Be Your Own Best Advocate In The Face Of Ignorant Docs

[dawnhulio]

I'm new here, have to say I should have registered a long time ago when I first started researching Celiac Disease.

Background: I'm a 31-year-old female, Type 1 Diabetic since the age of four (I use an insulin pump to treat this), and was diagnosed with autoimmune thyroid disease (a.k.a. Graves' Disease) just over five years ago. Thyroid has been 'irradiated' to death and I now take a daily hormone replacement for that as well. Gotta love those hormones.

At any rate, for just over a year now I've been feeling...like...utter...you...know...what. Exhaustion, fluctuating blood sugars, fluctuating thyroid hormone levels, fatigue, abdominal cramping / bloating, bouts of constipation followed by bouts of - what else? - diarrhea. I VERY easily bruise, and when I poke my fingers for glucose testing they don't want to stop bleeding, many times at work, even fifteen-twenty minutes later I'll realize the mouse or keyboard seems a bit sticky - because I've managed to schmear blood all over it. Started breaking out in a weird, super-itchy, blister-like rash that comes and goes. (This was attributed to mold last year in my office... but there isn't any mold there... hmm... and I still have the rash, if it clears up I even break out in it at home).

Went to my general care provider a while back (who I am, to say the least, less than impressed with), who always asks these two questions: 'Where have your glucose levels been?' 'Uh, pretty normal, 70-140.' (BTW, my A1C reading is usually below a 5.5, anything below a 7.0 is considered stellar for a diabetic). 'Have you had your thyroid levels tested?' 'Yeah, it's at a 2.' (For the lab used here the norm is between a 2 and 3). 'You're probably just stressed out. I can prescribe you some Zoloft.' Um...no! What I always want to shoot back is 'I'm not depressed, you twit, stop trying to give me a pill, and LISTEN TO ME! I'm telling you something is up,' but what happens is she poo-poo's me and sends me on my way. On our last visit she said 'Welcome to real life.' Excuse me???

Took this up with my endo who I see for my diabetes / thyroid. She basically gave me the same thing, except for 'Well, work stress can cause you to need a bit more thyroid hormone, so we'll bump it up and see what happens.' Okay, but then a few months later - no changes. And hello, none of this would create problems with my lil' intestines, with all the bloating and the pain and such.

SOOOOOOO...I decided to start reasearching some things on my own. Not only did I find out that, officially, I'm diagnosed as a 'Polyglandular AutoImmune Syndrome Type III', I'm genetically hugely susceptible to other autoimmune problems such as lupus, Addison's Disease, and lo and behold...Celiac!!! At that point I started looking at symptoms for each, and the only one where I could go down and make check marks down the list was Celiac. I found SO MUCH out there about the relationship between other autoimmune problems and Celiac that I was honestly scared, and a bit flabbergasted that NONE OF THIS WAS EVER MENTIONED TO ME, EVER, by any medical professional! Holy cow!

So, armed to the hilt with information regarding this relationship, and the fact that most studies show anyone with Type 1 Diabetes should be routinely screened for Celiac, I contacted my endo and discussed my findings with her. Her reply? 'I've never heard of such a thing. We'll run a CBC and some other panels, and see what we find, make sure you aren't looking at Lupus.' 'Great, but that's not going to find anything, how about these antibody tests?' 'We'll run the CBC and other panels, and go from there.' Well, those tests were ran, and lo and behold, nothing out of the ordinary. 'Your platelet count is fine. If you want anything else you need to go through your general care provider.'

'But wait! Celiac, from my research, is an autoimmune disease related to autoimmune thyroid / Type 1 Diabetes!!! You're telling me to see someone else who's going to have EVEN LESS KNOWLEDGE???'

I then contacted my general healthcare provider, who basically said I was barking up the wrong tree. Neither of these fine medical practitioners will even listen to, or look at, what I've found. (Pretty sure I've diagnosed myself, BTW... going through EnteroLab to see what comes back, and then I'm going in search of someone else - this even after I diagnosed my own Graves' Disease!!!).

