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Getting Confused


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#16 trayne91

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Posted 04 May 2012 - 05:26 PM

I have my insurance straightened out now. Got that done last night. I'm actually self-employed and in a low patch right now, and am using a state-wide lower income insurance program right because Blue Cross Blue Shield was killing me with high costs. My current insurance was trying to say I was ineligible and cancelled my insurance on the day of my appt. I raised hell and have it all back and straightened out now, so that shouldn't be an issue for me anymore.

As for this doctor, he also told me that Celiac was the new Hollywood craze these days and it was hip to have it.... Yeah, he did. Personally, I don't really like his arrogance or attitude after our first meeting. However, I do know he knows how to do an endo. He is accredited and did tell me he would take multiple samples, not just 1-4. So, I do know that will happen. And I know he is checking me for everything in one shot, so I won't have to go back for another procedure.

I worry about who reads these tests? The GI doctor or the Lab? If I go with someone else, which I would like to, but I also want this over with and am weighing my options, will the new Dr. just do the exact same thing - meaning, schedule me for an endoscopy? If I go somewhere else and run up another Dr. appt charge and end up with the same result because I have to have the test either way, did I just run up another bill for no reason? Would there be another reason to run away from this Doctor? If it's Celiac, I don't have to worry about him treating me either since I go gluten-free or do I? Are there follow-up procedures? Could I get the labs and have another Dr. read it and treat me after the endo to at least just get the procedure out the way right sway since I'm scheduled for Wednesday? Ah, so many questions...
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Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006


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#17 kareng

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Posted 04 May 2012 - 05:42 PM

If he will take Many samples of your small intestines, you might want to go ahead. Get copies any blood work done and the op/ procedure report and the pathology report. The Pathologist looks at the samples, not the doctor. He or she will send a written report to the doctor, usually about 2 pages long. It will list what the samples are, what was seen and a conclusion like " villus atrophy consistent with Celiac". You may not get a report for about a week. That would be a normal amount of waiting time.

The doctor will look with a camera. He can see obvious stuff like polyps or ulcers. That should be in his procedure report. That report should also say how many biopsies and where they were taken from. On the colonoscopy portion, if he sees polyps ( bulbous looking usually harmless balls growing in the large intestine), he will remove them and if they are large or look odd, he may tatoo a small x in the spot to check again. He will turn them over to the Pathologist to look at but a GI usually can tell if they are something to worry about. He may do a few biopsies of the large intestine just to check for colitis. These are also looked at by a Patholgist. Getting the procedure report will help you know if you have recieved all of the path reports you should. Sometimes they will all be on the same report and sometimes they will be on separate path reports.
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#18 trayne91

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Posted 04 May 2012 - 06:20 PM

Thanks for that information. I have had surgery in the past and have always made sure to get the reports. I will make sure I get these reports, also, for sure. I appreciate you helping me out. I guess I'll play along and see how it goes. I guess in the long run he knows what to do and how to do it surgery-wise and someone lab-experienced will be reading reports. I will get my answers fast and I'll go from there as to how I proceed or who I see in the future for follow-up, depending on results, his knowledge of the results, and attitude. I hope he does some reading over the weekend. I'm brand new. LOL
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Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006


#19 kareng

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Posted 04 May 2012 - 06:56 PM

Thanks for that information. I have had surgery in the past and have always made sure to get the reports. I will make sure I get these reports, also, for sure. I appreciate you helping me out. I guess I'll play along and see how it goes. I guess in the long run he knows what to do and how to do it surgery-wise and someone lab-experienced will be reading reports. I will get my answers fast and I'll go from there as to how I proceed or who I see in the future for follow-up, depending on results, his knowledge of the results, and attitude. I hope he does some reading over the weekend. I'm brand new. LOL


When you get them, you could post them here if they don't seem clear to you.

I posted what to ask for and what you should get so you can be sure you get it all. Sometimes, they will only give you the final page of the path report which has the diagnosis. The procedure report should be typed not just the handwritten note some docs make after a procedure with recovery orders and follow- up instructions. That shouldn't be an issue because GIs do so many colonoscopies ( & endos are treated the same) that they have a good system. A week to 10 days is a reasonable amount of time to expect everything to be done & in your record. They may even give you some pictures to take home. They used to give you a video tape of the whole time the camera is running but the doc's lawyers have nixed that. Too bad! I used to enjoy watching them over lunch! :D
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#20 tom

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Posted 04 May 2012 - 07:39 PM

I have my insurance straightened out now. Got that done last night. I'm actually self-employed and in a low patch right now, and am using a state-wide lower income insurance program right because Blue Cross Blue Shield was killing me with high costs. My current insurance was trying to say I was ineligible and cancelled my insurance on the day of my appt. I raised hell and have it all back and straightened out now, so that shouldn't be an issue for me anymore.
...
...
...

Phew! That's good to hear! :D There's enough to think about w/out ins issues on top of it.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#21 trayne91

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Posted 04 May 2012 - 07:40 PM

Thank you so much for that. I will. I had a hysterectomy a couple years ago and still have no idea what some of it means. It's good to know there is someone out there that can help me with the medical terminology, etc. Do you think it is really important to get the DPG test done? I don't think I had that one done and he didn't order me any blood work. I wonder if they would do it in the hospital or just not at all. Should I ask for it? (I think he's mad at me looking on the internet already, so it would be an ask and duck for cover situation). But, I don't care. I want to get everything I need. LOL on the watching over lunch! I'm nervous as all heck as always. I'll probably be getting a stiff neck soon. I always get it stuck sideways before a procedure.
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Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006


#22 trayne91

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Posted 14 May 2012 - 04:01 PM

My GI clinic just called and said my biopsies confirmed the Celiac Sprue. I am sure I will have a million questions once the initial shock wears off. I guess I just thought it would end up that I didn't have it after all. I had them fax me a copy of my reports. Looks like I got some problems in there:

I have increased intraepithelial lymphocytes of the duodenum. Endoscopicly, the folds did seem flat in the post-bulbar area.
In my stomach I have non-neoplastic gastric mucosa with minimal chronic inflammation of the lamina propria. GI did tell husband he noted stomach inflammation endoscopicly.
There was some tortuosity of the sigmoid.
Moderate sized hemorrhoids internally and within the anal canal.

I posted in the post-diagnosis forum for some help with the diet.

I am now wondering what to do about my son? Should I have his general practitioner do the blood test on him now? Nothing was mentioned to me about that. He has so many problems, I am almost positive now that I know I have it, that he may have it, also.
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Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006


#23 nora_n

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Posted 15 May 2012 - 05:54 AM

This was a very good doctor, and a good report, they diagnosed you with celiac with increased numbers of IEL. This is more and more common nowadays.

Obviously they did both an endoscopy and a colonoscopy.

With me, I never got a report, and they sure did not count my IELīs. The report just said they saw nothing.

About your son, celiac is highly genetic.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#24 trayne91

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Posted 15 May 2012 - 01:25 PM

Thank you so much for your feedback. I suppose I will call the Dr. office and tell them I was positive and ask for him to get blood work done.
I am happy to have you say my doctor did something good. He was making me nervous since he told me a lot of things wrong.
Glad to know that nothing was overlooked. :D
Sorry, to hear about your diagnosis not being seen right away. :(
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Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006



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