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      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.

Biopsy ...so Frustrated At Myself
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13 posts in this topic

Feeling very disappointed at myself today. This morning I was due for my endoscopy biopsy. I explained that they'd tried to do this in 2010 but they got the scope half way down and I choked and stopped the procedure. I explained that this time I'd be worse as I was extra nervous after having a total thyroidectomy in March last year which ended up with a vocal chord being cut and months of therapy to obtain my voice again.

So today the consultant agreed to give me sedation and numb my throat due to my anxiety..... I feel such a wimp, the staff were brilliant but as soon as the tube started going down my throat, I gagged and pulled it out of my mouth. Not once did I feel sedated/dizzy/weak ... the needle puncture didnt seem to be near the vein when I looked later. I've since spoke to a couple of friends who had a similar procedure but they said they were disorientated and zonked out from sedation!

I've had such a miserable christmas making myself eat gluten and all for..... nothing! Aaarrrrgggghhh! :(

The endo report does says: Anaemia, Positive TTG weakly positive EMA intension to liopsy for lactose intolerance. Comments: Unable to tolerate procedure therefore abandoned. Patient will be referred to dietician and commenced on gluten free diet.

Previously I was told I would be sent for a bone density test.

Just so annoyed at myself when I know others have gone thru the biopsy smoothly and now I'll never know to what extent the damage is (which might help to keep me on track of staying gluten free and something to compare with in future) and now unsure if my family will take me seriously or get tested themselves.

Sorry, I just needed to rant.....anyway, new day tomorrow, new start ...as gluten free :)

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No, no, no being so hard on yourself - you tried and if your family doubts your diagnosis with positive antibodies - send them to us - we will educate them.

The great news is now you can remove all gluten for good - good ridence - sionara - adios! Spell check doesn't work on my cell - so pardon any mistakes.

Congrats on getting past the dredded day :)

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Thanks GottaSki...think you just made my first real smile of the day :)

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Good - repeat as often as possible - it really does help.

Hang in there and :)

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Adios yucky gluten :) :) :) feelin better already :)

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That sounds nasty! I was asleep for mine. Don't think I could have done it awake!

Welcome to the club! za4.gif

Your secret decoder rings and shoe phone will arrive shortly (but don't hold your breath).

157fs837411.gif

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I was diagnosed on blood tests alone too. A positive is a positive whether it's a blood test or endoscopy... and you had two positive blood tests! Adios gluten is right! :)

And just tell your family that you had the blood tests, and "went in" for the endoscopy, and you tested positive... they don't need to know your testing details when you are trying to get them to take it seriously. ;)

Best wishes.

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Cheers Karen and nvsmom....i'm excited to starting a healthier lifesyle. Best get some new pots, pans, toaster and a shopping list sorted :)

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Certainly not your fault that they didn't sedate you thoroughly ! A lot of these docs ought to do a week's tour with an equine veterinarian making barn calls running naso-gastric tubes for colics to check for reflux, and then they'd learn what sedation really means - :P they can't knock them out because the horses have to remain standing and semi-conscious, but they don't dally around with something that large who's very uncomfortable and might not appreciate a rubber hose going up their nose, thinking "oh well, :rolleyes: maybe that was it."

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oh honey, that sounds horrible! if you had ttg, though, you already KNOW you have tissue damage... enough to create an autoimmune response within yourself, whereby your antibodies are attacking your intestines (and God knows what other body organs!) and i agree that it is not your fault they didn't sedate you correctly. and i agree with nvsmom... nobody needs to know the details!

kareng~ i want a secret decoder ring too!!! hehehe!!!

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V Gal,

Well, this is the fault of the hospital staff, honey. You should have been heavily sedated , not just numbed. Poor babe. I HATE any tubes down my throat too and do not get me started on anything going in anywhere else. I clam up like ...well, a clam....slam . shut.

bring on the heavy drugs or you ain't getting in.

I can relate to a story of a botched procedure (not the endo, but the OTHER one.....) my poor hubs did not go OUT after being sedated

and well, let's just say he sat bolt upright and had the doc by the front of his white coat.........they blasted him with more. The doc is lucky

as the hubs is a pretty big dude.

anyhooo, here's your afternoon cheer:

Cry no tears!

heave no sighs!

you're one of us...

gluten, "GOODBYE!

Yaaaaaay, Gluten free!!!!!!!!!

buggers, I ripped my pants doing the jump and split...

but here's what I looked like!

smileys-cheerleading-755332.gif

apparently, there is a delay in the shipment of the secret decoder rings as Karen promised me one 2 years ago and I'm still checking the mailbox every darn day.

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They never manage to knock me out with their so-called sedatives - gotta bring in the heavy troops like a general to take this woman down. And that went for colonoscopy, bronchoscopy, endoscopy, but sssshh. don't normally tell newbies this possibility. But if you tell them, they know it, and they still can't sedate you, that's incompetence or willfulness :ph34r:

I had to have a breathing tube and nasogastric feeding tube last summer and, while I have no memory of any of this, hubs tells me I was kicking and screaming and they had to tie my hands and feet down because I was trying to pull everythng out :lol:

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Awww thanks all for your comments and understanding and sooo glad I'm one of us!! ..love the poem IH and Karen, excitedly awaiting my secret decoder :)

:):):)

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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