Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

An Apology To Radman


Rusla

Recommended Posts

Rusla Enthusiast

Radman,

I know when you first came on the list you mentioned there was an undercurrent of hostility.

This is my take on perhaps why you felt this. I believe that when you said you were a “cancer doctor” as opposed to a “Radiation Oncologist,” some people may have thought you were a fake and a flake. We do get some of those from time to time. We have heard that Celiac is very “in” right now. Which in a perverse way makes me happy. I have never been part of the “in” crowd my whole life. I was the “geek girl.” Anyway, the other reason could have been the horrendous time a great many of us have had at the hands of doctors.

Many of us have been told, “it was all in our heads,” and numerous other things. I don’t think Celiac is the only thing many of us have been disappointed on. Since I was a child they have never really established if I have one, two, three, four or two mutated kidneys. They also cannot find my heart. I suppose some may agree on the last one. I would like to say the one of best doctors I ever had was an Oncologist.

Unfortunately, you may have started out to almost be the “whipping boy,” I saw your being here as a good thing. Not good that you have this disease but good that you found the list. I figure that you being a doctor with this disease could help other doctors recognize this disease sooner. Then again I could be wrong and have been known to be.

If I have never said anything before, I would like to apologize for your feeling uncomfortable here in the beginning. I do hope all of that has changed now. I really would not like anyone to feel uncomfortable here we are all here for the same reasons. I don’t want anyone to look down on anyone else in here because no one on here is better than anyone else.

I would like to tell you and everyone else, I appreciate all of my friends on here and I appreciate people who are straight up and to the point, like yourself.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VydorScope Proficient

Rusla,

Well siad. I hope my PM to him when he first arrived helped... Im glad he stayed.

Lisa Mentor

here, here :)

jerseyangel Proficient

Rusla--That was a lovely thought :)

psawyer Proficient
They also cannot find my heart.

They must have been blind. It is obvious to me that it is there.

Canadian Karen Community Regular

Shhhhhh!!!!!! Do you suppose he knows how wacky we are by now? :ph34r:B)

Hugs!

Karen

VydorScope Proficient
Shhhhhh!!!!!! Do you suppose he knows how wacky we are by now? :ph34r:B)

Hugs!

Karen

Just dont let him in on the Altiods or he might get embarassed and run! :o


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rusla Enthusiast
They must have been blind. It is obvious to me that it is there.

Thanks Peter, you must have seen a different x-ray than they did. :)

Shhhhhh!!!!!! Do you suppose he knows how wacky we are by now? :ph34r:B)

Hugs!

Karen

I don't think he is on to us yet. :P

radman Newbie

Hey, thanks everybody!

I now feel officially welcome, and not (universally) hated anymore.

And I appreciate the opportunity to be part of a great group of people.

But I still reserve the right to tick you off occasionally, otherwise it would get kinda boring.

And please return the favor :lol:

Rusla Enthusiast

I am happy you now feel welcome and I am glad you stayed. I need someone to tick off every now and then. :lol:

Lisa Mentor

We are honored to have a doctor with celiac issues. We have learned from each other and perhaps we can continue to do so.

Rikki Tikki Explorer

Hi everyone:

I haven't been on in a while and first saw these posts and was somewhat surprised to see so much anger directed at another person coming to us for help.

Glad to see you worked it all out! :D

Canadian Karen Community Regular
But I still reserve the right to tick you off occasionally, otherwise it would get kinda boring.

And please return the favor :lol:

Oh, don't you worry one bit about that, there are some on this board that "ticking off" is their specialty!! :lol:;)

Karen

Rusla Enthusiast
Hi everyone:

I haven't been on in a while and first saw these posts and was somewhat surprised to see so much anger directed at another person coming to us for help.

Glad to see you worked it all out! :D

I think perhaps a lot of us did not realize how angry we all were with doctors. Unfortunately the first doctor on the board got jumped. Now, we are just trying to get him drunk and get him to dance on the table so I can get some pictures.

Ursa Major Collaborator

Radman, I am very glad you stayed, and you now feel comfortable here. It is a good place to come to, even though from time to time people annoy each other. But that is just the way it is everywhere, even amongst the best of friends.

But at least it is not boring, like some message boards, where people are so concerned about being nice and proper, that nobody posts, for fear of offending somebody! Who needs it. I have left some of those lovey-dovey boards, because nothing interesting was happening. :blink:

angel-jd1 Community Regular
I think perhaps a lot of us did not realize how angry we all were with doctors. Unfortunately the first doctor on the board got jumped. Now, we are just trying to get him drunk and get him to dance on the table so I can get some pictures.

There used to be a very nice doctor on the board. She would post recipes. However, people attacked her also and she left. So not the first dr, just the first doctor that has stayed .

-Jessica :rolleyes:

Canadian Karen Community Regular
There used to be a very nice doctor on the board. She would post recipes. However, people attacked her also and she left. So not the first dr, just the first doctor that has stayed .

-Jessica :rolleyes:

Well, let's hope a lesson was learned from that!

Karen

VydorScope Proficient

I'll be honset, when I have posted in defense of ppl like Radman, and been yelled at for it up and down, (you know for saying things like sterotyping is bad) I have had to walk away from the computer myself. Everyone tends to loose sight of the fact there is real ppl and real feelings behind posts and I think ppl tend to forget that real ppl get hurt by posts.

I hope we can all learn that its just as bad to say 'All doctors are evil" as it is to say "All blacks are cattle and deserve to be treated like personal property." Go head, flame me all you want, I know how to walk away from a thread. :)

Rusla Enthusiast
There used to be a very nice doctor on the board. She would post recipes. However, people attacked her also and she left. So not the first dr, just the first doctor that has stayed .

