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My First Visit With A Gi Doc


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#1 bridgeofsighs

 
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Posted 22 January 2011 - 10:55 AM

Hello all, just thought i'd take the time to share with you the details of my first visit to the GI doctor.

Let me start by saying that my primary care physician had diagnosed me with Celiac disease through blood testing two weeks prior to this visit. Well, after showing the tests results to the GI doctor, he says in a grumpy voice, "It's borderline!". Apparently he was not convinced that i have Celiac disease and now he wants me to get an intestinal biopsy surgery. I, personally, was relieved to get a diagnosis from the blood tests because i thought i had avoided the need for this expensive biopsy procedure. Let me also say that i came well prepared for this visit to the GI doctor. I had all sorts of questions about my newly diagnosed disease, but with each question i asked, and with each comment i made about my symptoms, i felt like i was getting the cold shoulder, because in his eyes, he just wasn't convinced i had Celiac disease. Another huffy response i got was, "In all my 44 years of dealing with Celiac disease, i have never heard of those symptoms being associated with Celiac!". I got huffy right back with him and shouted, "What? Do you think i'm making this up?!" lol. He made that comment after i told him of my symptoms of popping and cracking in my joints, that i can feel, and even often hear when i move. In some joints it feels like muscles or ligaments grinding against bone, like an inflammation, but without the pain.

So, i was wondering, does anyone else experience similar symptoms with Celiac? Or possibly from an intolerance to certain types of sugars? I'm starting to suspect that sugar is the next culprit in trying to solve the mystery of what ails me, lol.

Thanks for reading, and my apologies if it doesn't make sense or just seems like a bunch of rambling... i've been a little out of sorts lately trying to figure all of this out. :)
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Diagnosed Celiac positive through blood tests: 1/03/11

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#2 sb2178

 
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Posted 22 January 2011 - 03:00 PM

hey, i used to pop and crack a lot, but now do so rarely. hmmm....?
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#3 mushroom

 
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Posted 22 January 2011 - 03:19 PM

Just as a check here, how 'borderline' were your results?

Can you post your results for us with the ranges the lab uses?

A word of warning - if you have been off gluten for some time (I know you were gluten free at the time of testing - for how long?) it could affect the results of your biopsy as well as your blood tests. Some doctors, even the "know everything about celiac" experts don't seem to know this :o
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#4 ravenwoodglass

 
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Posted 22 January 2011 - 05:05 PM

Many GI doctors know nothing about the effects of celiac on other body systems. Many also don't know the effects on the GI tract that come before total villi destruction. If you were gluten free or gluten light at the time of the blood tests that would account for lower values. Have you been doing a challenge? If you have what has been the effect? Any return of symptoms? Has being gluten free helped with your issues?
If you have been gluten free or gluten light and you really want a biopsy go back on gluten for a couple of months before you have it done. Even then you could have a false negative. After your done testing get back on the diet.
Oh and by the way my popping and crackling joints, as well as all pain in muscles and joints resolved with the diet.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 bridgeofsighs

 
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Posted 23 January 2011 - 10:03 AM

Just as a check here, how 'borderline' were your results?

Can you post your results for us with the ranges the lab uses?

A word of warning - if you have been off gluten for some time (I know you were gluten free at the time of testing - for how long?) it could affect the results of your biopsy as well as your blood tests. Some doctors, even the "know everything about celiac" experts don't seem to know this :o


Hello there, i would love it if you or someone else could help explain my test results to me. None of it makes any sense to me yet, and at the risk of sounding like a complete idiot, i'll even go as far as saying that i'm not even sure which numbers are my results, and which ones are the ranges. EEP!

Posted Image

Prior to having my blood drawn for these tests, i was on a gluten heavy diet for two weeks as instructed by my primary care physician. I think he pulled the two week thing out of thin air to be honest, because he mentioned nothing of the importance of continuing to consume gluten up until the tests for a more accurate result. I actually had to mention it, and as a result, he expressed a slight look of befuddlement. He then proceeded to pull out a large book in which he stuck his nose in for a minute or two, and came out agreeing, instructing me to consume a gluten heavy diet for two weeks. Now before all of that, i had experimented sporadically with a gluten-free diet within about a months time span... A few days on the diet, a few days off the diet, a few days on the diet, etc... just to see if i noticed a change in my behavior and how i felt. During those few short stints of being gluten free, i noticed drastic improvements in my energy levels, depression, brainfog, my ability to focus, and moods. Looking back, i approached those mini dieting stints with an 'all or nothing' type of mindset. The days i went gluten-free, i ate nothing but whole foods, nothing processed. The days that i went back on a normal diet, all i ate was unhealthy processed garbage. Gosh, i think i'm just now starting to realize how unhealthy my diet has been for the past few years. No wonder it feels as if i'm falling apart. :)

