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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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    • 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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