Just glad to have found a place where people can share their dealings. I feel that people need to be their own best advocate, fight for themselves and their GOOD HEALTH, and not take crap from anyone about it. I truly believe that educating oneself about diseases / treatments / alternative treatment / best care centers / etc. is the best dam*ed thing anyone can do... as I've found, I've learned a lot. Why does the medical profession have to treat their patients so poorly by not really listening to their complaints, and not being willing to entertain something outside of their realm of expertise? I feel they sometimes do a great disservice. (Of course, there are GREAT docs out there who'd do anything for their patients... I just need to find me one of them!)

[tiffjake]

Wow, you have been through a lot! I know what you mean about diagnosing yourself (atleast in the research department) because NO ONE has ever sat down with me and gone over all of my history and problems. I had to do that myself, and order outside tests, and THEN take them to my doc before he would do the celiac panel. I think a lot of the people here are in that boat. Welcome to the board!!! I wish you good health!

[Matilda]

..

[Mme]

Good for you for being such a good advocate and diagnostician! I'm sorry you had to be, but you're doing a great job.

The saddest thing to me is that even doctors who *want* to think outside the system don't know enough about the revised data on celiac. It was not in their training.

My mother went to med school in the 70s. They thought that something like 1 in 10,000 US citizens could carry celiac. So when my brother was massively allergic to wheat as a child and spiking fevers but not testing properly for food allergies, she knew he had a problem, she tried to change his diet, but she thought "That can't possibly be celiac. It's so rare."

The research was rare, not the disease. Latest NIH numbers? 1 in 133. That's a pretty massive revision over 30 years.

Now my mom and I read research together and we just keep boggling at how big the issues are. Then we compare notes on family history and on personal responses to gluten (I can't touch it, she tolerates rye and barley) and boggle a little more about how much we put up with when there wasn't a name for it.

Anyway, that's a sidetrack. But I just wanted to say that it's awesome that you're trying to understand the problems and get proper help and I know it takes a lot of energy, especially when you don't feel well. So go you!

[Guest nini]

it is a shame that the medical community for the most part is ignorant about Celiac, I think you are on the right track and even if you do get tests run and your test results are negative or inconclusive, don't give up, the testing is still woefully inadequate. There are too many false negatives (no false positives though, if it's positive, you've got it) Your BEST diagnostic tool is how well you respond to the gluten-free diet. Of course you don't want to go gluten-free until you are sure you are done with testing (unless you are comfortable self diagnosing with dietary response)...

Of course all of those health issues you mention are related to celiac, it's a shame that even the so called "experts" don't know enough about this.

[mamaw]

Hi Dawn

Well it looks like you to have been given the schuffle from doctors whom I might add seem to know little or care. They just want the big bucks but don't care about solving or finding a correct dx.... Oh they make me so angry. I was dx'd with Lou Gerhig's almost four years ago and I watched a friend go down quickly with this disease. It is one of the most horrible disease's in the world today. Now I told my doctor (after the initial shock of being dx'd) I did not have this . He asked how I new that and I said well I prayed tons and asked for answers and this kept coming back to me NO>NO> NO. So i said no I don't have that disease. I know something is wrong but its not that... He smiled and looked at me as if I had two heads and a horn in the middle of my forehead.So here it is years later and I'm still walking, talking, no feeding tube ! The given survival rate is 3 to 5 years....He just looks at me and shakes his head as I say I told you NO No No....Now I'm sure something is going on in my body but not LG's disease.

