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

So Frustrated...is My Doctor A Complete Idiot, Or Am I?

eborzecki

Recommended Posts

eborzecki Explorer
eborzecki
Posted

On the 11th of November my primary doctor told me my result numbers as IGA 56 over 17 is positive and my TTG 117 over 20 positive.

He ordered some more tests and told me he can't tell me anything until the others come back and that labs sometimes make mistakes and therefore we can't relay on just these results, I researched on my own and it brought me here. I decided to see a GI who told me that since my sister has Celiac and my blood tests came back positive there is no reason to do an endoscopy because either way he will tell me to go gluten free, and that labs rarely mess up results on these specialty blood tests, and that its not easy to get a positive.

Today I went back to my family doctor and I did not share with him the fact that I saw a GI, he told me that I have to repeat these tests with a different laboratory instead of just assuming I have Celiac especially since I am not showing "classic" symptoms, and that I should see his GI and do an endoscopy because blood tests are not reliable. He gave me a whole printout about Celiac which made me think that maybe he is the one that needs it. Especially since I asked him what happens if the biopsy comes back negative and he told me that my GI will tell me all about that.

The one thing that got to me was when I told him about the rash, which the GI said was probably DH, he said that its just like medical students whatever they are studying at the moment, that's what they think they have. Basically saying that I am just putting all of this into my head.

My symptoms are brain fog, neck rash, hair loss, restless leg, weak teeth, and for him classic symptoms are stomach problems which the only thing that I have is constipation from time to time.

My vitamin D came back 24 and over 30 is normal, and my Ferratin came back 68 but they say that over 70 is good.

The problem with the blood test is that I was off gluten for a week and now I am scared to gluten myself and what will happen if I take the blood test will it come back normal in just over a week or will it still be elevated if they were right?

Should I change my family doctor or is he right? Should I change my GI or is he right?

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

Celiac.com Sponsor (A8-M):


rosetapper23 Explorer
rosetapper23
Posted

Change the family doctor....NOW! He's an idiot!

Skylark Collaborator
Skylark
Posted

Your family doctor is an idiot. If he doesn't like the labs because they don't agree with his misconceptions about celiac disease throw them away and do another??? And undermine his patient's self-esteem while he's at it by telling her it's all in her head? Sheesh.

Keep the GI. He sounds good.

AVR1962 Collaborator
AVR1962
Posted

I agree with changing the doc. I wish there was such a thing as a celiac specialist, seems so many are cluelss. Do you have any University Hospitals near you? I have had real good results with them. You are getting conflicting messages with the results and testing. What you are delaing with concerning your slightly low iron levels, hair falling out, and low D could very well be a result of damaged villa not able to absorb proper nutients. Did doc say anothing about your low vit marks?

Unfortunately, you could go back on gluten, go thru the scopes and still end up not getting your answer. However, it sounds like you ahve your answer, regardless of testing. Have you improved on a gluten-free diet?

Di2011 Enthusiast
Di2011
Posted

Why don't you get your fabulous GI to recommend a primary doc? Call and ask. You are likely to get a recommendation from your GI for a primary that knows, understands and can work with your GI in the coming months/years. You might just be one of this forum members most lucky of patients !

Ellie84 Apprentice
Ellie84
Posted

I'm so happy for you that you found a good GI. Many family doctors are unaware of celiac disease (read my signature). There are many people without classic symptoms, mine were constipation and bloating. My doctors initial reaction to that was: you've just got IBS, without any further testing (also known as the "quit your whining"-approach). I've had to put up quite a fight to get my diagnosis, because here you don't get to see a GI without a doctors approval.

eborzecki Explorer
eborzecki
Posted
  • Author

Yes he said that women often have low vitamin d and he said that my ferratin is okey, my GI said that I should supplement with vitamin d and iron because that's often the result of celiac.

I'm not sure if I'm seeing anything different just yet especially with the hair but I'm determined to make this work

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

Go with the GI. He's the "expert" on celiac. And, yes, it definitely sounds like you have it.

richard

eborzecki Explorer
eborzecki
Posted
  • Author

If I was to start eating gluten again now after being off of it for a week, and I was to get a blood test tomorrow would the results be accurate?

If I was to get a biopsy in lets say a week and I was off gluten for a week and then started back up and was on it for a week would it be accurate?

I am just so confused with all of this!

Ellie84 Apprentice
Ellie84
Posted

The results of the tests are influenced by a gluten-free diet: the results can be negative if there was a lack of gluten in the diet. Patients should be adviced to continue to eat gluten until the biopsy has been done. This was the mistake my doctor made. Please get back to gluten ASAP if you have tests planned in the near future, and tell your GI how long you've been eating gluten-free. I had been on a diet for nearly 3 months, which is long enough to make the test results invalid.

