This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Hello! It's been a long time! I am now as good as symptom free.
After going gluten free for a while (and getting better), I went back to eating wheat & co. I didn't react. I think that maybe any stomach irritation would make gluten hard to digest!
Right now, I only occasionally get acid reflux, mostly after eating fatty food (which also gives me stomach aches at times!)
My period went normal after starting the pill at my doctors request. She also found an ovarian cyst, which may have wrecked havoc with my hormones (which were a little out of balance - to little of this, too much of that)
Also, the doctor found out I had mononucleosis antibodies, which suggests that my stomach problems could have been long lasting after effects of that.
I have some friends who also got better from not eating gluten, but then did not get worse again from eating it again. I think that ruling out gluten completely might often not be necessary even if it makes your symptoms ease after a week or two, because it would most likely do that with any stomach problem!
Just realized that Heidi g. suggested candida. I have also considered this to be a possibility - especially because my mother used to have this when she was younger. Maybe I should try to cut out yeast but not gluten if my current gluten free trial doesn't prove anything.
I've been on gluten again for a while, but just went off again today.
I was "fine" (not perfect - but only diffuse symptoms) for the first few weeks with gluten, but a week ago I was ill for three days. Really bad headache, diarrhea, intense stomach cramps.
Is it normal to suddenly get really ill for a couple of days like this, or is this most likely just a virus? the weeks before and the week after were all better, all though I ate gluten (approx. the same amount) the whole time. Also, I had exactly the same symptoms - only more severe - last summer. (for two weeks! Ugh)
A very curious symptom is the (sorry, disgusting) mucus. I have had it on and off for a very long time, but when I was gluten free it was only a couple of times (maybe after accidentally eating gluten?) The last few days it has been more severe.
Also - my amenorrhea returned. If this resolves within a week or so, I'm getting REALLY suspicious (that's what happened last time I went gluten free)
Another thing - my little brother, who has had some of the same problems, got gene tested - and does not have the "right" genes for Celiac's disease.
I know we don't have identical genes, but it makes me think even more that IF it is gluten I'm reacting to, it is likely to be a non-celiac gluten sensitivity.
I still have tonsil stones and my tongue is all white every morning...
Also, I went to the doctor again. Did a couple of tests - nothing seemed to be wrong.
If I find out it isn't gluten after all, perhaps I have some sort of yeast overgrowth in my body? Because eating less grains and yeast (only occasionally and mostly frozen) like I do when I'm gluten free would probably benefit for that as well.
OK, an update. I went gluten free for a month, and quite early on my amenorrhea resolved.
Now I'm back on gluten, and I certainly feel worse. I do not want to draw any conclusions yet... But here is what I've noticed:
- headaches. Pretty much every day. I used to have this a lot before I went off gluten, but did only have occasional headaches while off.
BUT: Not conclusive - because it has been -15 or so outside, which triggers headaches for most people.
- Digestion. Not as bad as it was before I went gluten free, but I do believe I'm getting some of the symptoms back... (Constipation-ish, diarrhea-ish - alternating)
- Feeling tired and weak. I noticed this from day one back on gluten...
- Stomach aches - upper middle stomach. This is the kind of stomach ache I had before I went gluten free, and this morning I felt it again. Not as severe, but certainly there. Also, I get a stomach discomfort after eating sometimes, and I get easily nauseated.
Keep in mind, all these symptoms are (at least at this point) very diffuse and mild, so I will not draw any conclusion until I feel confident that these are not just placebo-symptoms.
Oh, and just a little note for those worrying about the losses of not eating gluten... I during the gluten free month, I felt like I missed bread, cakes, anything with gluten really... But when I ate it again, I realized I can do perfectly fine if I have to live without it. You just want what you can't have, heh. Really - I kind of miss my gluten free bread (most tastes blah but this one kind: "Fria FIBER" is So. Darn. Good. Especially toasted - which can by the way be done from a frozen state!)
I've been free of gluten for a week, and I have indeed noticed my symptoms (especially stomach aches and digestive problems) getting better... I still don't know this is just a coincidence, so I'll have to wait and see. In a couple of weeks I'll try eating a generous amount of gluten for two days and see what happens. I think I will eliminate any yeast during these two days - because yeast also is a possible culprit for me.
I promise I'll get back to you with the results - too many people abandon their forum threads, leaving all the concerned googlers out there clueless.
Most doctors leave it at that if the patient tests negative for celiac - not even considering that non-celiac gluten sensitivity might cause the same symptoms!
