Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

Question About Antibody For Celiac Disease And Diagnosis
0

11 posts in this topic

Hello - I am a college student and last year I had issues with ongoing fatigue and general upset stomach, etc. I was also very iron deficient as well as deficient in many other vitamins even though I have always been very conscious to eat a lot of vegetables and to eat healthfully. Also, in the midst of this ongoing health kick, I had been paying attention to eating a lot of whole weat and grains, something in retrospect I realized I never mentioned to my doctors. The school health office refered me to a G.I. specialist, who told me that I did have the antibody for Celiac disease. We then scheduled the endoscopy and small bowel biopsy, which was a month or two off, and in the meantime, I consciously and unconsciously cut back a lot on eating obvious sources of wheat, mostly because it seemed silly to eat a lot of wheat when it was possible that I was allergic to it. Once the results from the biopsy came back, I was told that I did not, in fact, have Celiac disease, even though through casual conversation with nurses I know and with people who have Celiac disease, I had heard that if you have the antibody for it, then you definitely have the disease.

Now it is about a year later, and I have been eating healthfully, including eating wheat, since I was told I had no allergy to it, and I am having the same debillatating symptoms of extreme fatigue and stomach upset and cramping. Being a student, I also have thousands of dollars of medical debt from all the doctors I went to last year, and can't afford to go back.

My question is, if there are any doctors who read this post - is it possible for me to actually have celiac disease, even though the biopsies didn't show anything, since I did have the antibody? Is there a simple test I can go to a primary care physician and ask for without going through the whole expensive process again with a rushed G.I. specialist?

Thank you

0

Share this post


Link to post
Share on other sites


Ads by Google:

I'm not a doctor but to answer your question...yes, you can have Celiac even with a negative biopsy. The fact that you cut alot of gluten out of your diet would affect the outcome of any tests. I dont know which antibody test you had that was high but it means you either have Celiac or a gluten intolerance. Basically the same thing but only Celiac causes damage to vili. Either way you should be on a gluten free diet. Not just avoiding wheat but ALL gluten grains. If you would like to redo bloodtests you can ask them to run the Celiac Panel. Make sure they order the full panel. You should keep eating regular amounts of gluten daily if you plan on retesting.

In my opinion and since you've stated you are in debt from previous doctor visits...why not just go on the diet? You've already had a positive bloodtest and going back on gluten has gotten you sick again so I'd say just get on the diet and be healthy. :)

0

Share this post


Link to post
Share on other sites

I agree with what Rachel said... ditto

0

Share this post


Link to post
Share on other sites

i have 3 kids with celiac. two did not show damage with their biopsies, and the 3rd did not even have a biopsy.

christine

0

Share this post


Link to post
Share on other sites
i have 3 kids with celiac. two did not show damage with their biopsies, and the 3rd did not even have a biopsy.

christine

that kind of ties back to my question though - how do you know that they all have celiac disease? did the doctor say that they definitely have it? the reason i'm looking for second opinions with me is because my doctor told me after my bloodwork that i had the antibody for celiac disease and that that was probably the reason for my problems. they did the endoscopy, etc. and on the follow-up apptmt they said no, i do not have it because they didn't find any 'sprues'? So my question was basically whether (and how) i should get a second opinion as to whether I have the actual disease, because, being a college student and all, eating as healthfully as I do is really expensive in the first place, but a gluten free diet would be way more expensive and I can't really afford it unless a definite diagnosis says I have this disease, and this is what I can and can not eat. Otherwise, I'm back to the beginning again...

0

Share this post


Link to post
Share on other sites




Kari, the diet does not have to be expensive. It's only expensive if you are trying to replace all of your gluten foods.

The Celiac Dr. that spoke at our support group meeting said that technically Celiac is the blunting of the villi, but if you have the positive antibodies, assuming they did the EMA and tTg, then you've got Celiac. The biopsy can only confirm a dx of Celiac. it cannot rule it out if it is negative. There is always the chance that the biopsy can miss damage, or you haven't been consuming enough gluten for damage to be visible (may be very sporadic) or may be in early stages of Celiac, which many of the experts are still not in agreement as to at what point does it go from gluten intolerance to celiac.

Ultimately the BEST diagnostic tool is dietary response. How does your body respond on the gluten free diet? If your health begins to improve you are most Definitely gluten intolerant. And in my book, gluten intolerance is the same thing as Celiac. The treatment is the same.

0

Share this post


Link to post
Share on other sites

my children had raised tissue transglutaminase levels. tTg is pretty specific for celiac disease. according to the test my children had done, .7 is normal. one of my kids had a level of 18.?? and another had a level of 22.?? i don't know the other one's level. get a copy of your blood test so you can tell what test was actually done by your doctor. and endoscope can only get into the small intestine about 6 ft. that leaves a whole lot of intestine that they can't reach to biopsy, and celiac can be patchy.

christine

0

Share this post


Link to post
Share on other sites
my children had raised tissue transglutaminase levels. tTg is pretty specific for celiac disease. according to the test my children had done, .7 is normal. one of my kids had a level of 18.?? and another had a level of 22.?? i don't know the other one's level. get a copy of your blood test so you can tell what test was actually done by your doctor. and endoscope can only get into the small intestine about 6 ft. that leaves a whole lot of intestine that they can't reach to biopsy, and celiac can be patchy.

christine

all new things that i hadn't heard before - seems when you go to the doctor these days, they're in such a hurry and they barely give you the chance to ask questions, let alone answer them for you. thank you for the responses, i guess i'll continue to do my research. I think maybe part of the reason I was getting so sick sometimes is because I'm also a vegetarian. I'm not hugely strict about it, I just don't like meat at all, so I don't eat any of it and never have, but I still eat dairy, eggs, etc. so my diet was always basically all fruits, vegetables, and grains, though I noticed that even something as simple as switching from my every day dinner of vegetables with pasta over to vegetables with rice made a huge difference in my energy level. So I guess I'll just try to substitute rice and rice products in place of the bread products I was eating?

