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
Excerpt from Gluten-free Friends Fall 1996 (Vol. 2, No. 3) R. Jean Powell, editor Montana Celiac Society 1019 So. Bozeman Ave. #3 Bozeman, MT 59715.
celiac disease, also known as gluten enteropathy, is neither an allergy nor an intolerance. Gluten enteropathy causes damage to the lining in the small intestine, which interferes with the absorption of nutrients. Neither allergies nor intolerances lead to this sort of intestinal damage.
.....a monthlong Gluten abstainance in April and it was horrid. Before that, my test results were borderline in all cases. I had borderline blood tests which "just maybe" indicated I should have the biopsy just to "rule out" celiac disease. The biopsy came back inconclusive. They detected the presence of antibodies that "might" be indicative of early onset celiac disease. I took the diet very seriously for the monthlong time period. I had some improvement, but it was far from alleviating my diarrhea. So I was prescribed Elavil 50mg (antidepressant which might calm my nerves and it slows peristalsis) and it helped "some" as well. I can live a perfectly normal life on the Elavil and immodium daily........
It is NOT normal to have to take Elavil and immodium daily to have a normal life.
You may have celiac disease & you are not damaged enough to react to blood tests or to show up on a biopsy.
It may be that you will show up later in life to have celiac disease - after sufficient damage has been caused.
What does seem certain is that you have a health problem.
If you are quite sure that you have been strictly gluten-free for at least one month and given that your diarrhoea has not stopped & you do not feel better I would think there must be some problem other than celiac disease.
It is very difficult (at first) to be very sure you are cutting out all gluten- eg if you eat out you may have contamination from gluten ingredients in the restaurant, if you use an ordinary bread board or knife you may get gluten contamination, if you eat any processed foods these may contain small amounts of gluten, any soft drink/ alcoholic drink like a cocktail may contain gluten etc etc.
To make a fair gluten-free trial you should start from scratch and use only pure gluten-free foods in gluten-free surroundings. My sister in law did not understand,until I explained, that I could not safely eat vegetables chopped on her breadboard.
If you are getting even a tiny amount of gluten (a few crumbs of ordinary bread) you can still have diarrhoea if you have celiac disease. I know this because I did not realise at first that my gluten-free bread should never be toasted in the family toaster. That was the cause of my diarrhoea early on when I started GFD. When I got & used my own new gluten-free toaster my diarrhoea stopped.
You should try to find out what is causing your ill health - please go back and seek medical help.
There must be more tests that can help you find out what is wrong with you- as long as you are convinced you have given the gluten-free diet a fair trial.
There is no point in you going gluten-free if you do not have celiac disease - so my advice is to find out just what is causing you to be ill (if you know you have been strictly gluten-free and it has not helped you feel better).
It is difficult to think about going back on to a normal (gluten-containing) diet if you feel better gluten-free.
However, the only real way to find out if you have celiac disease & not another condition is to eat a normal diet and be tested then for celiac disease.
As you had been gluten-free before you had a test before this may mean you had not had sufficient gluten to cause a reaction.
However, it may be that you do not have celiac disease & the test showed that.
For information about how much gluten is needed prior to a test for celiac disease please see:
It is a shame if you feel you cannot eat out because you are frightened of eating gluten but if you do not have celiac disease at all and your problems are due to something else which can be resolved you should be able to eat out OK.
If you do have celiac disease then a local celiac disease support group should help you find a safe place to eat gluten-free.
Some people who are overweight can be diagnosed with celiac disease.
I have not heard of a GFD causing weight loss through water loss.
For a proper diagnosis you may wish to talk to your doctor and go back on a normal diet for long enough to have a gluten reaction and be tested again for celiac disease.
If this is negative again you may want other tests to find out what is actually the cause of your problems.
I was diagnosed only 3 years ago aged 57 but I had been ill for over 30 years.
It was thought recently (after research in Bristol UK on 7 year old children) that, because about 1 in 100 of their sample had blood tests which indicate celiac disease- the same as for adults, the condition may start in childhood but often is not diagnosed until we are adults.
My symptoms were anaemia, mouth ulcers, tiredness, thyroid problems.
I also found out I had osteopenia (low bone density) through a DEXA scan.
The medical advice is not to adopt a gluten free diet (GFD) until & unless you have been diagnosed (usually by biopsy/gastroscopy) with Coeliac (celiac) disease (celiac disease).
There may be other reasons why a person has symptoms which are associated with celiac disease so it is best to be quite sure celiac disease is the correct diagnosis.
I know it sounds hard but if you have not been properly diagnosed with celiac disease you should go back on a normal diet & have a blood test & biopsy to make sure you do have celiac disease.
It is not unusual to have depression with any physical illness and some people with celiac disease do have depression.
You have to obviously be careful, if you have been diagnosed with depression, to make sure any medication you may be prescribed for the depression is gluten-free if you have celiac disease.
It seems best if you go to your doctor to explain your situation.
There is no point in you going on GFD if you do not have celiac disease but if you do have celiac disease you need to be on a suitable gluten-free medication if you are diagnosed with depression.
