• 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.

What Kind Of Celiac Am I?
0

10 posts in this topic

I was diagnosed in 2008 by blood tests then confirmed by biopsy. I have celiac disease. I've been gluten free ever since. Initially I was extremely cautious. However over the last 6 months or so I've become a bit more relaxed, and if something 'looked' gluten free at a party I would try it. Amazingly this method worked for me and I never get sick.

About a week ago I screwed up big time while eating sushi. I unknowingly ate a piece with chopped tempura in it. I was expecting the worst but only noticed a canker sore on my lip - no appreciable GI distress.

So here's my question: it appears as if I am a celiac that is somewhat insensitive to gluten (sounds like an oxymoron?). If I get traces of gluten in passing I observe no effect, a little bit of gluten (like that tempura roll) I see mild effects. I suspect, but am not willing to find out, if I had a big bowl of pasta I'd get very sick again.

Does this make any sense given what we understand about celiac disease? I'd appreciate anyone's thoughts on the subject.

Also, does this means it's safe for me to ingest trace amounts of gluten?

0

Share this post


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


Think of it this way, Celiac is an autoimmune disorder, in otherwords when you ingest gluten, your body attacks itself. In doing so it also causes inflamation.

So...no matter how little gluten you are ingesting, and whether you have 'noticeable' side effects you are still causing damage within your body, you are still also causing inflammation...and long term inflammation causes all kinds of problems including cancer.

2

Share this post


Link to post
Share on other sites

I was diagnosed in 2008 by blood tests then confirmed by biopsy. I have celiac disease. I've been gluten free ever since. Initially I was extremely cautious. However over the last 6 months or so I've become a bit more relaxed, and if something 'looked' gluten free at a party I would try it. Amazingly this method worked for me and I never get sick.

About a week ago I screwed up big time while eating sushi. I unknowingly ate a piece with chopped tempura in it. I was expecting the worst but only noticed a canker sore on my lip - no appreciable GI distress.

So here's my question: it appears as if I am a celiac that is somewhat insensitive to gluten (sounds like an oxymoron?). If I get traces of gluten in passing I observe no effect, a little bit of gluten (like that tempura roll) I see mild effects. I suspect, but am not willing to find out, if I had a big bowl of pasta I'd get very sick again.

Does this make any sense given what we understand about celiac disease? I'd appreciate anyone's thoughts on the subject.

Also, does this means it's safe for me to ingest trace amounts of gluten?

Well, I was able to consume enormous amounts of gluten without getting sick at all but because my bloodwork was positive and biopsies indicated my villi were flattened, I have been strictly gluten free for nine months and will not even think of trying gluten. Reason? Even if I do not FEEL sick from gluten, my villi would be seriously damaged and I want to avoid other illnesses. Not only that but consuming gluten could trigger all sorts of things and I do not want to deal with that possibility. Celiac = No Gluten Ever in my world. Not even a teeny bit. I am taking no chances with my health and my future.

However, I can certainly see how it would be tempting if you do not feel ill.

Hopefully this helps to put things into perspective from someone who did not feel sick at all from consuming gluten! :)

3

Share this post


Link to post
Share on other sites

Since 2008 you have been gluten free. I would expect that you are in, what I call remission. For me, it would take repetitive glutenings over an unknown period of time, creating damage, for me to be symptomatic again. Or, built up to the point where I can be aware of a symptom.

But, everyone is different.

1

Share this post


Link to post
Share on other sites

I was diagnosed in 2008 by blood tests then confirmed by biopsy. I have celiac disease. I've been gluten free ever since. Initially I was extremely cautious. However over the last 6 months or so I've become a bit more relaxed, and if something 'looked' gluten free at a party I would try it. Amazingly this method worked for me and I never get sick.

About a week ago I screwed up big time while eating sushi. I unknowingly ate a piece with chopped tempura in it. I was expecting the worst but only noticed a canker sore on my lip - no appreciable GI distress.

