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

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
      103,876
    • Total Posts
      919,430
  • Topics

  • Posts

    • Anyone experience brain fog like this?
      Thanks for the reply, melprkr! Feeling like you're still in a swimming pool moving is a good way to put it. It feels kind of like motion sickness, come to think of it, or a really bad hangover. I was curious because my experience of 'brain fog' in the context of thyroid problems feels so different than brain fog caused by gluten, and I couldn't quite figure out how to explain it. Swimming pool comes pretty close, though. Hope you feel better soon as well!
    • Anyone experience brain fog like this?
      Brain fog is a common symptom.  I had a hamburger patty from a local restaurant and am suffering the effects.  Sometimes mine is bad and sometimes it is mild.  This one feels mild, provided I am not "glutened" again.  I have the exact same feelings when I am contaminated.  I actually had 2 good days this week to ony have to go back through this again.  The first day is just tired and want to sleep, but as each day goes on it seems like all I can do to concentrate and do anything.  TV is OK but for me just standing up or moving sometimes makes me dizzy.  Luckily I don't have the nausea but even sitting still I feel like I am in a swimming pool moving.  You know kind of like when you were a kid and you got in the pool or went roller skating but then got out and and you still felt like you in the pool or skating?  The anxiety and the depression is the worst.  I am taking things to help with it but it doesn't always help.  Only thing that seems to help sometimes is just going in to my room and laying there and not moving and just going to sleep.   It will pass.  Just be cautious about everything.  I have opted to let my family know that I will bring my OWN food when we have gatherings.  I don't mind being the odd man out because I am already the odd ball.  One thing I have learned and that is people mean well but mistakes happen and we are the ones who have to pay the price.   Hope you feel better soon.
    • gluten intolerance, dairy intolerance and fructose
      Look into The Paleo Approach by Sara Ballentyne, PhD.  Great resource and will probably answer your questions.  I have the same problem. You have to really read labels.  The only coconut milk I can use is an organic canned one.  Others have too many ingredients that are problematic.  For now, stay with meat and vegetables as someone else has recommended.  If rice works for you, great.  If not, winter squash is good.  The diet change is overwhelming at first but then it starts to make sense.  The one good thing about an intolerance versus allergy is the possibility of someday being able to add it back into your diet once your gut has healed.
    • Anyone experience brain fog like this?
      I went gluten free about a month ago, and was finally feeling *great* last week when wham -- my well-meaning Dad cooked me dinner and forgot to check the ingredients on the fish sauce he used. The upside of being glutened for the first time is that, after a couple weeks of feeling good, I feel like I can discern the symptoms a lot better now. I've noticed that the worst part, aside from the nausea, is the "brain fog," but I'm curious if my experience of brain fog is the same as or similar to what other people are feeling. For me, it becomes almost physically painful to concentrate on anything. If I try to read a book, or watch a TV show, it makes me feel dizzy, overwhelmed, and nauseous. For a couple days, I feel like all I can do is try to stay still and do as little as possible while I wait it out. It feels similar to anxiety, but not quite the same, and none of the usual tricks for getting through a panic attack help. Do any of you experience brain fog in a similar way? Where it basically makes you feel sick to try and concentrate on anything, even fun and relaxing things?
    • gluten intolerance, dairy intolerance and fructose
      I've never gone fructose free so can't help much with that.  But any fruit is probably a problem.  If you are serious about avoiding fructose you could do a search and print out a list of foods to avoid. http://www.mayoclinic.org/fructose-intolerance/expert-answers/faq-20058097 Yes, it very possible to have multiple food intolerance issues.  Many people have multiple food intolerances.  It might help to avoid any foods that are sweet for now.  Meat and most veggies are probably the way to go.  You may want to get some jerky to eat for snacks.  Peanuts might be ok but you'll need to verify that.  Boiled eggs are probably ok.  Most soda would be a no-no.      
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • 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
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,912
    • Most Online
      1,763

    Newest Member
    Mamalarge
    Joined