0

Share this post


Link to post
Share on other sites

stick with fresh fruits and veggies, potatoes and rice... corn chips, corn thins, rice cakes, nuts, and alternative grains like quinoa, and sorghum. There is so much you can do with these basics... Are you lacto ovo vegetarian or vegan? If you eat dairy and eggs that opens up a whole bunch of other options, but if you don't eat dairy and eggs that is ok too... there are ways! For the longest time when I was a poor massage therapy student, I lived on rice and beans (dried beans at that!) and popcorn! (and I wasn't even gluten-free then) Add some spinach and other veggies to that and you've got a fairly well rounded diet. I'm sure other's on this forum have some great ideas for vegetarian meals that are gluten-free on a budget!

0

Share this post


Link to post
Share on other sites
Hello - I am a college student and last year I had issues with ongoing fatigue and general upset stomach, etc. I was also very iron deficient as well as deficient in many other vitamins even though I have always been very conscious to eat a lot of vegetables and to eat healthfully. Also, in the midst of this ongoing health kick, I had been paying attention to eating a lot of whole weat and grains, something in retrospect I realized I never mentioned to my doctors. The school health office refered me to a G.I. specialist, who told me that I did have the antibody for Celiac disease. We then scheduled the endoscopy and small bowel biopsy, which was a month or two off, and in the meantime, I consciously and unconsciously cut back a lot on eating obvious sources of wheat, mostly because it seemed silly to eat a lot of wheat when it was possible that I was allergic to it. Once the results from the biopsy came back, I was told that I did not, in fact, have Celiac disease, even though through casual conversation with nurses I know and with people who have Celiac disease, I had heard that if you have the antibody for it, then you definitely have the disease.

Now it is about a year later, and I have been eating healthfully, including eating wheat, since I was told I had no allergy to it, and I am having the same debillatating symptoms of extreme fatigue and stomach upset and cramping. Being a student, I also have thousands of dollars of medical debt from all the doctors I went to last year, and can't afford to go back.

My question is, if there are any doctors who read this post - is it possible for me to actually have celiac disease, even though the biopsies didn't show anything, since I did have the antibody? Is there a simple test I can go to a primary care physician and ask for without going through the whole expensive process again with a rushed G.I. specialist?

Thank you

Kari....While a doctor goes to medical school and learns a little about a lot of things, no doctor knows about ALL things. Therefore, be wary of any doctor who tells you you do not have celiac despite having the antibodies. Do lots of your own research....for about $30 you can get 3 very good books on celiac from Amazon: Dangerous Grains, Against the Grain, and Wheat Free Worry Free. All very very informative about celiac and gluten in general. Wheat Free Worry Free has a chapter written by a doctor (who now specializes in celiac) explaining why doctors rarely diagnose celiac correctly. Very enlightening reading, to say the least.

I had a blood test for celiac about 5 years ago....came out fine. I got the test because my mom is a diagnosed celiac, and I had been having all sorts of digestive symptoms forever. So I thought I'd get checked out, it was negative (although I've been told it was an incomplete test...didn't test for enough things), and for 5 more years I ate wheat moderately all while having more and more symptoms. After I found this site in November, and learned about Enterolab's stool testing method of diagnosing, it all made great sense and I decided it was worth it to spend $350 for their full panel, which included a casein test and a gene test. The results didn't surpise me, really. I had the celiac gene plus a gluten sensitivity gene, sensitivity to casein, and antibody reactions onthe tga and ttg tests. So now I know, and I found out all on my own with no doctor involvement. Why pay them for tests that are often inconclusive? Beyond finding out, the solution is to not eat gluten.

For yourself, if you don't want to do the full panel, you could do the gene test of $149 and find out about that. And most important of all, do the diet very seriously for a month and see how you feel. The diet is the real way to find out. And there is no danger at all to doing the diet, either....unlike taking drugs for a condition would be. Actually, eating the gluten free diet is a very healthy thing to do!

0

Share this post


Link to post
Share on other sites

I keep coming up with more questions, questions, questions.... everything you all have said has made sense - now - since I have not had an official medical diagnosis anywhere in my records, and I don't even have a regular primary care physician that I have seen for long and know well - when I go to doctors, fill prescriptions, etc. etc., when they ask about medical history and if you have any allergies to any medications, etc., what do I tell them? I don't want to sound like some self-diagnosing hypochondriac, but I do have regular meds (for ADD etc) that I take on a regular basis and when they ask if I have allergies, I say no. Usually when I see a new doctor they ask if I have any allergies, I say no. What would be the appropriate response and how would I deal with it?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,418
    • Total Posts
      917,668
  • Topics

  • Posts

    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,550
    • Most Online
      1,763

    Newest Member
    Tam Tam
    Joined