Need Fast Help - Deteriorating Fast - Finally Clicked It Could Be Gluten

[castor]

Hi, my first post here. I only realized a few days ago that there was celiac disease... and it may have been ongoing for a while now but was masked by a lot of other things (used to feeling like I've been run over every day from other medical problems) I am 24 and am bi-polar type one, or so they say/think/guess as they throw pills at me and try and find one that doesn't send me to the hospital... um that's another topic entirely.

I'll try and explain as much as I can that is going on while trying to sound coherent at 4am and not make this a book.... I really need somebodies advise right now as I have nobody around me in my life I can use for support or to talk to. I'm scared and I feel like my body is going to waste away very soon if I don't do something, but I don't know what that is that I need to do, call my family doctor, just go to the hospital? I need some advice soon as I am going to try and call my doctor I think in about 6 hours and I have no idea what to tell him.

Okay, well, this is what is going on with me/my body at the current moment - (this is what I need advise on what to do so I will put this first and then put some background after if anybody wants to keep reading)

Current symptoms - recent symptoms

The big thing right now is I am losing weight VERY fast. It started about three months ago and has accelerated a lot in the last week. I first attributed it to a new very physical job but the numbers didn't make sense. I was eating 3-4,000 calories a day, after a while making myself eat more but was still losing 2-3 pounds a week. I started at 220 (when I was 16 I was 154, then over the next 8 years despite all efforts to not gain I went up to 220) and now 3 months later I am 182, so almost 40 pounds in three months.

The think is I've lost 6 pounds in the last 2-3 days. I watched myself just earlier today go from 183.2 to 182.0 in the matter of 8-10 hours while I had been eating during that time, but had another quick spout of D? that lasted a couple hours.

I have been bruising very easily which I just thought was from getting banged around at work, but recently realized I never felt myself get any bruises, they would just show up all over my hips.

My teeth have stained very badly and they fixed two cavities once, and there are cavities around the fillings again.

I have constant back and neck pain, and sometimes my knees or other joints, but I always attributed that to a car accident where I was ejected.

They had done e-rays of my neck and said I had mild scoliosis

I've lost over an inch in height somewhere along the way, was close to 6 foot 3, now around 6 foot 1.

Recently been horribly irritable, snapping at people, strangers even, going off on my mom for no reason when she calls to see how I am - attributed that to my supposed mental illness

I have ZERO energy, but I never had much energy, was always just called lazy

insomnia (obviously as it is 4am) but I will easily go 30-40+ hours without sleep - was always attributed to mania (bi-polar)

My body does not like to digest eggs, but more of if I eat a scrambled egg it goes right through and leaves me almost screaming from the pain (had this problem since I was 14 but just cut out large amounts of egg completely from my diet)

For the last few years I would have regular boughts of D, usually for a day ever two weeks or sometimes once a week, sometimes it would last for 2-3 days, but it always went away and I would be fine after it stopped. Recently it's gotten worse and three days ago I had to run to the bathroom 14 times in the span of 7 hours - which was when the current weight loss spiral started. I realized though after reading about celiac disease that I had been visiting my sisters and most of her food is whole wheat (her diet). So I was eating a much higher amount of gluten than usual and now the last few days I feel like I am literally going to just wither away. My ribs are now sticking out a lot and my jeans look like I have a potato sack on.

I think I will just stop there and if anybody needs me to elaborate on something just ask.

So now I am almost convinced it's celiac disease, everything points to that, but what do I do now? I read there are blood tests to first check for the ... antibodies? but do I just call up my doctor and tell him to test for it? But with losing weight so fast the last three days and all I can do is lay there as there is no energy for much else.... Um, it's looking like my body isn't digesting a lot or absorbing much right now, don't mean to sound gross but my stool looks only half digested.

My temp also randomly spiked and I got a reading of 100.4, but it left as quick as it came.

What do I do, do I just call my doctor and make a very soon appointment, do I push on that I am not doing well atm and see what he says to do? Or do I just skip the doctor and go straight to the hospital if the rapid weight loss continues?

The 'good' thing is I have medicade disability because of my mental illness so no mater what I do it won't cost me anything, but I am very wary of looking like I am abusing the service.

