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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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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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