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Doctors Who Have No Clue


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#16 IrishHeart

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Posted 23 April 2012 - 06:40 AM

I honestly felt better after 5 days in Italy and we were eating out twice a day there. The food quality was just so much better there.

Thanks for your input. I just get soooo worn down from the pain and it gets really old. On a happy note I've got confirmation of my appointment with Dr. Fasano at the University of MD Celiac Center on 31 July -- that was his first available but is perfect timing for me! I'm just going to start a countdown to that date to keep my sanity...


I think that is your answer then. CC is getting you.

I agree--this constant 24/7 bone/muscle pain I live with---very OOOLLLLDDD :blink: but at least it is LESS...! :)

Dr. Fasano--lucky girl! :) I would have given anything to have met him when I was wandering aimlessly from doctor to doctor for 3 years before DX. I'd love to ask him a ton of questions!

I would have thought the wait list for him would be a year.

Hang in there!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#17 IrishHeart

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Posted 23 April 2012 - 07:05 AM

Congrats on the appointment! He's the best. :D
I'm counting down to my visit with Dr. Murray from Mayo Clinic. I go Apr. 30 for the week.



He is one of the "top guns" too!
Good for you!! :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#18 Bubba's Mom

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Posted 23 April 2012 - 11:25 AM

The issue is the pain is ever-present, it just worsens at times. Very frustrating. I'm totally willing to go with the functional pain idea if anyone would actually be willing to treat it...they all want to take a wait and see approach before they give me TCAs. I think they hope it will either go away OR I will! :rolleyes:

LOL..yes sometimes I think they wish we would just go away? When they don't have the answers it makes them look bad? :lol:

Soo..the pain is there all the time, but sometimes gets worse? Is it worse before..or after you eat?
Did they check you for an ulcer?

I think they are reluctant to prescribe meds because they can't judge the correct dosage when they don't know what is being absorbed? At least they are being cautious about that..it's a good thing. Of course nobody wants to be in pain either? Hopefully, it will soon pass!
(rock) you (hard place)
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#19 JoeBlow

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Posted 23 April 2012 - 02:52 PM

Thanks everyone for the responses. The support and information I find is always invaluable...

To answer some questions:

The pain I have is mostly on on my left side, near my ribs...sometimes it starts under the sternum but usually is lower down than that. It often feels tender to the touch and if it is really bad, it feels inflamed on the inside.


Is it on your lower rib on the left side in front? There is a trigger point there for your small intestine, says my MD, who is probably one of the most gluten-literate family practice physicians in the country. I'm a celiac who has been gluten-free for 4.5 years, and in the last 6 months, there have still been times when the pain there is just killer in the morning, when I do my kneeling, collapsing stretch first thing in the morning, and my lower ribs are on my thighs. There is also a trigger point for your liver near there.
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JoeBlow

Gluten-free,Dairy-free 08/06/07, Sugar-free since 1980
Diagnosed Celiac 09/29/07, HLA-DQB1s 0201, 0602

#20 BabsV

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Posted 23 April 2012 - 09:42 PM

Is it on your lower rib on the left side in front? There is a trigger point there for your small intestine, says my MD, who is probably one of the most gluten-literate family practice physicians in the country. I'm a celiac who has been gluten-free for 4.5 years, and in the last 6 months, there have still been times when the pain there is just killer in the morning, when I do my kneeling, collapsing stretch first thing in the morning, and my lower ribs are on my thighs. There is also a trigger point for your liver near there.


Yep, that sounds about right for the location.
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#21 BabsV

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Posted 23 April 2012 - 09:47 PM

Soo..the pain is there all the time, but sometimes gets worse? Is it worse before..or after you eat?
Did they check you for an ulcer?

I think they are reluctant to prescribe meds because they can't judge the correct dosage when they don't know what is being absorbed? At least they are being cautious about that..it's a good thing. Of course nobody wants to be in pain either? Hopefully, it will soon pass!
(rock) you (hard place)


Yep, the pain is constant but increases at times. Sometimes it is worse after eating...sometimes not. I've tried to track it to what I'm eating and haven't had much luck other than the brown rice idea. When I was scoped in August 2011 for my biopsy my tummy was pink and happy -- totally normal. At least that is what the doctor said and what is in my report.

Gastro #1 is back in the office on Monday next week and she wants me to come in. She's talking low dose amitriptyline at this point -- she says she hates seeing me in pain and she wants to try to do something about it. Yay! Who knows, I might have horrible side effects and not be able to take it but at least we're trying something different versus "just live with it."