At this present day and time, i've been on a gluten-free diet for almost 3 weeks after getting the phone call from the doctor's office saying that my blood tests revealed i have Celiac disease. My symptoms aren't really improving this time, but maybe i'm reacting to trace amounts of gluten through cross-contamination? I won't write off that possibility, even though its still hard for me to fathom that i might be getting sick from a trace of a breadcrumb in my toaster, especially with my diagnosis being "borderline", and then strongly suspecting an intolerance of some sort to sugars. :( With all of the sensitivities you people mention yourselves having, i start to wonder if i have the same problems, then everything kinda mushes together into one big confusing ball of sickness. And yes, up until a few days ago i was still using my old toaster to toast my Udi's, despite how much you guys emphasize the importance of getting a new one. Check this out though, it actually started shooting sparks and smoke the other day, so i had no choice but to throw it out. Could it have been a sign? :D
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Diagnosed Celiac positive through blood tests: 1/03/11

#6 ravenwoodglass

 
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Posted 23 January 2011 - 02:45 PM

Your IGG was positive. Did your doctor do a total IGA? Some of us are IGA deficient and that will give a false negative on the IGA related tests.
If you feel better on the diet then stay on the diet consisitently for a while.
Glad to hear you were there when the toaster bit the dust.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 eatmeat4good

 
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Posted 23 January 2011 - 03:00 PM

I can't address the testing, but I can add to the popping cracking joints.
All my life my knees crack when I bend them. Using my hands, my knuckles crack from the slightest pressure. My spine would often hurt until I twisted a certain way and it cracked.

Later I developed achy joints and hips. The hips cracked too.

4 months gluten free and nothing is cracking or achy.

Very strange.

I'm sorry your Dr. didn't believe you. I have had the same experience 26 times.

The GP's don't think they can handle my symptoms and refer me to a specialist.

The Rheumatologists and Dermatologists think I'm a hypochondriac and before I get 10 symptoms listed, they give the smile and knowing glance to the nurse, and ask if I have had any testing by my my current GP. I say no...they referred me to you for that. Specialist says, I didn't think they would test you. Here is an anti-anxiety that should help you. Come back in a month if anything bothers you.

Course I don't go back.

It is infuriating. I'm glad you yelled. I just slinked out and went to lay on the couch for another month until I could get the energy and courage to go to another Dr.

I'd say just trust yourself and the reading you are doing here. I'd be thrilled if I got that close to a diagnosis. But if you wanna know what is going on inside you, it might be valuable to get the biopsy. Hope they schedule you quick though.
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#8 bridgeofsighs

 
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Posted 05 March 2011 - 02:03 PM

Hello everybody, i think i have finally mustered up enough brainpower to make another appearance. Thank you all so much for taking the time to read and give advice, it has been very much appreciated!

Your IGG was positive. Did your doctor do a total IGA? Some of us are IGA deficient and that will give a false negative on the IGA related tests.
If you feel better on the diet then stay on the diet consisitently for a while.
Glad to hear you were there when the toaster bit the dust.


Hello Ravenwoodglass. Unfortunately, the results that i posted on here are all that i got. I remember the nurses questioning each other as to why i was only getting 3 panels of the complete 4 panel blood tests. They drew my blood into 3 vials, and the above results were all i got in return. Borderline results at that. Good grief. I'm curious, what would having a weak positive blood test result mean to you? Why did this GI doc treat it like it means absolutely nothing? Then go about ordering me a biopsy surgery for a month down the road, and instructing me stay on a gluten free diet up until that point?

I can't address the testing, but I can add to the popping cracking joints.
All my life my knees crack when I bend them. Using my hands, my knuckles crack from the slightest pressure. My spine would often hurt until I twisted a certain way and it cracked.

Later I developed achy joints and hips. The hips cracked too.

4 months gluten free and nothing is cracking or achy.

Very strange.

I'm sorry your Dr. didn't believe you. I have had the same experience 26 times.

The GP's don't think they can handle my symptoms and refer me to a specialist.

The Rheumatologists and Dermatologists think I'm a hypochondriac and before I get 10 symptoms listed, they give the smile and knowing glance to the nurse, and ask if I have had any testing by my my current GP. I say no...they referred me to you for that. Specialist says, I didn't think they would test you. Here is an anti-anxiety that should help you. Come back in a month if anything bothers you.

Course I don't go back.

It is infuriating. I'm glad you yelled. I just slinked out and went to lay on the couch for another month until I could get the energy and courage to go to another Dr.

I'd say just trust yourself and the reading you are doing here. I'd be thrilled if I got that close to a diagnosis. But if you wanna know what is going on inside you, it might be valuable to get the biopsy. Hope they schedule you quick though.


Hey there, thanks for the response. :) If by chance you read this, how are you doing these days? Sounds like you had it rough for a long time, but are you doing better now?
  • 0
Diagnosed Celiac positive through blood tests: 1/03/11

#9 ravenwoodglass

 
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Posted 05 March 2011 - 02:19 PM

Hello Ravenwoodglass. Unfortunately, the results that i posted on here are all that i got. I remember the nurses questioning each other as to why i was only getting 3 panels of the complete 4 panel blood tests. They drew my blood into 3 vials, and the above results were all i got in return. Borderline results at that. Good grief. I'm curious, what would having a weak positive blood test result mean to you? Why did this GI doc treat it like it means absolutely nothing? Then go about ordering me a biopsy surgery for a month down the road, and instructing me stay on a gluten free diet up until that point?




