Negative Bloods - Miserable And Don't Know What To Do

[Sika]

My blood screen came back negative and I'm really miserable. I was convinced it was celiac and I would have an explanation for years and years of symptoms and I could stop eating gluten and things would start getting better.

But everything is 'normal', so I've no explanation at all.

So, there's no point being tested again is there? That's it. In which case, I should just cut the gluten out and see what happens? I know I feel worse the more I eat. I don't see a colorectal specialist for another couple of months. I guess my concern is that if they can do more tests, I may need the gluten in my system which will just delay everything even more.

But in all honesty I just feel like a whinging hypochondriac at this stage, like everything is just in my head. Maybe it all is. Maybe the 6m-pregnant-looking bloating and the ferocious stomach gurgling is just 'normal'. The brain fog is depression. The extreme fatigue is just laziness. The skin boil things are just 'acne' (I'm mid-30s) and normal. The sore eyes and weird dizziness are normal. The bloody stools and excrucitating pain during BM are normal. Or I'm making it all up. Celiac just 'fitted', with everything.

[WinterSong]

That's a tough situation. All of your symptoms do sound very much like Celiac. I guess I was one of the lucky ones(?) who tested very positive for blood tests and biopsy. But you could still have it - remember about 20% of Celiacs test as a false negative. There are also forms of gluten intolerance that don't show up on Celiac panels (I'm convinced one of these is the case of my sister). If gluten makes you feel horrible, I say try the diet. It couldn't hurt to see what happens!

[Bubba's Mom]

My blood tests came back normal, but my symptoms were very strong. My colonoscopy was normal. My GI specialist did an endoscope and said there was no doubt. I had Celiac Sprue with severe damage. There's quite a few people that have normal blood tests, yet have celiac, or a gluten sensitivity.

My best advice..go gluten free..completely. "Gluten light" won't heal you. Your body is the best gauge of whether gluten bothers you or not.

Best of luck to you..and I hope you feel better soon!

[suziq0805]

My blood screen came back negative and I'm really miserable. I was convinced it was celiac and I would have an explanation for years and years of symptoms and I could stop eating gluten and things would start getting better.

But everything is 'normal', so I've no explanation at all.

So, there's no point being tested again is there? That's it. In which case, I should just cut the gluten out and see what happens? I know I feel worse the more I eat. I don't see a colorectal specialist for another couple of months. I guess my concern is that if they can do more tests, I may need the gluten in my system which will just delay everything even more.

But in all honesty I just feel like a whinging hypochondriac at this stage, like everything is just in my head. Maybe it all is. Maybe the 6m-pregnant-looking bloating and the ferocious stomach gurgling is just 'normal'. The brain fog is depression. The extreme fatigue is just laziness. The skin boil things are just 'acne' (I'm mid-30s) and normal. The sore eyes and weird dizziness are normal. The bloody stools and excrucitating pain during BM are normal. Or I'm making it all up. Celiac just 'fitted', with everything.

I'm not an expert in this celiac stuff yet but here's my 2 cents. I have had weird symptoms for years, but most of mine are muscular and neurological- I have very few digestive issues. My celiac bloodwork was negative. My 15 month old may have celiac so he is gluten-free right now so I figured I would go gluten-free for awhile and see if I notice any difference. I hated the idea of more tests and it was actually easier to feed my son with me eating gluten free because I wasn't preparing 2 different meals every night. I have been gluten-free for about a month and have noticed a couple minor differences but my muscle and nerve issues are still here. I've been pretty good about avoiding gluten but I am seeing that this makes traveling to other people's homes more difficult. I've decided to go to a gastro doc to get this checked out so I can have a better idea of what is going on. I began to wonder..what if I don't notice any changes? What if I really do have celiac but I don't notice any difference so I give up on the diet? Luckily I have gotten a great recommendation from the local celiac support group for a great doctor and I was able to get an appointment quickly. If he wants to do a biopsy I will need to go back on gluten. I am having trouble being ok with going to other people's homes for meals or out to eat and feeling like my diet is a burden since I dont have a diagnosis. If I can get diagnosed then maybe my son won't have to go through the testing either. For me the benefits of further testing would be: knowing if I have celiac so I never question if I need to stick with the diet, knowing if I have celiac so that if I'm not seeing any improvements after awhile then I know I need to start looking at eliminating other foods from my diet, my son may not have to go through a gluten challenge/further testing and other family members would have more incentive to get tested if I can get diagnosed. I wish I wouldn't have gone gluten free yet, but that's me. It works out for other people though. So just some things to think about to determine what is best for you.

One suggestion- can you get to a dermatologist quicker? If your skin issues would be DH then there's a celiac diagnosis for you!

[cyberprof]

I had negative blood tests BUT a positive biopsy like Bubba's mom. The blood tests are notoriously unreliable.

