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

I Suppose I Don't Have Celiac Disease

Mnicole1981

Recommended Posts

Mnicole1981 Enthusiast
Mnicole1981
Posted

My primary doctor just called and said she "thinks" my biopsies came back okay. Alerted me that I was anemic, which we realized last year. I have not heard from the GI doctor. The conversation was weird. She asked me if I had seen the GI yet. If you are asking me that, then how would you think my biopsies came back okay?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Sometimes labs, xrays, and pathology reports will be sent to the doctor that did them & the regular doctor. So in this case, they sent the pathology reports (biopsy reports) to the GI who did them and your regular doctor. Get a copy. Your regular doctor may not understand the results and would prefer the "expert" :blink: GI tell you about them.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I just don't think she even has the results yet. Why ask if I have even seen the GI if you have my results back?

Nobody wants an autoimmune disease, but a medical explanation as to why I was so sick since February would be nice.

kareng Grand Master
kareng
Posted

I just don't think she even has the results yet. Why ask if I have even seen the GI if you have my results back?

Nobody wants an autoimmune disease, but a medical explanation as to why I was so sick since February would be nice.

Let me try again. She may have gotten the results but not understand or feel she should interpet them. They don't just say "Patient has Celiac". She would prefer you speak to the GI about the results. If this were me, I would call the GI office and see if the results are in.

The findings on this may not tell you what is wrong. It may just tell you what isn't. You can try gluten-free and see if it helps. You may be gluten intolerant but not Celiac.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

Let me try again. She may have gotten the results but not understand or feel she should interpet them. They don't just say "Patient has Celiac". She would prefer you speak to the GI about the results. If this were me, I would call the GI office and see if the results are in.'

The findings on this may not tell you what is wrong. It may just tell you what isn't. You can try gluten-free and see if it helps. You may be gluten intolerant but not Celiac.

I think I am going to go ahead and go gluten free regardless. I should have found my own GI. I didn't mean to come rudely if I did.

kareng Grand Master
kareng
Posted

I think I am going to go ahead and go gluten free regardless. I should have found my own GI. I didn't mean to come rudely if I did.

NO. Not rude. I just didn't make it clear.

Call the GI office and see if the reaults are back. Sounds like the only way you are going to find out.

trayne91 Apprentice
trayne91
Posted

I think your dr. Meant have you seen the gi doctor yet - since the results have come back (not have you seen the gi doctor in the first place).

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

Celiac.com Sponsor (A8-M):


Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I'm not sure because she also asked me if he found anything... which she should have known already if she actually had my results.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I called the GI's office today and they stated that they still haven't received the results of my biopsies. It was a week ago today that I had my EGD and colonoscopy.

I joked with my coworkers that it probably came back positive, but since I am Black and it is just not possible for me to have it, they keep checking it over and over again.

pricklypear1971 Community Regular
pricklypear1971
Posted

I called the GI's office today and they stated that they still haven't received the results of my biopsies. It was a week ago today that I had my EGD and colonoscopy.

I joked with my coworkers that it probably came back positive, but since I am Black and it is just not possible for me to have it, they keep checking it over and over again.

I think you should print this and hand it to all the fools who say that. Open Original Shared Link

And I'd be really interested to know if that percentage is influenced by the number of Black Americans who have medical insurance. There are studies out there showing underrepresentation in other conditions - and the train of thought is they just aren't getting tested.

Astrid1986 Newbie
Astrid1986
Posted

So why did your regular doc say she "thinks" your results are okay? Would she have expected to hear from the GI by now, a nd since she didn't, concluded that a ll must be fine?

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I'm not sure. She does stuff like that often. She called me a few weeks ago telling me my FMLA paperwork was ready to be picked up, her intern called the next day saying it was ready. When I went to pick it up, it was not ready. She filled it out when I got there.

I have been with her since I was 18, but it almost seems like she is not listening to you, especially since they started using laptops instead of paper..

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. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    2. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    3. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
    5. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,260
    • Most Online (within 30 mins)
      7,748
    sbr
    Newest Member
    sbr
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • 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.