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

  • 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.

Is This Diagnosis Accurate
0

8 posts in this topic

I went to the celiac center at Jefferson in Philadelphia today and I have to question their analysis. I want to run it by the group here and get some opinions.

I tested positive for a gluten sensitivity via a test from Cyrex labs. I've been eating gluten-free for 4 months now and feel slightly better. Less gassy, more energy. But nothing earth shattering. The reason I was tested and decided to go gluten-free was because of sleep issues I've had for 15 years. Nothing else has worked, so after the blood test showed I was sensitive, I went gluten-free. Despite felling better in general, being gluten-free has not improved my sleep issues at all.

So, I went to the celiac center to show them my positive bloodwork showing I had a gluten allergy. I don't think I have celiac, but why not ask the experts. From my symptoms they didnt think I have celiac either, but want to test via endoscopy as well as do bloodwork for the genetic markers for celiac.

The Dr. said that if the genetic markers come back negative, I will never get celiac. Fine, I'm not predisposed to it. Here's where I have qestions. She also said that if its negative, and I do have a gluten sensitivity/intolerance that eating gluten will do no long term damage. Those who are sensitive/intolerent have short term reactions (headaches, gas, bowel issues) but that there is no long term damage.

That doesn't sound right to me. From what I've read there are few long term studies on gluten sensitivity and the long term health implications. How can seh definitively say there are no long term effects? Isnt is safer to not eat gluten and play it safe until we have further information from long term studies?

Any thoughts?

0

Share this post


Link to post
Share on other sites


Ads by Google:

People who have celiac disease who continue to eat gluten do have a chance of having long term effects of the gluten damaging their system. Non celiac people have a sensitivity to gluten but it does not damage the intestines as the gluten does with a celiac. Celiac disease is an autoimmune response to gluten. It sees it s an enemy and therefore has an adverse reaction on the intestines.

0

Share this post


Link to post
Share on other sites

I would respectfully point out that there are also diagnosed celiacs who have no intestinal damage, in whom the gluten has reacted upon their brains causing among other things migraines and gluten ataia, and in whom it has reacted on their skins causing dermatitis herpetiformis. Some unfortunates have all three reactions, but some only one.

Since up until a couple of years ago (or less) nobody had ever studied those gluten intolerants who did not have intestinal damage (they were told they could eat all the gluten they wanted because they did not have celiac disease), I believe the jury is still out (or the case is being retried, if you will) as to whether gluten intolerants suffer any other adverse damage from gluten. The unfortunate part about medical science is that what was seemingly irrefutably true yesterday may no longer be true tomorrow. It is going to be really interesting when these new studies come out.

2

Share this post


Link to post
Share on other sites

...

The Dr. said that if the genetic markers come back negative, I will never get celiac. Fine, I'm not predisposed to it. Here's where I have qestions. She also said that if its negative, and I do have a gluten sensitivity/intolerance that eating gluten will do no long term damage.

...

I'm with you on this one Leeloff - there's no way for her to really know this.

And also, the Dr's genetic comment is wrong. US just using 2 genes, while I've seen talk of 8 or 9 found to be involved so far, and have seen ppl here say that in Europe they already use more than the 2 we look for.

We have a few members here neg on the 2 genes but pos through testing .. .I think .. .details fuzzy right now ....

Anyway, I'd call it short-sighted & premature to definitively claim ANYTHING about long-term effects of gluten on NCGI folks.

1

Share this post


Link to post
Share on other sites

Thanks everyone. Based on the way I feel after being gluten-free, I will probably still maintain a gluten-free lifestyle even if I come back negative for celiac. I just don't think there is enough long term data out there to say that someone with gluten sensitivity/intolerence can eat gluten with no long term impact. I'd rather play it safe. And as much as I support medicine and doctors, the best proof is how my body feels. Being gluten-free has helped

0

Share this post


Link to post
Share on other sites




"I would respectfully point out that there are also diagnosed celiacs who have no intestinal damage, in whom the gluten has reacted upon their brains causing among other things migraines and gluten ataia, and in whom it has reacted on their skins causing dermatitis herpetiformis."