Please, any advise if did get through this drivel.

Thank you for your time.

[darlindeb25]

If you have the coverage, then get tested. Do some research and go to the doctor knowing which test need to be done. SOme doctos do not have any idea. If you get a negative, then go gluten free anyways and see what happens. A gluten free diet can not hurt anyone, and it may be the answer to your problems.

Good luck!

[ravenwoodglass]

You do sound like one of us. You should go ahead and call your GP and talk to a nurse. She may be able to order the blood panel without you having to wait for an appointment. Do not go gluten free yet if you are planning on having blood work or biopsy. You need to be fully gluteny when they test for any chance of the tests coming out correct. There are a lot of false negatives even for folks on a full gluten diet so after you are done with any testing you desire to do get yourself gluten free, strictly for a bit and see what happens. Make sure you check any meds you are on for gluten statis, especially the psychotropics. Even small amounts in meds and toiletries are enough to keep you reactive especially if you have gluten related neurological issues.

Feel free to ask any questions you need to and do cruise the board.

[jerseyangel]

Hi Castor,

I had the weight loss, bruising and D among other symptoms including the emotional ones. I would suggest you get tested if possible. Tell your the doctor you need the Celiac Panel, which consists of these:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Make sure you are eating gluten up until testing--if you try going off of it before, you will skew the result. Good luck and I hope you find an answer

[ohsotired]

Hi Castor,

I also had the weight loss, bruising and D, but alternating with C. I have also shrunk in height and have discolorations and some cavities in my teeth. No energy, and can't gain the weight back for anything.

You definitely sound like you belong here.

I agree with the others. Take the list of blood tests to your NP or doctor, and ask for them. Demand them if you have to.

If you get negative blood results (and no biopsy, or if you do the biopsy and it's neg too) then go gluten free and see how you feel.

I hope you get some answers soon!

[CarlaB]

Have the celiac disease testing done. It's very easy and will give you answers.

If it doesn't turn out to be gluten, this may be what you're dealing with. Open Original Shared Link

[castor]

Oh wow, thank you so much for all the replies and help. I was pretty distrought last night. It's just been one thing after another medically for the last almost 9 years. Doctors are getting sick of seeing me.

I have an appointment with me GP at 1:15pm today (friday). I am going to bring that list of tests to do with me, thank you for that, I had no idea what to even tell him when I saw him other than my symptoms and I think I have a problem with gluten. Now I will have spefic tests I can request, thanks again.

I had read when I first suspected gluten a few days ago that you need to continue eating gluten for the testing which I found is not going to be a problem as I looked through my pantry and most everything has wheat even listed. (a lot of things it's the main ingrediant - I have lot of pasta type stuff..... )

Thank you CarlaB for suggesting lyme, I'm kind of worried it could actually be that after reading that symptom list. I stopped counting how many I had after a while.....

I plan to mention lyme disease to him too, I just hope this guy is up to taking this on with an open mind of what it could be. I got a new GP after my last I had most of my life told me I was just crazy and to stop bothering him and I was apparently just med seeking. So, I have only been to this new guy a couple times, but I choose him as he was taking new patients with medicade. Thank god for medicade, that I already have it now. That at least is one thing I don't have to worry about much at all, the finances of all this.

Thank you all so much, I will let you know how things go with the doctor visit. (btw, his office is in a large hospital, and the last time I saw him, he wrote up all the orders and just had me go do them right then in the hospital, so I am thinking they may be able to draw blood and this and that even tomorrow)

Well, after reading about some of what others here have gone through, and just now with the lyme, I am thinking it has to be one or the other or both as it would completely and fully explain the last 9 years of my life of which no doctor could ever really tell me what was going on with me.

I have the drive to get better though, I know with everything I have been through I can get through this. I mean, hey, I've been dead twice so this shouldn't be that bad... ha.

[castor]

wow, lots of typos... sorry I'd fix them but I am really tired.

[CarlaB]

I plan to mention lyme disease to him too, I just hope this guy is up to taking this on with an open mind

I hope so, too. Mine wasn't. I got ridiculed and told my Lyme doctor was a scam. There's a lot of info in the Lyme thread ..... if you have any questions, feel free to ask. There are several people who will answer if you ask in that thread.