Bummed though because our Berlin trip has been cancelled. I just can't travel in this condition.
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#22 AVR1962

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Posted 23 April 2012 - 11:48 PM

Thanks everyone for the responses. The support and information I find is always invaluable...

To answer some questions:

The pain I have is mostly on on my left side, near my ribs...sometimes it starts under the sternum but usually is lower down than that. It often feels tender to the touch and if it is really bad, it feels inflamed on the inside. It wanders over to my right side sometimes but not always. I think one of the doctors referred to it as "left upper quadrant" pain which makes sense considering the location. OTC painkillers don't touch it when it starts up...nothing makes it better. I just have to gut (hehehe) it out till it subsides a bit. It is like the pain I get when I am glutened BUT when I've had it lately I have absolutely no other symptoms of being glutened (anxiety goes off the charts, insomnia, dizziness, loose stool, etc.)

Gastro #1 told me when she came up with "functional abdominal pain" that it is a pain that they cannot find a solid medical explanation for. Her take is that the nerves in my GI tract have gone haywire, are oversensitive and are sending pain messages to my brain when they shouldn't be doing so. I believe it is also called 'non-ulcer stomach pain' by some. They treat it with very low dose tricyclic antidepressants. No one has been eager to try this route since I have a history of serious side effects to a lot of medicines. Personally, I'm willing to try it to see if it helps with the pain (even for just the next couple of months until I can get back to the States) but the doctors won't prescribe them.

I'm wondering if it is another food intolerance that has cropped up. I was reviewing my food diary and I realized that during the period of the flare up I was eating more brown rice and items made with brown rice. I received a care package with some Lundberg rice cakes and gluten-free Rice Crispies (which I trialled for a couple days but didn't stick with...never really been a Rice Crispies fan)...the brown rice connection didn't hit me until I'd had a relatively good day and after a rice blend for dinner (brown and wild) I felt off the next morning. Had the same leftover rice for lunch and by late afternoon was really unhappy.

I figure stress could be adding to it all as I'm in a foreign country with less than stellar medical care. All the doctors specialize to the nth degree which would be awesome if I could find a Celiac specialist but I just haven't been able to do so. I think it is way too "new" for any doctors here to have really paid attention to it. So I have to drag myself from doctor to doctor and they each want to give me some sort of prescription plus an herbal medicine -- they all look shocked when I tell them I'd prefer to be on as few medicines as possible because sometimes they just seem to be throwing meds at me because they don't know what else to do. Prior to diagnosis the various doctors had me on about 6 different prescription meds which honestly were making me feel even worse...not to mention when I showed them to an American doctor he was shocked that one doctor would prescribe two meds that both caused blood pressure issues (no wonder I was dizzy and had to be careful when I stood up!)

Plus, I do not trust food quality here. Ingredients labeling is hit or miss or nonexistent. I've actually seen imported items from the UK that say "suitable for Coeliacs" but the Polish label says "may contain gluten"?!?!? I have been made sick from meat (most is injected with fillers, additive, broths, etc.) here so many times I am reduced to eating fish (frozen, from EU, marked for allergens) and some canned tuna and chicken ordered from the States. At least I can eat beans! I try to stick to as natural as possible plus I've found a few items at TESCO that I can tolerate. Thank God for TESCO and their allergy labels!

I still have my gallbladder. They've talked about a HIDA scan but are having trouble finding a place that can do one. Seriously. I swear the healthcare here is worse than 3rd world at times (I've lived in 3rd world countries and had better care!)

On a positive note there are many health issues that have resolved since I went gluten free -- brain fog is gone, dizziness is gone, I have a lot more energy, nails and hair are growing and strong, my skin no longer looks like paper, I've started to gain some weight (I was skeletal by the time of diagnosis), I'm not nearly so cranky, etc. Plus my 6 month blood tests show a big drop in antibodies...I am close to negative/normal although not quite there yet. Now if the pain issue could just be addressed...I'm confident it will eventually be resolved but sometimes I feel that being in Poland is really hampering my recovery. Very frustrating.

Thanks for listening to my rant.

Pain under the left side of the rib cage could be many thing...back pain, spleen which run along side the ribs, or it could be the pancreas. http://www.healthhyp...t-rib-cage.html

Pain under the right side in the gallbadder http://www.livestron...adder-problems/

Your spleen and pancreas can become irritated and can swell and will cause this pain. I did an herbal liver cleanse that caused my spleen and pancreas (along with gallbadder) to enlarge so you have to makes sure you are taking in no toxins. The pancreas can react to food allergies such as nuts and it can react after a meal and cause pains after eating. Once otehr thing that could be going on is that your pancreas is not properly regulating your blood sugar, basically the pancreas become exhausted in trying to keep up with what you are putting into your body and it stops working properly.