So here's my question: it appears as if I am a celiac that is somewhat insensitive to gluten (sounds like an oxymoron?). If I get traces of gluten in passing I observe no effect, a little bit of gluten (like that tempura roll) I see mild effects. I suspect, but am not willing to find out, if I had a big bowl of pasta I'd get very sick again.

Does this make any sense given what we understand about celiac disease? I'd appreciate anyone's thoughts on the subject.

Also, does this means it's safe for me to ingest trace amounts of gluten?

Active celiac disease (continuing to consume gluten) is correlated with many autoimmune diseases (including MS, type 1 diabetes, rheumatoid arthritis, lupus, Hashimoto's thyroiditis, Sjogren's, etc., etc.). So is you don't have any reaction symptoms typicaly associated with celiac, you may continue to damage your intestines enough to let all those gluten antibodies wreck havoc on any number of other organs in your body and cause any of those autoimmune diseases. Of course, if you go to mainstream docs with symptoms of those autoimmune diseases, they will gladly prescribe for you drugs to treat your symptoms, while you continue to eat gluten and continue the damage which caused the autoimmune problems.

Also, many people find that after long periods of abstinence between episodes of gluten consumption, their reaction symptoms are more and more severe. So if you keep having occasional gluten, you may indeed develop traditional (painful) gluten reaction symptoms.

Some of us who were not diagnosed until midlife (after years of misdiagnoses) have all those painful reaction symptoms AND autoimmune diseases. Lucky you for getting diagnosed before you had really serious damage. Stay healthy by abstaining from gluten.

4

Share this post


Link to post
Share on other sites
Ads by Google:


Just chiming in here to echo what the others have said - you have celiac disease. Even if you don't feel it right away, gluten triggers autoimmune damage which is *not* a good thing!

I wonder if some of the variance in people's reactions has to do not only with the extent of the damage, but also with having different types of reactions as well. Some people are celiac AND allergic to wheat AND otherwise gluten-intolerant - allergies typically have immediate reactions and intolerances typically have a reaction anywhere from right away to a few days later.

When we first went gluten-free over a year ago I felt horrible in general (withdrawal), my digestion was totally out of whack, and I was pretty sure I could feel it when I got glutened, mostly with brain fog but also digestive upset.

A year later I am now doing a gluten-challenge. (I want to get tested for celiac disease - no idea if I have it or if I am "just" intolerant.) The first few days I felt great! I couldn't believe it. Then the symptoms started setting in. Now it's been a month and I feel awful all the time, I stink to high heaven, my moods are all over the place, weird neurological and arthritic symptoms I used to have have come back, my digestion is a mess, etcetera and so forth. This stuff builds up on you.

0

Share this post


Link to post
Share on other sites

I'd say the majority of those with celiac have no major outward GI symptoms.

Which is why it's under diagnosed.

The symptoms of celiac also appear like other diseases as well, so I'd say it's not the easiest to diagnose. Plus, docs are still in the learning phases.

0

Share this post


Link to post
Share on other sites




I'd say the majority of those with celiac have no major outward GI symptoms.

Which is why it's under diagnosed.

The symptoms of celiac also appear like other diseases as well, so I'd say it's not the easiest to diagnose. Plus, docs are still in the learning phases.

Even when we do have obvious GI symptoms (gas, bloating, gut pain, constipation and/or diarrhea), doctors have scuh a rigid profile for celiac disease that they say things like "you don't have diarrhea, you can't have celiac" or "you are too old to have celiac" (after years of mis diagnoses) or "you have IBS like everyone else your age, learn to live with it", etc., etc. So many people with obvious GI symptoms either get misinformation about blood tests (like "you don't need to eat gluten before the test") or get an inadequate number of biopsy samples (although 5 samples are recomended, most lab techs only get about 3) or they get told they don't have celiac disease because they don't fit the doc's rigid profile for that disease.

0

Share this post


Link to post
Share on other sites

you don't have diarrhea, you can't have celiac"

I went to the doc for my checkup earlier this week and he was surprised to hear I wasn't having D, but the opposite.

He said "that's odd."

