I *really* need board wisdom

Discussion in 'The Watercooler' started by Steely, Feb 8, 2012.

  1. Steely

    Steely Active Member

    I have tried posting this before -- and somehow the post gets off track -- but I am going to try one more time in a different forum.

    I *really* need advice about Matt and his health. I am extremely worried, as are the doctors. I will try to keep this concise so that it does not lead to any confusion - (yet for anyone, even the doctors., this is confusing.) I just need ideas....please....of what to do.

    -Matt is currently 6'4 and 160 lbs
    -Matt has lost 30 lbs in 5 months
    -Prior to that he lost 20 lbs in a year
    -He has issues with "thinking" he is fat and talks about it if he eats too much
    -Yet at certain times, in the right environment, he does eat a sufficient amount
    -Since he was a child he could not eat dairy. That has now escalated to him throwing up or getting a migraine or diarreah if he eats dairy, foods with heavy saturated fats, nuts, and red meat.
    -He says his stomach feels bloated and constipated almost daily - even though he is not constipated
    -He feels naseaus, has a headache or backache every day
    -Chrohns and auto-immune disease run in our family
    -He has a permanent rash on his ankles and feet - possibly indicative of autoimmune
    -The Dr has done blood work and his liver enzymes are elevated - she now wants him to go to a GI

    I just need feedback. Where to go, what avenue to pursue. I truly cannot tell if this is an eating disoder, an auto-immune disorder, both, or something totally different. I am truly in need of some of your wisdom.

    Thank you
  2. buddy

    buddy New Member

    Is he showing signs of starving then???? the bloated stomach etc... I dont know enough about how that happens if it is only at end stage starvation or if anyone can get that if they just lose too much weight.

    Does he take laxatives or anything... they can backfire and cause his body to be dependent, bloat and he can get really constipated.

    When is he going for testing?
  3. Hound dog

    Hound dog Nana's are Beautiful

    I'd say the GI doctor is your best bet. You need to rule out any possible physical issues before anything else.

    If not GI related, could be a combo anxiety / eating disorder, but if he can eat ok in the right environment I'm thinking eating disorder is probably not it. He might forget to eat or not be hungry due to bloating and or feeling nauseous, that doesn't really count as a eating disorder, though. As I've said before, severe anxiety can do quite a number on your GI tract. I know it has mine. If my anxiety is super high......let's just say the flu would probably be more pleasant. ugh

    Is he on board for the GI doctor? Because a heck of a lot of those test are downright uncomfortable as hades, as well as the preps for the tests.

    Has his thyroid been checked?

    When talking to the GI doctor, I'd leave out the "he thinks he's fat" part, let psychiatrist / therapist handle that area. You mention that to a GI doctor and he'll not be looking too hard for other reasons.
  4. Signorina

    Signorina Guest

    Definitely sounds like a GI issue --

    I agree - let them rule out all potential physical causes before you even mention that you are thinking an ED

    Sounds a lot like IBS

    hope he feels better soon
  5. slsh

    slsh member since 1999

    Steely - thank you and Matt are about same ht/wt - actually thank you is probably about 150. To me he looks extremely thin, but... I know he eats well, so I'm letting it be (plus he had complete physical in the fall and blood work was fine, and he's healthy). At one point he weighed about 230, but he was taking his medications (risperdal really fueled his appetite).

    Given Matt's physical symptoms, I would go the GI route - between the rash, the sense of bloating and nausea/vomiting and food intolerances, this doesn't look psychological to my lay eyes. Could be gallbladder or Crohn's or gastritis or celiac sprue or who the heck knows what. Just as we all did back in the beginning with- our difficult children, I think you want to rule out physical before assuming it's all psychological. It could very well be that the *symptoms* are making him think he's fat, or talking about eating too much because of a very real discomfort or sense of something being off.

    I would not go into great detail about his psychiatric history. I think there's a tendency for doctors to make a beeline for a psychiatric cause (I'm hugely cynical) without fully investigating honest to goodness physiologic/metabolic causes for symptoms. on the other hand - with liver abnormalities, I most definitely would detail every medication he's ever been on.

    Just my 2 cents. Make sure the physical stuff is okay before jumping to a psychiatric cause.