[mslee]

Don't get discouraged (not easy I know).... If one Dr wont listen to you keep trying until you find one that will.

Even my Gastro Dr (who I do like) said a Celiac blood test was not necessary after his assistant had recommended one based on my symptoms. Later that really bothered me so I kept leaving messages that I wanted that test done, they didn't get back to until after my Colonoscopy biopsy came back & showed there was pretty major damage inside....caused by Gluten intolerance.

By the time I made it into the Gastro Dr I too felt like I was completely falling part something was majorly wrong and I could not keep going on without real help. I moved from one town with not enough Dr.s to one that has a Great Medical Community (unintentionally) thats when I was finally able to get some decent medical care.

Also the irritability is supposed to go away on a Gluten free diet thats one thing I've always struggled with... trying to be patient and give it time.

GOOD LUCK! Hang in there!!!

[castor]

>< it was same as usual with this doctor too...... 5 mins with me, didn't even do a physical exam, said something like we'll do some blood tests and check your thyroid and starts to leave but I stopped him and mentioned celiac disease and if he could do the panel testing on that, he said he would, but I couldn't tell if it was on the order or not when I was looking at it. I never even got a chance to mention lyme....... and he had me schedual a follow up for a MONTH later.

Does everybody get treated this way? This is how every doctor I have ever seen has been with me. It's why I just gave up getting this treated.

I can barely walk around and I get, we'll check your thyroid. When the nurse came back in I asked her what was I suppose to do about how I am feeling right now??? I read like how in the thread you linked they would ask for you to give you a percentage of how you feel you are doing, right now I would be at about 10%, maybe 15, and the nurse just goes, um, I guess just watch your diet. That was the only advise I got and was sent on my way.

I need to lay down, I think I am getting a sinus infection on top of things now.

[mslee]

>< it was same as usual with this doctor too...... 5 mins with me, didn't even do a physical exam, said something like we'll do some blood tests and check your thyroid and starts to leave but I stopped him and mentioned celiac disease and if he could do the panel testing on that, he said he would, but I couldn't tell if it was on the order or not when I was looking at it. I never even got a chance to mention lyme....... and he had me schedual a follow up for a MONTH later.

Does everybody get treated this way? This is how every doctor I have ever seen has been with me. It's why I just gave up getting this treated.

I can barely walk around and I get, we'll check your thyroid. When the nurse came back in I asked her what was I suppose to do about how I am feeling right now??? I read like how in the thread you linked they would ask for you to give you a percentage of how you feel you are doing, right now I would be at about 10%, maybe 15, and the nurse just goes, um, I guess just watch your diet. That was the only advise I got and was sent on my way.

I need to lay down, I think I am getting a sinus infection on top of things now.

oh that sucks!

What kind of Doctors are you seeing? I've had to see probably I'M NOT KIDDING like 50 Dr.'s and countless testing before finally getting this celiac diagnosis. ( I'm not well off either it has NOT been easy)

Most Dr.s seem terribly out of date about how much diet really effects us. Before June 08 they thought I had Lupus and there had been no advances in lupus treatment in about 40 years so they (my Rhuematologist) just kept watching my blood while I got sicker. I had to see a Gastroenternal Dr. (while in the process of seeing a specialist for every symptom I had. ) The Gastro Dr. found the Celiac. & Only then because it had done so much damage to my insides.

A few tips I've found:

~ Usually older Doctors are more old fashioned and more apt to give you a pill or follow the text book

~ Dr.'s more recently out of medical school may be better informed about illnesses such as Celiac,

(but they may not have seen as many cases or the life experience so thats something to consider too)

~ you may have to try more than one specialist

~use the internet for Dr. research, don't just pick one off your insurance list...it can be tedious but some Dr have been reviewed that can be helpful

~if the office is overwhelmed by too many patients not enough Drs you will get the kind of treatment you described...try to find offices that can get you in soon, keep your eyes open for signs of overstressed staff also how well the team functions together

I can help you with some internet research if you like, I'm pretty good at it (have had lots of experience )

e mail me or something...im new here so not sure how all that works yet

good luck, don't give up

[CarlaB]

Does everybody get treated this way? This is how every doctor I have ever seen has been with me. It's why I just gave up getting this treated.

