Long Rant..just Having To Vent About My Appointment

[chasbari]

Tuesday March 10th, 2009

Just returned from my appointment with my rheumatologist. I am not sure where to start or how to best sum up my disappointment in how this all went today. When I last saw him on January 9th I had not begun the paleo diet and was having a reaction to some foods that were supposedly safe for my celiac. I had also not gotten my formal diagnosis of celiac at that point so was only operating under my assumption that the biopsy results would be definitive which they were. In February I had a bone denistometry as a follow up from my Gastroenterologist after his diagnosis of celiac. the results showed mild osteopenia. As a follow up to those results my GP wanted to start me on Boniva or Fosamax IV due to malabsorption issues associated with my celiac. I have a good working relationship with the aforementioned and reasoned that since I had been suffering from malnutrition issues for as long as I had been I would like t try supplementation with vitamin D, calcium and magnesium for the time being to see how things would respond. I didn't start actual supplementation until Sunday March 1st and the change, coupled with my paleo diet, has been extraordinary. Back in November/December I could barely get out of a chair and I was experiencing gel times as long as two hours as recently as January 9th. My RA Factor titers in December were 821 which were cause for concern and correlated with the herculean efforts it was taking just to move. When my rheumatologist diagnosed me with RA 5 years ago my RA Factor was 176.9. It was my GP who ran the December tests and also included the blood test for celiac. It was negative but he had enough concerns after abdominal imaging to send me for a upper and lower scope. The biopsy showed severe villus atrophy hence the positive diagnosis for celiac. All well and good. I was responding to the gluten-free diet in that I was finally not getting worse by the day. Yes, I had started it before I had a diagnosis in hand but, with my health deteriorating as quickly as it was I felt I had no choice if I wanted to live. I am grateful to have a GP willing to follow through in spite of the negative blood test. Since switching to paleo I have had astounding results. I have lost 25 pounds which everyone around me seems to thing is a terrible thing. But, concurrent with that weight loss is an ability to do weight bearing exercises. I now have no gel time in the morning with my RA and can even run. 4 months ago I could barely walk. My strength and grip are such that my main problem is overdoing things now. This is also complicated by leaky gut issues I occasionally mistake for CC or glutening. I came to realize Sunday that what I thought was glutening was actually doing post prandial high thoracic pressure activities. If I work out, play trumpet or french horn, sing arias or do mechanical/metal working within an hour of eating I begin to experience the same things I was having problems with 4 months ago. I begin to have vision problems, heart palpitations, my blood sugar regulation goes whacky and I feel like I start to become autistic in that I cannot stand noise, people talking to me or general auditory input without just trying to zone out and detach. My tinnitus gets much worse as well. I felt horrible Sunday because I ate, ran out the door, sang through 4 warmup arias on my way to my church job and then couldn't see the hymnal enough to read the words. I compounded things by eating half the apple I had with me between rehearsal and service thus prolonging the difficulties even more. The day after these episodes I find my hands to be quite swollen and weak. This also occurs the day after I have salty food as well. But, I digress. Back to the rheumatologist appointment this morning. I am able to report to him that I have zero gel time in the mornings, I am not taking any medications other than the vitamin and mineral supplementation and that I am adhering to a strict diet regimen to treat my celiac. Five years ago when he first diagnosed me with RA he immediately put me on methatrexate and Enbrel. This combination of drugs hastened the loss of my voice and my hearing. I responded by stopping them. It took several years to regain some vocal function and for the hearing to calm down to a low roar. Did I mention I am an opera singing, voice teaching choir director? Can you see the inherent difficulties with these side effects and my profession? He refused to acknowledge that these side effects were problematic. Back to today. I cannot even sum up how things went. He argued with me that even if I had celiac that it, coupled with rheumatoid arhtritis now make my prognosis very bad unless I start using heavy duty RA drugs. He wants me on Humira or some other DMARD. He also stated that I might not even have celiac and it is probably only IBS. He told me I am being a fool and risking my life by taking the course of action I am presently taking. He wants to run several blood tests to prove to me that my RA cannot possibly be linked to my celiac (which he doubts anyway.) He kept on saying "studies show..." I tried to relate my present experiences with the radical changes I am experiencing almost daily and he kept talking me down. He said, more than once, that my combination of RA and my supposed celiac now made my prognosis dire and that I was at great risk for bad outcomes if I continued with my course of action. He said there was no way I could restore bone density without pharmaceutical intervention and that vitamin supplementation would be of no use. He said I would see no improvement and that my RA was only going to get catastophically worse as it was going to be very aggressive. When I was finally able to get a word in edgewise I explained that I have been living in my body 24/7 and have been journaling through my health difficulties for many years and that I have more than a little experience in exercise physiology. I wanted him to explain the profound positive changes I was experiencing over the last 6 weeks. During this he was asking if RA was at all common in celiac sufferers. I recalled seeing that RA in the general population among males occurs at a ration of 1:10 to females. Men are statistically much less likely to have RA then are women. I also saw that in the celiac community this ratio becomes much smaller. More along the lines of 1:3. (Jestgar, I apologize but I do not have proper citiation for these numbers so please discount them as anecdotal at best.) He agreed with me but then continued to beat me down about how sick I was becoming and that I was being a fool. I am going to have a panel of blood tests run in 6 weeks because he wants to see how my CCP numbers compare to my RA factor titers as well as my vitamin D levels with my supplementation. I really felt that he was trying to bully me into being willing to take DMARDS which I cannot afford and have no interest in taking. Any time a drug has side effets that are worse than the disease being treated and lose effectiveness after a year or so necessitating a switch to yet another death side effect drug I am disinclined to want to take it. I guess this is really a pointless rant but I had to get it off my chest as it was really quite disturbing to me in light of how much positive progress I have made since my initial diagnosis and support from other good doctors.

