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Getting Confused
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24 posts in this topic

I had a low positive hit on the TTG IGA blood test.

I had my first referral GI appt. yesterday.

I have done a lot of research in the last 2 weeks.

The Dr. wants to do an endoscopy and colonoscopy to check for everything, not just Celiac.

I asked about getting a negative biopsy, but having a positive blood test and he looked at me confused. I told him I read you can miss the bad spots sometimes and he told me that is impossible because with Celiac Disease your entire intestine will be all messed up, not just a part of it and what I read is certainly not the norm.

I asked about having a lower test score, although positive, meaning it would be beginning stages possibly and not done much damage yet - again,, I was nuts.

I did a lot of reading about how Celiac can start after a surgery or illness, etc. I knew I had a hysterectomy in 2010 and since then I've battled a low Vitamin D (17, 30 is low normal), recurring yeast infections, anxiety, bloating, migraines, etc. (all which I seen can be symptoms of Celiac) This all started after that. He looked at me confused and said my GI stuff he couldn't blame on those things and seemed more interested in only my bowel movements. He told me you are born with Celiac and it will just manifest itself more as you get older.

I'd like to get the test to get it over with and know. I also get this feeling I learned more on the internet in the last 2 weeks. He seemed mad about that, too.

My insurance company is giving me the run around as well and I'm scared they will cancel me before biopsy.

I don't know if I should just go gluten free and skip all these medical bills, which I might end up not covered for anyway - or just go with it and see what happens.

I'm supposed to have my procedures done next Wednesday in the early morning.

Do these Dr.s not know so much? Has anyone else experienced this? What did you do? See someone else or at least just go get your procedure and see the results or did you just skip it or what? I'm wondering if it's even better to skip it because if you get a formal diagnosis you have more insurance problems. But is there a possibility they find more or something else, extend of damage? This is all confusing.

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http://www.celiacdiseasecenter.org/C_Doctors/C04-Biopsy.htm

This is info for doctors from Celiac doctors. Maybe you could show him this first? And discuss it?

I would say, run, don't walk, from this doc but insurance likely won't pay if you go to someone else.

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Sheesh that is truly horrible for a practicing GI doc to think the entire intestines would show celiac damage homogeneously. Even just one proper positive biopsy of a celiac would show differences betw samples. Or maybe he's never read more than the Summary on the lab report? Or does the lab he's using only look at one sample?

That's nuts.

Not knowing that the theory of a celiac trigger has existed for decades(?) is pretty poor too, but not diagnostically harmful to the level of having no clue about snipping more than one piece from more than one place. Arrrrrrgh!! :angry:

Can an Insurance Co really still cancel you for making claims? Or perhaps rather in anticipation of future claims? Thought that part of the Health Care Bill was already in effect.

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Oh, ai yeee yeee yeeee. :ph34r:

What a trip.

Ask him if he's ever heard of the neurological form of celiac, which causes brain damage and ataxia, and see what he says.

If he says there is no such thing........ tell him you heard a rumor on PubMed, but you haven't asked Snopes to verify it yet. ;)

http://www.ncbi.nlm.nih.gov/pubmed/12566288

http://www.ncbi.nlm.nih.gov/pubmed/12933922

After one year there was improvement in ataxia reflected in all of the ataxia tests in the treatment group. This was significant when compared with the control group. The diet associated improvement was apparent irrespective of the presence of an enteropathy.

CONCLUSIONS:

Gluten ataxia responds to a strict gluten-free diet even in the absence of an enteropathy.

- EVEN IN THE ABSENCE OF AN ENTEROPATHY !!! What could possibly be WRONG WITH THOSE PEOPLE ?! :PB)

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Oh, ai yeee yeee yeeee. :ph34r:

What a trip.

Ask him if he's ever heard of the neurological form of celiac, which causes brain damage and ataxia, and see what he says.

If he says there is no such thing........ tell him you heard a rumor on PubMed, but you haven't asked Snopes to verify it yet. ;)

http://www.ncbi.nlm.nih.gov/pubmed/12566288

http://www.ncbi.nlm.nih.gov/pubmed/12933922

- EVEN IN THE ABSENCE OF AN ENTEROPATHY !!! What could possibly be WRONG WITH THOSE PEOPLE ?! :PB)

What's wrong with these doctors is they still refuse to think that celiac is anything more than an GI disorder. I had ataxia and DH for about 30 years before GI issues appeared.

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there was an article last year about why there were half as many diagnosed on one coast of the U.S. compared to the other, I mean with the same number of endoscopies.

Turned out that on one side they took only two samples, and on the other coast they took four samples....and we know celiac typically is patchy.

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Can an Insurance Co really still cancel you for making claims? Or perhaps rather in anticipation of future claims? Thought that part of the Health Care Bill was already in effect.