I don't believe it's celiac disease then? Yes, this is purely semantics I'm talking about. It makes sense to me to categorize things as much as possible, if there are differences. (Not like 'gluten sensitivity' is any better in explaining things, we should just call it what is it, 'gluten-induced intestinal damage' or 'gluten induced migraines and nausea', etc.)

Reading about gluten ataxia reminds me of reading the studies that show that Alzheimers might just be insulin resistance in some brain cells. Is it diabetes if the pancreas isn't involved?

If you haven't found studies that show long-term impact of eating gluten for a gluten sensitive individual is negligible, or not immediately reversed or stopped or some such, then absolutely the person should not have said there is no long-term impact. I mean an answer like 'we haven't studied that, however at this point we don't know of any long-term or irreversible effects' would be minimal. But even then, it doesn't make much sense to me that continual use/eating of somethign that causes immediate bad effects would not, at some point, start to cause more longterm problems.

From mushroom's post I wanted to read about gluten ataxia (haven't before yet) and the first hit in google for gluten ataxia talks about current research that looks like it may have even found the why of it, and it really does look like a 'celiac disease of the brain', which of course involves different cells which, in the worst case, may not grow aknew or regenerate as easily as villi do.

0

Share this post


Link to post
Share on other sites

I'm one of those without signs in the intestines. I only had one of the blood tests come back positive and the genetic test.

As you can tell with my sig, i have other issues. I have noticed that i am doing much much better since the dx. I can sit still for a little bit, i can pay attention in class, no more "IBS" crud, my GERD is under control, my weight has stabilized and i'm still sort of loosing, and my knees have been doing better (right now as i type this the badder one of the two is throbing :lol: ). I also had major issues with absorbtion of calcium when i was a child. It caused the heel on my left food to grow jagged (was not fun to have a foot wrapped for month(s)). It eventually did what it was supposed to but still.

The thing is, the doctors just don't know. Celiac has sooo many symptoms and whathave yous that its kinda impossible to have a set example (this is what it is, etc).

0

Share this post


Link to post
Share on other sites

There is a recent study confirming the existence of 2 forms of NCGI. They call it non-celiac wheat sensitivity in the study. The study does not show any conclusions about possible long term effects of the conditions. It did identify 2 possible forms of the condition, one with more severe symptoms similar to celiac disease, and one with less obvious symptoms. Where did your doctor get her information? It is not known at this point what long term effects these 2 new conditions may cause,

http://www.celiac.co...ists/Page1.html

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
      103,588
    • Total Posts
      918,276
  • Topics

