Discussions By Condition: I cannot get a diagnosis.

This is not coeliakia. Please help someone!

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Anonymous
  • November 12, 2008
  • 08:50 AM

Please help my brother! His illness began about a year ago. He began to lose weight and hair. It was obvious that he has inflammation somewhere in his body. We thought it was cause by his tonsils, they were seriously infected (doctor said, they had "tonsil-stones" in them.) After his tonsilectomy his condition hadn't became better. Then we thought maybe he has gluten sensitivity (my mother read about it and she saw every symptoms on my brother). Then we began give him a gluten-free diet. But it does not work. Since then he has a gluten-free diet for more than two months now, and he is losing weight and hair (all over his body). He has arthritis now, his skin has eczemic stains, and his joints do not bend too much, or just painfully. He gets tired easily, and on his feet the skin is tensed, red and shiny, feels warm when touched. We made some examinations: his intestinal absorbing surface has decreased (that explains losing weight), haemoglobin and iron in his blood is a bit lower than average (it comes from less absorbation I think). Number of lymphocytes in his blood are decreased, number of eosinophyle granulocytes and monocytes increased. Please help where to begin searching what his diagnosis may be! I don't know how much time he has before it becomes irreversible :(

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13 Replies:

  • The first thing that comes to my mind when you mention the joint problems is hemochromatosis, does he have stiffness in the pointer and middle fingers? http://digestive.niddk.nih.gov/ddiseases/pubs/hemochromatosis/index.htm
    qwertyuiop123 453 Replies
    • November 12, 2008
    • 09:02 PM
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  • Thank you for reading! I don't think he has haemochromatosis. The level of iron in his blood is lower than average but as I read, haemochromatosis is some kind of iron overload and it is caused by genetic defects. My brother is 24 years old and his illness began only a year ago. I think it is some infection maybe, that attacked the intestinal system and the joints. Defects in absorbation cause the dermal symptoms and losing weight and hair.
    Anonymous 42789 Replies
    • November 13, 2008
    • 06:56 AM
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  • I would start checking the blood level of Carcinoembrionic antigen and Alpha fetoprotein.I would also check for parasitic infection(Helmintiasis ) and autoimmune diseases(Crohn,Lupus)
    Anonymous 42789 Replies
    • November 13, 2008
    • 09:51 AM
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  • I think first step is an HIV test. After that I think Autoimmune is next most likely bet but that is a long and confusing road.
    gungwane 62 Replies
    • November 13, 2008
    • 01:17 PM
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  • That is a frightening option. But I think it should be considered too. Thank you for the help!
    Anonymous 42789 Replies
    • November 13, 2008
    • 06:31 PM
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  • I agree with autoimmune, does he run fevers? Lymphocytes I believe increase with infection, although I am not sure of that, hang on a minute... Lymphocytes are part of your immune system and are released if there is an infection that needs to be "fought" off So if he had an infection his lymphocytes would likely be high, not low. What about autoimmune? Wouldn't that also mean his lymphocytes would be elevated? Maybe someone else can answer that? What if his immune system was underactive, rather than overactive? Anyone know if thats a possibility? Does he have any allergies?
    qwertyuiop123 453 Replies
    • November 13, 2008
    • 07:24 PM
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  • I read one more time your post and now i`m more positive that your brother is suffering of Lupus
    Anonymous 42789 Replies
    • November 14, 2008
    • 10:49 AM
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  • Bravo gungwane,good medical thinking,aids infection should also be considered
    Anonymous 42789 Replies
    • November 14, 2008
    • 11:02 AM
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  • Has he had an ana?
    qwertyuiop123 453 Replies
    • November 14, 2008
    • 11:46 PM
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  • You don't get AIDS infection. You get an HIV infection which then usually (but not necessarily always) leads to AIDS. It would account for most of the presentation and symptoms, especially the decreased lymphocyte count. Decreased iron also indicates an infection of some kind.
    gungwane 62 Replies
    • November 15, 2008
    • 08:09 AM
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  • Aids isn't actually an infection, even though we say people are infected with aids, it stands for autoimmune deficiency syndrome, which I assume you know. Decreased lymphocytes make sense with aids, not infections, infections increase lymphocytes. I have no idea what they do to iron, but if the iron test was done at the same time the decreased lymphocytes were found, the chances of it being from an infection are very slim because then the lymphocytes would have been increased rather than decreased.
    qwertyuiop123 453 Replies
    • November 15, 2008
    • 08:23 AM
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  • How do you *know* your brother doesnt have celiac disease? Did he have testing? Also, a gluten-free diet isn't something you can do on your own. Gluten is in things you would never think of, like ice cream and vitamins. If you've already had medical advice about this I apologize, but I wasn't clear on it from your postings. Best wishes.
    aquila 1263 Replies
    • November 17, 2008
    • 08:12 PM
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  • Thank you all for reading and trying to help! Sorry for not being able to answer you this long... I think the main problem is, that his intestinal system may be infected or damaged by something. The loss of weight and hair, and a bit low iron and haemoglobin levels can be explained with decreased absorption from the bowels. I think it can be some kind of infection by a parasite or bacteria. My opinion comes from the increased levels of monocytes and eosinophile granulocytes and from the fact that he had a quite serious tonsil infection recently. Yeah, his lymphocyte level decreased, but can't it be due to a long-lasting infection? Can't he "running out" from lymphocytes? If it is not true, that it can be an autoimmune disease too. His internist told him to make an exam called "bowel passage". I don't know how it is called in your language. It is a method when the patient is told to eat or maybe drink something that is marked somehow. So they can monitor how the food is absorbed and distributed in his body. The doctor supposes it can be a Crohn disease (one of his friends was diagnosed the opposite: they told her she has a Crohn disease but she has coeliakia). For my brother coeliakia is not too likely because gluten-free diet didn't show any changes in his condition, and IgA diagnosis is unsure about antybodies related with coeliakia. I know Lupus can be also considered. But it has many symptoms that my brother does not have, and one thing... it is a very confusing story, but until we cannot discard any less dangerous possibilities, I don't want to think about the worst dseases that can come into mind.
    Anonymous 42789 Replies
    • November 18, 2008
    • 07:57 PM
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