You are very smart in finding out what truly maybe your problems because I don't think a Doctor will find out unless you find a caring one and it appears that is almost mission impossible these days.....You may also have to get loud and demanding to get test and bloodwork done. Fight back you are the one paying for the insurance.......and its your body...

good luck

mamaw

[penguin]

Hi Dawn

Well it looks like you to have been given the schuffle from doctors whom I might add seem to know little or care. They just want the big bucks but don't care about solving or finding a correct dx.... Oh they make me so angry. I was dx'd with Lou Gerhig's almost four years ago and I watched a friend go down quickly with this disease. It is one of the most horrible disease's in the world today. Now I told my doctor (after the initial shock of being dx'd) I did not have this . He asked how I new that and I said well I prayed tons and asked for answers and this kept coming back to me NO>NO> NO. So i said no I don't have that disease. I know something is wrong but its not that... He smiled and looked at me as if I had two heads and a horn in the middle of my forehead.So here it is years later and I'm still walking, talking, no feeding tube ! The given survival rate is 3 to 5 years....He just looks at me and shakes his head as I say I told you NO No No....Now I'm sure something is going on in my body but not LG's disease.

You are very smart in finding out what truly maybe your problems because I don't think a Doctor will find out unless you find a caring one and it appears that is almost mission impossible these days.....You may also have to get loud and demanding to get test and bloodwork done. Fight back you are the one paying for the insurance.......and its your body...

good luck

mamaw

Man, I hope you don't have it either. I would argue that ALS IS the most CRUEL disease on the planet. One of my scout's dad is in the end stages, in his case it's going from the inside out. He's been on a feeding tube a few years now. It's so sad to see him, since I know he's there, especially since he waves, nods, etc.

You would think after 4 years, you would be worse off.

[mamaw]

Hi ChelsE

I will pray for the Als patient. It is a horrible disease and I wouldn't wish it on anyone.....You understand why I know I don't have this as you see first hand how it overtakes ones body.

How are you doing these days?

mamaw

[2kids4me]

Wow, someone with common ground, myself and both children are in the class of : PAS 3. The pediatrician has even said - she feels that subsets and variants of PAS occur in children that dont fit the current description of PAS 1, 2 or 3. Sad that we can relate on medical issues.

My experience with "adult patient oriented" doctors is similar to yours. The first time I knew about the relationship of immune mediated disease and celiac was when my son was diagnosed with diabetes and the pediatric endo said that they would test his thyroid every year and screen him for celiac. In a bit of an oopsie - they did test for antithyroid antibodies right away but not anti-endomeseal.. it delayed the diagnosis for 5 months and she (the doc) felt really bad. She was also the endo doc for my daughter and she was being worked up for GI/neurologic symptoms at the same time my son was diagnosed. Believe it or not, the only way I could convince my doc to test me for celiac was to have the pediatric GI write down what the GP needed to test for - cause the GP said there was no way I was celiac cause I didnt have symptoms, the the kid's GI doc keeps asking - have you had yourself tested yet? I say no and this is why... he shakes his head and writes a note.

If your endo would read any pediatric journals - there are articles supporting the need to test every diabetic child for celiac. They have even found that in a majority of cases, if celiac disease will be diagnosed in a diabetic child, it occurs within the first 5 yrs after diabetes developed.

You sound like celiac to me - my son's blood glucose readings were eratic along with the stomach aches and joint pain untilk he started gluten-free diet. I eat gluten-free and feel way better too - and guess what? My readings settled down and I have more energy... even though the test was negative.

I have insulin dependent diabetes (25 at diagnosis), hypothyroidism (Hashimotos), and pernicious anemia. We have a son (11 yr) diabetic/celiac - diabetes diagnosed Sept 2003, celiac confirmed by biopsy Aug 2004. A daughter (13yr) diagnosed hypothyroid age 4, Hypotonia at birth, Aspergers at age 7 aftr 5 yrs of "I dont know what's wrong, but lets do more tests", Kawasaki June 2003, celiac May 2004.

For the pernicious anemia - I had facial numbness, dropped dishes and had severe fatigue - 2 docs said - this is related to your diabetes and you look depressed - here's a script. It was by fluke that one doc said - lets try a B 12 injection - I was a different person in 72 hours.

Follow you instinct, read and go back to dcotors that help and eliminate the ones that are clueless