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Washingtonmama

I'm NOT getting the endoscopy done.

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I had one done in October to look for an ulcer (caused by using Motrin, don't take that stuff!) They barely had time to look around because even with the max dosage of four medications, (I was only supposed to get two) the doctor said I was fighting too much to finish the procedure. I was shaking like crazy when I woke up and my blood pressure was pretty high. I stopped shaking and my bp went down after they brought my husband back, because hes my hero and I love him to pieces.  ? They said I will have to be under general anesthesia in a hospital if I ever needed one again. I've had 5 kids, six surgeries, kidney stones, hospital stays etc but the thought of that procedure just freaks me out! 

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I actually like general anesthesia, you go to sleep wake up with no sense of how long you have been out. I oddly feel the most calm and rested ever after coming out. Like I just woke up from the best full night of sleep ever feeling without the groggy or soreness.

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It sounds like you had a reaction simliar to mine when I had a scope done in an outpatient clinic without an anesthesiologist.  The doctor didn't believe me when I told him how horrible the experience was until I told him how many times he said 'more Versed'.   I had the procedure redone with a different doctor in a hospital with an anesthesiologist and had no problems at all.  If you need to have the endo redone for celiac diagnosis request that it be done in a hospital with full anesthesia and you should be okay. I don't think all GI doctors are as knowledgeable about anesthesia and 'twilight drugs' as some of us need them to be.

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Ennis, I am so jealous. I really wish I could wake up feeling like you! Ravenwoodglass, that was a horrid experience you had. Didnt the doctor know you were still awake? I know I can get the endoscopy done under general anesthsia, but i always have problems with anesthesia. Either Im dry  heaving for 24 hours, cant stay awake for three days etc. And I start having panic attacks week before any procedure. Im a mess lol 

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52 minutes ago, Washingtonmama said:

 Ravenwoodglass, that was a horrid experience you had. Didnt the doctor know you were still awake?

He had to have known I was awake because I kept telling him he was hurting me. Turns out I have a twisted large intestine and he was having a hard time getting the scope past that area.  Versed is a 'twilight' drug. It is supposed to sedate you but keep you consious enough to follow any direction the doctor gives you. It causes something like amnesia so you don't remember anything when you come out of it.  It seems I am resistant to it's effects and while the experience was far from pleasent at least now we know that I need other anesthesia. What happened to me is not real common though most folks will have no problems.  I now have a different GI doctor.

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On 4/1/2017 at 3:29 AM, Washingtonmama said:

I had one done in October to look for an ulcer (caused by using Motrin, don't take that stuff!) They barely had time to look around because even with the max dosage of four medications, (I was only supposed to get two) the doctor said I was fighting too much to finish the procedure. I was shaking like crazy when I woke up and my blood pressure was pretty high. I stopped shaking and my bp went down after they brought my husband back, because hes my hero and I love him to pieces.  ? They said I will have to be under general anesthesia in a hospital if I ever needed one again. I've had 5 kids, six surgeries, kidney stones, hospital stays etc but the thought of that procedure just freaks me out! 

I hear ya on that one!  I have heard stories of many people who start fighting while under light sedation and I just think it is a survival instinct when you are having something put down your throat.  Luckily, I did not need one because I failed the Celiac test panel by huge numbers and presented as a classic Celiac.....malnourished and severely underweight. It was pretty much a no brainer. I have the same problem as you.....when someone in a white coat gets too near to me, my BP spikes really high.

Raven gave you good advice......if you really feel the need to have one done, then find an anesthesiologist who knows what the hell they are doing! It can make all the difference between severe anxiety and getting through the test calmer, with less anxiety.

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16 minutes ago, Washingtonmama said:

Thanks Gemini. If its not too personal, can I ask what your test numbers were?

All of my numbers were more than 10X the normal limit given for normal ranges. Normal ranges can vary from lab to lab but most are anything under 20 is normal. I have been gluten-free for 12 years and have noticed on repeat testing that some labs have tightened up that number to below 5 or 10 being normal, especially on the AGA/IgA or the newer DGP test.  They are essentially the same test but one is a newer version.  It's the test that should be used for dietary compliance.....the one that tells you if you are reacting to gluten that you are consuming.  My tTg was over 200 but they only test to that number so it could have been much higher.  There are doctors who will diagnose on blood testing alone if the numbers are over 10X the range of normal.  Throw in a positive EMA and it's pretty much a slam dunk for Celiac.

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Those test acronyms are all Greek to me lol So for most labs under 20 is normal. If yours were 10x that, they were in the 200 range! Geeze. Did you have a lot of symptoms? I havent heard from my GI doctor yet. What do my labs mean other than two being labeled as high? I had a Celiac panel done six months ago, which came back negative. No one told me I had to be eating gluten. I had been gluten free for five months at the time of the test. The good news is the IgA at that time was 2, and the Gliadin IgA was 7. So I guess a gluten-free diet will work well for me. 

