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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.

Celiac Or Not?
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14 posts in this topic

I've never posted before, so I'm a bit nervous! I'm wondering if anyone ever get an inconclusive result?! I've been on this journey for years! After 4 years, I've gotten diagnosed with IBS, bile reflux, acid reflux, endometriosis, gallbladder disease, and possibly celiac. My gallbladder was removed in 2009, then the problems only amplified. I've had endo surgery a year ago. Still sick! I went to see my 2nd gastro. He performed tests for 2 years before the biopsy. It came back with intraepithelial lymphocytosis. He also noted scalloped villi, but the pathologist noted the structure was still intact... he noted that it wasnt h.pylori or enteropathy and that it MAY be seen in some cases of celiac. I've gone gluten-free before suspecting an intotolerance and felt so much better. This time around I am feeling better, but having some really bad days. I've been gluten free for about 3 months now, I'm also going dairy free because it seems to upset my stomach. I'm just wondering if I am celiac or not?! I feel like I've been chasing an invisible disease for years and being told for so long that I'm too young and healthy-looking to have so many complaints : / I just want to have a name for my misery!

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If the gluten-free diet makes you feel better you either have celiac or non-celiac gluten intolerance. I don't know if an official diagnosis is important to you or not. Many of us (myself included) do not have a formal diagnosis, but we know that gluten makes us sick.

 

If you're still having bad days, it might be because you are getting cross-contamination from something. Read the Newbie 101 thread. It'll help you so much. Then come back and ask more questions. We're here to help. :)

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It is sometimes better for some to get the DX. But others don't really seem to care as long as they feel better. It is a personal decision. 

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Did you have the blood antibody tests done while you still eating gluten?  Scalloped appearance in the small intestine is seen in celiac disease.  Scalloping is caused by destruction of the villi lining the intestine and smoothing of the interior surface of the intestine.  My understanding is scalloping is a sign of advanced damage to the villi, not the beginning stages.  Did they tell you your marsh scale number?

 

Healing from celiac damage can take months or years.  Celiac disease is an autoimmune attack on the intestine and your immune system is always working.  The immune system keeps us alive by always being ready to attack invaders/germs.  So even the slightest amount of gluten can trigger attack.  Plus the immune response doesn't stop in a day, it goes on for possibly weeks in some cases.  That makes it harder / slower to heal as the tissue growing back is also being destroyed.

 

With that kind of visible damage and positive blood tests, celiac is pretty much the only thing it can be.  Did you have positive blood tests?  Usually they do the blood antibody tests first and then the endoscopy to confirm villi damage.

 

 

 

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Thanks for responding! I guess a diagnosis is important to me, living in southern louisiana this is a condition not well understood. I guess I'm just wanting to have a name.

My blood tests were negative for celiac. It was only noted during the biopsy that it may be celiac. I've tried gluten (stupid, I know) to see what or if I'd have reactions after feeling so much better.

I've also questioned it because I've been very diligent not to have gluten, with few reactions to unknown sources. I tried gluten just to test my theory and I've had such a small reaction I wonder if its truly celiac.

Should I base my diagnosis on a one time glutening?

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Really, the bottom line is: Does going gluten free make you feel better? If the answer is yes, then you can call it non celiac gluten intolerance and call it a diagnosis. I'm holding out for an endoscope because I want to know if there is any damage. It sounds like from your scope that there was some kind of damage and I know I've heard of the scallops before with celiac (not an expert in this area by a long shot). 

 

With my intolerance issues I've noticed that it's not always a big huge reaction. I'm currently trying to determine if I'm intolerant to red meat. I've had reactions ranging from dry heaves/nausea (first time in a while that I'd had a steak) to a mild stomach ache (leftover steak, hamburger meat). For me, there is no predictability.  

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I thought a biopsy and seeing villi damage= celiac as long as it occurs without giardia or other parasite.  A positive response to the diet backs up the biopsy results.  Problems with dairy happen when the villi are damaged.

 

Have you checked nutrient levels?  I can relate to looking young and yet "falling apart from the inside out.  Do you suffer from anemia or low vitamin D?

 

D

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I was tested positive with out a biopsy. I was going to have a biopsy, But I accidentally missed my appt.But they said I was Celiac so I just went Gluten Free and life is good!! Unless I am accidentally Glutened!! I never do it on purpose !! 

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All of my blood tests have come back as normal. I recently tried gluten to see if I'd get sick, I guess to complete the diagnosis. I am having the worst week I've had in a while. Cramps, gas, nausea, confusion, and fatigue have been nonstop. Lesson learned!!

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So you are going Gluten Free? Sometimes it takes a long time to feel better!! Just think how long you were eating Gluten. You said you have been chasing a disease for years and yet when the suspect you expect a quick healing from not eating Gluten. If you have been sick for years, you cannot expect to recover in weeks. 

Altho I felt better in just a few days, I know I am still not healed! I am hoping all these symptoms I am still having go away soon.

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Yes, I'm completely (to my knowledge) gluten-free. I'm doing well, but am trying to pinpoint another intolerance. Maybe dairy and not just lactose? Anyhow, I'll NEVER try my reaction again with gluten. I'm still recovering from that and it's a week later

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Yea I feel for ya there!! Hope you heal soon! 

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I think you now have decided that going gluten free is in your best interest.  It sounds like your initial "small" reaction to trying gluten turned into a rather large one.  As noted on the path report, there was scalloping which is Hallmark to Celiac Disease.  Did you follow up with your Doctor to review this report?  Is he confident in a Celiac diagnosis?  If you still feel the need for Doctor diagnosis, you would need to begin eating gluten again before blood tests are run.  Removing all dairy first is a good idea.  This is usually a culprit for the newly diagnosed.  You may be able to slowing add it back in after a time.  Soy can also be tough on some people.  If you do start taking things out, add them back slowly so you know what the culprit is. 

 

All the best.

 

Colleen

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My son was just diagnosed celiac after testing negative with 2 separate blood tests but showing villi damage to the intestines. From what I've read here, that's pretty common suggesting you probably do have celiac.

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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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