So yes, the point is to figure out how likely it is that gluten is the culprit, even if you test negative for celiac (no matter if you actually are celiac or the gluten your sensitivity to gluten has a different cause)
I am really surprised by these results... And glad I made the poll so more people won't immediately rule out gluten as the cause of their troubles.
With these results its hard to believe that the the blood tests are supposed to be over 90 % accurate!
All though this some of these comments are quite shocking, I can't help but find some of them hilarious at the same time.
But the thing with the spoons and the different serving plates is extremely rude. I really hope people will start to realize that celiac sufferers may react to the smallest traces just like people with extreme cases of nut allergy, which, for some reason, is taken so much more serious. Maybe it's because they cannot really see what is going on inside the body, whilst a swelling of the eyes and throat seem more threatening?
So many people are wondering how common false negative blood tests for celiac disease are - or to be precise - what the chances are of having celiac disease or non-celiac gluten sensitivity if your doctor tell you that you can go ahead and eat gluten.
If you know you are gluten sensitive - PLEASE VOTE, whether your blood tests straight forward told you you were POSITIVE for Celiac, or they falsely showed up NEGATIVE, and you had find out for yourself that gluten was the culprit. It could make a great difference for someone suffering like you probably have suffered - perhaps for several years!
Off course - this poll will still overlook all the unknowing celiacs out there, mislead by blood tests - who probably stand for the greatest percentage of false negatives.
To make it simple, I only added two alternatives. This is to clearly show the proportions between positives and false negatives.
Thank you for the replies everyone!
I've wanted to get a different doctor for awhile, because my doctor has more or less misdiagnosed my entire family... The first time I went when the first diffuse symptoms started to show up, she blamed it on "too much stress and too little exercise." How easy isn't it to blame it on that in a teenager.... But where I live, it is almost impossible to get a different doctor right now...
I forgot to ad that I have had two gynecological investigations with everything seeming alright - so at least there aren't any cysts or tumors or anything like the bladder, lower stomach or ovary etc. area.
I think I will try to go gluten free for a month and then test my reaction to gluten, like was suggested. I have tried staying off of bread for about a week before, because I thought I might be reacting to yeast. This made my stomach slightly better, but since cakes and cookies seem to make it worse too, I doubt it's really the yeast...
So I'll just try it out and see what happens
I am 18 years old, female, normal range BMI, no great weight gain/loss lately (or ever...?) and no diagnosed celiacs in my family as far as I know.
However, on my mother's side, there are many cases of digestive trouble (My grandmother had stomach cancer (stomach problems all her life + weak bones), uncle a terrible stomach, mother a lot of stomach trouble too)
For a while, I have had a bunch of symptoms (I'll list these later on!)
My mom suggested I might be celiac, because I tend to get my worst stomach aches after eating a lot of bread or cake. I bought a home test (it said it tested for anti-transglutaminase antibodies) It turned out negative.
Two months later or so, my symptoms got worse. I went to the doctor, and he immediately suggested celiac. I got tested, but once again - negative. They didn't tell me exactly what they tested for (which antibodies and so on), or exactly what the results were - only that I did not have celiac disease.
And the doctor just gave me an information sheet on - off course - IBS... Is it just me, or does IBS just mean that the doctors cannot find a cause?
However, I've read several places that the blood tests are not very accurate - especially in early stages of the disease. I have had my symptoms for about two years, so I think that would be considered an early stage, right?
Here are my symptoms:
Loss of period (two years - minus half a year of taking hormonal prevention. Once I stopped, so did my period)
joint aches - very sensitive wrist joints, knee problems, shoulder pain, random ankle pain
a lot of headaches
Mental issues - like crying for no reason, mood swings, feeling anxious/sad every other day all though I am generally very happy with my life
Stomach ache - upper middle stomach (between ribcages), very lower stomach (bladder area maybe?), down the hips/groin area on the sides - feels like lymph nodes
very bad tearing stomach ache if I get too hungry
Discomfort connected to bladder
difficulty emptying the bladder
reappearing tonsil stones
white mucus on tongue - a lot of it! Also, a couple of barely visible circles (like small coins) on the surface of the tongue
small pink lumps on the back of the throat, spreading to the inside of the cheek area by the tonsils, around the molar area
I have cancer sores more often than anyone I know
also, there's always traces of blood in the mucus whenever I blow my nose, and my eyes are often red. They also easily hurt in dry air etc.