Negative blood tests for Celiacs disease but symptons clear when eating a Gluten Free diet

I would listen to your body. If you see that a gluten free diet is better for you than why don't you just follow it? It doesn't matter whether you are intollerant or not, what matters is how your body reacts to whatever you are eating. I understand your confusion though, I tried to do without dairy and gluten products and I felt better, however, I couldn't manage that diet for many many months. I had my blood tested and I seemed to have anti gliandin antibodies IGg at 8,7 while the value of 10 seems to be the reference for intollerance (which I don't understand because one should not have antibodies for gluten at all if one is not intollerant). So that justified me eating gluten again only to have all sort of problems, but now I'm too confused, there are many potential causes and so I am not able to make judgements. Having said that, I think that you should make tests for yourself. Like I will do as soon as I am able to buy my own products again!

Try GF for a while and see how it goes, then reintroduce it in a meal for a week and see what happens. I guess it's your body and you are responsible for it. It shows you what is good and what is not for it. We just have to learn to listen.

Not everyone who can't eat gluten is a coeliac, some people just have a gluten intolerance, you probably just have that. But if you know you feel much better staying away from gluten, you don't need a coeliac diagnosis, you can just avoid gluten. 

Blood tests sometimes give a fase negative. You need to have an endoscopy to make sure and you need to have been eating gluten for 6 weeks beforehand.

Even if you don't have CD you can still be "wheat intolerant" as there are other things in wheat that you could be reacting to even if not the gluten molecule.  Google "wheat intolerance" and you will find a wealth of information.  Try also researching: Paleo Diet, Primal Diet, Grain-free Diet and Food Intolerance; for a lot of information on other things that cause problems for many people.

Most conventionally trained Doctors have no idea about food/nutrition but there are plenty of other highly-regarded Doctors and Scientists out there, who do.

After years of suffering with pruritis (generalised itchy skin), gastritis/reflux and a list of other vague symptoms, I was recently able to identify cheese as being a possible culprit for me even though I didn't think that dairy itself was a problem for me.  I did a google search on "cheese intolerance" and discovered that I am reacting to amines which are naturally occuring chemicals in food.  There are also glutamates, salicylates and other naturally occuring chemicals that many people react to.  A "food intolerance" is different from a "food allergy".  These chemicals are found in differing levels, in many different foods and the effect is cumulative (ie. the more you eat, the worse the symptoms) which is what makes it so difficult to identify any one particular food that may be causing you problems.  All I can suggest is to keep and open mind and do a lot of research for yourself.

 

Hi again.  I forgot to say that you should also read up on FODMAPs, as the symptoms you are describing also sound like IBS.  FODMAPs is an acronym for the different types of sugars, that are naturally occurring in foods, that are indigestible by humans and can cause Irritable Bowel Syndrome / digestive problems in some people.  Many of them are the foods we are all familiar with like beans, cabbage, cauliflower, broccoli, onions, etc that can cause bloating, gas and abdominal distress but there are many other foods that may surprise you.  Good luck.  I'd be interested to hear how you get on.

Hello, I can completely sympathise - I have been batteling with a diagnosis for 3 years. My symptoms are very different to yours but as you've probably read everywhere - there are a whole host of different symptoms.

Did you know that going GF can screw up your CD results. There are two medical progressional tests - the standard blood tests & the endoscopy. If you've only had the blood test, then push your GP to be referred for an endoscopy. It's not as bad as everyone tells you and the actually procedure is over in about 5/10 minutes. The endoscopy is about them taking a biopsy of your intestines to see if there's damage to the intestines caused by gluten. Medical professionals imply it's the gold standard for testing for CD. 

I'm sceptical as you're reliant on the docs looking for the right thing, taking the right biopsy (& enough  biopsies) & also interpreting the biopsies correctly. Also if like me - you've been GF for years - this can give you a false negative - even if you ate lots of gluten in the 6 weeks prior to the tests. 

I got so fed up wirh GP's dismissing me that I started seeing a private nutritionalist. 

So if you've had both the blood tests & endoscopy and still looking for a diagnosis ... I would recommend a blood DNA test. It's not 100% conclusive to confirm that you have CD but it will give you an indication as to whether you have it in your DNA. Doesn't mean you will get CD, but for me it was the confirmation that I needed. I'm in my early 30's & had lots of malabsorption problems & wanted to know what was wrong before I got any more secondary problems caused by malabsorption. I took the DNA test because I needed some closure and some form of confirmation that I wasn't a fraud, oh and to feel like it wasn't all on my head... as GP's tend to make you feel. 

From memory - the test is only a little over £100 and from my my point of view well with it. Hope that helps. If you go down this route - let me know what your results are. 

You may have an intollerance which I do. Stick to gluten free! 

The most reliable test is a biopsy of the duodenum, but you must do it while you are still eating gluten. Plenty of people have some degree of gluten intolerance even though they do not have celiac disease, however.

Keep in mind that gluten is in many foods, not just wheat. You will have to do some research to remove it, and you will have to do some trial and error to find out how much you can tolerate. I can eat foods with a bit of miso or soy sauce in them, but a pint of beer seems to cross my "too much" threshold. Everyone is different. If you have celiac then gluten must be completely eliminated, but even with severe intolerance there is a bit of "cheating" that seems to be ok.

Get all the tests done, first, then regardless of the results, try sticking to a strict gluten free diet for a month. If you are gluten intolerant you will start to see beneficial changes within the first week.

What does DH mean

Hi, did you end up finding out what it was?

I too am really ill with diarrea and have had negative results for CD.  I cannot ever go out to eat as I am extremely ill afterwards.  However, 5months ago I had a CT scan which revealed diverticulitis disease and was told there is no cure.  The CT also revealed I have two growths on my ovaries which I am having removed today, so will see if this affects me at all.  I am writing to you because I have been GF now for 4months and although it has taken a while, I am feeling heaps better, so although I’m not CD I feel I am gluten intolerant.  I would advise you to keep plugging away by not eating gluten and hopefully it will help.  Having constant diarrhoea is so debilitating and can ruin your lifestyle. I don’t think doctors completely understand and I don’t seem to have any help from them.  I hope you find a happy medium, whereby you can live a half decent life. All the best.