[maile]

first off, WOW, what a disappointing morning!! Props to you for being courageous enough to stand your ground ...it seems that your MD is rather stuck in his ways

In the end, you are the best judge of your body and it's reactions. You really seem to have found something that works for you and if this dork can't see that then perhaps it's time to either ignore him or get a new specialist (if that's a possibility).

[rinne]

What a patient woman you are.

Rant away.

Personally I would have left after a few minutes of that, abuse is abuse and he was abusive.

[chasbari]

What a patient woman you are.

Rant away.

Personally I would have left after a few minutes of that, abuse is abuse and he was abusive.

Wait...when did I have a sex change operation? I am a bass-baritone.... But I am still patient!

The more I think about it the more I am surprised I stayed. I wanted to be able to have a dialogue and he was unwilling to hear me. He kept citing that "studies show.." How many studies and which ones and how many have been done on the exclusive dietary treatment of the combination of celiac and RA? Doubt that there has been that much done on that since no one except farmers, ranchers and fisheries are going to be making much from me for a while.

Chuck

[home-based-mom]

If it were me, I'd find a new rheumatologist. This guy is not going to help you in any way.

[mushroom]

I don't think that too many rheumatologists are aware of the link between celiac and RA. My first one wasn't, for sure. I think everyone with one of the known associated auto-immune diagnoses should be tested for celiac, but then again, I am not paying for them I am not sure if it is a monetary issue, or ignorance. I dumped my first rheumy who was of the "old school" and didn't seem interested in learning anything new. I am opting for younger physicians; they seem more up with the play.

[Takala]

Wow.

If he is a licensed physician and ignoring the results of the biopsy showing you have damaged villi..... and still insisting that you should be taking the anti tumor necrosis factor biological drugs.... I don't know what to say other than that sounds like malpractice.

Once you get healed up your body should start to be able to use minerals and micronutrients much more efficiently again, as the gut lining is able to absorb and function properly. Since bone remodels constantly, new, healthier bone should be replacing old frail ones.

That "Boniva" type bisphosphonate stuff is not harmless, but linked to all sorts of jaw bone necrosis type problems. All those drugs do is to work to preserve the old bone cells from being lost so fast- it slows done the rate they are gotten rid of, instead of helping create newer, healthier bone. Any sort of tooth/gum infection or rotting toothache, unresolved, and you risk losing part of your jawbone or having permanent, incurable infection if you take this drug. It's scandalous the way the advertisers are pushing it.

I don't know that you will find any standard rheumatologists anywhere, live and in person, who will take seriously any link between Celiac/gluten intolerance and diet in the treatment of arthritis. There is a professor in England, I think, Erbringer, who recognizes that starchy diet and ankylosing spondylitis is linked. (AS is a sero negative arthritis, frequently mistaken for early onset osteoarthritis, but the inflammation with gradual arthritic changes effecting the spine and hips mostly, with some knee and neck also. End stage the parts of the spine can actually fuse) He advocates a no or low starch diet, which is coincidently gluten free. But even he has problems being taken seriously by many in his peer group, inspite of being one of the pioneers in recognizing this leaky gut problem was causing auto immune diseases.

Interestingly enough, the veterinary profession seems to "get" this relationship between grain consumption and animal illnesses much better. There are some pets that do much better on a grain free, wheat family free, or different type of low grain diet then they were getting before. I have been surprised and thrilled at the healing reaction several pets I had with various (and veterinarian suggested and approved ! ) diet changes.

