• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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.

Mariann Are You Out There?
0

4 posts in this topic

Hi Mariann

I was reading you post in the other thread. I posted something new so it wasn't lost in all the others.

You mentioned that your son does not have the gene but is gluten intolerant. Has he had any allergy testing to find this out?

I just started the Irritable Bowel Syndrome diet a few days ago. On this I am eating gluten. Not anything that is considered to be insoluble fiber, but wheat non the less. This would only mean that my gluten consumption is lessened. It's to soon to tell if I feel any different. And if I do feel different, is it the reduction in wheat consumption or is it the total change in how I'm eating, (ie: reduction in fats, vegetable skins, whole wheat etc.?)

Here are my blood work results. Non of the numbers are bad.

Anti-Gliadin IgA 0.7 u/ml

Anti-Gliadin IgG 6.2 u/ml

Anti-Endomysial IgA Negative

Anti-Human Tissue Transglutaminase IgA 1.6 u/ml

Total Serum IgA 215 mg/dl

Gene HLA-DQ2/HLA-DQ8 not detected

If there is still a possibility that I have a gluten intolerance but not celiac I would like to find out. Until I read you last post I thought no gene made it cut and dry.

Thank you for all your information

Robin

0

Share this post


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


Hi Robin,

We were all tested through Enterolab. The gene testing is done through Laboratories at Bonfils and they do not just test for HLA-DQ2 & DQ8, they also check for other genes that cause gluten intolerance. Celiac Disease is the worst form of gluten intolerance. Dr. Fine's tests pick up other levels of gluten intolerance, too.

My son also is seeing a Rheumatologist/Infectious Disease/Immunologist doctor at our local choldren's hospital. He says that based on his test results through Enterolab he doesn't want to rule out Celiac Disease just becasue he doesn't have the gene. He said that we just don't know enough about the disease to say for sure that those two genetic markers are the only way you can have celiac disease.

My opinion is that if you feel better gluten free, then eat gluten free. I tested negative on all the conventional tests, but positive on Enterolab tests. Since I had been off and on gluten free for a while a few times, I am pretty sure that messed with my results of the blood tests and biopsy. I feel much better gluten free and I feel worse when I have a gluten accident. So whether we are called Celiac or gluten intolerant, it doesn't matter to me. We will eat gluten free and be healthier for it.

I hope you do alright on the new diet you are starting. You may not be Celiac. It is hard to tell. But if you start having problems please conscider further testing.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Thanks Mariann,

I'm going to keep a posible gluten intolerance in the back of my mind as we try this new diet. I am actually looking to take note what items we are eating say gluten free for future referance. I know my daughter had a soy pudding and a glass of soy smoothie and then had diarrhae a couple hours later. This is going to be a very long process.

I'm going for my endoscopy on may 11. I don't think with my blood work results the doctor is going to want to take a biopsy any more but I havn't asked her yet. I know she is going to be looking for reasons for my heartburn and swallowing problems. I think they are all related.

Thanks again for all your help

Robin

PS Do you live in Connecticut? I took my daughter to Dr. Hyams at Chaldrens' satalite office in Avon.

0

Share this post


Link to post
Share on other sites

Hi Robin,

It is good that you are taking notes on what you are eating. Your daughter might have a problem with soy. Keep an eye on it. One out of three of my children is also intolerant to soy. He can handle it in small amounts (like a few pretzels made with soy flour or some candy with soy lecithin), but more than one serving of soy milk or soy pudding and he is rolling on the floor in pain from the stomachache.

We live in Central California. My children see a Pediatric GI by the name of Dr. Gugig at the Children's Hostpital of Central California (formerly Valley Children's Hospital).

I hope you all do well with the diet.

God bless,

Mariann

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
      106,783
    • Total Posts
      932,395
  • Member Statistics

    • Total Members
      64,259
    • Most Online
      3,093

    Newest Member
    BFerris
    Joined
  • Popular Now

  • Topics

  • Posts

    • While informative.....you just responded to a post from 10 years ago.....
    • The year to recover?  It seems pretty standard around here despite some literature  stating it only takes months for villi to recover.  That may be true, but most celiacs have systemic issues.  Neurological issues are usually the last to resolve, if at all.   And let's not forget that the gluten-free diet has a steep learning curve that can delay healing.   I have read sites that promote a Whole Foods diet without gluten in an attempt to calm down inflammation or improve an autoimmune disorder.  It works for some but not all, but it is certainly worth considering.  For me, I was undiagnosed for years like so many celiacs.   I also have Hashi's which was diagnosed 20 years ago.  Since going gluten-free, after my celiac disease diagnosis, my thyroid has shrunk and my nodules are gone.  However, this past winter, I had a tooth infection, the flu, a cold and now my thyroid antibodies are high again.  I also developed autoimmune hives (like clockwork, they appear at 3:00 pm) as a result (I think).  My immune system is constantly running on high alert.  I have allergies to so many things.  But....what is a girl to do? Beside a cocktail of antihistamines, I  move forward.  I am "healthy".  I can still ride my bike, swim and run.  Maybe not as fast (who am I kidding...not fast at all) as when I was younger in my 30 and 40's.  I have Type 2 diabetes despite being thin.  Like celiac disease, diabetes is genetic.   Read the Newbie 101 under coping.  Make sure everything is gluten free.  you would be surprised at hidden sources or dealing with cross contamination.  I know your family has celiac disease, but unless you walk the walk daily, you do not get it.  But...maybe you do!  
    • Does he run a lot? On hard ground? My ferritin started at 74 and is now 20. My rbc count was normal but showed mild anemia after an 18 hour fast.   I initially also thought it might be due to malabsorption, and it may be, although my gut doesn't show a ton of damage. Coincidentally I started running around  all of this, with A 6 month break in between, and have also recently read that Runners Who log a lot of miles generally are pretty low on ferritin if they don't supplement.  I only do between 6-15 Miles per week.  I eAt a mixed green salad about 5 times a week, red meat a couple times a week, and then a lot of other high iron foods.  lamb stew is a tremendous source of iron, as well as mussels. I am a big fan of garden lights chocolate zucchini muffins as well each mini muffin contains 20% of the daily value.  I Like to eat Two for breakfast with my coffee.  if he stopped eating gluten about a month ago you might still be able to get the blood test done. I'm sure you have read by now that you need to be eating gluten to be tested.  antibody start falling Right away but for some people it takes a long time.   I'm not a doctor but I would think that if you have enough damage to mal absorb iron then it would take a lot longer than just 4 weeks for you to  fix that kind of damage And reabsorb it again.    did they order a total iron binding capacity?  and was the iron panel done while fasting? You don't really need to fast for a ferritin but serum Iron can easily be elevated With food.  Although symptoms vary depending on the individual I have read quite a bit online that When ferritin drops below 40 people can start getting symptomaTic.  so you are likely correct that his feeling better is related to his ferritin level increasing.  giving up gluten means giving up certain nutrients as well. So if he's already vegetarian he needs to really pay close attention to what nutrients he might be missing in his diet now if he's giving up whole grains.  
    • Thank you! I will look into it! 
    • You would honestly think that after you body goes nuts attacking your insides trying to kill the gluten after 2 days of food poisoning yourself with it the damn antibodies would show up in insane levels in your blood Life is not that easy though.
  • Upcoming Events