A trip to the doc is always real good and I would request a 2 hour glucose test just to be on the safe side to rule that out as a possiblity. If you are finding this problem after eating meals, eat lighter. Notice, are you finding this problem after eating nuts, take them out and see if it improves.

I had this problem off and on for a year. Ultrasound showed my pancreas was enlarged but doc was not concerned. He ran a blood test for diabetes and in that year he ran it 3 times and it always came back negative. Finally my neurologist suggested a 2 hour glucose and BINGO! This was only recently that they found this so I am now on a raw foods.....lean meats, eggs, nuts, and veggie diet for 6 weeks.....no fruit, no refined sugar, no potatoes and no grains to relieve the pancreas and hopefully promote healing. This may not be your situation but I thought I would throw it out there to think about.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#23 BabsV

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Posted 24 April 2012 - 02:31 AM

A trip to the doc is always real good and I would request a 2 hour glucose test just to be on the safe side to rule that out as a possiblity. If you are finding this problem after eating meals, eat lighter. Notice, are you finding this problem after eating nuts, take them out and see if it improves.

I had this problem off and on for a year. Ultrasound showed my pancreas was enlarged but doc was not concerned. He ran a blood test for diabetes and in that year he ran it 3 times and it always came back negative. Finally my neurologist suggested a 2 hour glucose and BINGO! This was only recently that they found this so I am now on a raw foods.....lean meats, eggs, nuts, and veggie diet for 6 weeks.....no fruit, no refined sugar, no potatoes and no grains to relieve the pancreas and hopefully promote healing. This may not be your situation but I thought I would throw it out there to think about.


Thanks for the suggestion. I'm going to ask the doctor about it -- who knows what she'll say.
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#24 IrishHeart

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Posted 24 April 2012 - 04:50 AM

Low dose amitryptilline is often prescribed for conditions like IBS because the gastros believe it quiets the nerves in the gut and stops the spasms. 10 mgs is what they start off with and go up in increments of 10 mgs. I suggest you take it at bedtime because it makes you drowsy.

I tried it years ago for 6 months. He had me on 30 mgs. and I wondered why I slept like the dead :lol: and I found myself groggy all day. I finally stopped taking it (DO NOT stop abruptly! :blink:) This was back in the day--when I did everything a doctor told me. (Wish I could go back and slap myself for that naivete :rolleyes:) I was taking a few meds at the time (from the rheumy and the PCP )to try and control the GERD, the muscle and joint pain, the insomnia, etc. --and as I know now, it was celiac all along. <_< (picture me gritting my teeth here at the memory....arrgh!)

It did not help me at all, but I think we all know why. (I did not have "IBS", Arrgh! but I digress)

This is was my experience and yours may be different.

You should also know that because is it an old-school tricyclic anti-depressant, there are side effects.

Makes sure you doctor is aware of all the prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you may be taking.

"Be sure to mention any of the following: antihistamines; cimetidine (Tagamet); diet pills; disulfiram (Antabuse); guanethidine (Ismelin); ipratropium (Atrovent); quinidine (Quinidex); medications for irregular heartbeats such as flecainide (Tambocor) and propafenone (Rythmol); medications for anxiety, asthma, colds, irritable bowel disease, mental illness, nausea, Parkinson's disease, seizures, ulcers, or urinary problems; other antidepressants; phenobarbital (Bellatal, Solfoton); sedatives; selective serotonin reuptake inhibitors (SSRIs) such as citalopram (Celexa), fluoxetine (Prozac, Sarafem), fluvoxamine (Luvox), paroxetine (Paxil), and sertraline (Zoloft); sleeping pills; thyroid medications; and tranquilizers. Tell your doctor if you have stopped taking fluoxetine (Prozac, Sarafem) in the past 5 weeks.Your doctor may need to change the doses of your medications or monitor you carefully for side effects. Be sure to mention if you drink large amounts of alcohol and if you have or have ever had glaucoma; difficulty urinating; seizures; an overactive thyroid, schizophrenia,loss of interest in life, and strong or inappropriate emotions; or liver, kidney, or heart disease."

