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Doctor Officially Diagnosed Me With Celiac Without Telling Me!


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11 replies to this topic

#1 greenbeanie

 
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Posted 21 May 2013 - 09:08 AM

I am beyond frustrated and don't know whether I should be happy or angry about this. As I've mentioned in other posts, I'm a 37-year-old woman who's had symptoms consistent with celiac my whole life, but it was always brushed off as stress, anxiety, or "fast metabolism". I just switched PCP's and saw my new doctor for an intake visit and routine physical last month. During that time, I explained my problems with wheat and all sorts of other chronic symptoms. At that point I still thought it was a wheat allergy, although an IgE test was negative. The word "celiac" never came up in our conversation. But the new doctor did take my symptoms seriously and wrote "extremely intolerant of wheat" on my visit summary papers.

 

After lots of research this past month, I emailed her to say I thought I should be tested for celiac. She asked me to make an appointment to discuss it in person, and I took the first available appointment (which is tomorrow am). I'm prepared with a chronological list of symptoms, scientific literature, a list of tests I want her to order, etc. I've been thinking my main challenge would be to get her to take the possibility of celiac seriously.

 

But just now I checked my online health insurance records, and I saw that she officially diagnosed me with celiac after my last visit! She put in the correct diagnostic code and everything. But she never told me she thought I had celiac, did not tell me to strictly avoid gluten, or anything else! (I had reduced wheat already, but I was cooking with barley flour because I though it was a wheat allergy, so I was still consuming gluten regularly.)

 

Now I'm worried about having the opposite problem at my visit tomorrow - instead of trying to convince her to take the possibility of celiac seriously, I need to convince her to actually order the diagnostic tests so we can know for sure! (I do really need to know because my daughter has similar symptoms, and doctors keep brushing those concerns off too.) And she'd seemed so competent, but now I question that too, because if she seriously thought I have celiac she certainly should have made sure I knew not to eat any gluten! And she didn't even mention it!

 

And my health insurance records also show that I was officially diagnosed with "anemia" and "metabolic disorder" after ER visits in 2010 (when the doctors eventually ruled out MS but never made sense of my multiple, seemingly-unrelated symptoms). My PCP at the time said all my blood tests were normal and that I was "fit as a fiddle" and did no follow-up! I am just so furious I can't even see straight.

 

Sorry for the rant...I had been feeling so hopeful about finally having a doctor take me seriously tomorrow, and now it seems like she might err in the other direction and make a diagnosis without even running the most basic tests to verify it.


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


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#2 kareng

 
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Posted 21 May 2013 - 09:26 AM

She may not have diagnosed you with Celiac.  The person who coded the "wheat intolerant" might have found that the code for Celiac disease best fit that diagnosis.  The codes can fit a spectrum of issues.

 

Give her a chance tomorrow.  Have you been eating gluten?  if so, ask for the blood tests.  If not, there is no reason to get the blood tests.


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#3 nvsmom

 
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Posted 21 May 2013 - 09:28 AM

((HUGS))  I think you'll find a lot of us have been lost in the shuffle - you're not alone. We just have to rethink doctors as a tool we use for getting the health care we need... not all tools are created equal... my doctor is a tool too. ;)

 

I think you should make an appointment for your daughter at the same time.  Perhaps the doctor will move ahead with your concerns.

 

Good luck.


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#4 IrishHeart

 
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Posted 21 May 2013 - 11:04 AM

"Diagnostic" codes are used in this country for insurance purposes--- not for actually diagnosing someone.

 

They have to put something on the form to justify their time with you as well as reasons for running tests.

 

I've seen all kinds of codes on my insurance forms (from Crohn's to thyroid disease to Ulcerative colitis--but I have none of those) while undergoing testing before DX. They are "possible" diagnoses, in effect.

 

 

She has not diagnosed you without telling you, I am sure.... so please be patient and see this new doc with an open mind.

 

Good luck tomorrow! 


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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#5 Jestgar

 
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Posted 21 May 2013 - 11:18 AM

My doc always told me what she was possibly "diagnosing" me with to be sure that the insurance would cover the tests.  Often had nothing to do with what she really thought the problem was.


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#6 Deaminated Marcus

 
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Posted 21 May 2013 - 02:18 PM

Just thank her for having been receptive to your Celiac and wheat concerns.

Be enthusiastic: Oh thank you for understanding my problem, do you think you can test me for this?
If I have to see a specialist I'd like to have the tests to confirm this is my problem.

(show her the celiac panel you want to do.)


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#7 greenbeanie

 
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Posted 21 May 2013 - 03:11 PM

Thanks for your reassurances, everyone. She probably did just write that as the closest code to my symptoms, without intending it as an official diagnosis. Hopefully if she actually suspected celiac, she would have mentioned it to me!