  6. InsaneCdn

    InsaneCdn Well-Known Member

    Start by assuming its a physical health issue, and leave the rest off the table until all physical reasons have been ruled out.

    For anyone who tends toward anxiety (like me), a physical problem can cause anxiety, which then multiplies both the physical and the mental health issues. For me, its Obsessive Compulsive Disorder (OCD) that rears its head, but it can be anything. But usually I find the base cause is something physical.
  7. tiredmommy

    tiredmommy Site Moderator

    I'm thinking Crohns. The wright loss is a big symptom, I think. Also, I have IBS with-chronic constipation. This is probably too much information, but the constipation occasionally gets so bad that I will pass a loose stool because it's the only way my body cam eliminate waste. You may also want to look into diverticulosis or even gluten allergy.
  8. susiestar

    susiestar Roll With It

    He completely and totally has some medical problem. Has it always been this way or did this happen after the various Residential Treatment Center (RTC)/wilderness programs (can't remember if he did a wilderness program but thought one program had him out in the woods or something for an extended period of time on his own.

    I would see the GI doctor, try to get him to follow the gluten-free, casein-free diet, and get him scoped from stem to stern, digestively. It isn't fun, but it needs to happen. This is NOT anything that sounds like "eating disorder" to me, at least not anorexia/bulimia type. I could be celiac, it could be something else, autoimmune sounds highly possible.

    But there is one other thing. Have they done a COMPLETE panel for parasites? NOT jsut the normal ones for your area, for ones in the area where he was out in the wilderness.

    THis is going to be gross. I will be as non-too much information as possible. It is also kind of funny, so feel free to chuckle at the stupidity. It isn't MY stupidity.

    Years ago when gfgbro was in high school he got a strange gastrointestinal problem. Vomiting, explosive diarrhea in his pants now and then, totally not normal. At the time he was of the mindset that if it was good enough for his dog it was good enough for him. Sadly this did NOT mean he washed the dog's dishes ever. I did that, andd he used to yell and scream because the dog was "natural" and the water was "natural" and dirt was "natural" but soap wasn't and cleaning the dog's water dish wasn't and how dare I. Yes, he was NOT drunk when he went on these rants. This is just pure teengfgbro stupidity.

    He took it further. He was DRINKING out of the dog's water pail. Regularly. One day my mom was really upset and told me about how he had all these stomach probelms and the docs couldn't figure it out and she was so worried. I suggested she take hm to the vet. After all, he was eating and drinking out fot he dog bowls (outside dog who HATED being inside, ate her own poop no matter what, and he would munch on her dog food out of her dish even after she had eaten some of it.) so chances are if he had something the dog did too so the vet should probably see them both.

    My mother was HORRIFIED. TOTALLY. She told the doctor but had a conference out of town. I had the distinct honor of having to go to the university vet school to pick up bro's wormer. EVERYONE in the vet school clinic knew about it. I thought it was HILARIOUS, largely because I am his little sister after all. Even worse, four mos later he had all the symptoms AGAIN because he was doing the same stupid thing and got the same worm from the dog. Or maybe he gave it to the dog. WHo knows?

    I am NOT NOT NOT saying that Matt ate or drank after his dog. Not at ALL. I am saying that if he was out in the wilderness with-o proper supplies/gear/training, he could have gotten some parasite that no one can diagnosis because it isn't common in people or it isn't in your area so who in your area would test for it? Parasites and bacteria, etc... can live a LONG time in the body. Some can even get their by burrowing through your skin but you don't feel it because they are able to numb the area or you thought it was a spider bite.

    If I am wrong and he wasn't in a wilderness area/program, I am sorry and ignore the idea. Well, except for the laugh about gfgbro's idiocy.

    I can see how you could lose a lot of weight if eating made you feel nauseous. My ibs had learned a new trick and now I want to vomit or do vomit with each poop. It is NOT fun but there isn't much that can be done. donnatol (rx medication) is a big help because it keeps things from spasming.

    Anyway, this is just what came to mind. I do think this is more medical than psychological though.
  9. TeDo

    TeDo Guest

    These have been really good suggestions. Start at square one (rule out physical). My first thought was medications. Since so many medications are processed in the liver, that came to my mind first and it could even be medications he hasn't taken but did something that has just gotten worse. I agree with the others that psychiatric info should be kept to a minimum for the obvious reasons.