Component Results
  Component Value Ref Range & Units Status
  Tissue Transglutaminase IgA 25.4 (H) <=19.9 Units Final
  Gliadin Peptide IgA 23.1 (H) <=19.9 Units Final
  Gliadin Peptide IgG 4.1 <=19.9 Units Final
  Endomysial Ab IgA Scn Negative Negative Final
  IgA 273 68 - 359 mg/dL Final
  Celiac Panel Interp     Final
  Results suggest the possibility of certain gluten sensitive enteropathies such as celiac 
disease and dermatitis herpetiformis. Diagnosis should not be based on serologic findings 
alone. Results should be used in conjunction with other clinical findings and biopsy results 
for a diagnosis of gluten sensitive enteropathy 

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15 hours ago, Washingtonmama said:

Those test acronyms are all Greek to me lol So for most labs under 20 is normal. If yours were 10x that, they were in the 200 range! Geeze. Did you have a lot of symptoms? I havent heard from my GI doctor yet. What do my labs mean other than two being labeled as high? I had a Celiac panel done six months ago, which came back negative. No one told me I had to be eating gluten. I had been gluten free for five months at the time of the test. The good news is the IgA at that time was 2, and the Gliadin IgA was 7. So I guess a gluten-free diet will work well for me. 

Component Results
  Component Value Ref Range & Units Status
  Tissue Transglutaminase IgA 25.4 (H) <=19.9 Units Final
  Gliadin Peptide IgA 23.1 (H) <=19.9 Units Final
  Gliadin Peptide IgG 4.1 <=19.9 Units Final
  Endomysial Ab IgA Scn Negative Negative Final
  IgA 273 68 - 359 mg/dL Final
  Celiac Panel Interp     Final
  Results suggest the possibility of certain gluten sensitive enteropathies such as celiac 
disease and dermatitis herpetiformis. Diagnosis should not be based on serologic findings 
alone. Results should be used in conjunction with other clinical findings and biopsy results 
for a diagnosis of gluten sensitive enteropathy 

The tests you were elevated on were the tTg/IgA and that tests for intestinal damage.   The other test was the AGA/IgA and that tests for the reaction to gluten you are eating....and you are reacting to it.  It is the older test for it, which was done on me 12 years ago.  There is a newer version of that same test called the DGP but there seems to be some issue with it not being as reliable as originally thought. The one they did on you is still a useful test to run. Your EMA (Endomysial) is negative.  If it had been positive, then coupled with a positive tTg, would have been a slam dunk for Celiac. However, having it be negative does not rule Celiac out.  Your other Celiac panel is moot because you were gluten free but think about this......without gluten, your testing was very negative.  On gluten, you pop 2 of the tests that have real meaning.  That is not a false positive.

The IgG testing is just another antibody test, like the IgA.  If someone is IgA deficient, they will rely on the IgG. You have plenty of Iga so that testing is reliable. That is what the plain IgA number means...its a control test to see if you make enough IgA for testing to be reliable. Just because the IgG is not, does not mean much other than you haven't been on gluten long enough for things to get really bad. Mine were positive but I went YEARS with symptoms and I slowly got sicker and sicker. Antibody testing is funny.......there is no linear line it follows.  Some folks on this forum had only one test positive yet had extensive damage.  Others might have higher numbers yet damage is not so bad. Celiac damage on endoscopy can be like finding a needle in a haystack.

You could still ask for gene testing to see if you carry one or more of the genes associated with Celiac.  It is not diagnostic for Celiac but will tell you if your have the genetic make-up to trigger for it.

Yes, I had horrible symptoms.  I presented with classic Celiac, which means I am the skinny, malnourished kind.  Not anymore, but I was down to 94 pounds at diagnosis and, at 5' 4" tall, that was not good.  I had neuro and GI issues galore and developed 3 other AI diseases from going so long without a diagnosis.  Hence, my distrust of the GI profession.  I know it was 25-30 years ago when I was actively seeking help for my symptoms but when you end up being told it is all in your head and please see the shrink, the trust goes away.  I ended up figuring it out myself when I was hitting the wall with it and requested the blood work, which gave me all the answers I needed to dump gluten and regain my health. I later had gene testing done, which ended up with a double DQ-2 gene, so how lucky am I that it's on BOTH sides of my family!  I can't get that lucky with the lottery!  :lol:

See what your GI says.  You have 2 positives that tell you gluten might very well be a problem for you. Maybe it isn't full blown Celiac but you won't trip any antibody tests if it is non-Celiac gluten intolerance.  Personally, if you went long enough eating gluten, you would most likely trip the EMA test but take it from someone who went way too long eating gluten.........it isn't worth all the collateral damage that can happen.  With positive dietary results, see what happens when they re-test your antibodies down the road.  They should go back to normal, if you follow the diet correctly. Ask for the gene test. That goes long way to giving you some more meaningful answers but it seems you may already be comfortable with eating gluten free.

I hope this helps.  I want you to have definitive answers as needed to make you comfortable with your choices. Yes, there is a strong possibility you have Celiac but I totally understand your apprehension over the biopsy. I refused one also but I was very ill at the time and the thought of putting a camera down my already inflamed and sick gut was beyond my ability to handle. But, for me, the answer was very clear cut. What nailed it for me was on the third day of being very gluten-free, while awaiting my blood results, the vomiting and diarrhea stopped completely, without any use of meds to help it along. We have a BINGO here!  ;)

 

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Good gosh, you had a horrible time. How sad doctors rarely listen. We know what is going on with our bodies, all we need for them to do is take it seriously. That could have saved you years of misery. :(  Thank you or explaining the test results so plainly. My doctor has been on vacation since she ordered the test, so I won't find out anything for another week. 

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