Celiac Testing

[Karen R]

This question is for everyone who has been diagnosed as Celiac. I would like to know how many were diagnosed by a lab with stool or by a scope test. Just curious.

Best,

Karen R

PS. My hands are finally starting to straighten. Hooray!!!

[Lynne G.SD]

YAY Karen!that is really good news.Celiac test done twice by Enterolab.I was hoping after a few years that it might have gone away as Celiac Syndrome will go away once one is well.I guess remission is not well enough.  hehehe

[lynnie_sydney]

Karen – not diagnosed as celiac, rather as sensitive to gluten. My tests done by the naturopath who works in tandem with my AP doc. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

[user=31]Lynne G./SD[/user] wrote:

YAY Karen!that is really good news.Celiac test done twice by Enterolab.I was hoping after a few years that it might have gone away as Celiac Syndrome will go away once one is well.I guess remission is not well enough.  hehehe

Lynne, It's my understanding that Celiac is for life, but other intolerances, such as dairy, can be overcome.  I'd love it if I was wrong on this.

Karen, I had the Enterolab stool test.  Supposedly it is more sensitive than the blood test or gut biopsy and can detect a problem before serious gut damage.  You can do the whole test without a doctor's prescription.

This whole gluten-free stuff is most annoying. :X

kim

[Lynne G.SD]

Hi Kim;
     From what I understand….celiac syndrome is often the precurser(English spelling?)of disease.We have created a mess in our gut with diet,stress, chemicals,etc and get this.Then everything else starts going wrong because of it.True Celiac disease is something that is inherited and you are born with.Thus,logic says that once we are cured(if ever) it should go away.I pray real hard for this. hehehe
    An other funny thing I noticed before I ever got sick is that I developped tiny warts on my hands ear and foot.They seem to come and go but a lot more come than go.Always in the same spots and tiny as the head of a pin.This leads me to think there is a big viral component to this disease.Did you ever notice anything similar?
  

[Karen R]

Hi All,

Thanks for all your input. I had the scope twice and negative for Celiac and yet the enterolab stool test shows positive. Very confused. I do think in my case the bacterial overgrowth in my gut mimics celiac symtoms. My GI doc says I am not celiac and that everyone at enterolab tests positive for celiac.  I seem to have trouble with starch and sugar in general rather than gluten.

Karen R

 

[A Friend]

Karen R,

Was going to paste the url to the following previous post on RBFBB, but my url window has vanished (have contacted Yahoo for help!). 

So, instead of the url to this post, am pasting the post.  Hope it will be of some help:

An excerpt from Kim's post:  If your son has not yet been tested for [highlight= #ffff88]Celiac, I would strongly suggest that too.  [highlight= #ffff88]Celiac also causes “leaky gut”.  Casey hounded me about that one too. 😉  We used Enterolab.com (she insisted :)) and their stool testing is supposedly much more sensitive than the blood tests at catching Celiac early.  I tested positive for that and am now gluten free.  None of the doctors I see even suggested a [highlight= #ffff88]Celiac test.  You can order the Enterolab test kit yourself without a doctor's order.  My insurance reimbursed me, but not all do. 

Kim, All,

Just want to add that one of the seeming favorite AP physicians in the US, [highlight= #88ff88]Dr. [highlight= #ff88ff]K, is very active with her AP patients in addressing [highlight= #ffff88]celiac and “[highlight= #ffff88]celiac [highlight= #88ffff]syndrome.”  She maintains that even those who do not have a true genetic [highlight= #ffff88]Celiac Disease can have the same type of gut problems as people who do, and can be adversely affected by gluten grains — this is called “[highlight= #ffff88]Celiac [highlight= #88ffff]Syndrome“, in which the symptoms/problems can be the same.  This is also addressed on her web site.    

[highlight= #88ff88]Dr. [highlight= #ff88ff]K looks for these problems in her patients.  She spoke at a program in my city (our local support group sponsored this, with the [highlight= #ffff88]Celiac Support Group furnishing the refreshments).  There was a full house, and she educated a lot of people on how to address and treat these problems. 

[portion of post deleted at this point]

Best,

AF

[Karen R]

Hi A Friend,

My problem is I was gluten free for over two years and did not see any big difference. I have trouble with starch in general. I ate gluten free everything and still had major digestive issues. My GI doc told me I am not celiac and to try some whole grains and I can say that I am definitely not sicker, I am actually improving. Malabsorption can be caused by bacteria and not necessarily being celiac. I think in my case the bacterial overgrowth caused my problems and addressing this seems to be the most important thing. I am mentioning this because maybe some are teting positive for celiac and may not be.

All the best,

Karen R

[Kim]

[user=31]Lynne G./SD[/user] wrote:

Hi Kim;
        An other funny thing I noticed before I ever got sick is that I developped tiny warts on my hands ear and foot.They seem to come and go but a lot more come than go.Always in the same spots and tiny as the head of a pin.This leads me to think there is a big viral component to this disease.Did you ever notice anything similar?
  

Hey Lynne,

I do not get the tiny warts you are describing.  When I've had hidden gluten, my first sign is sores in my mouth.

Take care…..kim

[m.]

I was dx'd as intolerant to gluten. GI (stool) panel from Diagnos-Techs.

[Lynne G.SD]

Hi Kimmy;
     The warts appeared months before coming down with SD.I doubt they are related to gluten intolorance.

[m.]

[user=99]Karen R[/user] wrote:

My problem is I was gluten free for over two years and did not see any big difference. I have trouble with starch in general. I ate gluten free everything and still had major digestive issues. My GI doc told me I am not celiac and to try some whole grains and I can say that I am definitely not sicker, I am actually improving.

[Kim]

[user=732]m.[/user] wrote:

I think the improvements I felt going GF were gradual and somewhat subtle.

m, how gradual?  I've been GF for 6 months and can't tell any difference at all.

kim

[Kim]

[user=31]Lynne G./SD[/user] wrote:

Hi Kimmy;
     The warts appeared months before coming down with SD.I doubt they are related to gluten intolorance.

Got it.  Crazy disease, SD!

[Parisa]

My husband tested positive for gluten sensitivity.  Stool samples showed he was reacting to gluten and saliva tests showed two genes for gluten sensitivity.  Double the genes means double the trouble.

Both kids tested reacting to gluten through stool samples and each one got one of the gluten sensitivity genes from their father and the main celiac gene which would come from me.

Ran out of money for testing for me but after seeing the kids got the main celiac gene from me and with all of the Irritable Bowel symptoms I had over the years I am doing very well gluten free.

[Author]

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