach problems from acid reflux to terrible pain & bloating, to excruciating constipation. The kind where you wish you were dead every time you have to poo. And migraines, dizziness, muscle aches like I was always on the verge of "coming down with something". I had joint pain. So many different things that I wouldn't tell anyone everything that was wrong with me, because it DID sound like I was a hypochondriac. Sometimes I even wondered myself, if I was just crazy and didn't know it.

And EVERY. SINGLE. ONE. has resolved completely by going gluten-free. I haven't had a migraine since that day I realized it was a gluten problem (that I mentioned above). There was a time when I could not even drive to the store without a migraine pill, because I never knew when one might hit me suddenly & I would not be able to drive myself home. And now not a single one in many months!

So I told you all of this to say...

- the tests are inconclusive
- doctors know little about this problem
- it could be celiac
- it's worth a try

The advice you got to not go gluten free if you plan to test was very good advice. If you think it might bother you later to not know "for sure" - get tested now. But I would suggest that as soon as they have done the tests, go gluten free anyway, just to see. The tests aren't terribly conclusive. They could be false negative & you should try the diet anyway, and even if they are positive, you'll be already on your way to good health.

Best wishes to you - I hope you find an answer soon.

[EmilyRDH]

Wow, I just read the post from WhenDee, and I'm totally new to this forum and Celiac/gluten intolerance, but my symptoms are almost exactly the same, but much milder. I have frequent headaches, bad acid reflux for the past 5 years, hair loss, pretty bad joint pain, (constipation) , tired, and vitamin D deficiency (even tho I'm very active outside). My doctor is very nice and informative, but is referring me to the university of Chicago for further evaluation because my genetic testing was very low, but the antibody test came back positive for celiac, the biopsy's of my intestine & colon came back negative for celiac, chrons & colitis. I've been gluten free for about a week-- and haven't noticed anything different yet-- but reading all these posts makes me hopeful! The whole reason I went to the Dr. in the first place was due to the acid reflux-- it would be AMAZING if this diet will help reduce my symptoms!!! (But I'm not looking forward to the weight gain!) Thanks for all your information!!! I've also been called a hypochondriac my whole life!!! (I do tend to be pretty paranoid tho, lol)

[lcarter]

I had a similar experience as WhenDee. I had seen 3 gastros over the years + and many other doctors who were all clueless. They would treat a symptom and never see the big picture. So, I was told IBS, lactose intolerance, etc, etc...like many others. About 8 yrs ago, I was visiting a son and daughter-in-law and had one of my usual digestive disorder episodes [I spent 3 days in the bathroom and in bed sleeping off the extreme fatigue]. She has her PhD in molecular biology and after researching possibilities on the internet, she began asking me questions. It then became SO obvious that I have a "textbook case" of celiac disease as I can pretty well check off all the symptoms on the list: underweight, frequent nausea following meals, episodes of vomiting and D, intestinal cramps and pain, mouth ulcers, vitamin deficiencies + anemia, neurological problems [carpel tunnel surgery on both hands + migraine-like auras, now a few brain lesions], joint pain, depression when episodes hit, even been in the emergency room with my intestines almost swollen shut and the doctors threatening to take out part of my intestines. I always tell doctors that I have digestive problems. I have had this since I was a baby, but now I'm in my 60's! Why no doctor ever even suggested celiac disease to me or tested for it, I have no idea? By this point, I was so fed-up with doctors who continually either brushed me off or ignored my symptoms as "something else" that I decided to try the gluten-free diet on my own. WOW! What a difference the diet made!!!! I will NEVER go back to eating gluten again! Not surprisingly, 8 years ago I told my GP about my new diet. {His way of dealing with my "episodes" up to that time was to give me prescriptions for Lomotil with Phenobarbitol every so often for when it was "really bad".} THEN, he insisted on doing a blood test after 3+ months on a gluten free diet. Of course, it was negative! So, he said, "You obviously don't have celiac disease. Go back to eating wheat." Needless to say, I have since changed doctors. And, considering how horribly sick I get, I will never agree, at this point, to do the gluten challenge for the biopsies. The bottom line is: if the diet eliminates all the symptoms, you KNOW what the diagnosis is!

[obaketenshi]

The bottom line is: if the diet eliminates all the symptoms, you KNOW what the diagnosis is!

This pretty much sums it up. I had the same kinds of issues, and after suspecting it was celiac, but getting a negative blood result (and not being able to afford an endoscopy for further investigation) after being nearly bedridden for months, I decided to take the plunge. I felt better within a few days. Now, when I eat anything with gluten in it, its a VERY clear reaction! I have no question now what it may be. Listen to your body, if it helps, then stick with it!

[NorthernElf]

I've had stomach issues all my life, diagnosed with IBS. Eight years ago I had a wicked virus, couldn't keep anything in for a week and lost five pounds (weight I didn't have to lose). I ended up in the emerg getting 2 bags of fluids & a shot to stop my stomach spasming...ugh, I just wanted to die I felt so awful. It took me a year to learn to eat again, without always being ill afterwards. I researched & greatly reduced my gluten intake & got tested. Hardest thing about going gluten free is realizing that things without gluten in the ingredients can still have gluten (CC).

Negative blood test. Really, negative means you might have it, positive means you do.

My doc sent me for a scope, it took 4 months to get in and I completely stopped eating gluten (not knowing I needed to..but I was so sick!). The GI didn't biopsy!!!!!!!!! My GP had him look for GERD damage only. I was very upset - when I woke up I asked him about celiac & he didn't know what I was talking about.

Since eliminating gluten - I lost a little weight but am stable now, my GERD virtually disappeared (very occasionally take antacid, no other meds), tingling in my body disappeared, my bloat is gone, my stomach cramps & D is gone, my vision issues resolved, mood is great (I get very unhappy on gluten) etc. I feel great !

The only negative - I am VERY sensitive to gluten, more so than before. I also can't tolerate much soy or dairy. But you know, it's worth it to finally feel good !

[AmyE]

My blood test came back neg as well. But I had been off gluten a week. All I know is when I went gluten free all my problems went away.