To me, IMHO a weak positive is a positive. Your GI treating it like it meant nothing and having you stay on the diet until the biopsy to me means he knows very little about celiac as he is basically insuring that you will have a negative result. Both my children and my ex were diagnosed as celiac based on weak positive results and a positive biopsy on one of the kids but the doctor had her stay on gluten until the biopsy was done. All improved on the diet. My blood tests were always negative but they never to my knowledge tested my total IGA and because blood tests were a false negative I didn't have a biopsy until years after diagnosis. My old GI did have one sceduled but he demanded I do a second gluten challenge before it and my reaction was very bad so he canceled it and confirmed my diagnosis based on the reaction (the morning of the biopsy I was laying on the floor bleeding freely from my intestines) and the good results I had on the diet. My new GI did one because he figured he might as well since I was having a lower scope and he wanted to make sure I had totally healed.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 twe0708

 
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Posted 05 March 2011 - 02:32 PM

I have to say I just went to a new GI this past week and when I told him about this site he pretty much said you can't believe everything you read because everyone seems to blame all of their health problems on Celiac Disease. I think with this site and all of us sharing our stories helps us more than a doctor can. Yes, we still need our GIs for certain things, but all the sharing we do with one another is extremely beneficial and gives us more information than our one GI can.
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#11 bridgeofsighs

 
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Posted 05 March 2011 - 02:55 PM

To me, IMHO a weak positive is a positive. Your GI treating it like it meant nothing and having you stay on the diet until the biopsy to me means he knows very little about celiac as he is basically insuring that you will have a negative result. Both my children and my ex were diagnosed as celiac based on weak positive results and a positive biopsy on one of the kids but the doctor had her stay on gluten until the biopsy was done. All improved on the diet. My blood tests were always negative but they never to my knowledge tested my total IGA and because blood tests were a false negative I didn't have a biopsy until years after diagnosis. My old GI did have one sceduled but he demanded I do a second gluten challenge before it and my reaction was very bad so he canceled it and confirmed my diagnosis based on the reaction (the morning of the biopsy I was laying on the floor bleeding freely from my intestines) and the good results I had on the diet. My new GI did one because he figured he might as well since I was having a lower scope and he wanted to make sure I had totally healed.


Hey Raven, thanks for the quick response. :)

Seems going to that skeptical GI doc was a mistake. I still have yet to open the bill for that visit, as it sits on my kitchen table staring back at me everyday. I'm just not eager to see how much that useless SOB is gonna shake me for.

I appreciate your insight, as you have set my mind at ease. I guess i just gotta start listening to what my body is telling me from now on. Right now, my mind is telling me that i have to be more diligent in watching what i eat, because its taken me faaar too long to type this reponse. I often feel like i should qualify for being handicapped. Mentally. Can i get a parking sticker for that?

Thanks one more time!
  • 0
Diagnosed Celiac positive through blood tests: 1/03/11

#12 ravenwoodglass

 
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Posted 05 March 2011 - 03:02 PM

Hey Raven, thanks for the quick response. :)

Seems going to that skeptical GI doc was a mistake. I still have yet to open the bill for that visit, as it sits on my kitchen table staring back at me everyday. I'm just not eager to see how much that useless SOB is gonna shake me for.

I appreciate your insight, as you have set my mind at ease. I guess i just gotta start listening to what my body is telling me from now on. Right now, my mind is telling me that i have to be more diligent in watching what i eat, because its taken me faaar too long to type this reponse. I often feel like i should qualify for being handicapped. Mentally. Can i get a parking sticker for that?

Thanks one more time!


Do open that bill, you wouldn't want a worthless doctor ruining your credit. If it is high and you haven't much money ask if you can work something out for payment. If the bill is from a hospital go to the billing dept and see if they will do a sliding fee scale for you. I have one doctor whose bill was able to get dropped from $80 to $2.50 and another that went from $140.00 to $4.60. You never know if you don't ask.
As for the parking sticker, personally I wouldn't even try as it could send up a red flag and end you up with not having a drivers license.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 bridgeofsighs

 
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Posted 05 March 2011 - 03:06 PM

I have to say I just went to a new GI this past week and when I told him about this site he pretty much said you can't believe everything you read because everyone seems to blame all of their health problems on Celiac Disease. I think with this site and all of us sharing our stories helps us more than a doctor can. Yes, we still need our GIs for certain things, but all the sharing we do with one another is extremely beneficial and gives us more information than our one GI can.


I totally agree! I love how helpful and kind everyone is around here too. What a great forum!
  • 0
Diagnosed Celiac positive through blood tests: 1/03/11

#14 txplowgirl

 
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Posted 06 March 2011 - 02:43 PM

Hey Bridge, first off welcome to the forums. My take is, a slight positive is like being a little bit pregnant. :P You are or you're not.
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free





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