And I consider him good compared to other stories I've heard.

0

Share this post


Link to post
Share on other sites

Since 2008 you have been gluten free. I would expect that you are in, what I call remission. For me, it would take repetitive glutenings over an unknown period of time, creating damage, for me to be symptomatic again. Or, built up to the point where I can be aware of a symptom.

But, everyone is different.

Exactly. It seems that for some people who have been gluten free for a number of years and then do a challenge, it takes awhile for the damage being done to manifest itself into noticeable symptoms. You've probably done a good job of eating gluten-free for the past few years and you intestines are in pretty good shape.....unless you continue to eat gluten (even trace amounts will cause damage, noticeable or not). I predict that if you continue being lax about the trace amounts, the more issues you will begin to notice down the road, until you are right back where you started in 2008. When you were originally diagnosed, you were probably having issues long before you realized there was a problem.

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
      107,349
    • Total Posts
      935,640
  • Member Statistics

    • Total Members
      65,030
    • Most Online
      3,093

    Newest Member
    LailaR
    Joined
  • Popular Now

  • Topics

  • Posts

    • I was noticeably gray at 18. Both of my parents went gray young as well. I have no thyroid problems and I'm pretty sure my celiac issues didn't start until 20 years later....   I started dying it when I was 28. I wanted to look more professional!
    • Celiac disease is not diagnosed by symptoms alone. Why?  There are over 300 of them and many, if not all, overlap with other autoimmune issues or other illnesses.  Learn more about proper testing: http://www.cureceliacdisease.org/screening/ I am formally diagnosed.  My hubby is not.  His mis-informed doctors told him 16 years  ago to give up gluten.  It worked, but now we do not really know if he has celiac disease or not.  He will be the first to say that I get WAY more support from family, friends and medical.   I am sorry at your doctor gave you the wrong advice.  Now, you must decide if testing is worth pursuing.  I wish you well.  
    • I am considering having my brother - who inherited Daddy's power woodworking tools - plane down my cutting boards and sand the edges enough so I can keep them. The spoons and soup stirring things though will have to be decorative. Breaks my heart. I've had good luck with Merle Norman cosmetics. They have a listing of things that are gluten-free that has helped me. My local store owner was able to get the list and knows what I can use and what I can't.
    • While you could very well be vitamin/mineral deficient, you could also have issues with your thyroid.  Autoimmune thyroid is common with .......autoimmune celiac disease.  Your doctor should order a full thyroid panel, including thyroid antibodies.   Your blood sugar should also be checked (autoimmune diabetes).  I am not saying you have these issues, but these AI issues are common with celiac disease.  In fact, you can develop or have more than one AI issue.   If I feel a very strong need to nap, I know my thyroid is off and my doctor should be notified.  A simple blood test usually verifies that an adjustment to my thyroid replacement is needed.   That said, you are in the healing stages of celiac disease.   Eat healthy and include plenty of fats to keep you satiated.  Try to avoid processed foods.  Make sure that gluten-free diet is varied and full of veggies.  Get plenty of rest.  Just listen to your body.  Soon you will feel much better.  
    • Hi and welcome Can you tell us a little about your diet? What are you eating on a typical day? You may find that some simple switches in food choices can deliver more energy and fewer spikes and crashes. This is something that receives too little attention, particularly from the medical community. It can come as a huge shock to the system and as the implications become apparent its easy to feel overwhelmed. This certainly happened to me and many others here so first do know that you're not alone. You are currently grieving believe it or not and you will be going through the stages of grief.  Second, although it may not feel it now, it WILL get better and you will adjust and adapt as you get used to the diet and start focusing on what you can still do rather than what you can't.  In the meantime, this is a good place to vent and share those feelings as they are perfectly natural and understandable and whilst not always helpful,  they are a part of you and a part of the healing process. Go easy on yourself, this is very early days. You are young, which is good news, it means you will heal sooner and you will adapt quicker and there's lots of good things on the way for you as your body gets a rest from the gluten that's been holding you back.  All the best! Matt
  • Upcoming Events