Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

2 Docs 2 Oppions
0

5 posts in this topic

I'm so confused. On friday I got the results of the blood work. They are positive in one area(anti-gliden) and considered within normal range in the others. The tests were preformed by my rhmatologyst(sp). i got the results from my primary care physisian who stated that I tested positive for celiac and needed to go on a glutin-free diet immedeatly. I called the rhmatologyst to get some things clearified, they told me I needed a stomic biopsy.I did resurce on the net and both here and other places said that if a stomic biopsy is needed you must maintain diet so not to skew the results. So I called again on monday, doc wasn't in. Today when I spoke to rhatologysts nurse she asked why I had requested a biopsy(I didn't, they told me I needed one) and told me that there was no way to get me into a gastro-doc before I move....anyway by primary care docs nurse calls me and reads me the consult notes that were faxed to them. She was a bit unsure about it all.They pretty much said that even though the tests show I have a positive factor for celiac, that the she dosen't think I have it and that I should seek futher treatment for my gastrointestanal issues once I get to my new location. In my oppion she made me sound like an ass and has confused the hell out of me. Do I have this...do I not. The primary care nurse told me that in her oppion positive results meen positive and that I do in fact have this problem. My primary care doctor says to try a glutin-free diet and that I should start to feel better within a few weeks. My rhomatologyst has yet to return my calls and when I call she has a nurse speek to me.So I have one doctor (willing to take the time to speek with me over the phone and explain everything, give me hand outs on everything )telling me I have this problem and another doctor despite positive results says I dont. Help me sort thew this.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Dr.s really do not know enough abut Celiac yet, especially if they are not Gastroenterologists... IMHO, you have elevated results therefore you have Celiac... or at the very least a Gluten Intolerance. You can wait for another Dr. to agree with the one Dr. and give you a biopsy and take a chance that they don't take enough samples and miss any potentially damaged areas of intestines. Or, you can take your health into your own hands and try the diet. If you have a positive response to the gluten-free diet, then you will have your answer, Gluten is bad for you. If no improvement after a while, you can go back on gluten and resume testing to find out what is wrong. But I'm willing to bet you that because you have an elevated marker, you will benefit tremendously from a gluten-free diet.

0

Share this post


Link to post
Share on other sites
Dr.s really do not know enough abut Celiac yet, especially if they are not Gastroenterologists... IMHO, you have elevated results therefore you have Celiac... or at the very least a Gluten Intolerance.  Or, you can take your health into your own hands and try the diet. If you have a positive response to the gluten-free diet, then you will have your answer, Gluten is bad for you. If no improvement after a while, you can go back on gluten and resume testing to find out what is wrong. But I'm willing to bet you that because you have an elevated marker, you will benefit tremendously from a gluten-free diet.

<{POST_SNAPBACK}>

I thoroughly agree with nini. You have one positive test, biopsies can be inconclusive and give false negatives. Go with the gluten-free diet, (what have you got to lose?) and see what happens in three weeks. If you do see a lessening of symptoms, then you are on the right track. Although I sure don't envy you going gluten-free while experiencing the stress of moving. Good Luck!

0

Share this post


Link to post
Share on other sites

I can relate. My primary care doc said if avoiding gluten helps, then do it, that's enough for my treatment. He also said I am the most successful on the diet of anyone he's treated. But then I got sent to a rheumatologist because I had an elevated ANA (anti-nuclear antibodies). I liked the rheumy at first, especially because he knew something about gluten, but then, when he couldn't find anything specific fitting his criteria, he blamed all my problems on gluten and told me to get into a gastroenterologist. I could buy this excuse if I was still consuming gluten but at that point I had been gluten free for 8 months. Anyway, I get to go to the gastro tomorrow. I feel like I'm being shipped around everywhere.

I don't need a Celiac diagnosis, personally, because I know I can't tolerate gluten. I am hoping the gastro tomorrow won't be mad at me because I am gluten free (nearly a year now) and that he will look beyond just what has already been discovered. I have noticed docs, when they don't quite know what is up, will glaum on to a prior mystery diagnosis. I am usually careful to not reveal what has been questionably suspected for me when I'm at a new doc because of this.

What's most important is knowing what helps you, not always what the docs speculate about. If they say no, you don't have a gluten problem, but you feel better off gluten, then don't eat it.

Take care

Stephanie

0

Share this post


Link to post
Share on other sites

I can relate. My primary care doc said if avoiding gluten helps, then do it, that's enough for my treatment. He also said I am the most successful on the diet of anyone he's treated. But then I got sent to a rheumatologist because I had an elevated ANA (anti-nuclear antibodies). I liked the rheumy at first, especially because he knew something about gluten, but then, when he couldn't find anything specific fitting his criteria, he blamed all my problems on gluten and told me to get into a gastroenterologist. I could buy this excuse if I was still consuming gluten but at that point I had been gluten free for 8 months. Anyway, I get to go to the gastro tomorrow. I feel like I'm being shipped around everywhere.

I don't need a Celiac diagnosis, personally, because I know I can't tolerate gluten. I am hoping the gastro tomorrow won't be mad at me because I am gluten free (nearly a year now) and that he will look beyond just what has already been discovered. I have noticed docs, when they don't quite know what is up, will glaum on to a prior mystery diagnosis. I am usually careful to not reveal what has been questionably suspected for me when I'm at a new doc because of this.

What's most important is knowing what helps you, not always what the docs speculate about. If they say no, you don't have a gluten problem, but you feel better off gluten, then don't eat it.

Take care

Stephanie

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,110
    • Total Posts
      919,434
  • Topics

  • Posts

    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • What a gross title–it bothers me and I wrote it! It wasn't my idea originally. The research paper the data came from was entitled, "Experimental hookworm infection and gluten microchallenge promote tolerance in celiac disease" published recently in the Journal of Allergy and Clinical Immunology. View the full article
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,148
    • Most Online
      1,763

    Newest Member
    MichaelDG
    Joined