Negative Blood Test But My Fantastic Doctor Has Referred For Biopsy Due To Symptoms

[chairtechno]

I have endured gastro-intestinal symptoms for a long time such as cramps, gas, constipation, fatty stools and diarrhoea. As a result I was diagnosed with IBS twelve or so years ago.

Along with this I have experienced low weight and unexplained weight loss for nearly a decade. This has progressed from me finding it difficult to stay at a low but healthy BMI, to struggling to stay in the underweight rather than dangerously underweight category.

I went to a doctor (not my usual GP) as I was worried about my weight loss and felt that it might be related to my GI problems. I explained that I felt as though I was not getting any energy from my food and was worried that despite gorging myself on high calorie food, I could not even maintain my weight, never mind gain any. This doctor said it was probably nothing to worry about as I am young and healthy. At this time I had never heard of coeliac disease.

Not too long afterwards my sister started experiencing similar symptoms and saw our usual family GP who gave her a battery of tests. Her coeliac test game back positive which led to me looking into coeliac disease and realising how well it could explain the problems I was experiencing. I went to the same doctor who duly gave me tests for coeliac, iron levels, and inflammatory bowel disease - and expressed surprise that I'd had no such tests.

After waiting what seemed like an age, all my tests finally came back. To my annoyance, the coeliac test was negative. I was so hopeful that I might have found the answer to my problems that I felt somewhat defeated, and sure that I was just going to by palmed off again as a time waster. The only thing that came out unusual was my iron levels, which were low. As a 25 year old man who puts a lot of effort into my diet this seems very difficult to explain.

When I went back to my doctor he took my weight (60kg). Which he noted was a 9kg reduction from the last time I had been measured just five months prior. He also agreed that there was no easy way to explain why my iron levels were so low and told me he was going to refer me for an upper and a lower endoscopy with biopsies. He even said that in his opinion he feels coeliac disease is still the best candidate for the cause of my problems despite the negative blood test.

I must say I feel fantastic that my problems are finally being taken seriously, though I have absolutely no idea what my endoscopies throw up. I really hope it turns out to be coeliac as it could be something much worse or even worse it could be inconclusive in which case I have no idea what might happen next.

I wonder, has anyone else had an experience like this where their symptoms indicated the need for biopsy even after a negative blood test. If so what was the result? Are there any other conditions that might turn up which would cause the same profile of symptoms?

[Cara in Boston]

You have a great doctor - one who recognizes the fact that you can "test" negative but still have celiac disease. With that in mind, if your biopsy happens to be negative, it only means that no damage was found, it does not mean you should continue eating gluten. With your symptoms and family history, it is logical that gluten is probably your problem.

After your biopsy, give the diet a try. Be strict, 100% gluten free for a couple of months and see how you feel. Think of it as the "final test." You do not have to wait for the biopsy results to start the diet. Start the very next day after your procedure. Keep in mind you may feel worse in the first week or so as your body gets rid of all the gluten. Once that passes, you should notice lots of positive changes. Don't give up.

After my son was diagnosed (blood and endoscopy) I got myself tested since I had been having classic symptoms for about 5 years. My blood test was positive but my endoscopy was negative. I went gluten free with my son and all my symptoms went away. It is clear that I too have celiac, but I was "technically" diagnosed as "gluten intolerant" since my biopsy was negative.

Don't let a negative test be "permission" to continue eating gluten.

Cara

[gatita]

I agree completely with Cara! After all, you could have NON-celiac gluten intolerance and still need to go gluten-free.

I am so glad you found an understanding doctor!

My new GI doc is similar, I've tested negative on almost everything but he's still doing the endo and wants me permanently off gluten because he recognizes that the most definitive test was trying a gluten challenge, which I failed.

When he does the endo, though, I'm going to remind him that if he even mentions the term "IBS" I'm going to scream, LOL...

[chairtechno]

The thing is, I was vegan for three and a half years and I still had the same symptoms. One of the main reasons I started eating meat and dairy again was so that I could keep my weight up. This led me to the conclusion that since I'm not adversely affected by meat, dairy or eggs that it wasn't my diet causing my symptoms.

I hadn't thought about how the pervasiveness of gluten in all but coeliac diets meant that it would be unlikely that there would ever be a time when I was not consuming it. At this point I'm not letting myself get too invested in the idea of having coeliac disease cause it may well be that it's something else, but it's reassuring that my doctor is taking it seriously and I will be undergoing some proper investigation.

I'm pretty lucky I'm in the UK where all this will be free. I looked up the price of just an upper endoscopy without biopsy from a private healthcare provider and the cheapest they were quoting was £1000. If I didn't have the support of my GP then there's no way I would be able to afford to investigate this on my own.

I will update this thread as new developments arise so hopefully this could be a good resource for those in a similar situation - now and in the future.

Also, cheers for the advice guys. If I exhaust all testing and get no answers I will try going gluten free any way and see if it helps.