If you don't want to push your doc for a biopsy (via endoscopy) or if the dermatologist route doesn't work, then yes - go gluten-free totally. Most people don't get relief on "gluten light." Good luck!

[Jenniferxgfx]

I had a negative blood test 2 years ago, was "disappointed," and now 2 years later I get a negative biopsy and go gluten-free anyway because I went "gluten lite" and some symptoms lessened, and I stopped caring abouttests and just wanted to feel better. And I already feelbetter, and it's only been a few weeks. I'm convinced. Even my skin is clearing up. (30s, "acne" since I was 8, nothing helped.)

I only wish I'd done it sooner. I was too preoccupied with doctors being right and needing positive test results to listen to my body before I listened to them.

[Sika]

First of all, thank you all so much for your replies, they really mean a lot to me. It's nice to hear about others experiences and decisions with regards to testing and diet.

In an ideal world I would have an endoscopy tomorrow, but I know that even if I pushed for this (I would be unlikely to be offered this test - I'm in the UK), it would be several months before I could have it. And then it may still be negative. So I think those of you who suggest just going gluten-free are probably right. I've been asking myself about why a proper diagnosis really matters to me and I think it's similar to others who have posted here. What about going to people's houses for dinner? Or to a restaurant? There's a big difference between saying 'I'm celiac' and saying 'I choose not to eat gluten'. And psychologically, if I can't talk about a diagnosis I'm unlikely to be as strict as I should with my diet.

Last year I spent two weeks being really strict - reading labels for everything. I felt better quite soon, but I was always staaaaarving. I've always felt quite addicted to bread and like nothing else ever fully satisfies me. My rectal pain and bleeding went away after 3-4 weeks. Oh, but I'd also cut out all sugar and yeast. Anyway, after 2 weeks I went to a dinner party with pasta ... straight away I had intense cramps and bloating that lasted all night. Prior to my diet I never reacted that much, so quickly. I guess then I was just gluten-light for several months. Gluten-free at home, but the occasional sandwich when I was out and needed food. I quit smoking nearly three months ago and ate more and more bread as a way of coping with cravings. This was when my current batch of symptoms started up again. I've upped my gluten over the past couple of months for the testing and there's no doubting that I'm worse than I had been.

I don't know if my skin issues are DH ... from what I've googled. It's just another thing doctors have shrugged off over the years, but it's not right, at my age. Things that last for months and months, they're really not pimples.

Mostly I want my mind to work. I've been on and off anti-depressants over the past few years for what I now describe as 'brain fog'. I've been truly depressed in the past and tried to tell the doctors that my current state just feels different and more 'physical' than actual depression. It's about confusion and being unable to concentrate, and no energy in my brain and so on. I've been fed up lately and stopped the meds which haven't done a single thing for me.

I just wanted an answer.

In part because I wanted a simple reason for the bowel issues going on with me... rather than a much more scary diagnosis.

And, one more thing, I'm scared of being hungry being gluten-free. As I said above, I really really crave bread and gluten-free bread doesn't come close to what I need. I guess I managed it okay last time and I will again. In the UK, if you have an official diagnosis you can get much better gluten-free stuff through the pharmacy! So that's another reason why a diagnosis is good.

So. My plan is to make an appt with another local doctor who I've been told is a proctologist. She may at least know a little more about various digestive issues than my normal doc. I'll see what she says and discuss the gluten-free diet with her. In the meantime I will try ease off my bread addiction.

Sorry for all the rambling ... I really appreciate having a space to say all this stuff. Thanks.

[cyberprof]

I felt better quite soon, but I was always staaaaarving. I've always felt quite addicted to bread and like nothing else ever fully satisfies me. ...

...My rectal pain and bleeding went away after 3-4 weeks.

...And, one more thing, I'm scared of being hungry being gluten-free. As I said above, I really really crave bread and gluten-free bread doesn't come close to what I need. I guess I managed it okay last time and I will again. In the UK, if you have an official diagnosis you can get much better gluten-free stuff through the pharmacy! So that's another reason why a diagnosis is good.

I too was always starving before (and for a time after diagnosis) but it will go away. And I feel(maybe you will too) that I was addicted to bread and that goes away too. Rice pasta, rice and potatoes are good ways to fill up.

I don't know about UK breads but I've found that I can make bread if I crave it. Too bad about the pharmacy stuff...perhaps you can get a diagnosis from the proctologist.

Pain and bleeding going away is a good outcome, so I hope everything works out for you. Wishing you good health.

[gailc]

Have you tried all kinds of gluten-free bread?

I hardly notice the difference in the breads so maybe they are better here. There are many different grains that can be used to make bread.

