What The Doctor Said

[KathiSharpe]

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!

[mindyandy420]

Sounds like you found a GREAT Dr. After your years of searching FINALLY!

[tygwyn]

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.

[Mskedi]

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

[ravenwoodglass]

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

[jasonD2]

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

[jerseyangel]

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

[OptimisticMom42]

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

[flourgirl]

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.

[Darn210]

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.

[jasonD2]

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

[Gemini]

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.

[ravenwoodglass]

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.

[TrillumHunter]

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.

[Gemini]

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.

[jerseyangel]

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.

Yep, I agree and so does my GI.

[Ahorsesoul]

Please share your doctors name in a topic with you town and state so others can make an appointment. It's rare to find a doctor who understand celiac! Each patient can determine what tests they want done according to their way of thinking.

[Roda]

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!

Be forwarned that depending on your insurance and lab, a "celiac panel" may not exist. This is what happened with my two boys. There allergist/immunologist sent lab slips for a celiac pannel. I took it to the lab and they told me that there was no such thing as a "celiac pannel" and the only tests that were run was a total iga and the ttg. I was pretty upset. So I'm going to have to have them redone, probably 1 year from the original test date so the insurance will pay for it, and have them write out each individual test seperately to get all of it done. Check with your lab to see if they do this too and have the doctor write the order differently if necessary.

[KathiSharpe]

Answering a couple questions -

#1 - Dr. Balen (endocrinologist) is in Greensboro, NC. I can post the name of her practice, phone #, etc. if anyone's interested. She's part of a largish conglomerate of docs of different specialties.

#2 - I'm 99% sure that she will be referring me to the GI docs within her team either to do more advanced testing for diagnosis, or if the labs come back positive, to check for cancer and other trouble.

#3 - I've only been gluten free for 18 days - she said generally speaking 3 months for it to be false-neg on the blood test. However if it's negative we're not stopping there, so it's ok.

#4 - I'm going to have to research on the 5-year endoscopy thing. I've never had a 'scopy of any sort and I'm hoping to avoid them as much as possible I try to balance my own health and sanity with what docs want to do, which might mean having one now, and then having one in ten years, or something... unless they can use the little camera, or MRI technology.

She did allude to "the longer one goes before diagnosis" and also "if you cheat on the diet" - she didn't say in so many words, but I have read that those people tend to be at higher risk for complications. Given that I'm pushing 40 (and pushing hard!) I'd definitely fall into the first category.

[Fiddle-Faddle]

There are some very good reasons listed above for repeat endoscopies.

However, there is another aspect to be considered: I believe that it's possible that something invasive like and endoscopy, ESPECIALLY if biopsy samples are taken, could trigger problems.

Scar tissue can sometimes trigger more scar tissue to grow...and grow...and grow.

Anything irritating something inside your body (and a biopsy is cutting into you, so yes, it can be very irritating) can trigger different kinds of reactions. Is there any research on the safety of repeated biopsies? What if that in itself could cause precancerous changes?

I know someone with lupus, who has to undergo repeated surgery to remove adhesions caused by the previous surgery to remove adhesions... She is now worse off than if she'd never had the first exploratory surgery (where they found nothing, but that's what initially caused adhesions).

An endoscopy is an invasive procedure, and anesthesia, even the "light sedatation," does carry risks, risks that my doctor says "carry morbidity risk." I can see making a case for it for diagnostic purposes in someone with symptoms that cannot be explained or diagnosed in any other way, but to do so every 5 years on an apparently healthy, asymptomatic individual does not make sense to me.

Otherwise, your doctor sounds absolutely fantastic. Perhaps some of us who cannot find a good endocrinologist might call her and ask if she could recommend one in our area!! Maybe you could ask her to make out a list of other endos areound the country whom she would recommend and leave it with her secretary.

[BettyinMD]

Hi Kathi-

I am curious to know which came first for you: the hypo-t, or the gluten intolerance?

[ravenwoodglass]

Answering a couple questions -

#1 - Dr. Balen (endocrinologist) is in Greensboro, NC. I can post the name of her practice, phone #, etc. if anyone's interested. She's part of a largish conglomerate of docs of different specialties.

#2 - I'm 99% sure that she will be referring me to the GI docs within her team either to do more advanced testing for diagnosis, or if the labs come back positive, to check for cancer and other trouble.

#3 - I've only been gluten free for 18 days - she said generally speaking 3 months for it to be false-neg on the blood test. However if it's negative we're not stopping there, so it's ok.

#4 - I'm going to have to research on the 5-year endoscopy thing. I've never had a 'scopy of any sort and I'm hoping to avoid them as much as possible I try to balance my own health and sanity with what docs want to do, which might mean having one now, and then having one in ten years, or something... unless they can use the little camera, or MRI technology.

She did allude to "the longer one goes before diagnosis" and also "if you cheat on the diet" - she didn't say in so many words, but I have read that those people tend to be at higher risk for complications. Given that I'm pushing 40 (and pushing hard!) I'd definitely fall into the first category.

Thank you so much for posting the location and the doctor. I have been thinking about relocating and almost jumped for joy when I saw this as I am looking to move to NC hopefully within a year ar so.

As for the endo. Personally I would prefer that to the pill cam. With the endo most times there is no real prep and you go in, go to sleep, wake up a short time later and go home. With the pill cam it is not unusual for the person to have to stay in the facility for the day. Not something I personally would enjoy. Also with the pill cam they cannot take biopsies of anything that looks suspisious so if something needs to be biopsied they would need to do the endo anyway.

[DivasDare]

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.

ITA. I've gone too many years with the symptoms progressively getting worse before determining the exact issue. I'd prefer to have the test done, just as I have mammograms for prevention.

Ravenwood, hope your ok.

[KathiSharpe]

Hi Kathi-

I am curious to know which came first for you: the hypo-t, or the gluten intolerance?

Hi Betty!

I'm not sure. It's a lot easier to answer, "Which came first, the chicken or the egg?"

My KNOWING ABOUT the hypo-t came first - quite a few years ago - but it was all nicely controlled by meds with few complications until relatively recently (over the last 5 or 6 years).

But if I'd been gluten-free from childhood would I even have hypo-t? now that is an interesting question...