I didn't say they would cancel you. They just dont want to pay for you to go to another doctor for the same service. For instance, you have the endo & he takes one sample & says you are fine. You won't find an insurance company that will let you have another endo next month for the same reason. You would have to really fight, for months or years, to convince them that the previous doctor was negligent.

another example: You have your tonsils out. Then a year later, you find a doc that wants to take your tonsils out. No insurance company would pay for that. ( don't give me "what ifs" etc for the tonsil thing its an easy to understand example.)

I'm saying, make another appointment before the endo to show him info from a reputable Celiac center. If he still won't learn anything, you will have to file a complaint with your insurance company & find another doctor. This is easier than finding out after that he did the endo wrong.

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Karen? I was replying to the OP.

Here's what the OP said.

...

My insurance company is giving me the run around as well and I'm scared they will cancel me before biopsy.

..

I'm not sure what to think of seeing your reply address me as if I'm just now getting an endoscopy. :huh: I KNOW you know I've been here awhile.

Anyway, for the OP again - does anyone know if the Ins Co can still cancel trayne91 like in the past or did that part of the ACA/Health Care/Obamacare already take effect, thus lessening one of the OP's concerns?

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Karen? I was replying to the OP.

Here's what the OP said.

I'm not sure what to think of seeing your reply address me as if I'm just now getting an endoscopy. :huh: I KNOW you know I've been here awhile.

Anyway, for the OP again - does anyone know if the Ins Co can still cancel trayne91 like in the past or did that part of the ACA/Health Care/Obamacare already take effect, thus lessening one of the OP's concerns?

I should have put that in quotes meaning I didn't tell the op that he would get cancelled but probably couldn't get them to pay for 2 procedures. I thought you thought I said he would get cancelled. :unsure: Clear as mud?

They are not likely to cancel him for having an endo or even Celiac. Depending on where he gets his insurance, they could charge more for next year. Insurance thru a job wouldn't be cancelled or charged more because of a diagnosis. If purchasing privately, they could charge more, possibly. Just as they would for someone with a history of cancer.

I think the more likely concern is that the insurance co would not approve an elective procedure like an endo without enough documentation from a doctor.

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I didn't bring up insurance worries or say she'd get cancelled. :huh:

The OP said she was worried that her ins might be canceled.

I said I thought they couldn't legally do that anymore.

It's something they had been doing for a long time.

I was mostly hoping that someone following the implemention of - what should we be calling the health care bill here? - the ACA more closely than I would weigh in and ease the OP's worries.

It's been a valid concern for patients in the past & won't be in the future, right?

P.S. As far as employment-based health insurance I gotta believe the OP wouldn't have originally mentioned cancellation worries if that were the case.

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I didn't bring up insurance worries or say she'd get cancelled. :huh:

The OP said she was worried that her ins might be canceled.

I said I thought they couldn't legally do that anymore.

It's something they had been doing for a long time.

I was mostly hoping that someone following the implemention of - what should we be calling the health care bill here? - the ACA more closely than I would weigh in and ease the OP's worries.

It's been a valid concern for patients in the past & won't be in the future, right?

P.S. As far as employment-based health insurance I gotta believe the OP wouldn't have originally mentioned cancellation worries if that were the case.

http://www.csmonitor.com/USA/Politics/2010/0324/Health-care-reform-bill-101-rules-for-preexisting-conditions

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Thx Lisa.

D'oh I went to link & it's got a lot about the uninsured, pre-ex conds, & kids but I couldn't find anything there about insured ppl getting dumped.

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Thx Lisa.

D'oh I went to link & it's got a lot about the uninsured, pre-ex conds, & kids but I couldn't find anything there about insured ppl getting dumped.

I really don't think that a person can be "dumped" for a preexisting condition.

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Edit: Now just a cottonpickin minute ya psilly Goose! That last one got edited WHILE I'm off reading the link that was there a minute ago! ( or I am goin nuts)

Ok. ....some lines can be disregarded now...

******

She has health ins already.

I think this http://articles.latimes.com/2009/jun/17/business/fi-rescind17 is what the OP was concerned about.

"Executives of three of the nation's largest health insurers told federal lawmakers in Washington on Tuesday that they would continue canceling medical coverage for some sick policyholders, despite withering criticism from Republican and Democratic members of Congress who decried the practice as unfair and abusive."

And further down:

"The committee's investigation found that WellPoint's Blue Cross targeted individuals with more than 1,400 conditions, including breast cancer, lymphoma, pregnancy and high blood pressure."

The bill addressed this but I wished I could tell the OP that it's already illegal to cancel an existing, paid-up policy.

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Edit: Now just a cottonpickin minute ya psilly Goose! That last one got edited WHILE I'm off reading the link that was there a minute ago! ( or I am goin nuts)

Ok. ....some lines can be disregarded now...

So glad I have nothing else to do tonight TOM! :angry: Yes, I deleted because it really did not answer your question. B)

Surely, there are members here who can decipher the Obama Health Care Place or insure the OP that all will be well.

Ok! I will start a new thread. It's a valid question. Off I go.....

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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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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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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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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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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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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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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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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 IEL

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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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    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
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