This has been my experience with most doctors. My Lyme doctor is the first one to believe me that I'm sick! He's treated me for parasites, bacterial overgrowth in the intestines, heavy metals, Lyme, babesia, bartonella and now mold toxicity.

I've gone from 15% to nearly 100%!!!

I hope you find the right doctor. Keep looking, you can and will feel better!

[gadaboutdiner]

My husband had hyperbaric-chamber treatment last year for a condition unrelated to this website. It didn't help him. However, we were told they have been extremely successful treating lyme disease. I hope the info helps someone.

Castor's experience with his doctor is disgusting. I've had it many times. This may sound goofy, but when I have faced a huge challenge like Castor's, there always seems to be a door that opens. I like to think it's my "higher self" that opens that door. Then I have to muster the courage and energy to go through it.

Einstein awoke one morning with the Theory of Relativity right there. He had been working on it unsucessfully and decided to "sleep on it." I've gone to sleep at night after mentally ordering that an answer to a seemingly unanswerable question or a vexing problem be there for me in the morning. It almost always works.

If I were you, Castor, the first question I would order answered would be: Who can help me with this terrible problem? Where can I go to find answers and get the help I need? Repeat those questions several times silently just before you go to sleep.

Sometimes the answer is there as your first thought when you awaken. Sometimes you'll pick up a book or a newspaper later that day and the first words you will read will be written just for you and you'll say, "AHA! THAT'S IT!" Sometimes you'll feel the need to call so-and-so, and that person will have crucial information for you. You can't force it, just stay open to recognizing it.

I have no idea whether it's a right-brain phenomenon or a spiritual one or a conscious mind direction-to-the-subconscious. It doesn't matter. It may just be that you cannot find the CORRECT answer until you ask the CORRECT question.

I wish you courage in facing your challenge. Trust your instincts. Trust your "self".

[mosaicmom]

Dd was dx's 12 months ago with BP1 as you have (original poster).

I am blessed to have a mom who is anti meds and pro diet nutrition, and countless friends who were drilling it into my head for years about their problems with gluten and yeast. Didn't click at all. No one could think diet alone could cause OCD, PTSD, personality problems out the wazoo, BP and schizo symptoms. Dd fell a little into each category though BP 1 most recent episode was why.

Fast forward to a recurrent problem with GI problems, blown off by drs for years (3 so far). Went back in, looks like Crohns, but in looking deeper on my own, still waiting for colonoscopy end of month, the rash, the symptoms, my reading up on gluten allergies in children, and the reason why so many parents with autistic and add/hd kids opt for gluten free finally clicked. My daughter has other symptoms too, but too hard to differentiate this early- hence why I joined here 3 days ago.

Tried 2 weeks of gluten free before being told to go back on it for the scope this month, and without putting 2 and 2 together, she came to me last week describing how one disturbing symptom had gotten 50% better just in a matter of days.

There is a huge correlation between those with mental health issues and GI issues, though they (pdocs) usually attribute mental to causing GI. I believe GI causes mental... it's already proven itself to be worthwhile to go ahead and try.

Dd also lost weight when we took her risperdol and lithium and chucked them down the sink. She dropped 30 lbs in a matter of 6 weeks, and still is- no appetite. Investigate until you're satisfied. Good luck!

[castor]

Sorry I haven't replied, thanks everybody for the support... just not doing to well to sit at the computer much, and my irritability seems to be coming out in full swing the last several days and am kind of afraid to start typing away on some rant. ><

Anyway.. the nurse called today and said the blood tests showed I don't have celiac, and was just like, you don't have it, next thing on the list to see if you have.... kind of thing.. I don't even know if they did the full panel or are just looking at one number and seeing it's in the normal range and saying, nope, not celiac. .... starting to rant T__T sorry. I requested a copy of the tests to see what exactly it all shows myself and so I can post them on here too. I'm wondering if the total IGA is low from a possible autoimmune debunking the test but would they know that.