Did you toast the bread, that made it a lot better for me. Tapioca bread is good, but not for sandwiches, it falls apart.

gailc

[beachbirdie]

My blood screen came back negative and I'm really miserable. I was convinced it was celiac and I would have an explanation for years and years of symptoms and I could stop eating gluten and things would start getting better.

But everything is 'normal', so I've no explanation at all.

The brain fog is depression. The extreme fatigue is just laziness. The skin boil things are just 'acne' (I'm mid-30s) and normal. The sore eyes and weird dizziness are normal. The bloody stools and excrucitating pain during BM are normal. Or I'm making it all up. Celiac just 'fitted', with everything.

Have they tested your thyroid? Thyroid is notorious for causing fatigue and "brain fog". Sorry to say but from others I know in UK, the NHS is not great about thyroid care...but do make sure they have tested you and you can personally see the results. They will tell you "normal" even if you are a 100th of a point away from being out of range. I want to scream "what's the point of a lab range if you don't consider someone ill who is just a bit out of range?".

The next best thing is to be gluten free. NO gluten-light. If your body responds positively, it is telling you what you need to know. You don't need a prescription for a healthy diet!

Best,

beachbirdie

[Mummyto3]

I had all the symptoms of coeliac but blood is neg. I have brain fog, aches and pains, lethargy, constipation, bloated sometimes, have reacted to pizza and kfc etc. I feel like maybe its in my head too because my daughter tested positive.

I'd be extremely concerned about bloody stools. That isn't normal. Have you tried testing for chrohns or ulcerative colitis? They have very similar symptoms to celiac disease.

[SpiralArrow]

Hi there Sika.

I'm in a similar position to you, I recently had my first blood testing and it came back negative. I explained to my doctor that despite that, I still seem to have celiac-like symptoms and that they seem to improve somewhat eating gluten free. So my doctor has decided to book me in to see a GI for "some specialist input" because she admitted that she has no idea what's wrong with me. But like you said, being in the UK does mean waiting several months. My appointment isn't until September, so now I have to deal with eating gluten and feeling horrid for two months, or messing up my testing and trialing going gluten free.

Don't get depressed, you're not a hypochondriac! You're not wishing all of these horrible symptoms to be there, they're being caused by something physical going on in there. But it's worth sticking with the diagnosis process in my opinion if you can, if just to make sure there isn't anything else causing the bloody stools. If you keep getting negative Celiac tests and can definitely rule out anything else, then just go gluten free and feel better.

I understand how you feel about having a proper diagnosis though. I have similar thoughts about the situation. Some of my family members are beginning to lose patience with me just for requesting that the kitchen be kept a little bit more crumb-free. (For example, everyone in my house is addicted to fresh white bread and constantly leaves giant crumbs and buttery knives all over the counter and refuses to see how this could cause me harm.). I was glutened several times whilst trying to trial eating gluten free which made the whole thing pointless, as it ended up being gluten-light. I'm okay with the idea of just going gluten free if I don't get a diagnosis, but having my GI confirm that it's a gluten problem would definitely help to deal with some awkward people.

I hope you manage to get some help soon.

And I hope you can get a diagnosis to get a prescription!

[AMom2010]

Hi!

I too, got the news my celiac panel was negative last Wed. and was incredibly disappointed. I started gluten-free diet on Thursday, and don't even miss it. It is incredibly easy for me to say "no" to gluten because I want to get better.

My Dr. also tested my B12 and Vit. D levels. I find it more than a little interesting that my Vit. D was deficient not even 2 months after stopping my prenatal vitamin that I had been taking for the previous 20 months. I am convinced ingesting gluten is bad for me and and very hopefuly that I see my symptoms improve soon. Good luck to you!

[Sika]

Just to update a little .... I'm going to see a doctor who specialises in proctology next Monday. The most urgent thing is all the issues with the blood and pain with stools ... going on for 3 months plus. I freaked out about it yesterday due to a development that I won't detail here because of ickiness. I think these particular issues are due to some other problem which I need to figure out. Perhaps it is colitis or IBD, but my bloods came back okay for any inflammation - won't know until the colonoscopy (my symptoms came on fast and strong a day or so after I quit smoking - there is a really strong relation between UC and nicotine which makes me think UC is a likely contender here... ? But why the neg blood test?)

Whatever is going on, gluten makes me feel worse. I've cut back on the gluten and will go completely gluten free in a couple of weeks.

I've tried lots of gluten-free bread. Some are pretty good toasted, but I've yet to find a good one for sandwiches. I once tried to make my own. It turned out super heavy and rock hard but was quite nice toasted. Again, not for sandwiches though. I will experiment more though.

Last time I was tested my thyroid was fine, but I don't know the exact level. My mother has had thyroid issues in the past - and has even stronger celiac disease-type symptoms than I do - which made me think there is something genetic about all this ... and led me to feel quite convinced it was all celiac related.

