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
Just wanted to share a little story for those of you suffering but feel certain you have celiac but unable to get conclusive support.
I had issues as a child, then again in my teens and again in my 20's which eventually led to my gall bladder being removed (I finally had an acute attack, had jaundice and they discovered it was full of stones despite being underweight and having very low cholestrol count and no family history of gallstones). Last year, it started again and through many drs and naturopaths, I began to once again suspect it was celiac(ruled out when I was a teen b/c I was relatively tall).
I asked for the blood tests during my physical last year and was lactose intolerant, and almost anemic iron and b12 levels as well as having positive numbers for the celiac blood tests. The GP deduced celiac. I asked to see a GI (wanted someone to check the intestinal damage) so I was booked in an appointment 8 months out (live in Canada- we have to wait for specialists). I went gluten free for those 8months and felt great by month 5..how wonderful to go to the bathroom like a normal person and all the other annoying symptoms were gone!
When I finally went to the GI, they said I would have to have the biopsy and that it couldn't be medically deduced without despite positive blood work and gluten challenge (we don't have Enterolab in Canada so that wasn't an option). Disheartened, I went back on gluten for 3 months and suffered for it...I even got a rash this time around which I feel may be DH but no one would do a biopsy.
Yesterday I had my gastrocopy and was lucid for the entire procedure. To my heart's content the dr said 'yes, the villi do look a bit flattened' (he had been claiming it as IBS in our previous consults). It will be 10 days before the results are back but even he was suggesting I could go gluten-free right away if I wanted to which I replied 'that was my intent regardless of diagnosis, I know how I feel'.
So to make a long story short, it's good to get a diagnosis for the sake of screening relatives but if you've done the research and know how you feel and the symptoms are there..don't lose hope and don't suffer. you aren't alone. Thanks to you all for an amazing source of info and encouragement. I look forward to checking back here to read and post often.
I think a lot of celiacs or gluten-sensitive can associate with mood swings and migraines and mental fogginess but your father's symptoms do sound extreme.
As others have said, it is a lot to deal with and the symptoms last months even after going gluten-free (time your body needs to heal) so partly it could just be a lot for him and a psychiatrist may be a good avenue to try.
Another, as has also been stated, is to get regular bloodwork done to determine nutritional deficiences, iron, b12, folic acid and vitamin K are a few that are often associated with celiac. I had to have b12 and iron shots myself and found that I was very fatigued and unmotivated due to it that I was almost depressive in nature.
Also you may want to look into other auto-immune diseases that are often associated with celiac...maybe thyroid issues? (which affect mood and energy).
I'm not sure what to say if you're father's blank stare is attributed to mental issues and not fatigue or depressive like symptoms other than continue to search for a dr who will take your considerations into account and spend some time diagnosing .
(not a medical professional by any means, just sharing some experience and research)
Best of luck.
definetly get tests done before you go gluten-free, otherwise you risk the tests being negative.
I had positive blood so went gluten free for 8 months and every symptom corrected itself by month 5. Then I saw a GI who insisted the biopsy was the only conclusive proof. I've been back on gluten and suffering for 3 months in prep for my endoscopy tomorrow.
You may or may not find a dr who'll accept 'gluten-challenge' (the diet) as proof, but many on the board will agree it's the way to know what works best for you. Even if my test is neg tomorrow- I'm going gluten-free. I know how I feel.
I'd advise you to try different dr's if you want the medical diagnosis before gluten-free as it is harder to go back on once you've been off.
best of luck!
Hey Again Alexoula.
I know a really strict elimination diet is no fun but like in your last comment, I couldn't tie my reaction directly after eating the food.
In fact, even after the elimination diet I couldn't tell bread/gluten was the problem. I'm one of those 'undiagnosed celiacs' who have constipation (more than the diarrhea) and (awful to say), it wasn't until I was 'entirely cleaned out' (colonics) that I could link the food to the reaction.
I'm not suggesting you go that far but be aware that sometimes things remain in your system for a long time so it's hard to link the cause and effect. If you do choose to do elimination...try to be as strict as you can for at least one week to better your chances of seeing the connection or your effort may be all for naught.
I'm back on gluten to prep for a biopsy. About two months in (and during a stressful period), I developed some sort of rash.
It came out on the back of neck up into my scalp, my front shoulders, tops of knees but mostly on my elbows and forearms.
When the spots first come out, they are itchy like a mosquito bite and turn into a big pink welt. After a couple of days, they form a blistery head but are not longer itchy. The blister stage lasts one-three weeks then eventually turn into a scab and dry out.
I have psorasis and exczema which don't come out like this - this is brand new.
I went to the dr last week and they were perplexed. Basically told me to use hydro-cortizone and come back if it gets worse or continues.
It's continuing but it's not like the pictures or stories I hear about dh. They aren't bright red spots, they aren't that bothersome, and they are fairly scattered (at most 6 on a forearm).
I haven't changed any detergents, soaps, etc. and don't typically get hives or any other form of rash or allergic reaction.
I think it's a far stretch but have to ask..anyone had anything similar??
Something that helped me and may help you. I saw a naturopath and orginally she thought I had a 'toxicity' problem. She suggested the 7 day brown rice diet.
It's a good diet to not only completely detox and get the digestion running right again, but you add back in foods after the 7days 1 week at a time in the order they are most problematic so you can narrow down any food issues.