I guess it was just how she said things... she didn't say the test came back negative, she just goes - it's not celiac. Even when I told her the tests can often have a false negative when I was in the office last.

They want to send me to a GI specialist, but not really to consult with him, but just on a order for a colonoscopy that they ordered.... isn't that the wrong end to be checking for this?????

The easy thing to say is find another doctor.... but this is small town Indiana with not many doctors in the area and I'm on Medicaid and I had to get a rec from my therapist from before - friends or something with the doctor - to get any doctor to take somebody new with medicaid. Nobody wanted to be bothered with the crazy person. God it's turning into a rant again... SORRY, I'm usually not like this.

What do I do though? I supposedly have a 'care worker' through medicaid, thinking of calling them tomorrow.

Question, does anybody else get a low grade temperature sometimes after being glutened?

Somebody I was talking to today thought that I was diabetic... symptoms are similar, but how much different? Could it be that?

[mftnchn]

Castor, so sorry for all this trouble.

First of all, I would call the doctor's office and tell them to please send you a copy of the full lab and results asap. Remind them that you have a legal right to that information.

Given your problem with doctors, location, etc., you may have trouble getting a referral for an endoscopy and biopsy, but I would try to get that asap. I would really press for that indicating that you are losing weight very fast without trying plus having diarrhea, and that if something is terribly wrong and they don't check it adequately they will be liable for malpractice.

If you do not have any luck with this and don't have the resources to go elsewhere, you might have to do what many people here have done, and take matters into their own hands: Just go on the gluten free diet. If as we suspect, your symptoms greatly improve, you'll have further proof to offer a doctor if you ever find one that is worth sticking with.

Also, remember that in your small town, the pathologists and GI's may not have the best experience with taking and reading your biopsy. The biopsy should take multiple samples from different locations.

Keep writing, we're here for you.

[aikiducky]

I'd still consider doing the appointment with GI and colonoscopy. 1. a colonoscopy might be a good idea just to check for any potential other problems. 2. As i understand it, GI's work in a certain order of tests, they do a colonoscopy first but if it doesn't show anything you might have a chance of having them do an endoscopy later.

It might be easier for you to be heard if they see your working with the doctors, you know?

There's also noone to tell you that you can't eat gluten free on your own. But I wouldn't do that if you want to go through the testing process and get an official diagnosis. But if in the end you just don't get anywhere with doctors, it's an option to just try the diet.

Pauliina

[castor]

Okay, finally made some progress... My suspect of celiac seems to be becoming a lot more concrete to me, and well, seemly only me (compared with my doctors)

Yesterday I sat down at my parents with the phone (they have free long distance), a pad of paper, and any numbers I had so far and started calling. Spent three hours making calls and on hold and redirected and ... yeah. BUT, I put my head down and just ran bull headed till I got some results. I think one receptionist was glad to finally not talk to me anymore (and I felt the same) but this is my health and body.

Okay, found out from the nurse, drilling for details about the celiac panel test they did, and got this info out of her - the test they sent to a lab in South Bend, Indiana (about 2 hours from where I live) and she said not the one in California (which would that be??). I realized too, that I was getting the start of a very bad cold when they took the blood for it, would that have signaled my immunity is depressed and the results would have been low? - I've been getting colds/flu very easily for a bit.

Well, I then found out the tests that 'showed I don't have celiac', actually came back as mostly weak positives. From how finiky most here say the tests are, me getting weak positives from a not that great lab... to me would be pretty telling. Not to them though. *sigh* Since the levels were not over the level for a 'high' reading, the lab or whoever 'they' is, didn't test further.

From there I got to deal with getting set up for the colonoscopy. Nurse said they send all my info and tests results to the gastro the day before, and my cell phone number, and they are going to want to get me set up to get in and gave me the number to call. I had a missed call on my cell phone from the city where the office is and mentioned that, and she said that was probably them.

