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I've been sick for 8 months and we aren't close to a diagnosis

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adauer2
adauer2

On July 21, 2016 I became sick with not having an appetite and then I had my gallbladder removed on August 10, 2016. I then ended up in the hospital because I couldn't eat at all. I was then diagnosed with Gastroparesis and Eosinophilic Gasritis. I started Prednisone and everytime I got off of it I became ill for three days at a time and couldn't function. I was then diagnosed with GERD and IBS. Since July I have only been able to eat toast, turkey slices, cheerios, jello, low fat potato chips, gatorade, water, and apple juice. I'll try different foods and then I'll be sick for three days with terrible burning in my esophagus, nausea, and having difficulty breathing like my throat is swollen. A "normal" day for me is eating breakfast and then having terrible abdominal and stomach pain followed by three episodes of diarrhea. Eosinophilic Gastritis is now ruled out due to another EGD but I'm still extremely sick and no one knows what is going on. The most recent blood tests I had done showed that my ESR and CRP levels are high but my doctor said that could be caused by obesity. Also, my IgG4 level is high but none of my other tests for an IgG4 related disease came back as abnormal. I was 18 when I became sick and I was extremely healty until now. I'm now 19, a freshman in college, and I'm on disability because one minute I am fine and the next I can't function. Please suggest anything. Please help. I have no idea what is going on and no one else seems to know either. Could this possibly be an autoimmune disorder?

1 like, 12 replies

12 Replies

  • rocky31676
    rocky31676 adauer2

    Posted

    This definitely seems to be an Autoimmune disorder. 

    Have you done test for autoimune disorder - ANA, anti-CCP, RF and anti-dsDNA ? 

    • adauer2
      adauer2 rocky31676

      Posted

      I've had all of those done except the anti-CCP and they all came back normal😔

    • margaret22116
      margaret22116 adauer2

      Posted

      You can have normal bloods but it doesn't rule out auto immune disease.

  • pknaturgrl
    pknaturgrl adauer2

    Posted

    CHeck for allergies. ANyone having the trouble you are having  usually has some, which can cause or contribute to other problems. The best way is to eliminate anything you love too much/ eat everyday or makes you sick ,  one at a time, for five days (The time it takes to clear your body), then try it in a single food meal. Your body will give you its true reaction if you are sensitive to it in symptoms. Alkaselzer gold can ehlp neutralize any reactions you get, because it will alkanlinize you (Allergies acidify you) Good luck, it will take some detective work to get through this!

     

    • rocky31676
      rocky31676 pknaturgrl

      Posted

      Alka seltzer gold has citric acid(1000mg)  as one of the ingredients
    • pknaturgrl
      pknaturgrl rocky31676

      Posted

      Yes, but the active ingredients are sodium & potassium carbonate, which will buffer acidity. MInerals are better absorbed in a slightly acidic environment, which is probably why they added it. You can also try buffered C powder for the same effect.

    • adauer2
      adauer2 pknaturgrl

      Posted

      Thank you so much for this! Since you said allergies acidify you, is that why I could possibly have GERD out of nowhere and before when I was healthy I never had it?
  • margaret22116
    margaret22116 adauer2

    Posted

    Yes I would say auto immune. Your blood tests are showing auto immune. I was diagnosed 12 years ago with auto immune disease when no one knew what was wrong with me. The fact you respond to steroids also suggests auto immune issues.
  • Aphra
    Aphra adauer2

    Posted

    I know your battle is tough & can be discouraging when we don't have a "black & white" answer. I suffer from Immunodeficiency & autoimmune problems for over 6 years. Labeled with too many conditions to even list! But I have the similar GI conditions as you.

    One condition is IgG deficiency with Subclass I & II (CVID), which is tx with IVIG Infusions. However, 2 people with the same condition can have totally different symptoms, meds work on 1 pt, but not the other. We are seriously lacking funds for extensive reseach & devolpments. Especially since my 1 monthly infusion is over $13,000, yet my GI is more stable since staring tx.

    I've suffered for almost 6 years, spent over $100,000 only to be given another label. I would check in with an Immunniologist or a Rhemotolgist. They tend to have tests & knowledge most doctors are not familiar with. They can determine if it's autoimmune related.

    Also, Brat diet really helps me when GI Distress is horid. Bananas, rice, applesauce and white bread toast only.

    -Pouring oil on my stomach & massaging in a clockwise fashion also helps me. It's supposed to help circulation. I know it's frustrating and scary, but Hold On, keep reaching out to others with these conditions & remember your not alone.

    P.S.- I'm not a doctor, just spreading my experiences and comfort.

  • adauer2
    adauer2

    Posted

    Thank you everyone for your replies! I have seen a GI as well as an allergist/immunologist and they both think it is autoimmune related but they have talked about sending me to Clevelan Clinic and even Mayo at this point. I was curious though about a medication I'm on. I was first diagnosed with Eosinophilic Gastritis and was put on 40mg a day. Then I was tapering off .5mg every week. By the time I got to 1mg I would go dowd and not be able to function. I then started at 20mg and tried to taper off again and I was able to be off of Prednisone for five days and then I went down again. Due to me being in college we requested that I stay on 1mg a day. My symptoms aren't completely gone but at least I'm able to function 95% of the time. My recent blood tests showed an elevated SED rate, CRP, and IgG4. My doctor thinks that the 1mg of Prednisone is a placebo and I don't need it. We still have no idea what I have and I'm still only eating five foods but the only thing that keeps me stable is Prednisone. I already feel like I'm crazy because I have a chronic invisible illness but am I truly crazy with the Prednisone? Please tell me what you think. 

    • rocky31676
      rocky31676 adauer2

      Posted

      The reason you feel good from prednisone is because your hypersensitive or inflammatory (CrP and ESR elevated) autoimmune disorder is under control. You need to find out whats causing this, or you have it in your family (genetic) ?

      Also , you need to stop the eosinophilic cause, that is mosly an allergic reaction from food/ drug or chemical.

       

    • adauer2
      adauer2 rocky31676

      Posted

      So I'm not really crazy that 1mg actually helps me. No one in my family has what I have. That's why we have no idea what is going on😔

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