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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.

Recently In Hospital And Still Confused
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10 posts in this topic

So I have had GI problems for years and it used to be almost uncontrollable diarrhea like 20 times a day I went through celiac testing multiple times. Three blood tests and a EGD showed blunting but negative biopsies, the doctor said I could just have gastritis. Went on the diet anyway and saw improvement then added gluten back and I have had no problems what so ever. Recently I was in the hospital for rapid heart beat (over 250) short of breath (O2 of 88%). Found to also be anemic with a hemoglobin of 10.4 down from 11.8 six days prior. My iron was a little low 23 ( my lab says 25 is normal) with a normal TIBC normal transferrin and low iron saturation and extremely low ferritin of six. The doctor said I have iron deficient anemia due to malabsorption because I am not a vegetarian and my periods are not extremely heavy and I have never had this problem before. I am a little nervous because I have a history of lymphoma and I am not quite convinced about the celiac. I am a nurse and work on an oncology floor and have asked many doctors about the celiac and they too are not convinced but my hospital doctor swears its malabsorption. Anyone else been diagnosed just based on anemia? The problem with this is, I know iron deficiency anemia presents with anemia of chronic disease which can be present in malabsorption diseases as well as cancers. So I just want to know if anyone else has been diagnosed with totally negative results and been told they have it just based on anemia. Mind you my B12, folate and vit D are all normal.

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Are you aware that untreated celiac disease has been linked to several types of lymphoma?

If they can not find evidence that your cancer has returned and is directly causing the problem, you certainly have several celiac disease red flags. (Note: Everyone has different deficiencies with this disease. My b12 was very low, but my folate, d and iron were fine.)

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I am aware of the correlation with celiac and lymphoma but it was 7 years ago and my GI troubles didn't start until about a year after treatment. I believe mine was hereditary because my cousin had Hodgkin's lymphoma as well. I am just said cause I feel so socially isolated on this diet but I know I am at risk because I have a autoimmune thyroid condition, an autoimmune clotting condition an I am a danish (a ethnicity with a high rate of celiac disease)

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I guess I should be patient because I need to have an entire hematology and gastroenterology workup to determine any other source of bleeding

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But you didn't have totally negative results. You had blunted villi and you now are having issues with malabsorption and anemia. Your GI issues resolved on the diet. You say you aren't having GI issues after adding gluten back in but there are times when people, especially young people, will go through a honeymoon period for a long time before the GI issues appear again. Do get a full work up but after all your celiac related testing is done and then IMHO get back on the diet.

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I am aware of the correlation with celiac and lymphoma but it was 7 years ago and my GI troubles didn't start until about a year after treatment. I believe mine was hereditary because my cousin had Hodgkin's lymphoma as well. I am just said cause I feel so socially isolated on this diet but I know I am at risk because I have a autoimmune thyroid condition, an autoimmune clotting condition an I am a danish (a ethnicity with a high rate of celiac disease)

Hi Donna,

Is the autoimmune clotting condition ITP? If you look around this board you'll find a larger percentage than the general population with this disease. I had it as a teenager myself.

Is the autoimmune thyroid problem Hashimoto's? That's very prevalent in the Celiac community too.

You've mentioned several autoimmune problems. Celiac leads to all kinds of autoimmune issues. Please be careful. You don't want to get worse. Look for a doctor who specializes in Celiac and have him/her look at your test results. I think you might find very different answers than the ones you've been given so far.

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Um, you have

1. Villi blunting, a classic celiac symptom.

2. improvement on the gluten-free diet, good chance that means something about gluten is bad for you right?

3. Resumption of symptoms after returning to eating gluten. Not a cooincidence most likely.

4 Probably have malabsorbtion, classic celiac symptom.

5. Hashimoto's Thyroiditis, unfortunately also an associated AI disease among celiac women.

6. Doctors who don't believe you have celaac, pretty much a guarantee you have celiac! :)

6. Danish, and not the kind you get at a donut store.

You may have other symptoms that you aren't thinking about that can be related to celiac also. Like hair loss, menstrual irregularity, nail ridges, stiff joints, swelling in limbs, facial tics or muscle twitches, muscle cramps or pain, pale complexion, unexplained fatigue, anixety, depression, insomnia, confusion, forgetfullness, loss of balance, bags under eyes, ringing in ears, irritability, general distrust of doctors, :) craving for gluteny foods like bread, pizza, beer etc, hayfever or other allergies, susceptible to colds or flu more than other people, or don't get them as often as other people, weight gain or weight loss, eat a lot but not gain weight, or gain weght for no apparent reason, unable to leap tall buildings :), bad breath, skin rashes, irritable teeth/gums, sinus congestion, dry skin on elbows, knees or other areas, sleepy/tired more than normal, gassy, bloated, constipation, or diahrea, awful stomach upset during presidential debates, stomach ulcers, gastritis, throwing up after eating, staying close to a bathroom for reasons other than the wonderful aroma, spare change of clothes in your office for emergencies, fuzzy vision at times, slow healing of cuts or easy brusing, unexplained fainting or low blood pressure, too much aspirin in your medicine cabinet for a heathy person, lots of Pepto Bismol in your med cabinet or purse, migraines, oh well, you get the idea.

You don't need all these symptoms to have celiac, but any of them can be caused by it and more.

Some light reading:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

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Findin my way.... My clotting condition is lupus anticoagulant which gives me hypercoagulablity. Unfortunately mine with not go away like ITP sometimes does. I also talked with a doctor friend that said iron is absorbed in the duodenum which is were my blunted villi was found. Maybe I should just accept it since every other doctor I have seen thinks that's what I have I just can't seem to convince my GI doctor

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6. Doctors who don't believe you have celaac, pretty much a guarantee you have celiac! :)

Quote of the Month Award should go to Paul :D

Donna - many of us test negative. The villi atrophy with other autoimmune disorders and improved symptoms while gluten free are all strong reasons to remove ALL gluten from your diet.

My daughter was diagnosed Lupus, RA and Fibro as a teen -- I have had severe AI symptoms my entire life -- until I was finally tested for Celiac Disease at 43 none of us even knew what gluten or celiac disease was.

My kids have all removed gluten and have all had some or all of their symptoms resolve - they all have negative blood work and mine was only weakly positive when finally diagnosed by blood along with TOTAL atrophy. Don't wait for your tests to prove you have Celiac Disease. Remove gluten now - the immune responses of this disease can take a very long time to improve, so the sooner the better.

Hang in there :)

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With all due respect to any gastroenterologists in the world who deserve it, from what I have seen and heard most of them have very little knowledge about celiac disease, and these are the ones who should have knowledge. They are all really "up" on ulcerative colitis and Crohn's and any other digestive tract disorder you care to name, especially those requiring colonoscopy :P ) but the day the celiac class was taught (if it was?) they played golf or slept after several days of being on duty (giving them the benefit of the doubt here), and what they will read in their out-of-date textbooks is that it is a failure to thrive disease of early childhood.

Like Lisa, regardless of what the testing says, I believe you have it, and should trial gluten free right now before you damage yourself further, or end up like me with psoriatic arthritis which requires an annual continental migration to get treatment for.

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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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