  • Posts

    • Last posted 2013 - Improving health
      I am glad you are feeling so much better!  Your posting will encourage others.  Thank you!
    • Last posted 2013 - Improving health
      When I first started this journey, roughly 11 yrs ago with symptoms, I had no clue. Eventually, having no luck with doctors (hypochondriac or psychosomatic), I googled my symptoms over and over looking for something... ANYTHING... that would give me a clue. Among other issues, my insides would not move, I was turning gray, felt like death, and had a persistent cough. I can't remember who but someone had posted on the forum and I found some of my symptoms. Eureka, I immediately began a gluten-free diet to see if it made any difference. Of course that was a journey, not realizing what products contained gluten. Long story shorter – first I went gluten-free, symptoms began to reappear, then it was soy (first organic was okay, then not), symptoms reappeared, took out corn, symptoms reappeared, then it was all grains. So the last couple of years I have been grain-free plus no sulphates. Actually, truth be told, my Celiac pharmacist gave me the recipe for health. I asked her if she liked a certain product. She answered, “I don't know, I have never tried it.” I asked her what she did use. She replied, “Nothing out of a box, a bag, or a bottle.” And that has pretty much been my life for the last couple of years. There is the odd product I try but it always has an after effect and I have to way the consequences against the enjoyment of it. I am one of those who react to 1 crumb in the butter, flour dust in the air, sulphates in anything, sometimes things that don't even seem like they would be a problem, like avocados and blueberries when I am contaminated. January 2016 I began this recitation. It is now May 5th, 2016 - Here I am 4 months later and I feel like screaming to anyone who will listen, “Things are improving!! My gut is healing!!” So what happened?? Someone suggested digestive enzymes. My insides were so compromised that I couldn't eat much besides fruit, veggies, and meat; all plain, all without being touched by people other than me. I could barely stand salt at times when I was compromised. Haven't been to a restaurant in years since I am not in a city that would have one to cater or understand this much of a problem. I started digestive enzymes but I read the label wrong and started with 5 first thing in the morning. Whatever... I began to notice improvements in what I could eat. Not anything different but just that I could eat without feeling ill or having my gut shut down. I stayed on those for a month and a half.. then I picked up a parasite from someone living in a very unclean apartment and visiting there and helping to clean. Well, that was a huge battle. I had to eat to discourage parasites. But in the process my insides began to heal dramatically. I was eating blackberries, drinking garlic keefir (which I couldn't have done 5 mths ago and gave me the first clue my insides had improved substantially), drinking oil of oregano or peppermint oil drops in a glasses of water, eating cabbage and green roughage. Drinking water with apple cider vinegar in it and Aloe Vera juice. After a couple of weeks my insides were a whole different story. I had a feeling of wellness that I hadn't had for years! I FELT like trying to eat something different. So I decided to try Gluten-free Rice Chex. Haven't had them in years.... and I am so happy! I can eat them!! (Not to say they are healthy, cause they are processed crap) but I didn't get sick and that was the amazing part. So now I am beginning to try a few things that would have set me back previously, I have made my own crème brulee because I have always been able to eat eggs. But the sugar was causing problems, but now it's okay. The issue I have now is that I want to try things too fast so I am having to exercise restraint. So here is it – parasites are very common, everyone has them however whether they cause problems depends on your immune system. Does it not makes sense that they would cause leaky gut? An over abundance in the gut would destroy gut tissue and take nutrients from a person and possibly put holes in the gut leading to food reactions? Digestive enzymes help to destroy the protective coating around parasites. Foods that discourage them or kill them are blackberries, garlic, cabbage, oil of oregano, peppermint oil, aloe vera juice, Braggs apple cider vinegar and more (google to find). I found medication didn't do anything so I turned to all the other. So this is how it is today. I don't suggest it is the answer to anyone else's problems but when I found this site, hidden in the posts was the beginning of the answers for me.  I may still be gluten, soy, corn intolerant but I am feeling so good now and I just thought I would tell someone.  I just wanted to share. Thanks for reading.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      Not to mention my hips and knees are killing me and I have really bad calf pains and horrible bloating after just 3 days of glutening. I don't think I could live like this for a whole week.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      I saw my gi today and he said to not worry about eating gluten. I have abdominal pain in the small intestine area and referred pain in my back, indicating pretty bad damage. So I'll just go without the gluten and do the genetic testing if needed.
    • Vagus Nerve Attack
      Hello All: I came across this series of posts from as Google search on "Wheat Vagus Nerve". I find all of your replies very interesting and would like to add mine for those searching for information but with differing symptoms. I have struggled with the vagus nerve impact to breathing as Maria mentioned in the original post, but only an impact to breathing and nothing else.  But my symptoms were brought on not only by wheat, but also by other ingredients such as dark chocolate, probiotics, caprylic acid, mustard, fluoride in toothpaste/mouthwash just to name a few.  I found when I sat down my breathing would return to normal, but as soon I got up, the impact would return. The impact to breathing would come 4-6 hours after ingestion and last for about the same amount of time.  At times I could not even take ten steps without having to stop, not being able to breath even moderately.  The symptoms now are decreasing in severity but not in duration. My doctor checked my blood for celiac and results were negative. A number of chest x-rays to rule out COPD.  I am waiting on an appoint with an allergy specialist in a few weeks to see what they have to say.  Needless to say, it is difficult to maintain a healthy weight. Thanks for your posts, and I hope my contribution is of benefit to others also.
  • 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)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,683
    • Most Online
      1,763

    Newest Member
    Rainbow60
    Joined