So I call the number she gave me, talk to this person, then that person, finally got to the gastro office and got to deal with the receptionist for 45mins..... She said they didn't have any of my information, nothing from my doctor, never had gotten anything from that doctor, then said she can call my doctor tomorrow and get back to me later in the week, that's all she can do. ... I call back - is there somebody else I can talk to? - mmm, no, the scheduling person is on the phone, I can call you back when she gets off - okay, thank you. - hang up and realize she didn't even get my number to call back. - look up the number on my cell and call that number and get her directly...... I tell her, you have to have my info, because I just called the number that was on my phone from this morning, and you answered. - Was there a message left for you? - my mailbox isn't set up, it's an emergency pay as you go. - let me see if the schedualing person is free now.

I get the other women and I give her my name, and she goes, - Oh, I was hoping you would call! Shoot me.

Anyway, I pushed that I wasn't doing that great, and sooner is better, and ended up getting my colonoscopy next Tuesday, one week out. I think that's an accomplishment. I am also suppose to meet with the doctor, guessing then before the procedure, to go over everything with him, and I am hoping I can convince him to do the other test, can't think of the name right now, and biopsy soon after the colonoscopy.

I think I am convinced it is celiac, and could just do the diet and say screw the doctors, but I think I need to know if there is anything else going on secondary and if there are any other food problems - I think egg, always had problems with eggs.

Oh, the exact results of the celiac panel are in the mail to me, I would go and get them myself, but I don't have a car and they are in the next county.

I have no idea how I am going to start the diet though after the tests.... I don't have any money or income to buy all new food....

Are there other things I should be doing, pushing for? A new blood panel sent to a good place?

[ShayFL]

colonoscopy (up the bottom) will not dx Celiac. You need endoscopy (down the throat and into the intestines) with multiple biopsies.

Dont buy "new" foods. Just buy basic simple foods that are unprocessed (you can actually SAVE money this way). Instead of gluten-free bread, buy potatoes to bake or rice to cook. Instead of cookies eat fruit. Instead of a hamburger on a bun at a restaurant, buy yourself a nice little steak and cook at home.

Meats, eggs, veggies, fruit, nuts and gluten-free whole grains are cheaper in their unprocessed state.

[home-based-mom]

I have no idea how I am going to start the diet though after the tests.... I don't have any money or income to buy all new food....

Actually this is the least of your worries. Shop the perimeter of your grocery store where the fresh and frozen meats and produce are found. They are healthier and less expensive than processed foods anyway. You do not need to buy any costly replacements.

Hope you are feeling better soon.

[aikiducky]

An idea ... you could ask if they would do the endoscopy and colonoscopy on the same day after each other, since you will be there and prepped for the colonoscopy anyway. It would save a lot of time.

if they do, they need to take plenty of biopsies of the small intestine, not only have a look since the celiac damage can't be seen with naked eye.

Pauliina

[mymagicalchild]

Castor, your third (and last) post sounds like a different person from the first 2 posts...like "You're mad as hell and you're not going to take it anymore!" Which is EXACTLY where I'd be.

These "health care providers" are supposed to be providing health care. When did everything go so wrong? It all sounds like healthcare has gone big business, which has then gone bananas, to me.

I've only been reading these site entries for a couple of days, but I am ABSOLUTELY TOTALLY IMPRESSED with the information and support and humor and steady, plodding, determined movement toward answers that seems to be the focus of the incredibly knowledgeable bloggers.

Trust yourself. DON'T assume that you are nuts if you stand up for yourself and others stare at you or chide you. It proves you are not a victim. You are your own best advocate. You're not waiting for a champion. YOU are your champion.

Sometimes, getting totally P-O'd is absolutely the best medicine. (Maybe, though, you should do it semi-quietly. Like....do a focused, powerful, intense stare...instead of a loud, frightened shout.) Focused. Powerful. Intense. Whoooaaaa, that ought to get the nurses moving.

And remember, Castor, BE KIND TO YOUR MUM! She just might be, next to yourself, your best asset. (Or not!) (Some Mums are flaky. Sounds like yours really cares.)

Your comment about how to change the diet sounds like what the dog might say when he catches the bus he's chasing: Now I've got it, what do I do with it?

Well, kiddo, just get yourself to where you know the gluten-free path is now yours. I'll send you the best darned homemade taco recipe imagineable and you can probably live on it 3 times a day! Provided there are corn tortillas in your "village," that is. After all, I captured my "deareeeee" beloved with it!