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Okay So Now I'm Mad At Them

TrillumHunter

By TrillumHunter
in Doctors

Recommended Posts

debmidge Rising Star
debmidge
Posted

As for me, I'll still make allowances for people who are not as skilled in this area. It's just me, as I think, "there for the grace of God go I." I am sure, however, since the advent of the computer, there's more information out there. ;)

Fiddle-Faddle: what was your Mother researching?

  • 5 months later...
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numbfeet Newbie
numbfeet
Posted
Bottom line: if you have a computer, a high school education or better, and you are reasonably intelligent, you are capable of doing the research--all you need to do is google your symptoms, and read what comes up and decide if it fits or not. And if you are capable of doing the research, there is no reason you should take an MD's word for anything.

Please remember that some people are too sick to do thier own research be it at the library or online. As far as I am concerned that is one of the reasons I pay taxes - to pay experts to do it for me when I cannot.

gfp Enthusiast
gfp
Posted
I am sorry to hear this, now that you are aware of them is there going to be some kind of treatment?

B6 and gluten-free diet works well!

gfp Enthusiast
gfp
Posted
. As far as I am concerned that is one of the reasons I pay taxes - to pay experts to do it for me when I cannot.

Yeah, I pay taxes too. You'd think the government would pay someone to help me fill out tax forms to my advantage too?

Strangely, when I do my own (boring as it is and pressed for time as I am) I end up paying less tax.

I find the same with my health research, the more I know myself the better the results when interfacing with 'medical professionals'.

TheS0urce Newbie
TheS0urce
Posted

You don't have to just rely on doctors and the internet. I believe in spiritual healing, I don't do healings nor do I have a web site, I'm tell you from my experience meditation can help or even fully recover. I have been practicing falun dafa (you can google it to find the site) and I am slowly getting better. I am limited what I can eat for some reason, I can't have all fruits, most veggies, so I stuck with a few grains.

It is believed human have auras, when we get sick the auras get weak by the effects of karma. Karma is when you do bad things. Now wait I'm not saying anyone is bad but if you check out the site and read the two books you will see what I mean. Anyways by doing the exercises and meditation I am slowly getting better. Still have to figure out what I can eat though so it's a big battle for me.

When I tell people they laugh at me or they tell me to tell them i'm joking. But I know it works because I have been doing it.

I also only drink water to help the cells carry toxins out of my body. I hope for your sake you take a look and at least try for a month or so what else can you lose?

I am totally fed up with doctors because it's hard to get good health care in ontario, Canada since the doctors are paid less now.

Judyin Philly Enthusiast
Judyin Philly
Posted

OH MY GOSH,

I READ THE FIRST 6 POSTS AND GOING TO PRINT AND GO READ AND THEN RESPOND.

I CAN RELATE TO SO MUCH......ESP THE 'SPOTS' ON THE BRAIN MRI.' I HAVE THEM TOO BUT NOT IN THE RIGHT PLACES..............GOOD GRIEF :blink: WELL SOMETHING HAS TO CAUSE THEM... ;)

OH MY............THIS GLUTEN IS SUCH A NASTY LITTLE BUGGER :ph34r:

JUDY

JodiC Apprentice
JodiC
Posted

I too have demyelinization and "tia" looking lesions. After being sick my whole life (I am 31) I was finally diagnosed 1 year after having a MRI. First they thought I had MS and I spent about 8 months thinking that. Then an internal med doctor suggested testing for Celiac. I thought he was nuts, but turned out he knew what to look for. Never stop demanding excellent healthcare. If you don't agree with the answer fight for the correct one. My doctor is very open to learning (we are practically the same age) so it has been alot easier. I am able to get referrals and procedures done. She even consults with a doctor at the Mayo just to make sure the care I recieve is proper. I have had my share of doctors tell me that I was crazy or "I just can't help you", so I am glad I found this one. It's sad that the neuro part of this disease isn't written about and ot studied more. I have a 6 year old who has a "unidentified bright object", GI issues, behavior issues etc... the blood tests keep coming back negative so we are trying to figure out if we should scope him or try the diet.

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ravenwoodglass Mentor
ravenwoodglass
Posted
I too have demyelinization and "tia" looking lesions. After being sick my whole life (I am 31) I was finally diagnosed 1 year after having a MRI. First they thought I had MS and I spent about 8 months thinking that. Then an internal med doctor suggested testing for Celiac. I thought he was nuts, but turned out he knew what to look for. Never stop demanding excellent healthcare. If you don't agree with the answer fight for the correct one. My doctor is very open to learning (we are practically the same age) so it has been alot easier. I am able to get referrals and procedures done. She even consults with a doctor at the Mayo just to make sure the care I recieve is proper. I have had my share of doctors tell me that I was crazy or "I just can't help you", so I am glad I found this one. It's sad that the neuro part of this disease isn't written about and ot studied more. I have a 6 year old who has a "unidentified bright object", GI issues, behavior issues etc... the blood tests keep coming back negative so we are trying to figure out if we should scope him or try the diet.

