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

Cd Vs. Gluten Intolerance
0

7 posts in this topic

All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

I didn't have any gluten problems until early this year when I had some skin/scalp problems show up. Going gluten-free has resolved everything for me so I took my daughters in for testing and put them on the gluten-free diet. which resolved all the gas pain/indigestion my oldest daughter had.

From what I've read on this forum and elsewhere, once a celiac, always a celiac, and you need to be gluten-free for the rest of your life. However, if you don't test positive for celiac, might you be able to tolerate gluten at some point in your life?

Thanks so much for any input.

Laura

0

Share this post


Link to post
Share on other sites


Ads by Google:

I'm not an expert, but, from what I understand at this point is gluten intolerance is for life too... it also is an autoimmune disorder, it just hasn't caused damage to the intestines.

Someone please correct me if I'm wrong - I'm basing this on what the "nutritional specialist" told me as in her opinion my son falls in this category (GI vs. celiac disease).

0

Share this post


Link to post
Share on other sites
All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

First, going gluten free would alter test results so were you gluten free at the time of testing and well before?

Second, the IgG testing is not enough to rule out celiac. You have to get a complete panel done. The fact is that the IgG is the least accurate of the tests.

Third, even with gluten intolerance you need to be gluten free for life...there has been debate about whether gluten intolerance can turn into celiac if the diet is not followed. I think it is definitely possible.

0

Share this post


Link to post
Share on other sites
All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

I didn't have any gluten problems until early this year when I had some skin/scalp problems show up. Going gluten-free has resolved everything for me so I took my daughters in for testing and put them on the gluten-free diet. which resolved all the gas pain/indigestion my oldest daughter had.

From what I've read on this forum and elsewhere, once a celiac, always a celiac, and you need to be gluten-free for the rest of your life. However, if you don't test positive for celiac, might you be able to tolerate gluten at some point in your life?

Thanks so much for any input.

Laura

<{POST_SNAPBACK}>

I am also gluten intolerant. My GI doc ( who started me on a gluten-free diet ) is now insisting that I can eat gluten (and dairy) because my gene test was negative,

I had no damage to the villi, and my antibody came down. Every time I tried either of these food groups I get sick. I think that he thinks that it is all in my head!

One of the worst things that happen is a migraine headache and they terrify me. There is no way that I am going off the gluten-free diet, not for him, not for anyone. I don't know how to advise you except try it after a while and see how you feel. I think that after being gluten-free you will probably be more sensitive than before.

0

Share this post


Link to post
Share on other sites

I wonder if some of the confusion about out growing is realted to WHEAT ALERGY which you can out grow, or pick up later in life... but thats not an autimune disorder....

0

Share this post


Link to post
Share on other sites




I have a non-celiac disease gluten sensitivity, too. Based on the research I've done, this is genetic just like celiac disease, and it has some equally dire diseases related to it even though the intestine may not be among them. Being a genetic disease, we're stuck with our genes for life so while some symtoms may change and appear to allow you to eat gluten, that doesn't mean it's wise.

You may want to have a DNA test done to see where your genes may lead you. I had mine done at Enterolab (gene test alone - $150) since they test for a few more genetic variations besides the two for celiac disease (HLA-DQ2,8). Once you get your results, you can Google them if you want to see what diseases pop up from the search - if you have any of the non-celiac disease gluten sensitivity genes, you will find the results very sobering. I'm of the opinion so far that non-celiac disease gs is equally as dangerous as regular celiac disease; it just affects different parts of the body, particularly neuro related things. I also recommend reading "Dangerous Grains" by Braly for its coverage of non-celiac disease gs.

Bottom line is if your body feels better being gluten-free (my case and sounds like yours, too), it's probably trying it's best to tell you something. Probably worth a listen.

George

0

Share this post


Link to post
Share on other sites

Thanks so much for all of the responses.

Yes, we were on gluten when the tests were done -- I did take my daughters off after the blood was drawn, assuming that gluten was going to be a problem and I didn't want to wait for the results to come back. In addition to the ELISA test, we had the tTG, which was negative.

My intuition is that this is going to be a lifelong diet for us because they have had their symptoms all of their short lives (while my own had started in mid-life). They also have food reactions to dairy, beef, sugars, eggs, so their diet has become quite restrictive. "Lifelong" when you're 10, though, is more overwhelming than when you are in your 40s! But they hear random stories from people who had wheat allergies as children and outgrew them, so I thought I would ask.

I did tell them that we need to think of it as "today we will not have any gluten" and the future will resolve itself. We are finding some fun things to eat so it makes it easier.

Thanks again,

Laura

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
      104,095
    • Total Posts
      920,333
  • Topics

  • Posts

    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,132
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined