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Whats The Deal With Drs?

crimsontopper

By crimsontopper
in Doctors

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crimsontopper Rookie
crimsontopper
Posted

i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.

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mushroom Proficient
mushroom
Posted

You were one of the lucky ones, first of all to know about celiac, and secondly to have a doctor willingly test you for it. Count yourself as fortunate :) .

OptimisticMom42 Apprentice
OptimisticMom42
Posted

It was easy for us also. There are three of us in our house and we didn't have and problem getting the dr's to dx us.

Jestgar Rising Star
Jestgar
Posted

I had no problem getting tested, and even though it was neg (anti gliadin only was run) my doc feels that the improvement in my health is proof enough.

ENF Enthusiast
ENF
Posted

It seems that various states have different rules for allowing insurance companies to deny coverage for testing and other procedures. My state is pretty good in this regard, and I can usaually get whatever tests I want.

G-freegal12 Contributor
G-freegal12
Posted

They are all so under educated it's crazy. :angry: I am gonna be a doctor so I can be educated and fix people :D ....why did everyone start screaming and running away when I said I wanted to be a doctor...? :P

GarBear Newbie
GarBear
Posted
i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.

Ugh! i went to my (mediocre) doctor yesterday to ask him for the lab slip to get tested for celiac (I've been gluten-free for three months now), and anyway... he was SO RUDE about it! I was really upset! He had originally told me that i had irritable bowel (which in my opinion is a total cop-out diagnosis and it just means that they have no idea what's wrong with you). It seemed like he was offended that i didn't agree at all with his original diagnosis.

Anyway... i've been rambling.. Took my blood tests this morning (anxiously waiting for the results! haha)

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ravenwoodglass Mentor
ravenwoodglass
Posted
Ugh! i went to my (mediocre) doctor yesterday to ask him for the lab slip to get tested for celiac (I've been gluten-free for three months now), and anyway... he was SO RUDE about it! I was really upset! He had originally told me that i had irritable bowel (which in my opinion is a total cop-out diagnosis and it just means that they have no idea what's wrong with you). It seemed like he was offended that i didn't agree at all with his original diagnosis.

Anyway... i've been rambling.. Took my blood tests this morning (anxiously waiting for the results! haha)

IF you have been gluten-free for 3 months chances are the test will be negative. You need to be consuming gluten for the tests to be positive. If you need a doctors diagnosis you need to go back on gluten. If the challenge makes you very ill IMHO you have your answer no matter what the test results.

jkr Apprentice
jkr
Posted
i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.

Yes, I had to have two endoscopies to prove it to the GI. When I first told him last year I thought I had celiac, he said to me "but you don't diarrhea." After the first endoscopy I told him I wanted the blood tests, then he took me seriouisly when they were very abnormal. Then he took the biopies for the second one. I know a lot of people would have switched doctors but I didn't want to go to another doctor and start over.

Good luck.

ang1e0251 Contributor
ang1e0251
Posted

You're lucky because you had a clue to your illness. Those of us that are clueless go to our dr's with these seemingly random symptoms expecting our dr to put it all together. Many dr's are just undereducated about celiac disease and don't see the pattern. So we are stuck spinning our wheels while test after test is run with no results. Oh if I only could have had the knowledge to ask for a celiac panel....

GarBear Newbie
GarBear
Posted
IF you have been gluten-free for 3 months chances are the test will be negative. You need to be consuming gluten for the tests to be positive. If you need a doctors diagnosis you need to go back on gluten. If the challenge makes you very ill IMHO you have your answer no matter what the test results.

Interesting.. Well thanks for the info =)

ann72601 Apprentice
ann72601
Posted
i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.

It seems that if you are a woman, it's harder to be heard. If you're an uninsured woman, it's even harder. If you are alone........bring someone with you :lol:

Li'l Buck Newbie
Li'l Buck
Posted

At 40, my lifetime GP retired. My new doctor checked my history and had me tested almost immediately. I think he has celiac disease and so has a vested interest in learning about the disease. What kills me are the Drs in emergency (presumably they are supposed to have the most current medical info?) and paramedics who know nothing about it.

I think that most Doctors get their information (post medical school and perhaps even during) from the drug companies and since they don't have a drug to patent to cure us; they prefer to focus on the drugs to treat our symptoms... far more profitable for the drug companies.

ann72601 Apprentice
ann72601
Posted
At 40, my lifetime GP retired. My new doctor checked my history and had me tested almost immediately. I think he has celiac disease and so has a vested interest in learning about the disease. What kills me are the Drs in emergency (presumably they are supposed to have the most current medical info?) and paramedics who know nothing about it.

I think that most Doctors get their information (post medical school and perhaps even during) from the drug companies and since they don't have a drug to patent to cure us; they prefer to focus on the drugs to treat our symptoms... far more profitable for the drug companies.

In my case, I had to kiss a lot of frogs before I found the prince. I use an MD and ND, both are older and wiser having experienced more than med school. It doesn't matter what there is in life to learn; there is nothing like experiencing it and this means doctors too. My thanks actually goes to the people here who have been there and done that. They've helped me know how to deal with docs and all the daily challenges that come with celiac. I love them!!

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
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      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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