Anyway, thank you all again for your replies. Sorry to hear that others have gone through the same frustrations, but it's nice to know I'm not alone in all this (())

[Sam81]

My blood screen came back negative and I'm really miserable. I was convinced it was celiac and I would have an explanation for years and years of symptoms and I could stop eating gluten and things would start getting better.

But everything is 'normal', so I've no explanation at all.

So, there's no point being tested again is there? That's it. In which case, I should just cut the gluten out and see what happens? I know I feel worse the more I eat. I don't see a colorectal specialist for another couple of months. I guess my concern is that if they can do more tests, I may need the gluten in my system which will just delay everything even more.

But in all honesty I just feel like a whinging hypochondriac at this stage, like everything is just in my head. Maybe it all is. Maybe the 6m-pregnant-looking bloating and the ferocious stomach gurgling is just 'normal'. The brain fog is depression. The extreme fatigue is just laziness. The skin boil things are just 'acne' (I'm mid-30s) and normal. The sore eyes and weird dizziness are normal. The bloody stools and excrucitating pain during BM are normal. Or I'm making it all up. Celiac just 'fitted', with everything.

I'm in EXACTLY the same boat - although my bloods haven't come back yet. My Dr thinks it's all in my head... It's comforting to know I'm not alone though...

[Sam81]

Im in the same boat as you sika, in the uk too and my dr said today if the blood tests are negative he'll forget all about it as they're so reliable - 97% apparently! I'm convinced and my family would need proof to support me...

[pgrovetom]

My blood screen came back negative and I'm really miserable. I was convinced it was celiac and I would have an explanation for years and years of symptoms and I could stop eating gluten and things would start getting better.

But everything is 'normal', so I've no explanation at all.

So, there's no point being tested again is there? That's it. In which case, I should just cut the gluten out and see what happens? I know I feel worse the more I eat. I don't see a colorectal specialist for another couple of months. I guess my concern is that if they can do more tests, I may need the gluten in my system which will just delay everything even more.

But in all honesty I just feel like a whinging hypochondriac at this stage, like everything is just in my head. Maybe it all is. Maybe the 6m-pregnant-looking bloating and the ferocious stomach gurgling is just 'normal'. The brain fog is depression. The extreme fatigue is just laziness. The skin boil things are just 'acne' (I'm mid-30s) and normal. The sore eyes and weird dizziness are normal. The bloody stools and excrucitating pain during BM are normal. Or I'm making it all up. Celiac just 'fitted', with everything.

You say your blood tests came back normal but that doesn't tell us enough. What tests did you have. Doctors often cut corners so your saying the tests were normal means nothing.

Take a look at the Mayo Clinic Testing Protocol at

Open Original Shared Link

and let us know how your tests compare?

[anabananakins]

So I think those of you who suggest just going gluten-free are probably right. I've been asking myself about why a proper diagnosis really matters to me and I think it's similar to others who have posted here. What about going to people's houses for dinner? Or to a restaurant? There's a big difference between saying 'I'm celiac' and saying 'I choose not to eat gluten'. And psychologically, if I can't talk about a diagnosis I'm unlikely to be as strict as I should with my diet.

My blood tests came back negative. I might have pushed for a biopsy anyway but the gene testing came back negative too (i.e, I didn't have the genes most commonly associated with celiac). At that point I knew I was going to get any further testing so I went gluten free. I had been seeing a GP who has a strong interest in celiac and she supported this. My regular GP said I didn't need to be gluten free, but was impressed by the improvement I showed.

There's not such a difference between being able to say "I'm celiac" and "I choose not to eat gluten". It seems like it at first, and I was also really upset not having the official diagnosis, but it does get easier. Maybe you just need to phrase it a little differently. I say " I don't eat gluten, it makes me sick". If people say "oh, do you have celiac?" I say no, tested negative but it's notoriously unreliable, etc, etc. What matters is what I do. No one could ever persuade me to smoke, they can't persuade me to eat gluten. Whether you have an official diagnosis or not the strength to never eat gluten again has to come from within (and for me is helped by the support of people here). I know of people with official diagnoses who are not strict with their diet. Being told to do something by your doctor or face the consequences does not alone mean you can do it. I look at myself with my eating (I have insulin resistance) Even though I know I shouldn't eat high carb foods, it doesn't stop me going on the occasional ice cream binge. I've made a conscious choice not to draw the line there, but with gluten I committed 100%, drew a line in the sand and declared to myself that I would never, ever eat gluten again. I cannot ever break that vow because if I do I fear that I would erode my resolve and it would creep in bit by bit until my health failed. I refuse to let that happen and it does get easier as time goes by. You can do it, even without the motivation of a diagnosis. Feeling better is my motivation now. And besides, after a year gluten free, I could lie and say I was officially diagnosed previously because a celiac should fail the test after they have healed.