    Sending supportive {{{HUGS}}} your way. Keep us posted. by the way......make sure you're taking care of yourself too!! That's an ORDER! *smile*
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I do think you need to have him checked out by a GI doctor from stem to stern. It wont be pleasant. Jamie has had two colonoscopy's. Yuck. He also had one endoscopy. He is braver than me. I am like TM and have IBS and it causes constipation and severe cramping. It can be so bad that I turn white, sweaty and almost pass out from it.

    The fact that he has noticed certain foods that make things worse is a sign that can be worked with for the doctor. Until he gets in there is a book by a doctor about food allergies in kids that might help you. The author is a woman but I cant remember her name. It came out when our boys were quite young.
  11. HaoZi

    HaoZi Guest

    If he hasn't been eating much then eating a regular sized meal will make him bloat anyway. A full GI check up is definitely a must-do. I wouldn't rule a psychiatric issue adding on problems, but let's handle the physical problems first, maybe the GI alone can get through to him, you never know. Like I said elsewhere, tell him he has to be strong enough to keep up with my difficult child when we come out your way this summer, maybe that will encourage him ;)
  12. DaisyFace

    DaisyFace Love me...Love me not

    I'm thinking the rash is probably a secondary issue to the GI issue...

    If he's not eating enough, he's not getting balanced nutrients - and it will show on the skin as acne, rashes, dry patches, etc. Improper nutrition will also lead to headaches, fatigue, irritability and (interestingly) trouble with the digestive sytem.

    So yes - start with the GI doctor....but ALSO make sure to address the nutrition issue. He might have gotten himself into a vicious cycle of "I didn't eat so now I don't feel well - and because I don't feel well I don't want to eat." He may very well be making his problems worse as he goes (his own worst enemy, so to speak)...

    Hope you find some answers soon!
  13. Steely

    Steely Active Member

    Thank you guys for the clarity. I get so confused day by day with him. I do think the GI is a must, as well. He is not so happy about it at all -- but the Dr also freaked him out. She had that visible look of worry on her face, and that just sky rocketed his fear of dying. Yet, then he gets home - and doesn't eat because anything because it makes him sick. :groan:
    I sent him Schawnns meat dishes yesterday and he about had a cow. How could I do such a thing - he looked like such a loser - blah, blah, blah. WTH. Arrggg.
    Since I am going the route of this not being psychological I told him that he HAD to eat protein every single day. Period. He can not exist on one bowl of pasta a day. And I seriously am sick of him being sick because he just doesn't eat. So we will see if eating protein helps (or the better point, whether he will listen to his dumb ol Mom).
    I know protein is harder to digest than pasta - but I think not eating protein is making his blood sugar all caddy wumpus, leading to more nausea, etc.

    Yes, he was out in that wilderness program - which where he got *really* sick both mentally and physically. All they had for him to eat was peanut butter and beans. Well, he has always been allergic to peanut butter, it makes him sick, and it also makes him severely irritable. They didn't care. He also could have picked up a parasite there. He also has had well water - so the dr tested for that bacteria. Not sure if she tested him for parasites though.

    Do you think being on all the medications he was on for so many years could have permanently affected his liver? Now he is just on Lamictal - which the Dr thinks could also be causing the stomach issues - but he has been on that for 5 or more years - so I kind of doubt it.

    Given the genetic factor to auto immune diseases in my family I am leaning to that, plus he has severely messed up his body due to not eating. Throw in anxiety and Obsessive Compulsive Disorder (OCD) - and you have the mess he is in.

    Thanks for letting me bounce ideas off of you. It gets just so muddied when on top of it he says he gained a pound, so he can't eat. But in the same sentence he says "he feels fat because he is bloated". So which comes first, you know.
  14. Steely

    Steely Active Member

    Dr has test results and now won't talk to me, says I don't have the right privacy form filled out - but she needs to talk to Matt ASAP. OK, now I feel sick.
  15. TeDo

    TeDo Guest

    Be with Matt when they talk to him. YOU need to know what is going on as much as he does. Also make sure he signs a release of information for you to EXCHANGE information about him with them. That way the information can go both ways.

    It sounds like they have figured something out and I can understand your frustration. Will he totally understand EVERYTHING they tell him? Will he remember EVERYTHING to be able to tell you? If not, you need to find out with him.

