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.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can 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-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is 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 Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
Where can I buy gluten-free stuff?
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I haven't posted on here for a while but I'm having a really difficult patch and guess I'm wondering if others have similar experiences. Basically I had two positive blood tests for celiac but no actual diagnosis (it's a long story!). I'm pretty strictly gluten free and some symptoms had improved a bit but I've still been having ongoing issues with night sweats, swollen lymph nodes etc.
About 10 days ago I stupidly ate something with a small amount of barley in it. I expected some sort of reaction but for the first few days after I felt fine. Then around 4 days after I started with stomach problems which are just getting worse. The last few days I've had absolutely horrendous nausea, reflux, dizziness and other GI issues. I've also lost a bit of weight which makes no sense given my diet recently. It basically feels like my stomach shuts down and stops working. I'm back to having all the symptoms I had before I went gluten free but I don't see how this could still be from a glutening 10 days ago! Also it's weird that it's getting worse not better.
My diet hasn't been great over the last few weeks and I have eaten out a couple of times but I don't think I've been glutened anywhere else.
I guess I'm just worried that this is all still ongoing or getting worse despite being gluten free which makes me think there's something else causing it. The docs have pretty much washed their hands of me so I don't know what to do next. This was always the cycle I had before going gluten free - I'd be ok(ish) for a couple of months then feel hellish for a couple of months So I'm terrified that it's starting again and I'll be ill for ages now. The nausea's so bad it makes it hard to function normally and when the dizziness kicks in I can't drive. And I am really worried that the docs have missed something serious.
Just recently I've had a lot of soreness in my mouth. I have small apthous ulcers on the underside of my tongue (even when I'm well I find I can get them by just eating salty potato chips). I also have had to have a lump removed from my mouth which turned out to be benign. Most of this I put down to stress, not enough sleep and I'm badly anemic at the moment - women's stuff. I have just started to supplement B12 and ferrous glucanate again which has helped in the past. My consultant tells me that often celiacs with blood iron under 50 can suffer from these sores and if I have an infusion it should sort out the problem.
Silly of me but I've just made things far worse, I believe, by consuming a few pure (i.e. gluten free) oat cookies in the last couple of days. I've avoided oats for a long while now but thought I'd give them a try again and my mouth is tremendously sore this evening.
No, I won't swallow it! Right now, the wound is not really open, and cold relieves the pain more than warmth, so I'm not sure how much good salt water will do. I guess I get to anticipate the day when it does open, if it does. O goody. The pain is incredible. And I'm very hungry because I'm not eating enough. This really sucks, I must say. Thanks for your other words. Yeah, it was the citrus, and the stress, and some sugary things probably did not help either. Ugh.
If your blood tests do come out as negative, and they might, you can ask for genetic testing to rule out celiac and an endoscopy to check for damage.
I was in a similar situation years ago. I was gradually getting more and more tummy problems, a friend suggested cutting back on gluten and bam, I felt better when I did. So, when I finally was able to find a doctor who was willing to believe I didn't just have IBS, I already knew that if I ate gluten I had major diarrhea problems and pain... so went basically gluten free. I told that to the doc and he didn't believe me... but my blood tests all came back negative. Then he did the genetic tests to rule out celiac... they came back positive. Then he did an endoscopy and found damage and diagnosed me... and sent me to a dietitian who knew less about going gluten free than I did. I've been extremely careful since then.
Weak positive means you should have an endoscopy done (with several biopsies) to see if you definitely have celiac. You have to continue eating gluten until the testing is done. If the biopsies don't confirm celiac you can always try a strict gluten free diet for a couple of months to see if you feel better.