• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

What Do You Think?

Rate this topic

Recommended Posts

Hello all, I am obviously new here. I decided last night to do some research on this topic and was really surprised. I have not been 'officially' diagnosed, but I guess that is just a formality at this point. I guess a history would be helpful:

After the birth of my 2nd (and last) child almost 4 years ago (at age 31), my body basically fell apart. I suffered with chronic diarrhea and severe headaches for almost a year before going to the GI dr. I was using exederin migraine all that time. I had a colonoscopy, which came back normal. He said it was probably IBS. Ok. Exactly one year later (and with continued symptoms), I had 3 gallbladder attacks and ended up with my gallbladder removed. So of course, the diarrhea worsened. But so had the headaches. We ended up going the headache route and had CT scans, MRI, the works. They did find a meningioma (brain tumor), but it was so small and it such an insignificant location, there's no way that was the problem. I realized on my own the aspirin in the exederin was killing my stomach. Switched to excederin tension (no aspirin). Small improvement there. But after one of my worst flare ups, I lost about 10 lbs (over a couple of months). I can eat anything and never gain a pound. I also can't travel, eat out, leave the house within 2 hours of eating, and never ever know when it will hit. Sometimes immediately, sometimes the next day. Sometimes a food was ok, others it was a disaster. That was the confusing part. I could never find the offending food. In June, my GP did some blood work and decided to run a gluten sensitivity test, almost as an afterthought. When I saw him again a month later, he mentioned that it had showed a "weak positive", but that I could test again and it might be negative. Not really concerned. I basically dismissed it too. Then last night I started researching. I did not know that this disease causes damage to the intestines. I thought if the symptoms were tolerable, no need to go gluten-free. Wow, what an eye-opener this board has been. Every symptom I have is on the list provided on another post. I suspect I also have residual bile salts diarrhea from not having a gallbladder, which is complicating things even more. I never know when, and a simple sip of water can trigger it. I suppose I should be retested. I don't know what he ran to show a positive or negative, but I see that there are 4 different blood tests. Can someone tell me exactly what they are? Whatever I request, he will run it. He is extremely cooperative and does his best to help. I just want to be able to tell him exactly what I want done. Any other thought or suggestions would be wonderful too. Thank you! :(

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Hi there!

First, I just wanted to say that I'm sorry for all of the suffering you've been through these past 4 years. No one deserves to spend that much time in misery. Based on your symptoms, it would definitely be logical to suspect Celiac disease. I'm not sure if you have read this yet or not, but it is believed that in genetically susceptible individuals, the onset of Celiac disease can be triggered by pregnancy (I'm not sure exactly why...it may be the stresses that pregnancy places on the body, or hormone fluctuations...in any case, pregnancy is recognized as a common time for celiac disease onset). So your story really is consistant with what is referred to as "classic" Celiac disease.

As far as the tests go, I don't have a medical degree or anything, but I did attend a recent consensus conference at the National Institute of Health aimed at developing a uniform public health policy regarding screening, testing, diagosis, and treatment of Celiac disease. One of the topics covered was the various serological tests used for diagonsis. There were actually 5 blood tests that were mentioned, including:

AGA-IgG (antigliadin antibodies, IgG class)

AGA-IgA (antigliadin antibodies, IgA class)

EMA-IgA (endomysium antibody, IgA class)

TTG-IgA (tissue transglutaminase antibody, IgA class)

ARA (antireticulin antibody, IgA class)

The researcher who presented on the blood tests concluded that the two tests of the five mentioned above with the best sensitivity and specificity are the EMA-IgA and TTG-IgA. So if you are going to tell your doctor which test to perform, the current research indicates that you should pick one of these two. Regardless of which you pick, you should also tell him to check your total IgA levels because 1 in 300-400 people are IgA deficient. In IgA deficient individuals, both of these tests can produce a false negative (since they measure levels of Ig-A class antibodies).

If the bloodwork does come back positive, it is necessary for you to have an endoscopy performed by a GI doctor so that biopsies of your small intestine can be taken to check for abnormalities consistant with celiac disease. The description of the procedure frightened me when I read it, but doctors typically give an anesthetic that induces a "twilight sleep," so I didn't experience anything more than a slight sore throat.

Anyway, I'm on my way out so I've got to wrap up this post now, but I hope this information helped. Feel free to e-mail me if you have any more questions. I wish you the best of luck in your search for the source of your symptoms.