There are various side effects that may diminish: dry mouth, nausea,vomiting, drowsiness,weakness or tiredness,nightmares, headaches,constipation,difficulty urinating, blurred vision, pain, burning, or tingling in the hands or feet,changes in sex drive or ability,excessive sweating, changes in appetite or weight,confusion, unsteadiness.

I gained about 30 lbs. on it.

I am NOT telling you any of this to scare you off from trying it, Babs, honest!--- but just so you know. I would hate for anyone to go through half the crap I went through.

I always find it ironic that the very thing they prescribe for GI problems may cause more GI problems. :rolleyes:

I hope your pain diminishes. I know how much it takes out of you to suffer with it, I really do. :(
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#25 BabsV

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Posted 24 April 2012 - 06:00 AM

I am NOT telling you any of this to scare you off from trying it, Babs, honest!--- but just so you know. I would hate for anyone to go through half the crap I went through.


Yep, I've read all about it and maybe it just proves how desperate I feel at this time that I'm willing to try it. I also know a couple people who've taken it and not had any bad side effect issues...I just need something to get me through the next 2-3 months until I am back in the States. And something that helps me sleep would be welcome at this point because my sleep has gotten so fractured I can't seem to catch up. Being exhausted definitely does not help with dealing with the pain issues. *sigh*
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#26 Bubba's Mom

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Posted 24 April 2012 - 06:19 AM

If the pain is after meals it would indicate something other than an ulcer, which is why I asked. That's good!

I was given an RX for a med that's a combo Amitriptolyne/librium many years ago for anxiety, depression, and IBS. I'm still taking it. It seems to agree with me just fine? We are all different. I say..give it a try and see how you feel? If it makes you sleepy, that side effect will probably wear off within 2 weeks? Your body adjusts to it.

It didn't make me gain weight, but it can make *some* people crave sweets, so be aware of that and choose your sweets wisely. Fruit is good..candy, not so much. ;)
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#27 IrishHeart

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Posted 24 April 2012 - 06:25 AM

Yep, I've read all about it and maybe it just proves how desperate I feel at this time that I'm willing to try it. I also know a couple people who've taken it and not had any bad side effect issues...I just need something to get me through the next 2-3 months until I am back in the States. And something that helps me sleep would be welcome at this point because my sleep has gotten so fractured I can't seem to catch up. Being exhausted definitely does not help with dealing with the pain issues. *sigh*



Honey, you should absolutely try anything to relieve the pain and insomnia. I have been in your shoes and I tried EVERYTHING, too.

Again, I was not trying to dissuade you, just inform.

You may tolerate it like a champ! I hope so. I want you to feel better.

Do whatever you need to do!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#28 BabsV

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Posted 24 April 2012 - 07:50 AM

If the pain is after meals it would indicate something other than an ulcer, which is why I asked. That's good!

I was given an RX for a med that's a combo Amitriptolyne/librium many years ago for anxiety, depression, and IBS. I'm still taking it. It seems to agree with me just fine? We are all different. I say..give it a try and see how you feel? If it makes you sleepy, that side effect will probably wear off within 2 weeks? Your body adjusts to it.

It didn't make me gain weight, but it can make *some* people crave sweets, so be aware of that and choose your sweets wisely. Fruit is good..candy, not so much. ;)


I'm willing to try it...would be such a relief to find something that helps at this point!
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#29 BabsV

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Posted 24 April 2012 - 07:52 AM

Honey, you should absolutely try anything to relieve the pain and insomnia. I have been in your shoes and I tried EVERYTHING, too.

Again, I was not trying to dissuade you, just inform.

You may tolerate it like a champ! I hope so. I want you to feel better.

Do whatever you need to do!


Oops, sorry if I came across curtly. Blame it on exhaustion.

You always provide amazing and useful information and I am always thankful for it. I realize you weren't trying to dissuade me.

I'm just tired of sitting around waiting while the doctors scratch their heads and dither. I want to try something. Anything. Maybe it will help!!!
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#30 IrishHeart

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Posted 24 April 2012 - 07:57 AM

Oops, sorry if I came across curtly. Blame it on exhaustion.

You always provide amazing and useful information and I am always thankful for it. I realize you weren't trying to dissuade me.

I'm just tired of sitting around waiting while the doctors scratch their heads and dither. I want to try something. Anything. Maybe it will help!!!



No, you were not curt at all, Babs! I took no offense whatsoever. No worries. I was being encouraging, saying, "go for it if you want to"!!

I completely understand how you feel. I really, really do. It actually makes my heart hurt sometimes to read posts like yours. It was my life for so long--constant, unrelenting pain.

I think you should give it a try! :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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