-Jessica :rolleyes:

That is too bad. I guess that was definitely before my time on the board. As Vincent said many times people tend to forget that everyone is a real person on a forum with real feelings. Just because they are doctors doesn't mean they don't have feelings. I guess society as a whole makes them seem like they are not real people.

I have had a few good doctors in my time and the first two doctors to clue into this years ago, like thirty years ago would have been the Alergist and Gynecologist I had then. The Alergist found the wheat etc. allergy and said there was more underlying problems with that but he could not do those tests. The Gynecologist also said the same things. Like I said at one point I had to see an Oncologist who was also great. My dentist was the one in the last year who said it was more than a tooth issue.

I will correct and say the worst doctor problems I have had have been with GP's, GI's, and Endocrinologists and almost all of those have been definitely in the last 20-25 years. It easy for us all to feel so beaten down and it is sad that the ones that are bad or don't seem to care ruin it for others in the medical field.

We all just have to remember that when a doctor is here it is because they either want to find out more or they have this disease (or both), just like us.

So now that we have let Radman know it is not him we are mad at, we are just generally angry over having had this drag about without knowing for such a long time. It isn't his fault it is the fault of those who would not help us originally. These are the things we have to keep in mind.

Canadian Karen Community Regular

Yep, I sure know about having to walk away....... :lol:

Hugs.

Karen

ravenwoodglass Mentor
Hey, thanks everybody!

I now feel officially welcome, and not (universally) hated anymore.

And I appreciate the opportunity to be part of a great group of people.

But I still reserve the right to tick you off occasionally, otherwise it would get kinda boring.

And please return the favor :lol:

And we like to welcome great people in return. I also am happy you stuck around. There is so much for all of us to learn and for some of us this board provides a way to not feel so alone and isolated. To think we might have chased away someone who needs us as much as we need them is sad. I am glad you have chosen to stay with us for now.

shayesmom Rookie
Radman,

I know when you first came on the list you mentioned there was an undercurrent of hostility.

Many of us have been told, “it was all in our heads,” and numerous other things. I don’t think Celiac is the only thing many of us have been disappointed on. If I have never said anything before, I would like to apologize for your feeling uncomfortable here in the beginning. I do hope all of that has changed now. I really would not like anyone to feel uncomfortable here we are all here for the same reasons. I don’t want anyone to look down on anyone else in here because no one on here is better than anyone else.

I would like to tell you and everyone else, I appreciate all of my friends on here and I appreciate people who are straight up and to the point, like yourself.

I just caught on to Radman's posts and I also felt very badly for some of the hostility that was probably perceived as being directed at him. Truly, we all have accumulated a lot of "baggage" when it comes to this disease and how we were diagnosed (or not)....not to even touch on the struggles of reconstructing our lives and dealing with the extended health repercussions on top of it all. Then in comes Radman with more common sense than dozens of the docs that many of us went to....and he's not even a GI!! lol!! I was completely enthralled reading his post and all of the responses to it. It's been the very best discussion that I have been in yet and everyone seems to be joining in. What a tremendous pool of knowledge!

So just in case, I too would like to apologize if I somehow offended (specifically for my joking with you on being more believable to other docs due to your medical background). I was not trying to trivialize your issues or whine. It was just funny that you commented on "who cares about being believed or not". Probably because I was actually screamed at by the pedi GI for putting my FFT daughter on a gluten-free diet. The doc felt it was too restrictive and that my daughter would be worse off for it. But after nearly a year of hell...I got desperate and sought my own answers. All has been resolved since that day and the pedi GI and I now understand each other....and at this point I have also developed a "who cares" attitude as I am quite happy with how my daughter is doing. But man!!! Radman! You made ENTIRELY too much sense and I am STILL picking my jaw up off of the floor! :o I just wanted to tell you that I was thoroughly encouraged by your comments. Several family members have been hounding me about being gluten-free without a formal diagnosis and it's been wearing on me. I didn't realize how much until I started reading your posts.

So I guess that on top of an apology, I have to forward a thank you. Hearing a new perspective is not only refreshing, but can be very helpful indeed.

Rikki Tikki Explorer

I think it is just that many of us have gotten so frustrated with doctors and then along comes someone that is looking to us for support who happens to mention that he is a doctor and then many took out their anger/frustration on him. I am a social worker and have had many experiences where someone lost their kids or felt they were treated unfairly and found out what I do and blasted me without seeing that I am separate from their experiences. Does this make any sense? What about all of you, what do you do for a living?

VegasCeliacBuckeye Collaborator

If it helps,

I really don't blame the doctors,

I blame the people who teach the doctors and the people who set up the curriculum as celiac disease used to be a one sentence blurb on a page. Hopefully, now that is changing in Med School.

However, the GI's that don't accept new medical data on celiac disease deserve some lashings.

:)

:)

Also, like I said last year -- If we really want to help awareness of celiac disease, get your doctor or a previous "incorrect diagnosis" doctor a copy of the book "Dangerous Grains" -- Just give it to him/her for X-mas or just for the heck of it.

Its probably the best $10-15 we could spend....

mommida Enthusiast

I was on my secret life mission to make the world blonde like me and I missed this whole thing! (Oops not a secret any more.)

Welcome, Radman, to the the board.

How about the next person who miss behaves gets a spanking and, "no Altoids, one year!"?

L.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,551
    • Most Online (within 30 mins)
      7,748

    spencercoleadams
    Newest Member
    spencercoleadams
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.