I know that eating gluten will make you ill, but try to go through with it until the tests have been done. A gluten provocation later is worse than eating gluten now, I can tell you that from personal experience :(

Celtic Queen Explorer
Celtic Queen
Posted
I'm not sure if I'm seeing anything different just yet especially with the hair but I'm determined to make this work

Be patient. The hair takes a while to grow back. I can tell you that one from personal experience B)

ravenwoodglass Mentor
ravenwoodglass
Posted

If I was to start eating gluten again now after being off of it for a week, and I was to get a blood test tomorrow would the results be accurate?

If I was to get a biopsy in lets say a week and I was off gluten for a week and then started back up and was on it for a week would it be accurate?

I am just so confused with all of this!

Why would you want to do that to yourself when your GI has already diagnosed you? Your GI can send a formal notice to your GP that you have celiac if you need to stay with that GP or he can send it to your future new more savvy GP.

eborzecki Explorer
eborzecki
Posted
  • Author

Why would you want to do that to yourself when your GI has already diagnosed you? Your GI can send a formal notice to your GP that you have celiac if you need to stay with that GP or he can send it to your future new more savvy GP.

I really don't want to I am just so confused by all of this...I just don't understand why he would make me thing like I'm crazy....

ravenwoodglass Mentor
ravenwoodglass
Posted

I really don't want to I am just so confused by all of this...I just don't understand why he would make me thing like I'm crazy....

"Today I went back to my family doctor and I did not share with him the fact that I saw a GI,"

You need to tell your GP of the test results from the GI if you haven't already and sign a form (if in US) so that your GI can send the records with your diagnosis. Your GP is flat out wrong on the positive blood tests issue but since the GI has already diagnosed you that doesn't matter. The GI is the specialist that would know the most about celiac not the GP. Some GP get a bit 'pissy' when someone goes to a specialist on their own without them refering. That is his problem not yours.

Skylark Collaborator
Skylark
Posted

I really don't want to I am just so confused by all of this...I just don't understand why he would make me thing like I'm crazy....

Because he's a bad doctor! Ever hear the old joke?

"What do they call the last in the class in medical school?"

"Doctor"

Yes, after only a week gluten-free you can redo the testing and it should still be positive.

eborzecki Explorer
eborzecki
Posted
  • Author

In your opinion should I repeat them since I am off the diet for a week already?

Skylark Collaborator
Skylark
Posted

In your opinion should I repeat them since I am off the diet for a week already?

I am not a doctor. You have an opinion by a clearly experienced GI that the tests are valid and you're celiac. You have an opinion by a GP who made you feel terrible about yourself and clearly does not understand celiac disease that the tests are not valid. The decision about retesting is yours alone to make.

Since you want our opinions, if I were you I'd take the blood test as valid, accept that I have celiac, and talk to the GI about an endoscopy to see how my villi look. I never questioned the positive Hashimoto's test I got, which is a similar autoimmmune antibody test. When my doctor repeated it a few years later to see how I was doing, the antibodies have gone up so the first test was definitely correct.

As I said before, one week off gluten will not change the results. Just keep eating gluten until you and your GI decide what other testing you want/need.

eborzecki Explorer
eborzecki
Posted
  • Author

I decided to just stick with my GI im feeling good being of gluten and I'm changing my GP. Thank you all for the advice

Ellie84 Apprentice
Ellie84
Posted

Smart choice :) I misunderstood a part of this topic actually. I thought you still had to go to the hospital to get tested. What a weird situation: why would a family doctor want to re-do a test that a medical specialist has done? Sounds like a bad case of the egos, if you ask me ;)

eborzecki Explorer
eborzecki
Posted
  • Author

I know I know, I couldn't just not redo the test, I redid them 2 weeks after going gluten free.

My initial tests for TTG were 113 the ones I just received for TTG are 68, is a drop like this normal?

mushroom Proficient
mushroom
Posted

The whole point of going gluten free is to stop the antibody production. The antibodies are supposed to go away in the absence of gluten. :) I would say that is a good result. It is the reason we tell everyone to keep eating gluten up until the testing is finished because the absence of gluten can affect the results. Perfect demonstration! :)

eborzecki Explorer
eborzecki
Posted
  • Author

I just didn't think a two week diet would make a drop like that, I guess I am now diagnosed for sure, it's just hard getting this to my head :(

Celtic Queen Explorer
Celtic Queen
Posted

Hang in there. It gets easier over time. And you have a great resource in everyone in this board.

Skylark Collaborator
Skylark
Posted

I just didn't think a two week diet would make a drop like that, I guess I am now diagnosed for sure, it's just hard getting this to my head :(

Sorry, but on the bright side you'll feel a lot better once you've lost all the antibodies and healed.

nora-n Rookie
nora-n
Posted

the drop in antibodies after going gluten free just confirms the diagnosis.

you know there are some rare instances when the ttg is falsely elevated, so this proved it was gluten, and celiac.

Archived

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

Go to topic listing

  • 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. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    2. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
    5. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    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

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.