If you are diagnosed with celiac disease you should join your local Coeliac Society where I think you will get a lot of support and advice.
You should be tested for lactose intolerance before giving up milk & milk products.
If you have damaged villi due to celiac disease the microvilli (on the tips of those villi) which normally deal with lactose may be temporarily damaged, too.
When you cut out or cut down on lactose the microvilli re-grow & can work again.
The condition can be resolved by cutting out lactose- containing items for a few months or weeks if you are lactose (milk sugar) intolerant.
I had L I for several months after being diagnosed with celiac disease but was still able to digest hard cheese, gluten-free yogurt and goat's milk & cheese OK since these are very low in lactose.
I can now drink some ordinary milk each day without any reaction but have soy milk or lactose-reduced milk as my main milk.
It is possible you may have Dermatitis Herpetiformis
Dermatitis Herpetiformis is a rare condition with a very itchy rash.
DH associated with Coeliac Disease.
It is, however, difficult to diagnose and not many skin specialists understand about it.
You can see examples & descriptions of DH & ask for advice on this website.
Bone pain can indicate low bone density which is a risk for coeliacs.
Have you had a DEXA scan? This can show the state of your bones.
I used to be underweight before diagnosis. Then I could eat any food & it would rush through me as my body tried to get rid of the gluten.
When you are diagnosed with celiac disease your body can recover on the gluten-free diet & it absorbs more, including the calories!
However, being overweight could indicate a thyroid problem which is sometimes found in coeliacs, so you might want to have your thyroid checked - but I think you may find you are just absorbing more food now your guts are healing.
It can take up to two years completely gluten free for the damage due to celiac disease to be healed, 3 months is quite a short time to expect recovery but obviously your son is getting better.
One can be tested for lactose intolerance. This problem can be quite often found amongst coeliacs as the microvilli dealing with lactose (milk sugar) may be damaged in celiac disease, these microvilli are on the tips of the villi lining the small intestine which are affected by gluten in people with celiac disease.
Even if your son has lactose intolerance this is usually temporary & a lactose-intolerant coeliac can usually digest hard cheese & yogurt made from cow's milk & also goat's milk/cheese.
I was always able to eat hard cheese, gluten-free yogurt & goat's cheese when I had temporary lactose intolerance.
Iron-deficiency anaemia due to celiac disease can take a very long time indeed to recover by diet alone, even when a coeliac is strictly gluten-free. You can have strong iron supplements to help with low iron but these are on prescription only.
I had to have these strong prescription supplements after I was diagnosed with celiac disease until my iron went back to normal - your son may need these, too, so ask your family doctor if these are needed.
As I said, it can take a long time for a coeliac to recover and heal on GFD so it may be your son just needs time to heal but it is a good idea to see a specialist to check re the blood since his iron has gone down.
Yes, in UK we say 'See lee ack' (or 'silly yak') and it is spelt coeliac here & in some other countries.
There is a Tropical Sprue as well as Non-tropical Sprue but the Tropical type is temporary and not for life as is Non-Tropical Sprue (Coeliac/Celiac Disease).
I think it is confusing to call it Sprue as it is not clear if you do that which type it is.
Here's one explanation as to why the word is 'coeliac':
The Greek work "koiliakos" used by Aretaeus had originally meant "suffering in the bowels" when used to describe people. Passing through Latin, 'k' became 'c' and 'oi' became 'oe'. Dropping the Greek adjectival ending 'os' gave us the word coeliac.
If you prepare your own food from raw gluten-free ingredients you should start to recover well .
It actually can take up to about 2 years to completely heal the villi that have been damaged by celiac disease.
Be sure not to get accidental gluten contamination. Have your own gluten-free area in the kitchen, do not share eg butter, spreads, chopping boards etc.
Can you find gluten-free organic bio natural yogurt?
This contains 'good bugs' which replenish the gut. They will not last forever but if you have this type of yogurt fairly often it should help with your digestion. If the yogurt is labelled 'suitable for vegetarians' you know there is no ox bile in there!
The aid reflux might be helped by- loosening clothing when eating, eat slowly and try to relax at mealtimes, have water to drink with food, do not bend over or lie down soon after eating, avoid orange juice and mint.
Eat safe gluten-free rice cakes until you have found a suitable gluten-free bread which agrees with you and then use your own bread board, bin, toaster & knife.
Make sure your food never comes in contact with anything breaded or floured or any surface which has had breadcrumbs or flour on it. You may want to buy yourself a new wooden spoon & keep it separate from other such spoons.
If you stick to eggs, cheese, plain meat or fish and rice, potatoes and vegetables and fruit like the coeliac's friend, the banana, you should be gluten-free and start to heal.
Look for gluten-free organic plain soy milk and soy desserts. These are high in protein and calcium and easy to digest.
Later you can try organic tofu and gluten-free soy sauce (Tamari) mixed in plain boiled rice.
So many processed foods contain gluten that it is easier to remain gluten-free at first by sticking to plain food that you make yourself.
This will probably be for a fairly short time but it is best to start with plain home-made gluten-free meals and add other things later, always being sure you keep your food as separate as possible - unless everyone is having a gluten-free meal.