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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Am Totally Confused Now!
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9 posts in this topic

I posted here before a few weeks ago about a blood test and symptoms. I have had diarrhea almost daily (and several times at that) since the birth of my 2nd and last child in 2000. It started immediately after her birth. I also had a tubal done at the same time. I suffered from diarrhea usually instantly after eating, but sometimes for no reason (maybe just a sip of water). Exactly one year later I had emergency gall bladder sugery (several stones and 3 attacks in one week). Then I really had a problem. No more travel. It was an adventure just to get to the store and back. I had to starve for a minimum of 2 hours if I planned to go anywhere and no eating until I had returned. The cramps were unbelievable. I also suffered migraines during this time (no previous history with them). I also had several other things going that would suggest celiac. Finally in May, my GP ordered a celiac test. It came back weak positive. I came here and researched this thing to death and was sure I had my answer. I wrote down all the recommended tests and took them to him and requested they be done. He was more than glad to help. Everything on there came back negative (and I mean a LOW negative), except the IgA-it showed a weak positive of 23. I decided to do some more reading and researching before committing to the GFD (already had a colonscopy once and not eager for the endo). I forgot to mention that in the last 4 years I have eaten anything I wanted and never gained a lb. Actually due to 3 different flare-ups that cost me 2-3 lbs each time, I had lost almost 10 lbs. I had never gained a lb. Once lost, it would stay off-due to the constant diarrhea I'm sure. However, in the last 2-3 weeks, the symptoms have lessened and gotten farther apart. Now, I am almost 1 week totally symptom free. No headaches, no diarrhea, and I've gained 4 lbs! There are no cramps, no reactions, no nothing. What in the world is going on? If this is celiac, does someone who shows 'classic' symptoms from the beginning of onset of the disease for 4 years suddenly become a 'silent' celiac? And if it isn't celiac what is it? And why are my IgA levels showing a weak positive? I am at a loss here. I have never heard of celiac symptoms just disappearing after years. Can anyone help me out here? Any suggestions would be more than welcolmed!

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Truly the endoscopy was A LOT (at least for me) easier than the colonoscopy... there wasn't much prep and you really don't remember much from the procedure. I know it's difficult when you don't have an answer to why you're symptomatic, but just keep asking your doctor. It's better to rule it in/out than to wonder and possibly endanger yourself.

For me, the most celiac-positive-related antibodies I tested negative for, but like you I have at least one showing up in my blood. My IGA was 23 (like you), but my IGG was positive. Still with those two, it's still inconclusive, since my endo & colonscopy biopsies were normal. If I were in your shoes, I'd get the endo. I don't believe that antibodies show up for no reason, but I'm not a doctor.

Good luck!

Gretchen

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I don't have answers for you but if I were you I would go to enterolabs.com and do their stool test. It's fairly reliable and you would know for sure. I know how frustrating it is to not know.

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I thought I needed to correct something I said in my original post. My IgA was NOT positive. It was negative (8), it was my IgG that had a weak positive (23). I know this might change things. I am almost sure several other things could cause a positive on the IgG. Thanks!

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KC, that's all I had for a year or so, then the IGA showed up. Yes, there are other conditions that can cause the IGG elevation, but the important thing is to not be disuaded to pursue an answer.... you are obviously experiencing symtoms and need an answer to that.

My next step is some more tests, my wedding (at which I've already bought a very expensive and probably toxic cake), and then I'm going gluten free! :D Best test for inconclusive blood tests would be "the diet"!

Good luck!

Gretchen

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Thank you so much for the reply. The only problem I would have doing the gluten free diet is that I have been TOTALLY symptom free for 3 weeks now! I keep waiting for something to happen, but it doesn't. I have changed nothing in my diet whatsoever (which accounts for the gained lbs!). I am taking no medication, doing nothing different at all. I used to have daily headaches, dry mouth, daily diarrhea (multiple times), and had lost 10 lbs in 4 yrs. Now I have nothing. The headaches, dry mouth, diarrhea-it's all gone. No cramps, no rumbles, nothing. That is why I am so confused. If I have celiac, how can the symptoms just disappear? With no diet change or no medication? I can't find anything on the

internet that comes even remotely close to explaining this. Anyone with a theory?

I should also mention that in 4 years time, I have never had more than 1 day without an 'episode'.

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I don't know... I'm sure some here could explain your lack of symptoms in relation to celiac... I guess it all depends on what you eat, how much of it and how sensitive you are. I'm curious though, has your doctor ruled out IBD (inflamatory bowel disease).. .ie: Crohn's, etc? Those with IBD experience flare-ups and can go for time with / without symptoms. I've read that IGG's are frequently elevated in relation to IBD's. Just thought I'd mention that.

Gretchen

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Wow, thanks for that info! I have been searching for anything I could think of on the net that associated IgG and non-celiac disease. I had a colonoscopy about 1 yr into this and it showed nothing, so my GI said 'IBS'. I will definitely research IBD and see if maybe that could be a possibility. Thank you so much! :)

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There must be 1/2 dozen or more tests that are needed to fully explore the intestinal tract.... anything from x-rays to scopes to cameras. Crohn's is usually in the small intestines and ulcerative colitis is in the large. To explore the small intestine where Crohn's usually is you'd probably need a small bowel x-ray (you drink some chalky substance called barium and then they x-ray you)... a colonoscopy won't reach. I've still got to get this ruled out myself... maybe in a month or so.

Good luck to you and you're welcome.. I could only hope to be as helpful as so many are here.. I'm just sharing what I've learned :)

Gretchen

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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