[lbd]

Here is a link to Dr. Scott Lewey's take on this subject. There is also a list of relevant references from studies done at the bottom which you can show your doctor, so you can show him you have "studies" to back up your results as well. Good luck!

https://www.celiac.com/articles/85/1/Arthri...ease/Page1.html

The Gluten Doctors recently came out with a book called The Gluten Effect and mention this connection as well. They do a good job of providing references to back up their information provided in their book. Maybe your doctor needs a copy.

I would think it is common sense to realize that one immune system problem can be related to another. Silly man (the doctor, not you)!

Laurie (back to lurking)

[rinne]

Wait...when did I have a sex change operation? I am a bass-baritone.... But I am still patient!

The more I think about it the more I am surprised I stayed. I wanted to be able to have a dialogue and he was unwilling to hear me. He kept citing that "studies show.." How many studies and which ones and how many have been done on the exclusive dietary treatment of the combination of celiac and RA? Doubt that there has been that much done on that since no one except farmers, ranchers and fisheries are going to be making much from me for a while.

Chuck

What a patient man you are.

I appreciate your desire to have a dialogue but it seems he wasn't the one to have it with.

[chasbari]

Thanks to all of you for your observations and links. I just re-read the article on RA and celiac. I have been thinking through what happened yesterday and why I was so down about it. A common theme with most everyone I read about in their journey to diagnosis seems to involve the element of incredulity on the part of one or many physicians. This was certainly the case with me as I had pretty much given in to the thought that it might all truly be "in my head." I was looking for a diagnosis and that (hypochondria..implicit, not explicit) seemed to be the consensus of the specialists. Not exactly the medical validation I was seeking. In a way it was a relief to get the RA diagnosis 5 years ago but was distressing when things just continued to get worse. I guess I was hoping the difference between when my rheumatologist saw me two months ago and my much improved condition yesterday as a result of celiac diet compliance would be cause for celebration. It really knocked the wind out of me for a day. I realized that part of the problem is due to the fact that I have something that no doctor will ever be in possession of. While he was shouting me down with citations of studies he has read and information that he was trying to beat me down with I was sitting there with the truth and knowledge of how my body is responding 24/7/365. No amount of research that any doctor will every read in summary or perform will ever be able to approach the innate accuracy of my self awareness and no doctor needs to validate that. The thing is, my GP and GE are so open to allowing a dialog where they gain much information from my willingness to share that history and, so long as I am accurate and limit my speculation and keep the preconceived notions to a minimum, they can look at that information objectively. It was the conciseness of my observational history that convinced a very good GP to do the appropriate follow-up which lead to my diagnosis. I got to thinking about the truth from my rheumatologist's perspective and, indeed, if his studies are indicative of the improper treatment of celiac's who also happen to have RA then my prognosis will be terrible and I anticipate things would get much worse if I were to pursue his line of recommended treatment. It is absurd for him to claim that it is impossible for my bone density to improve when he can't even recognize the mechanism by which it deteriorated. 4 weeks ago I could not support my body weight on a dipping bar to do the lowering portion of that exercise. Just this morning I was able to do three very deliberate controlled dips and could have done more except this is supposed to be an off day on my workout schedule and I am wanting to be stingy with my metabolic resources to concentrate on the healing of my gut. If I were emperor I would be so inclined to make every subject facing critical health problems that were not immediately life threatening to undergo 6 months of gluten free...Nay I would even say strict paleolithic diet before undergoing any extraordinary medical intervention just to establish a baseline of what might be more optimal systemic stasis. I do not wish to live in a world without doctors and medicine and research, I just want the cart to follow the horse. Here I am rambling again. Thanks for your support. I have found this board to be my calm in the storm over these last few months and am grateful for the levelheadedness. (Do I write like a girl Rinne?? Just kidding.)

Blessings,

Chuck

[rinne]

Do I write like a girl Rinne?? Just kidding.)

Blessings,

Chuck

No.

This is a little embarrassing to say but I made the assumption based on his abusiveness, that kind of behavior is typical of the kind of treatment women often receive. I suppose that means I was assuming men aren't treated that way.

Thanks for your post, I appreciated what you had to say about the experience particularly about knowing the truth of your body.

[ang1e0251]

You are patient. I would have a very hard time returning to speak to anyone who repeatedly called me a fool. Not a very effective bedside manner. My GP made a similar mistake when he asked my symptoms from a glutening. One of them he laughed outright at. He's a family friend so I let him get away with it that day but the next time I see it, I will bring it up. He doesn't really believe I have celiac disease since I had no testing for it, no matter how well I tell him I now feel. The proper response to a point he disagrees with is to ask why I believe that to be true. I could have backed that up with symptom history he would have accepted but he didn't give me the chance.

[chasbari]

No.

