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

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:

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
      103,636
    • Total Posts
      918,422
  • Topics

  • Posts

    • Celiac Night Vision
      Scotomas returned for the 7th year on the 24th February despite liver pâté and have varied since with 3 brief gaps. I have always had migraine, latterly occurring more than once a month, usually of basilar or retinal type with aura (but no headache) lasting less than 5 minutes. A recent bout looked like a TIA and led to a CT scan which revealed clear major vessels but old cerebellar infarcts, so maybe migraine accounts for poor memory too. The scotomas are very different from migraine eye symptoms - stationary, irregular in shape and lasting hours. I think food is excluded as the cause but seasonality, gaps, variation with wind direction and rain mean that pollen is still a possibility. Scott Adams did a marvellous thing founding this site so celiacs could enlighten each other. Please post if you have anything like these scotomas!
    • healthy bread recipe?
      Eat what you eat at lunch or dinner.  I am happy with a fried hamburger patty, fish, or chicken (I know it needs to be fresh or frozen for the histamine diet).  Yes, I eat veggies for breakfast!   Wanted to add that I was glutened in July (GI ordered follow-up antibodies testing and it was high)  and it took me 3 months to recover.  Picked up a histamine intolerance and became lactose intolerant again.  Luckily, when I healed, the histamine thing went away (or  Diminished ) and the lactose intolerance resolved.    I was getting hives, rashes and itching (not DH), vomiting, etc.  So, her intolerances may be just temorary!  
    • Could this be celiac or is it really just IBS?
      Are you sure you had the complete celiac panel?  Here are the tests:   -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA  -total serum IgA and IgG (control test)     -endoscopic biopsy - make sure at least 6 samples are taken   VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.     (Source: NVSMOM -- 😊)   Here is more information from a reputable site (and not just info from a crazy cyclist on the Internet!):   http://www.cureceliacdisease.org/screening/   IBS, in my opinion, means "I Be Stumped!"  It is just a cop out!  So is the "stressed" thing.     I also had my GB out too.   It was a non-functioning (0% per HIDA scan), no stones, and rotting.     You seem to have many celiac disease symptoms.  Verify (obtain copies of your lab tests) to see if you got the complete panel. You might just have had the TTG IGA and TTG IGG tests.  Good for screening but it does not catch all celiacs.  My TTG tests are always negative even on follow-up testing.  The DGP test catches a positive for me.  My biopsies revealed moderate to severe damage.  If my celiac-savvy GI did not order the complete panel, my celiac disease diagnosis would never have been caught.   if celiac disease is really ruled out, research mast cell disorders.  The flushing and GI upset sound familiar!  You can have more than one thing going on!  But I would put my money on celiac disease!            
    • tightness in throat after eating gluten?
      I've noticed that if I accidentally eat gluten, for the next few days I have this tightness in my throat. It feels like my throat is closing. It's not constant, but comes and goes throughout the next 1-3 days. My hands have also been itchy. Is this a normal symptom for celiac or gluten intolerance, or could it possibly be an allergy? I haven't been tested or diagnosed with celiac or anything yet, so I'm still not entirely sure. All I know is that gluten makes me very sick.. But especially with the itchiness and tight throat.. I'm allergic to acetaminophen and my reaction is similar, so it just makes me wonder. What do you think?
    • Diagnosis and Test Results
      I am sorry that you are sick!  😔.  I think you need to find out which celiac antibody tests were given.  Often just the TTG Is ordered for initial screening.  This test catches most, but not all celiacs (like me!)   You also need to see if they gave you the igA deficency test too.   Here are the tests:   -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA  -total serum IgA and IgG (control test)   -endoscopic biopsy - make sure at least 6 samples are taken   VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.     (Source: NVSMOM -- 😊)     http://www.cureceliacdisease.org/screening/ You can go gluten free, but knowing if you have an autoimmune disease is helpful.  celiac disease is genetic (you have the genes, but so does 30% of the population and that's why the gene test is used only to exclude celiac disease and not diagnose it).   All family members should be tested even if they are symptom free.   I hope you figure it out and I am sorry that you had such a horrible experience.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • 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
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,727
    • Most Online
      1,763

    Newest Member
    Kal
    Joined