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

Want Other Opinion


chasefamily

Recommended Posts

chasefamily Rookie

Hi All pretty new here. I got the results of my biopsy today and everything came back normal, I haven't had any blood testing for celiac but small intestine biopsy came back normal. I feel like I'm getting the run around, I have been sick so much since 1997 to start I was having utering hemmoraging which resulted in an emergency hysterectomy so I would not bleed to death I has lost so much blood and was so anemia, my hemaglobin was 7 but they never gave me blood and after the hysterectomy , it took me a year on iron medicine 3 times daily before my iron was back to normal but my whole body iron count has never returned to normal. They couln't find any reason why I was bleeding, my uterus was healthy looking, no cancer. Then 3 months later I get hepatitis virus of my liver and my liver is inflamed in and out of hospital 3 times off work for 6 weeks, not to mention all the work i missed from the bleeding off and on for over a year , I hemmoraged 4 times over alittle over ayear. Ok irecover from hepatitis virus then 7 months later I get mono (the kissing disease) ha ha I hadn't kissed any body with it. Took me about 6 months to recover from that completely, off work for 6 weeks with that also. Then I am tired all the time and diagnosed with hypothyroidism, ok still tired all the time, get every virus that seems to come around. Have essential thrombytosis, can't find ou the reason why but elevated platelett count between 500 and 700 thousand, not to mention that now I bruise so easily that if my 15 pound dog clims on my lap I get a bruise where every step he takes, I look like somebody beat me up. Ok I just wanted to vent and ask for everybodsy help, my own gp tells me ther is nothing wrong with me and she claims that she can't find what is causing all of these problems, I don't have diarrhea but constipation instead and acid reflux problems for several months plus neausea and sometime vomiting in the morning. I am taking prevacid twice daily but still nautious. Please help somebody I know im not crazy and no body seems to want to get to the bottom of this problem.


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



Celiac.com Sponsor (A8-M):



red345 Apprentice

DEMAND to have a routine blood culture performed. This would most likely identify any active virus, fungus, bacteria present in the system.

Also, try to insist on having a C-reactive protein test run, along with the CBC, ANA, and Sed Rate, if these tests haven't been performed in the last 6 months. Have an A1C test performed to rule out Diabetes.

Odds are one of them will at least point the way to the path of the active problem which is at work, meaning that you will have the doctor's attention.

Thankfully for you, the endoscopy is the most precise test available for the detection of Celiac disease. If he said your test was normal, that means you have no damage to the villa. It may not rule out the possibility that you are in the birth stages of the disease, but even that is unlikely.

Evaluate any and all prescriptions and over the counter prescription medications you may have begun taking within 6-9 months of the onset of your new symptoms. As is the case with any and all medications, new side effects can always appear in individual people, regardless of whether or not they are known side effects.

RDV Newbie

Also check the ingredients of the medicines...they sometimes contain starches etc as fillers or binders ...good luck!

Dwight Senne Rookie

Your digestive problems may be caused by the Prevacid. Ask your doctor to prescribe another medication. Or better yet, tell them to fix the cause, not the effect!

As for your biopsy, find out how many samples were taken and from what parts of the small intestine. This is crucial to getting accurate samples. Also, several so called "normal" biopsies came back positive for celiac disease when given to a pathologist experienced in Celiac for a second opinion.

You may also wish to consider a new doctor. Much of the complaining on this and other boards about doctors is partially the fault of the patients for not changing doctors. Let's face it, just like not every auto mechanic is equally competent, not every doctor is equally competent.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,990
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    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

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.