[Smylinacha]

I have been losing weight for the last 5 years and the last two have been pretty dramatic. I could eat like a pig and would always feel awful - especially after breads, pizza and pasta and I lived on those, along with very strong microbrew beer! I have been gluten free for a little over 3 weeks now and feel 100% better - same symptoms you have - gas, bloating, constipation & fatty stools. Stools are coming out "more normal" since I cut out all the gluten. I just want to gain the weight faster and back to where I was but I know this takes patience and so long as I'm eating no gluten, I'll be fine. My doctor suggested blood tests and an endo also but I do not want to go back on gluten again, I love the way I feel now. She said I have to go back to gluten for 6 to 8 weeks. Perhaps if I continue to lose weight I will but right now trying to eat right and hopefully I can absorb nutrients again at some point I am eating gluten free - many small meals every day, I have New Planet gluten free beer and Angry Orchard Hard Cider and I can't believe I am eating fruit and veggies - that's a first for me!

[chairtechno]

I think I want to press ahead with the endo because I might not get another chance. This way they can have a look inside and figure out if any thing is majorly wrong.

I don't want to mask anything majorly wrong in there by ameliorating my symptoms.

I will attempt the gluten-free diet even if my endo is negative. I'd just rather have a negative endo than nothing so that I know whether my choice will be to try and alleviate symptoms or to prevent major damage.

[Smylinacha]

I think I want to press ahead with the endo because I might not get another chance. This way they can have a look inside and figure out if any thing is majorly wrong.

I don't want to mask anything majorly wrong in there by ameliorating my symptoms.

I will attempt the gluten-free diet even if my endo is negative. I'd just rather have a negative endo than nothing so that I know whether my choice will be to try and alleviate symptoms or to prevent major damage.

I think you have to go on gluten for the endo though so if you are still eating gluten then hopefully they will see it when doing the endo. I had endo done when this first started years ago and they diagnosed me with IBS and Gerd, I was put on Zelnorm and Nexium and it all felt better for about a year but back then I wasn't losing all the weight. Endo wasn't bad at all - over and done with in 15 minutes.

[chairtechno]

Yeah, I'm pretty much loading on gluten - including it in as many meals as I can.

I feel terrible, but then my symptoms have been pretty constant so it doesn't make much difference at the moment - I don't really know any different.

I'm not worried at all aout the endo. I'm gonna opt for conscious sedation as I had that when having some teeth removed and I found it helped loads. I'm so phobic of dentistry I shake too much to be able to receive a filling safely without being sedated.

I'm not really scared of the endo and I think I could manage it without sedation, but I'm gonna go for it any way because it certainly won't make things worse…

[Marc49]

Yeah, I'm pretty much loading on gluten - including it in as many meals as I can.

I feel terrible, but then my symptoms have been pretty constant so it doesn't make much difference at the moment - I don't really know any different.

I'm not worried at all aout the endo. I'm gonna opt for conscious sedation as I had that when having some teeth removed and I found it helped loads. I'm so phobic of dentistry I shake too much to be able to receive a filling safely without being sedated.

I'm not really scared of the endo and I think I could manage it without sedation, but I'm gonna go for it any way because it certainly won't make things worse…

An EGD is nothing in terms of testing,.....totally painless. I have had two of them BTW.

You are doing the right thing by eating as much 'gluten' as possible. Do NOT cut back until you get the results.

I think you are correct to go gluten-free regardless of the biopsy results, but you MAY turn out like I did.

I went gluten-free for a year and a half after positive gene tests, and then a totally negative EGD.

I never felt any better, and I actually gained weight back after starting to eat normal again. I am full of gluten at this point, and will be having all the blood tests done for the first time soon.

A lot of people DO have IBS, and GERD.

I believe that is what my issue is.

You must do what you feel is correct for yourself. Many here will say you need to be gluten-free regardless of any testing, or whether your symptoms improve or not after you try the diet for an extended time.

Your choice as to whether you buy into this mindset or not.

Some folks have almost turned this into a religion, and they get VERY offended when someone says something they don't wish to hear.

Check into the Paleo style diet.

This is basically what I did, and regardless of gluten, it's fine to follow IMO.

I wish you the best!

[mushroom]

Many here will say you need to be gluten-free regardless of any testing, or whether your symptoms improve or not after you try the diet for an extended time.

I don't think I have ever seen this view expressed here. If all testing is negative it is always suggested, because of non-celiac gluten intolerance / sensitivity, that you give the diet a good six-month trial to see if it works for you, but the only time it is ever recommended to stay on the diet no matter what is if you test positive but have no symptoms.

[Smylinacha]

Yeah, I'm pretty much loading on gluten - including it in as many meals as I can.

I feel terrible, but then my symptoms have been pretty constant so it doesn't make much difference at the moment - I don't really know any different.

I'm not worried at all aout the endo. I'm gonna opt for conscious sedation as I had that when having some teeth removed and I found it helped loads. I'm so phobic of dentistry I shake too much to be able to receive a filling safely without being sedated.

I'm not really scared of the endo and I think I could manage it without sedation, but I'm gonna go for it any way because it certainly won't make things worse…

When I had it done years ago I had "twilight". I was awake but didn't remember a thing. Husband had to bring me. Slept good afterwards:-)

[chairtechno]

Eek.

Just found out my waiting time to see a gastroenterologist could be 74 days. I can understand why some people decide not to wait it out now.

Nevertheless I'm gonna hold on. I've not tried a gluten-free diet at all so I have no idea yet whether it might help yet.

Cheers for the advice everyone.