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What The Doctor Said


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23 replies to this topic

#1 KathiSharpe

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Posted 19 August 2009 - 03:28 AM

I am so encouraged by my appointment with an endocrinologist yesterday that I'm practically floating on air this morning.

I sort of unloaded on her - all the gastro problems, the off- then on- again gluten free lifestyle, the possible false negative blood test due to me being gluten-free at the time (she was outraged that a doc did that!)... the complications from the synthroid and the other doc's refusal to put me on something else...

And so here's what she's said -

#1 - a diagnosis of celiac disease is absolutely essential. She says all celiacs should have endoscopy to look for (lyphoma??) cancer of the intestines, and this should be done every five to seven years. She alluded to other potential complications but didn't say what they were.


#2 - Even if my tests come back that I am not celiac, I should stay gluten free for life. Period. No more arguing or going back and forth, and no more doctors telling me I'm off-base or silly or wrong, because *obviously* gluten is my problem.
She's already put in my chart that gluten-free is a necessity for me.

#3 - She's going to arrange for a compounding pharmacy to make all my medicines - gluten-free and acacia-free (a binder that might be what gives me trouble with the synthroid). She might even be able to get them to combine everything into one pill (bliss!)

#4 - Despite other doctors looking at me like I just stepped off the spaceship, there IS a link between gluten intolerance (celiac and otherwise), thyroid disease, and PCOS. (She also knew that there's a LOT of overweight celiacs out there who lose weight once they go gluten-free)

This is what I was hoping and praying for!

So it leaves me with a question. Someone gave me a helpful list of tests that should be done, but I forgot to print it out before I left. What Dr. B ordered was a "celiac panel" -- is that the same tests? Or, when I go back, should I ask for more?

Thanks everybody!
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#2 mindyandy420

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Posted 19 August 2009 - 05:20 AM

Sounds like you found a GREAT Dr. After your years of searching FINALLY! :)
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#3 tygwyn

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Posted 19 August 2009 - 05:35 AM

Isnt it great when you have a positive appt with a doctor... finally!!

Whereabouts in the world are you??? I'm sure others would like to know where this doc is:)

Thankfully I'm also lucky to have a doctor who agrees with the link between thyroid disease, insulin resistance and gluten intolerance. My tests came back negative but he has still given me a letter to confirm that I am gluten intolerant.
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#4 Mskedi

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Posted 19 August 2009 - 05:58 AM

Wow... what an awesome doctor! I'm hoping mine will react similarly... I keep putting off making the appointment.
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#5 ravenwoodglass

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Posted 19 August 2009 - 06:21 AM

Your doctor sounds like a really good one. I wish I could find one as knowledgable as she is.
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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)

#6 jasonD2

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Posted 19 August 2009 - 06:29 AM

wait i'm confused- so even after going gluten-free she thinks an endoscopy is still necessary every 5-6 yrs? i dont know if thats necessary and im sure people dont want to be subjected to that procedure on an ongoing basis
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Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

#7 jerseyangel

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Posted 19 August 2009 - 06:31 AM

What Dr. B ordered was a "celiac panel" -- is that the same tests? Or, when I go back, should I ask for more?

Yes, the Celiac Panel is what you want.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA


Congrats on finding such a knowledgable and sensible doctor :D
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#8 OptimisticMom42

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Posted 19 August 2009 - 06:31 AM

My tests came back negative but he has still given me a letter to confirm that I am gluten intolerant.



My son's blood work also came back negative but our Dr. wrote a letter saying that he needed to be allowed to maintain a gluten free diet. For those who haven't already heard his story........my son has neurologic responses to gluten, as well as skin and GI responses. In June '08, when he was 17 yrs old, he was so sick, angry and frustrated that he intentionally crashed his car into a parked car. While in jail, where his diet was bologna, bread and ramen noodles, he was even sicker and was taking tylenol, sudafed, imodium, antibiotics, steroids and was hearing voices so a psychotropic probably should have been prescribed. When my sister bailed him out we took him to several dr's and he spent some time in a hospital. It was celiacs. He has gone to court for sentencing twice. At the last court date the lawyers started yelling at each other and the judge revoked Justin's bond. So he has been back in jail for two weeks. Because of the Dr's letter the jail is providing Justin with a gluten free diet. He is clear headed and healthy but scared. Today we go back to court. There are 10 of us going in two cars to show the judge that Justin has friends and family who love him and want him to come home.

Without that letter from the Dr. my son would be in a much more serious situation. He would be back to being physically and mentally ill in a jail full of people who saw him as an easy target. Last year they beat him up and stoled his commissary goods. This year nothing has happened yet.

Enough ranting from this worried mom, I just wanted to make the point that the letter from the Dr was very important for us.