This is a little embarrassing to say but I made the assumption based on his abusiveness, that kind of behavior is typical of the kind of treatment women often receive. I suppose that means I was assuming men aren't treated that way.

Thanks for your post, I appreciated what you had to say about the experience particularly about knowing the truth of your body.

I really suspected that was your take as I have noticed you are extremely perceptive and I would have also made that assumption based on his treatment of me had I read it not knowing who I was. As I replay the incident I also recall that he was being very aggressive in pointing his finger right in my face. I really had to restrain myself as I was ready to grab his hand and scold him for being so rude. The nurse who took me to the exam room was rather abrupt as well and was practically jogging. She placed the BP cuff and cranked it up ridiculously high...well up over 200. I was trying to remain calm in spite of this but my BP "soared" to 118/72 which is actually high relative to my normal BP in the 90/60 range now that my body is healing. My resting HR was 68 which was pretty good considering how I was feeling after the cuff about severed my upper arm (note to literalists... this is a mere exaggeration for the sake of story telling amongst friends) when taking my BP. I mentioned to her that it was on the high side relative to my normal reading and she just ignored me. In noting my weight loss I mentioned to her that now that I was adhering to a strict gluten-free diet I had lost some weight and my RA was getting better by the day. She looked at me sideways and said "all because of diet?" I said yes to which she just got up and walked out the door.. maybe I represented a threat to her job security. Heaven forbid that I should walk around the waiting room witnessing to other RA patients.... Lets have a celiac revival.... (may not be that bad an idea, come to think of it.)

[ang1e0251]

You're gonna need a sequined jacket and big hair for that revival! I'll sing in the choir!

[chasbari]

You're gonna need a sequined jacket and big hair for that revival! I'll sing in the choir!

Oooh..sequins... I'll have to work on the big hair though. Now that I am gluten-free my stand up straight straw mop has calmed down and is all silky smooth and flat....

[ravenwoodglass]

I really suspected that was your take as I have noticed you are extremely perceptive and I would have also made that assumption based on his treatment of me had I read it not knowing who I was. As I replay the incident I also recall that he was being very aggressive in pointing his finger right in my face. I really had to restrain myself as I was ready to grab his hand and scold him for being so rude. The nurse who took me to the exam room was rather abrupt as well and was practically jogging. She placed the BP cuff and cranked it up ridiculously high...well up over 200. I was trying to remain calm in spite of this but my BP "soared" to 118/72 which is actually high relative to my normal BP in the 90/60 range now that my body is healing. My resting HR was 68 which was pretty good considering how I was feeling after the cuff about severed my upper arm (note to literalists... this is a mere exaggeration for the sake of story telling amongst friends) when taking my BP. I mentioned to her that it was on the high side relative to my normal reading and she just ignored me. In noting my weight loss I mentioned to her that now that I was adhering to a strict gluten-free diet I had lost some weight and my RA was getting better by the day. She looked at me sideways and said "all because of diet?" I said yes to which she just got up and walked out the door.. maybe I represented a threat to her job security. Heaven forbid that I should walk around the waiting room witnessing to other RA patients.... Lets have a celiac revival.... (may not be that bad an idea, come to think of it.)

Grab his hand, I would have been tempted to bite that finger!!!! I am glad you have had good results with relief from your arthritis pain, as I myself did. I was told so many times that I just had to learn to live with the pain that after a while I believed them. It is not a coincidence that so many with RA also suffer from IBS. If I had been gene tested before diagnosis I would have just gotten the RA label and there would have been no more searching for the real cause. Hmmmm- my celiac gene is considered an RA gene here in the US. Not much money in us when on the diet though so not much of a rush for them to even test let alone diagnose.

[rinne]

It seems we are of like minds.

" I mentioned to her that it was on the high side relative to my normal reading and she just ignored me. In noting my weight loss I mentioned to her that now that I was adhering to a strict gluten-free diet I had lost some weight and my RA was getting better by the day. She looked at me sideways and said "all because of diet?" I said yes to which she just got up and walked out the door.. maybe I represented a threat to her job security. Heaven forbid that I should walk around the waiting room witnessing to other RA patients.... Lets have a celiac revival.... (may not be that bad an idea, come to think of it.)"

I can see the witnessing now.

I find it shocking that people are so unwilling to look at diet, they'll put expensive gasoline in their high end cars and then pull into fast food outlets.

I have friend who is a doctor, she says becoming a doctor is less appealing, as a profession it no longer offers unlimited authority to decide how a patient will be treated and she says sometimes patients now even yell at doctors. I suspect your doctor must have been a pretty old school doctor, expecting compliance and with no respect or patience for anything outside his field of knowledge. It is unfortunate for them and us when they are so closed minded but given their lack of training in nutrition not surprising all.