You should get him on the diet. You could scope first but that may give you a false negaive especially if his GI tract is not yet being effected. In some more advanced countries that bright spot would have gotten you a clear celiac diagnosis but here in the US you have to be almost dead before they will give it to you. If you google neurological celiac you will find many, many articles on UBOs, unfortunately US doctors don't bother to read them. You will be heading off a lifetime of misery for your child if you get him on the diet before permanent nerve damage is done.

bakingbarb Enthusiast
bakingbarb
Posted
This is totally a vent so read at your own will!

I am recently diagnosed after 13 years of symptoms and OODLES of tests. For years they had me thinking I had MS. The last MRI I had four years ago showed lesions. I was terrified! But they said they were in the wrong place for MS and that they were nothing. BUT THEY WERE SOMETHING!! I am so p***ed off at that dr right now I could scream. Why was this so hard to diagnose? I had lots of complaints but I also had verifiable abnormalities in my blood work and scans. It wasn't like there was nothing to put together.

I hope I can get over this feeling soon. I don't want to linger on this but I would really like to yell at those people for a bit!

Thanks for "listening!"

I would like to say that it isn't just us with Celiac that get the shaft from the medical community. My son had pyloric stenosis and was in the process of looking like a starving child. He was skin and bones with a distended tummy. Ya there wasn't anything wrong with him was what I was told over and over. Oh and one ER nurse told me she wasn't go to waste a Dr's time and wouldn't let us in. Didn't I know to feed him fruit for the constipation (under 2 months of age).

I have despised the medical community ever sense then. Very rarely do they get it right. Only Dr we had that was smart was a homeopathic Dr. She treated my middle son for servere allergy/asthma. Although he probably should be off wheat!

bakingbarb Enthusiast
bakingbarb
Posted
Nope, can't agree with that today, at least, not if you have a computer. You don't need to know what you are looking for. I had no clue what I was looking for when I googled, "rash" and "thyroid," because that's all I had to go on, and I still found celiac.

I didn't realize I was having digestive symptoms til they went away (now, doesn't that sound idiotic??!!). But I was able to find a picture of DH that looked EXACTLY like my rash, even though the dermatologist sniffed and said it couldn't be DH since it was on my arms. By the time I was able to convince him to do the bloodwork, I had already been gluten-free for a month (I didn't know enough back then), yet my IgG was through the roof. And the dermatologist insisted that it was normal, but I found you guys, asked questions, and you guys helped me understand that it wasn't.

Bottom line: if you have a computer, a high school education or better, and you are reasonably intelligent, you are capable of doing the research--all you need to do is google your symptoms, and read what comes up and decide if it fits or not. And if you are capable of doing the research, there is no reason you should take an MD's word for anything.

I do not have a diploma of advanced medical education, but I cannot for a minute say that any doctor (at this point) is more responsible for my health than I am.

My mother didn't have a medical degree, either--her degree was in English. And our little town didn't even have a college, let alone a medical school. She went wherever she needed to go (I think it was either Northwester or U. of Chicago) in order to access the med school library, and she xeroxed whatever seemed appropriate, and brought it home and read it.

I don't mean to make you feel bad about 30 years ago, and if I did, I sincerely apologize.

I cannot agree with you all the way. Yes I do agree we have to educate ourselves and the internet helps us greatly. BUT put the big D in and you will not get Celiac for an answer right off the bat. I searched for years and the only reason I found Celiac was a friend brought it up. I searched for fatigue and tired legs and arms and so on. So the net doesn't always point us in the right direction right away.

nutralady2001 Newbie
nutralady2001
Posted

Just how long ago was there an "official" disease of Celiac identified? I was diagnosed with "IBS" in 1969, at age 21 but had it from age 12

October this year had to have an endoscopy/colonoscoy because I was very iron deficient and a bowel screening showed blood in both upper and lower GI tracts

All the years and all the doctors I've seen not one thought to do any further investiagtion and went by symptoms only

When I saw the gastroenterologist prior to my scopes I explained all my symptoms etc and the first thing he said was that it wasn't IBS and thought it might be Inflammatory Bowel Disease going by the symptoms

Of course then he did the biopsies when I had the endoscopy and BINGO Celiac Disease

I know that Hashimoto's Disease was discovered in the 1920's by a Japanese doctor and was named after him

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      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
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      By Itsabit · Posted

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    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

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    • trents
      diagnostic testing variance

      By trents · Posted

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