Take Care RA
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Dx Celiacs March '09

#9 flourgirl

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Posted 19 August 2009 - 06:54 AM

wait i'm confused- so even after going gluten-free she thinks an endoscopy is still necessary every 5-6 yrs? i dont know if thats necessary and im sure people dont want to be subjected to that procedure on an ongoing basis


Depending on age, a colonoscopy is suggested every 5 years or so. Why not throw in an endo....just to monitor that there is no new damage....possibly caused by something you may not know is causing you harm? I for one (tho I really can't stand the thought of going through that again) plan on doing just that. :)
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#10 Darn210

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Posted 19 August 2009 - 06:55 AM

I sort of unloaded on her - all the gastro problems, the off- then on- again gluten free lifestyle, the possible false negative blood test due to me being gluten-free at the time (she was outraged that a doc did that!)...



Are you gluten free now?? . . . because a if you are, that Celiac blood panel will most likely come back negative again.
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Janet

Experience is what you get when you didn't get what you wanted.


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#11 jasonD2

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Posted 19 August 2009 - 07:23 AM

I agree about the colonoscopy, but not so sure bout the endo. my doc wants to do periodic stool tests..u can actually tell a lot more from them than an endo, so thats what i plan on doing and i think everyone should as well
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Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

#12 Gemini

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Posted 19 August 2009 - 08:07 AM

wait i'm confused- so even after going gluten-free she thinks an endoscopy is still necessary every 5-6 yrs? i dont know if thats necessary and im sure people dont want to be subjected to that procedure on an ongoing basis


Although this doctor sounds very good and very professional, I do not entirely agree with her reasoning on endoscopy. Positive blood work or extreme positive dietary response IS a diagnosis for Celiac Disease and endoscopy is not always warranted. From all I have read, and this includes information from the leading Celiac researchers, the risk for lymphoma pretty much goes back to the same risk as the general public, if a person adheres to a strict gluten-free diet, period. These are the same scare tactics that doctors use to badger people into having a colonoscopy and making the decision to have screening tests should not be based on fear of what may or may not happen 20 years down the road. For those who think they are necessary (like suffering from on-going symptoms) or have a strong family history for a particular problem, then having these done to achieve peace of mind is perfectly acceptable. I think using less invasive testing for starters is a good way to go also and those who choose this route should not be treated like they are making life altering mistakes. I just refuse to go through my life worrying about cancer that, most likely, will never happen. If you do the basics for good health, including not worrying excessively about disease, and keep track of any changes, however subtle, that may occur and getting THOSE checked out when appropriate, guess what? You'll probably make it just fine to old age, like millions of people before have done.
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#13 ravenwoodglass

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Posted 19 August 2009 - 08:09 AM

I agree about the colonoscopy, but not so sure bout the endo. my doc wants to do periodic stool tests..u can actually tell a lot more from them than an endo, so thats what i plan on doing and i think everyone should as well


For some of us having repeat endos is a really good idea. There can be precancerous changes that can occur when celiac has gone undiagnosed for many years. If those are found on the first endo then it is a good idea to have screening done just as we screen for colon cancer, IMHO. I wish my doctor had done an endo when he did my last colonscopy. They did find a good sized polyp but I am more concerned with the metaplasia that was found in my duodeum on my last endo. That I would like to followed up on but I will have to wait now for my 5 year checkup.
  • 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)

#14 TrillumHunter

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Posted 19 August 2009 - 08:35 AM

That's my reasoning as well, Raven. Many of us were undiagnosed for more than a decade. While the panel can diagnosis celiac, it cannot tell you what damage it has done.
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#15 Gemini

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Posted 19 August 2009 - 08:36 AM

For some of us having repeat endos is a really good idea. There can be precancerous changes that can occur when celiac has gone undiagnosed for many years. If those are found on the first endo then it is a good idea to have screening done just as we screen for colon cancer, IMHO. I wish my doctor had done an endo when he did my last colonscopy. They did find a good sized polyp but I am more concerned with the metaplasia that was found in my duodeum on my last endo. That I would like to followed up on but I will have to wait now for my 5 year checkup.


Metaplasia is not that uncommon and does not necessarily go to cancer. It's common for women to have that problem on their cervix...I had that problem a long time ago and the cause was a very short stint on the birth control pill. Yes, the pill is not as safe as many would have women believe. The doc's wanted to do much more invasive testing and I refused...it's not pleasant at all. My fix was to have repeat Pap smears every 3 months to see what would happen and it cleared up all on it's own and I have never had an abnormal Pap since. That was 27 years ago. Pre-cancerous changes can and do heal on their own, if the right steps are taken to help it happen. You won't hear that from the medical profession, though, and I do understand that is partly true due to liability concerns.

Everyone may have cancer cells in their body at some point but the important thing is to keep your immune system as healthy as possible because it's your immune system which keeps them in check.
I personally think Celiac is an added protection against cancers that many may suffer from because the smart Celiacs follow the diet religiously and a good Celiac diet is one which is anti-cancer anyway.
I know I eat more veggies and fruit in one day than most eat in a week. Have you noticed that many who do get sick are those who eat crappy diets, loaded with gluten, dairy and sugar? Cancer cells feed off of sugar at an amazing rate so keeping blood sugar levels low is half the battle.
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