• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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

Recommended Posts

the2ofus    0

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

Share this post


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


gf4life    5

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

Share this post


Link to post
Share on other sites
the2ofus    0

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.

Share this post


Link to post
Share on other sites
gf4life    5

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

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
      107,906
    • Total Posts
      938,594
  • Member Statistics

    • Total Members
      65,822
    • Most Online
      3,093

    Newest Member
    blueides
    Joined
  • Popular Now

  • Topics

  • Posts

    • Not sure what you mean by "celiac growth spurt." How was the celiac diagnosis arrived at?  Based only on symptoms? Genetic testing? Endoscopy? Are you making sure that your daughter is strictly following a gluten free diet?
    • To me it sounded like he thought frying corn chips would contaminate the oil .     I never eat there.  I know a few years ago, the one by me was pretty Celiac friendly.  Maybe you had to have grilled wings?  They would get a clean bowl to toss them for Celiacs.  I don't know because I wasn't interested.  Maybe it depends on the store?  I would imagine one in Portland or Seattle or Denver , might be more aware than one in Omaha?  But even that depends.....
    • I would not eat there either for many reasons listed already. But what is wrong with yeast? *quote from op, not kareng 
    • Hi,  I just wanted to add some insight to my question on the test results.  I am 58 experiencing stress fractors to the foot without any extra activity.  I have osteoporosis and the thought process of the doctors is that I have another cause besides age for the osteoporosis.  The foot is not healing after 11 weeks in a boot.  Ortho sent me to Endo.  Endo did blood test.  Hormones normal and received the below results on Celiac.  I have had osteoarthritis since 21, Was diagnosised at 29 as being allergic to wheat, symptom was I lost my voice after having my first child.  Had my second at 32 and magic I could eat wheat again and not lose my voice.  Last year I was tested autoimmune because of lung issues; MAC and bronchiaestasis.  IGA was high then but no further testing.  I do not have digestion issues except lactose intolerant.  I do have low values on vitamin D. I do not go back to Endo until 2 weeks from now.  My sister is fighting her own issues which is pointing to autoimmune but drs. have figured her out yet.  My mom as MS and her mom died of ALS, Dad's side had Lupus.  Any thoughts?
    • I am sorry to hear you are having these problems with airborne particle sensitivity. My initial symptoms were neurological (extreme fatigue and visual migraines) and dermatological.  I had "eczema" from the base of my skull to my bra-line that itched and burned terribly.   I do not have Celiac disease but I do have gluten intolerance.  I have remained strictly gluten free for 6.5 years now (except for occ'l "glutenizing" by someone trying hard to be nice and feed me something they believe is gluten-free).  The first year I was gluten free I continued to have this rash in a smaller area but it would flare in the hairline.  We found gluten free oats in a product we used and cutting out oats almost completely alleviated my skin reaction.  My doctor informed me that the protein in oats is similar to other grains containing gluten so I may be reacting to it even though it is not actually gluten.   I now use only gluten free hair products as I have long hair and I figure that even though it is external hair blows in my face and I push it away or I may touch my hair to push it out of the way when eating or socializing.  Everyone is different as far as items they tolerate but I have had good results with Griffin Remedy (available online at their website), Aura Cacia (although they do use Cetryl Alcohol which I used to try to avoid for other reasons), and Avalon Organics Cucumber gluten-free shampoo and conditioner.  You probably already use gluten-free facial care products and lip glosses as you sound knowledgeable about Celiac and gluten-free issues. I don't buy any of my gluten free products from a store where they are shelved with the regular baking products.  (I would be OK with washing an item if it were plastic packaged but many are in cardboard so I personally feel the risk of contamination goes up).  I am blessed to be married to a man who is open minded and glad to see me feeling better so there is nothing with gluten in our home (in food products).  My diet is similar to the person who stated, "Solid advice" above.  Finally, if I am going out with friends I take food along with me except for a very few establishments where I am sure that I am safe.  I also bring a bottle of water or iced tea, and even a napkin, as some people preparing food may be touching something with gluten and then handling glasses for beverages or setting tables without being fully aware (as was mentioned above pertaining to the gluten-free oats).  I also found with the gluten-free diet fad that I have to be vigilant in asking about preparation in unknown venues (i.e. We were on a ski vacation and I was excited to see gluten-free items on the menu BUT the preparation area was not segregated, nor was the cookware.  I was able to explain my needs and accommodations were made.  Hopefully, the owner were more educated regarding the needs of people with gluten sensitivities vs. dietary preference and made some changes in their practices.) I hope you find the piece to your puzzle that works for you!    
  • Upcoming Events