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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.

Could It Be Celiacs?
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3 posts in this topic

Hello:

My name is Amanda. I'm so glad I found this site. Recently I've been going through a bought of extreme stress... Anyway, even more scarier is my health, which looking back now are issues I've had my whole life. I haven't had my period since March so of course I went to the gyno and he found a mass on my ovaries (not cancerous). However he said some of my symptoms couldn't be cause my the mass and suggested that I may have Celiacs and told me to find a good gastro. Here are my symptoms: canker soars (had my whole life) trouble gaining weight (I've had my whole life) tingling in my hands and feet, odd rashes that are extremely itchy on my elbows (I've had my whole life on and off), headaches (I've had my whole life), either I'm constipated so bad I have to take massive amounts of laxatives to go, or I have diarrhea so bad I can't stay out of the bathroom... I've always had irregular "movements" but the past few months its been so bad. I'm in my twenties and I've actually gone in my sleep and in my pants at work while I was running to the bathroom (how embarrassing). I notice the enamel on my teeth is starting to wear away a little bit, my belly is so bloated it looks like in pregnant but I can rarely release anything, when I do it is so foul I have to leave the room. I've lost 14 pounds since March. After I do go to the bathroom I'm so fatigued and exhausted all I can do is lay down for a couple hours... When I go through the spells of diarrhea I can't seem to hold any food in my system and its like water when I go and the color of clay. I'm constantly exhausted lately its awful... I either have no appetite at all or can't stop eating because I'm soooo hungry! I just feel so frail! I've never really been diagnosed with any sort of disease before besides anemia. I also am so irritable and have such bad mood swings lately, sometimes all I can do is cry and I notice I lose my patience with my daughters so much easier lately. Sometimes all I can do is cry. I am so fed up I look anorexic and like a little boy I am so skinny and I am in my mid twenties with two babies. I also get nauseated after I eat. My husband noticed a huge difference in me too, especially my weight. I might also add I have a neural tube defect in my spine (which my doc assured me is not related to these symptoms). Since he suggested Celiacs I've done a bit of research and it seems a lot of the symptoms at there... However they have come and gone my entire life it just seems very prominent now. I wanted to get some feedback from someone who actually has Celiacs Disease and see if they an relate at all and try and figure out if its possible and worth going to get tested. Please excuse all of the typos I am on my phone!

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welcome  :)

 

based on what you wrote, I think you should definitely get yourself tested!  remember for testing to be valid, you MUST continue to eat gluten until all testing is complete.  first you should request a complete celiac panel, which consists of:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you produce enough iga antibodies to validate your other iga results

 

you should be able to request this test through your PCP before you even go to the GI.  

 

check out this link:

http://www.cureceliacdisease.org/archives/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis

 

anemia is related to celiac.

 

go get yourself tested, and remember to continue to eat gluten until ALL testing is complete.  also remember to request copies of all test results, so that you can review them too.

 

good luck!

Hello:

My name is Amanda. I'm so glad I found this site. Recently I've been going through a bought of extreme stress... Anyway, even more scarier is my health, which looking back now are issues I've had my whole life. I haven't had my period since March so of course I went to the gyno and he found a mass on my ovaries (not cancerous). However he said some of my symptoms couldn't be cause my the mass and suggested that I may have Celiacs and told me to find a good gastro. Here are my symptoms: canker soars (had my whole life) trouble gaining weight (I've had my whole life) tingling in my hands and feet, odd rashes that are extremely itchy on my elbows (I've had my whole life on and off), headaches (I've had my whole life), either I'm constipated so bad I have to take massive amounts of laxatives to go, or I have diarrhea so bad I can't stay out of the bathroom... I've always had irregular "movements" but the past few months its been so bad. I'm in my twenties and I've actually gone in my sleep and in my pants at work while I was running to the bathroom (how embarrassing). I notice the enamel on my teeth is starting to wear away a little bit, my belly is so bloated it looks like in pregnant but I can rarely release anything, when I do it is so foul I have to leave the room. I've lost 14 pounds since March. After I do go to the bathroom I'm so fatigued and exhausted all I can do is lay down for a couple hours... When I go through the spells of diarrhea I can't seem to hold any food in my system and its like water when I go and the color of clay. I'm constantly exhausted lately its awful... I either have no appetite at all or can't stop eating because I'm soooo hungry! I just feel so frail! I've never really been diagnosed with any sort of disease before besides anemia. I also am so irritable and have such bad mood swings lately, sometimes all I can do is cry and I notice I lose my patience with my daughters so much easier lately. Sometimes all I can do is cry. I am so fed up I look anorexic and like a little boy I am so skinny and I am in my mid twenties with two babies. I also get nauseated after I eat. My husband noticed a huge difference in me too, especially my weight. I might also add I have a neural tube defect in my spine (which my doc assured me is not related to these symptoms). Since he suggested Celiacs I've done a bit of research and it seems a lot of the symptoms at there... However they have come and gone my entire life it just seems very prominent now. I wanted to get some feedback from someone who actually has Celiacs Disease and see if they an relate at all and try and figure out if its possible and worth going to get tested. Please excuse all of the typos I am on my phone!

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Oh yes! Your symptoms definitely fit. They are actually quite classic symptoms. I think it wouldbe worth your while to get tested. Plus there is a genetic link to celiac so you will want to have your kids tested, and repeat the testing every few years if they continue to eat gluten.

The celiac panel is:

DGP IgA and DGP IgG

TTG IgA and tTG IgG

Total serum IgA

EMA IgA

AGA IgA and AGA IgG (these are older and less frequently used tests)

You must be eating gluten in the weeks prior to testing for an accurate test. If all tests are negative, it is possible that you have Non-Celiac Gluten Intolerance/sensitivity (NCGI) which is also treated with a gluten-free diet.

You might want to request nutrients be checked as celiacs are usually low in ferritin, iron, potassium, calcium, D and B's. Thyroid problems are in more than 1/10 celiacs too so you might want to check TSH (should be near a 1),freeT3 and free T4 (should be in the 50-75% range of your labs normal reference range), and TPO Ab.

When you go to the doctor, bring your list of symptoms and examples of how it affects your life. Everyday examples seem to help doctors understand our symptoms better.

Best wishes. I hope you find answers and feel well soon.

Edited to says "oops", P of P was faster....ditto everything she said. :)

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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
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