Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Have I Been Misdiagnosed?

Ginny

Recommended Posts

Ginny Rookie
Ginny
Posted

I was diagnosed with Celiac in Oct 06 with a positive biopsy (Dr said it showed mild blunting). I immediately went gluten-free and my GI symptoms resolved rather quickly. Since then I have occasionally felt like I was "glutened" but was typically able to trace it back to the source-most of which were "malt" ingredients. When they originally tested my blood for the antibodies, only one of the three came back as elevated. So I got to thinking...are the three antibodies they test for correlated with the three grains we are to avoid, wheat, barley and rye? I decided to run a little experiment of my own--I ate bread and ravioli for dinner to see if I would react to the wheat. No symptoms at all. Is it possible to be sensitive to only one of the three grains? I am very confused and would really appreciate any feedback!

Thanks!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Gluten is a protein found in wheat, barley, malt and rye. That protein, when ingested, will kick off an autoimmune reaction in which you body will attack itself.

Celiac is forever. Whether you reacted to the bread or not, you are still causing damage to your intestines.

gfp Enthusiast
gfp
Posted
are the three antibodies they test for correlated with the three grains we are to avoid, wheat, barley and rye?

Sorry no....

They are just different types of antibody

google : Immunoglobulin isotypes

Ginny Rookie
Ginny
Posted
  • Author

I guess I just don't understand why I have an (almost) immediate severe reaction to even a small amount of malt and no reaction at all to (large amounts of) wheat flour. I understand that the antibodies they test for are not specific antibodies for wheat, rye and barley--I am just trying to make sense of all of this. I am wondering if it is possible to be allergic and have reactions to one grain (ex:barley), but not others (flour). The glutens in wheat, barley and rye are very similar, but not chemically the same.

Jestgar Rising Star
Jestgar
Posted

Maybe you're also allergic to barley as well as being intolerant to gluten.

Guhlia Rising Star
Guhlia
Posted

Food for thought... I react VERY strongly to minute amounts of gluten, but if I purposely ingest large amounts I have no symptoms. Not that I purposely ingest large amounts, but my point is that small amounts affect me much harder than large amounts.

ravenwoodglass Mentor
ravenwoodglass
Posted

Don't forget also that an intolerance is quite different than an allergy. It may take up to 5 days for your body to react.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


CMCM Rising Star
CMCM
Posted

I've noticed a real inconsistency of results with regard to gluten. I, too, can sometimes eat certain things and have no real reaction. Other things (even small amounts of soy sauce is one) and sometimes hidden things can cause a huge reaction. I've given up trying to figure it out, but realize that I am so much better off 99% of the time when I am completely careful to totally avoid gluten. I've read a number of times that the fact that you can on occasion eat gluten with no reaction means nothing....it doesn't mean no damage is being done.

gfp Enthusiast
gfp
Posted
Food for thought... I react VERY strongly to minute amounts of gluten, but if I purposely ingest large amounts I have no symptoms. Not that I purposely ingest large amounts, but my point is that small amounts affect me much harder than large amounts.

Guhlia... I'm exactly the same....

I do have a theory as to why.... its just my theory but anyone else is encouraged to add their 2c ....

Last time I mentioned this someone decided to tell me what I can and cannot do with MY body and told me what I should and should not say regarding things which were true.... erm the result of which I ended up getting an offical warning for trying to correct the lies that were being spread about what I said.

In order to avoid this....

First off...

DO NOT TRY THIS AT HOME

Secondly the opinion of someone telling me what I can and cannot do with my own body and then telling me I have no right to actually report it is worth a lot less than nothing...

Don't tell me I'm not interested...

Ok so having said

DO NOT TRY THIS AT HOME

I have experimented with this after I have been accidentally glutened....

Basically on vacation, eating out sooner or later I tend to get caught out....

At this point depending how long the rest of the vacation is... I have made a descision to just say to hell with the diet until I get home... which basically means my vacation stops revolving around where I can eat and requiring myself and my girlfriend to schedule our whole vacation around me being able to find something to eat. This can extend as far as not being able to visit a whole town... It took me many trips to Tuscany to eventually see Seinna ... the travel time and heat making it near impossible to actually spend a day and take enough snacks while not being able to find anywhere safe...

DO NOT TRY THIS AT HOME

What I have noticed is I don't actually feel any sicker for a pizza and beer than CC.

Even more bizarely I found that the worst part of the symptoms occurs AFTER I go back gluten-free...

Whilst I keep the gluten topped up pop a few immodium I have D and some abdominal pain...

In fact its pretty much like I was before being gluten-free.... generally ill but not all the time... keeping it topped up seems to alleviate the symptoms...

After I stop (usually max of 2-3 days) is when the trouble really starts...

By really starts I mean I would be bed ridden if I wasn't stuck in the bathroom...

My interpretion of this is that the worst part sets in after because it is withdrawal....and the body starts to adapt to processing the toxin....

This is (I believe) why many of us seem to react more quickly/violently once we go gluten-free....

As a parallel its why a smoker can smoke 60 a day and not vomit after the first packet when a non smoker would gag on the first one... it doesn't mean the cigarettes are not causing damage but that the body has adapted to processing the toxin and accepted it has to. Indeed the body quickly adapts to feeling normal with the toxin and abnormal without it...

I see no reason why gluten wouldn't be similar....

I'm not recommending others should do this... nor am I presuming to say they shouldn't... I'm just offering the experience I gained when this has happened.

It explains why a small CC can be worse than a big slip.... at least so its worth considering what a lot of pain and discomfort gave me in terms of experience. Its not a suggestion to try it... and its certainly not a solution.... any more than taking crack is a good solution to depression... At the point you come down its very unpleasant... (I never tried crack I'm talking about gluten in case that slipped your minds)... but I mean seriously badly unpleasant to the point people with me want to call an ambulance...

Sometimes this just happens all by itself without me having the chance to stop ....

dionnek Enthusiast
dionnek
Posted

gfp, that actually makes some sense to me :)

I too had worse symptoms after going gluten-free, and wondered how I could eat gluten for so long prior to being gluten-free but then feel WORSE after stopping gluten. Of course, realizing that, for me anyway, the worst part of gluten is the internal damage (and the possibility that if I eat gluten it might be the "last staw" that puts my body over the edge. I wish there were studies that could show what a day or 2 of gluten eating would do to a celiac (who had recovered and been gluten-free) as far as eternal damage. Of couse, we'll probably never have a study like that. It has to make you wonder though, since in Europe they've determined that a certain amount of gluten is ok - how did they determine that?!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Mimiof2's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      9

      EDG 3 years ago fine, now it shows focal villous blunting,

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"
    2. Scott Adams
      0

      Woman Refuses to Share Gluten-Free Cake—And Sparks a Bigger Conversation

    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      My dad had an Abdominal Aortic Aneurysm. Fortunately, it was discovered during an exam. The doctor could feel my dad's heart beating in his stomach/abdomen. The aneurysm burst when the doctor first touched it in surgery. Since he was already hooked up to the bypass machine, my dad survived ten more years. Close call! Triple A's can press on the...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and...
    5. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,073
    • Most Online (within 30 mins)
      10,442
    Liley
    Newest Member
    Liley
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
×
×
  • Create New...