 

I do know that she wrote the code herself because I saw her write it on the visit summary paper before she copied it for me (I just didn't realize what the code stood for until today, since she only wrote down the numbers). This was at a routine annual physical, so she didn't need a diagnostic code to justify the appointment. And she didn't suggest any testing or follow-up, so there's no reason she would have written down a diagnosis to justify tests for the insurance company. (The only reason we're discussing testing now is because I contacted her a month later to ask about it. But at the time, no tests were even being considered.) So I still find it odd, but I probably shouldn't read anything into it. Hopefully it will become clear tomorrow! 


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#8 GottaSki

 
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Posted 21 May 2013 - 03:33 PM

Yep those codes are often silly.  I have "allergy" to "gluten meal" in my chart as that was the only way the doc could figure out to code my medical record to note I should have NO GLUTEN -- you seem ready for your appointment and think it bodes well that your new doctor did not dismiss your issues.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 greenbeanie

 
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Posted 22 May 2013 - 08:00 AM

Update: I just wanted to follow up with what happened at my visit this morning, in case anyone finds this thread later and wonders about the outcome.

 

It was a productive appointment, but it's very good that I took the initiative because there was indeed a misunderstanding. Based on what I'd said at my last visit, my doctor had intended to order the blood tests before. However, she'd only ordered a basic CBC and we hadn't discussed celiac at all. When I came in today, she thought we'd already ruled out celiac, and she was surprised when I told her that she'd never ordered the tests or discussed that suspicion with me. Anyhow, it was clearly an oversight (but well-intentioned) and would have fallen through the cracks again if I hadn't pursued it.

 

Today she agreed in principle to order the full celiac panel with all the tests I listed, but their lab doesn't do DGP or EMA. I insisted three times that she at least make sure to order the total serum IgA (along with tTG), and she sent the order electronically but I'm pretty sure she included that. We'll see when the results come back. She was trying to be helpful but obviously wasn't familiar with the tests and didn't seem convinced that the total IgA was even relevant, so I'm glad I brought several factsheets from celiac centers that backed me up. She also ordered some but not all of other tests I'd requested - various vitamins and minerals, ferritin, complete metabolic panel, thyroid, etc., but she would not order all of the vitamins at this point. She also referred me to a GI doctor even without waiting for the results, which is great. I am so happy to have a doctor who's finally taking this seriously (even if she isn't quite as knowledgeable as I'd like). 


  • 0

Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#10 1desperateladysaved

 
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Posted 22 May 2013 - 09:22 AM

Oh, I felt over-all happy for you with that!  Now, you are getting somewhere.  I hope any damage will heal quickly and well.

 

Diana


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#11 GottaSki

 
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Posted 22 May 2013 - 09:26 AM

Update: I just wanted to follow up with what happened at my visit this morning, in case anyone finds this thread later and wonders about the outcome.

 

It was a productive appointment, but it's very good that I took the initiative because there was indeed a misunderstanding. Based on what I'd said at my last visit, my doctor had intended to order the blood tests before. However, she'd only ordered a basic CBC and we hadn't discussed celiac at all. When I came in today, she thought we'd already ruled out celiac, and she was surprised when I told her that she'd never ordered the tests or discussed that suspicion with me. Anyhow, it was clearly an oversight (but well-intentioned) and would have fallen through the cracks again if I hadn't pursued it.

 

Today she agreed in principle to order the full celiac panel with all the tests I listed, but their lab doesn't do DGP or EMA. I insisted three times that she at least make sure to order the total serum IgA (along with tTG), and she sent the order electronically but I'm pretty sure she included that. We'll see when the results come back. She was trying to be helpful but obviously wasn't familiar with the tests and didn't seem convinced that the total IgA was even relevant, so I'm glad I brought several factsheets from celiac centers that backed me up. She also ordered some but not all of other tests I'd requested - various vitamins and minerals, ferritin, complete metabolic panel, thyroid, etc., but she would not order all of the vitamins at this point. She also referred me to a GI doctor even without waiting for the results, which is great. I am so happy to have a doctor who's finally taking this seriously (even if she isn't quite as knowledgeable as I'd like). 

 

This is a very good result.  A doctor that listens to her patient is worth her weight in gold (IMO)...my primary is similar...she admits when she is not familiar with something and either finds a way to order the tests I have on my list or she gets me to the specialty that can. 

 

While you are waiting for your blood, I suggest researching which GIs in your plan/group are most knowledgeable of Celiac Disease -- sadly not all GIs are up to date with current Celiac Disease / Non Celiac Gluten Intolerance.

 

Good Luck and thanks for the update :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 Deaminated Marcus

 
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Posted 22 May 2013 - 12:54 PM

You found a good student.

Keep on teaching her and she'll be able to help others who have Celiac symptoms.  :lol:  


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