    {{{{(((HUGS)))}}}} to BOTH of you.
  16. Steely

    Steely Active Member

    TeDo, Matt is 2 hours away from me, unfortunately - and I KNOW he signed that form, I saw him do it. BUT - all the bloodwork came back normal. PHEW. No HIV or Hep, or any of the big worries. Thank god. Now on to get the GI appointment expedited.
  17. Josie

    Josie Active Member

    I would look into celiac disease/gluten intolerance. The GI doctor can test for it, but whatever the testing shows, it would be worth a try of the girlfriend diet. There is a growing recognition, even among doctors, that some people have gluten sensitivity that can cause problems, without having positive celiac tests. It is very common for it to be missed though.

    A lot of Matt's problems could be explained by gluten intolerance. There is even a rash that can go along with it. Mental problems, too.

    My younger daughter had a stomach ache for the first 8 years of her life, but always tested negative for celiac. Finally, I did an alternative test on her which showed she had gluten and milk intolerance. Giving those up made her stomach problems go away. The rest of us didn't have stomach problems but more psychiatric symptoms which went away with no gluten.

    My older daughter was a difficult child until we found out about this. Now, she doesn't stay on her diet all of the time and has her moments of GFGish behavior, but it is rarely like it used to be.

    This is something he can try on his own. The only real reason to get tested by a doctor is if he wants to know if he has official celiac disease. If he does, he is supposed to be on that diet no matter how he feels. If he tries the diet and feels better, he may just do it anyway. No one in my family is officially diagnosed. Some of us have been tested and it was negative, but we all feel better girlfriend.

    There is girlfriend pasta that is pretty good. I could tell on my first day that it was going to make a difference for me and I didn't even think I had a problem with it.

    We used Enterolab for testing, if you are interested in doing an alternative test yourself. What convinced me, though, was trying the diet.

    Good Luck. I hope you can find an answer for him.
  18. TeDo

    TeDo Guest

    If everything was normal, why did they have to talk to him ASAP?
  19. Fran

    Fran Former desparate mom

    My thought would be an endocrinologist. And they will not tell you anything about your over 18 yr old child. I don't even get easy child's grades and I pay the tuition. I get no medical info from his doctors unless they sign a form allowing me access.
    Good luck.
  20. susiestar

    susiestar Roll With It

    We had allergy testing about 7 yrs ago and got some interesting info from our allergist. He is nationally known, lectures, etc.... He does not trust ANY food allergy testing, regardless of the method or lab. He says the rates of inaccuracy are just very high and MANY people show NO signs of allergy or intolerance when their bodies are actually allergic/intolerant. He told us to do the 6 week elimination diet and then slowly and carefully test our bodies with small amounts of the food. If we felt really awful or saw signs of reaction (like thank you's cheeks turning red and getting a really coarse texture almost like they were chapped when we knew they were just fine/normal before he at the food) then we would know it was NOT a food that person should eat. He felt that the testing CAN give accurate results but it wasn't reliable enough to justify the costs. I know people will not believe it, or will argue, but most doctors will do the tests and if you get a positive result for allergy then they tell you to do the diet and then re-introduce the food to "confirm" the testing.

    General tests for bacteria/parasites are fine, but if you don't know specifically what parasites are in the area, then you won't have a clue what to look for or how to treat it. Where I live there is a type of worm that lives in the soil and most dogs and outdoor cats have them. You have to keep an eye on the pet and worm often because it is really easy to get reinfected. This is NOT something people normally get and the normal medications they use on people don't work on these. That is why we had to go to a vet clinic to get medications for my brother. The medications were safe for him, just not something most people ever get. Matt could have gotten something out there that the docs might not have a clue about where you live now.

    I do think his diet is playing a big part of things. The pasta may be one of the worst things he can do if he has a gluten allergy/intolerance. You are right about the protein. It is crucial.

    With stomach problems it is so easy to get into a really nasty cycle of not eating enough, then eating and getting horrible stomach cramps, and then not eating, and on and on. medications can help wtih the cramps. Have him avoid immodium like it is the plague. Bentyl or Donnatol would possibly be a LOT easier on him. They ease the cramping but they do NOT plug you up the way immodium does. Donnatol has 4 diff medications in it, and it has made the most amazing difference with my IBS.