Share this post

Link to post
Share on other sites

Thank you so much! That is the exact info I needed. I've spent a couple of days now researching the gluten-free diet, just to try and prepare myself for the changes I know will be ahead. I personally have no doubt that this is celiac disease. I vaguely remember my exMIL going through the diarrhea and weight loss for a long time and then finding out that it was celiac disease. Her mother also had it. That has been in the back of my head for a while now. I should have been a little more aggresive investigating it, but like I said-I had no idea the devastation caused by the disease. I thought it was only inconvience. Boy, was I wrong. I'll be calling my dr. Monday to set up one of the sets that you listed. And thank you again!

Share this post

Link to post
Share on other sites

Hello again! I'm hoping Wish will find this again, or maybe someone who can tell me what this means. I went today with the list provided by Wish to get more blood drawn for additional tests (I had no idea what test he had done). Everything tested well within normal limits except the AGA-IgA, and it was only 23 (20-30 indicates a weak positive). He is going to do more testing, including the ones mentioned by Wish (the 2 that are recommended). So does this mean anything to anyone? Or not until I have more info on the other tests? I won't have those back until Friday at the earliest. Thanks for any help you can give!

Share this post

Link to post
Share on other sites

Another test that is needed is Total IgA. Some individuals (as many as 1 in 500) are IgA deficient and do not produce tTG. Apparently is possible to have positive Anti-Gliadin antibodies (IgA) and still be IgA deficient.

Share this post

Link to post
Share on other sites
Ads by Google:

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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Hi Matt,  Thanks for taking the time to reply!  I completely agree haha.  Thanks for the links - I'll give them a read over!  I think it was a mixture of the first time travelling with being gluten-free and the added bonus of the language barrier, it made me dread meal times when usually food is the first thing I think about when travelling to new places! Again, I think the planning element was also a factor, not being able to walk past a nice bakery without walking in - why do most Berlin train stations have bakeries in everyone?!?! THE SMELL!!!  Haha, good excuse! Could have used that in the hotel restaurant (arrived late the first night) and the only avail dish was a dry chicken Caesar salad (literally 3 thin slices of chicken, 5 cherry tomatoes and a plate of lettuce).  I am I'll give the website a look over too - thank you! My app's with my consultant are every 6 months, basically was just sent away with no info/advice given and feeling the struggle now that reality has set in that this is for good!  Hope you are well! 
    • Gluten is a protein smaller then blood,bleach does not kill it as it is not a germ. I would replace scratched pans. baking dishes, tubaware, wooden utensils, colanders, etc. Throw out crumby condiment jars and any non gluten-free spices and condiments. Cast Iron can be saved and some metal utensils by putting in your oven self clean cycle, 500F will destroy the protein. I always tell people easy ways to get started on new cookware, nordicware microwave cook ware, omelette makers, steamers, rice cookers, grilling plates (do not forgot the splatter cover), This way you can have a cheap and easy meals, a new crockpot and use crockpot liners is great for soups, I suggested a combo rice cooker/crockpot/steamer as a great investment. OH if you want a nice clean safe prep area/counter/eating place mat, look up freezer paper/butcher paper. I did a post on where to get it in bulk awhile back. But laying it out is perfects, and makes clean up a breeze. Foil sheets in baking dishes works great for a extra precaution but if you have any with baked on stuff or scratched look at getting new ones. PS took me over  months to start feeling much better. Sometimes the improvement is minor and you have to think back to the worst you had. It does improve but normally big changes are after a year.
      https://www.celiac.com/gluten-free/topic/118842-freezer-paper-for-safe-prep-surface/?tab=comments#comment-979071 https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/  
    • It sounds like your hives resolved.  I had a six month bout with them.  Antihistamines really helped.  My doctors are not sure if Mast Cell or autoimmune is the root cause.  
    • My kid has Raynauds.  It freaks her classmates out.  She wears shoes and wool socks all year round and we live in a warm state.  It is autoimmune.  She manages it by layering, turning up the heat, use lots of blanket throws.   I have Hashimoto’s and celiac disease.  So, having multiple autoimmune issues is common.  
    • Well, you do need to replace some things because they are too porous or damaged to remove gluten.  Things like old wooden spoons, scratched non-stick pans, toaster, colander, sponges, etc.  Honestly, the list is long, so try getting a few celiac books at the library or Amazon.  Consider reading through the Newbie 101 thread under the “Coping section”.    You should see some minor improvement soon.  It does take time to heal.  Most  around here will say it takes a year!  
  • Upcoming Events