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

Fed Up With My Doctor

JessieFree

By JessieFree
in Doctors

Recommended Posts

JessieFree Apprentice
JessieFree
Posted

I had a positive biopsy so my GI told me to go gluten-free. I did for 2 weeks (without improvement) I called him today to check on my blood work and he said it was negative so now he wants me stay of dairy and try another medication. He says he'll have to look for something else and not to worry about going gluten-free any more. He didn't even call to give me the results I had to call him and leave him like 3 different messages before he would get back to me. The last time I went in he told me he would want me to stay gluten-free even if the blood test was negative now he isn't saying that. What is going on I feel like a lab rat and nothing is working! I just want to know whats wrong with me so I can fix it.

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

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

It's very common in adults for the blood tests to be false negative. If you have a positive biopsy you really need to stay gluten free, and you need to give it more time!

Pauliina

Guest j_mommy
Guest j_mommy
Posted

Biopsy is the "gold standard" for testing celiac. I would definetly stay gluten free, For some it does take awhile to start feeling better. Be sure you're not eating any gluten...hidden gluten ect or getting CC'd~~~

BRUMI1968 Collaborator
BRUMI1968
Posted

I ditto the other folks -- AND note that dairy should probably be stopped too. Lots of folks with Celiac Disease have difficulty with dairy, in part because the lactase required to digest lactose (the sugar in milk) is secreted through the very parts of your small intestine that are squished and not working so well. Lots of us are also reactive to casein (the protein in milk). I think all folks who try gluten-free who have any remaining issues, should go dairy free for a spell too, see if that doesn't clear things up.

I know when I quit dairy, my constipation virtually vanished.

Anyway, good luck to you. Remember that doctors can't know everything about everything, and in the United States, knowledge about Celiac is WAY BEHIND THE TIMES. (My doctor told me I was "mildly" celiac, which isn't even possible - that would be like being slightly pregnant.)

Good luck.

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. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    2. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    4. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    5. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.