It's a tough diet (very, very strict - no sugar, no salt) but it does clean you out so you can see a closer relationship to problematic foods when you add them back in.
Brown rice is one of the best sources of fibre and easiest things to digest so it will reset your organs to zero!
I get a lot of cankers when on gluten as well. When I went gluten-free, some of the symptoms - abdominal pains, went away immediately but some took until the 5 month mark - cankers and mouth ulcers were one of them.
I'm back on gluten for biopsy prep and that was the first thing to pop-up again when I started.
I have a similar 'does this sound like dh' question.
I'm on gluten to prep for a biopsy next month (was gluten-free for 8 months and all my symptoms cleared up, have positive blood so other than the biopsy, everything else points to celiac).
I don't think I've ever had dh before but I do get both ecxzema and psoraisis. This week is very stressful for me and I'm noticing I feel much more sick after the gluten this week. I've broken out into a 'rash'. It started on my back and back of neck and now it's mostly on my arms (forearms, shoulder joints and hands) and the tops of my knees). The spots aren't 'symmetrical' other than I have them in the same areas on both sides and they look more like big pink welts, some with a water blister top, than dark red sores as I've seen on the internet (I don't scratch).
They seem itchier after eating.
I've gotten a new set of spots every day this week and the initial ones aren't healing.
Sound like dh? or hives from the stress?
Wondering if pre-gluten-free anyone noticed their reactions to a specific gluten food varied.
I'm back on gluten for 3 months to prepare for the biopsy and have to ingest gluten twice a day.
Some mornings I have a bagel and cr.cheese and it's only moderate pain (I'm lactose intolerant but take lactaid pills), sometimes (like right now) it's horrible. The other day I had bread at breakfast and it wasn't too bad, but was sick after my spinach and crouton salad at lunch - in fact I had to hit bed for the rest of the day.
I have positive anti-bodies, steatorrhea, alt constip and diar,psoraisis, low iron, low b-12 and definetly had all symptoms clear the 8 months I was gluten-free but I'm puzzled I don't get the same reaction consistently after the same food
Thoughts? anything to do with what is already digesting or has last digested or stress?? anyone else experience similar??
The Irish connection dispelled.
Ireland is one of the more frequent countries to start ingesting wheat. They (and all the british isles) have only had it in their diets for 3000 years whereas other countries have had some form of gluten formerly in their diet for tens of thousands of years.
It's the "irish inability to digest wheat" b/c we haven't eaten it, our body thinks it's a toxin and we're more liable to have anti-gliadin show that our bodies are fighting it off vs ingesting it properly.
I'd vote for 'get the diagnosis'. Several on the board have gotten relatively quick tests from enterolab and had the results accepted by their GI/GP, if your Dr won't confirm the diagnosis just with the blood test, ask if he/she would accept this.
I don't have that option living in Canada. I had positive blood so went gluten-free only (I felt better than I ever have in my life, all symptoms disappeared, all anemias turned around) to have the GI tell me 8 months later they wouldn't confirm celiac without the biopsy. I want the formal, medical diagnosis so Dr's will keep an eye out for associated illness, my children will get tested, etc.
I'm now back on gluten in preparation for the biopsy and am more sick than I was before. I know it's not fun but my opinion would be to get the diagnosis (unless you don't care and it's unbareable, in which case try to find a more sympathetic Dr and go gluten-free).
If your GI insists on a scope, there may be options. I'm paying to go to a higher end private clinic just so I don't have to wait the 9 months for the appt (I'm in Canada, public health care takes longer).
Best of luck. Fingers crossed.
I seem to have inconsistent abdominal discomfort after ingesting gluten. Sometimes a half a bagel is a bit of discomfort, sometimes I'm out for a few hours.
At first I wondered if it was related to having other food to digest still in my system/how empty my stomach was..but now I'm wondering if it's worse when I'm stressed.
anyone notice any patterns?
If you're gluten-free and haven't yet gone to the new Wholefoods chain, do.
By far the best selection of gluten-free in the city! labels on the shelves let you know what is purely gluten-free. They also specialize in organic and specialty foods. Very yummy.
It's pricey, but worth it.
Located in Hazelton Lanes in Yorkville.
I agree with celiac3270. I was really sick and had positive blood results for antibodies so I went gluten free. The symptoms started to go away immediately but it took 5 months before eveything was cleared up (normal bathroom habits, no migraines or nausea,no cankers, no acid reflux, no psoraisis, increasing iron and b12 level).
I finally got into the GI 9 months later (hard to get an appt to a specialist quickly in Canada) and they are insisting on the biopsy to prove it's celiac.
(thanks to celiac3270 who suggested enterolab but being a Canuck, I don't have the option)
I'm now back on gluten and it's rough. I'm trying to have gluten at least 2 meals a day but I find I become incapacitated if I eat too much at one meal or have an empty stomach and eat a primarly gluten meal (i.e. bagel and fruit, sandwich).
I couldn't get agreement from GIs on how long you had to be back on gluten for it to show up but consensus from the two who did have a confident answer was 3-6 months.
I've opted for the three months. I'm one month in and have half of all my symptoms back.
Try constant but smaller amounts of gluten...i.e. the odd cracker or cookie throughout the day but do stay on it..if you're like me, you'll feel crappy but not incapacitated.