Eerrrrrrrrrrrrr!

[hannahsue01]

Sorry need to vent I guess. My doctor still won't test me for celiac and I can't afford to go any where else. Her nurse called back today and says that now I have to test for thyroid problems but what gets me is that she expects me to pay for a MRI of my stomach.....what is that sapossed to tell her. Has anyone had to have an MRI done for any of this....what does it show them? I asked the nurse once agian if the doc would do the tests and now she's claiming the blood work that was done for diabetes and cholesterol didn't show any signs for celiac but she couldn't tell me what tests she did......errrrr.

[CarlaB]

Are you feeling better gluten-free? If so, why not just skip the doctor and be healthy eating gluten-free? If you don't feel completely better, then I see why you're still dealing with the doctor ... but if you're feeling better, why bother?

[hannahsue01]

Are you feeling better gluten-free? If so, why not just skip the doctor and be healthy eating gluten-free? If you don't feel completely better, then I see why you're still dealing with the doctor ... but if you're feeling better, why bother?

I have only tried going gluten free for about 36 hours because I was told that I should not go gluten free untill I had testing done because it could screw witht he results. I felt a little better and my bowel movements somewhat improved and after the 36 hours I had pizza and about threw up and had diareah within 20 mins. I guess I do but don't need an official diagnoses. My husband amung others think I am over exagerating how bad I feel and half of my symptoms (I have over a page typed out of symptoms that mostly seem to be related in one way or another to celiac). I guess it's and ego issue or somthing to throw in there face as bad as it sounds that hey I wasn't full of it. My husband only seems to believe things coming out of a doctors mouth were as I have learned not to trust them.

[IrishKelly]

Are you feeling better gluten-free? If so, why not just skip the doctor and be healthy eating gluten-free? If you don't feel completely better, then I see why you're still dealing with the doctor ... but if you're feeling better, why bother?

I completely agree with this. Alot of times they want to do the MRI because of the headaches, and i had my thyroid tested prior to being gluten free because of my irregular menstrual cycles...and low and behold my thyroid was fine...too many dr.'s out there not adding up all of the sypmtoms. I also saw a well reputable GI dr. in my area who claimed my heartburn and IBS was just from a "bad digestive tract"...well no sh** i had a bad digestive tract. Anyway, a holistic dr. added up all of my symptoms and diagnosed me with glutence intolerance. He gave me a blood test and told me that it could definitely come back negative even though he knew it was a glutent tolerance problem. Needless to say, it came back negative but the gluten-free diet has improved me already by 60-70% and it's only been 6 weeks since i started it. Do you have any headaches, leg cramps or any muscle aches/cramps, diarrhea, heartburn, oaccasional canker sores? Those were all of my symptoms...of course then there's skin rashes, vomiting, etc... Everyone is different.

[floridanative]

I had an MRI on my shoulder Sat. I'm pretty sure looking at the films (that doc must interpret Wed.), that having an MRI is a ridiculous idea if looking for evidence for Celiac. Other correct me if I'm wrong.

[hannahsue01]

I completely agree with this. Alot of times they want to do the MRI because of the headaches, and i had my thyroid tested prior to being gluten free because of my irregular menstrual cycles...and low and behold my thyroid was fine...too many dr.'s out there not adding up all of the sypmtoms. I also saw a well reputable GI dr. in my area who claimed my heartburn and IBS was just from a "bad digestive tract"...well no sh** i had a bad digestive tract. Anyway, a holistic dr. added up all of my symptoms and diagnosed me with glutence intolerance. He gave me a blood test and told me that it could definitely come back negative even though he knew it was a glutent tolerance problem. Needless to say, it came back negative but the gluten-free diet has improved me already by 60-70% and it's only been 6 weeks since i started it. Do you have any headaches, leg cramps or any muscle aches/cramps, diarrhea, heartburn, oaccasional canker sores? Those were all of my symptoms...of course then there's skin rashes, vomiting, etc... Everyone is different.

Symptoms

Constipation

Passed out a few times from passing poop along with severe sweating, extremely hot, very dizzy and nauseous

Diarrhea (especially after eating pizza, pasta, and ice cream with wheat flour in it)

Fatty stools (foamy, floating, floating fat)

Almost always nauseous

Upset stomach (often severe)

Bouts of heart burn (occasionally and always when I drink alcohol)

Stomach cramps (sometimes severe)

Stomach is often more upset after having a bowel movement

Gas (sometimes severe)

Bloating

Bouts of chest pain

Chest tremors

Often very cold when no one else is (hands feet and nose cold to touch…..often to the point of shivering)

Night sweats

Boils on armpits (recurrent with treatment)

Arms have weird ache and numb and swell up and is very warm to the touch….(nurse told me to take aspirin and it seems to help)

Panic attacks (breath taken away and heart seems to skip beats lasts about 30-60sec and comes on with no warning)

Shortness of breath even while doing nothing sometimes severe

Short stature

Weight gain (120 to 205)

Can’t lose weight with diet and exercise (only time I have lost weight is when I didn’t eat at all for 4 months)

Light headed quite a bit

Periods of vertigo

Tingling in face (pins and needles)

Weird vision (things look bigger than they are and sort distorted….really weird)

Always hungry

Bad teeth (lots of cavities)

Bone pain

Joint pain and stiffness

Wrists have shooting pain off and on (left is worse)

Elbows get tennis elbow symptoms (comes and goes)

Muscle aches and stiffness (always feel like I have the flu)

Muscle weakness (weaker now than I was even a year ago)

Charley horses in feet and lower legs every day and night

Restless legs (feels weird and feel like I need to move them)

Really stiff after rest and sleep

Really sore after any amount of activity

Limbs often feel heavy (usually at the same time as being dizzy feeling like I need to eat)

Always tired

No sex drive

Trouble going to sleep

Trouble staying asleep

Wake up during night with severe lower back pain

Wake up to pee 2 or 3 times a night

Dry mouth and throat at night

Frequent urge to pee (often only pee just a little bit)

Irregular long heavy periods (used to make me throw up and curl up in a ball in pain)

Irritable and moody

Irritable and very agitated for no reason with feeling of restlessness (drives me nuts)

Sores on inside of mouth and on tongue

Diabetes (? hematologist told me to get further testing)

Low iron (not high enough to donate blood/dips in finger nails)

Extremely itchy bumps under chin with clear liquid in them (comes and goes)

White specks in nails (sometimes)

Abnormal skin sensations (feels raw when touched with no explanation…..usually on arms, back, or rib cage)

Headaches everyday (sometimes severe)

Migraines

Tingling and numbness in hands and feet

Throat often sore and swollen

Burning in throat after eating (not always)

Lower back ache for 6 months

Itchy skin

Hair loss (last 6 months or so)

Trouble concentrating

Fogginess (have to ask people what they said or can’t remember what they just said)

Get floaters about 3 or 4 times a month

Lactose intolerant (maybe)

Had premature birth at 29 weeks

Failed to produce more than 2 oz (usually less than 1/2oz) each pumping of breast milk for 4 mo period pumping 40 mins every 1 1/2 hrs

Hey you asked....lol!

[Guhlia]

That sounds EXACTLY like Celiac to me! If I were you, I would just go gluten free permanently and see if you feel better. Doctors don't always know what's best. If your body is telling you that you shouldn't eat gluten, then don't.

[IrishKelly]

Symptoms

Constipation

Passed out a few times from passing poop along with severe sweating, extremely hot, very dizzy and nauseous

Diarrhea (especially after eating pizza, pasta, and ice cream with wheat flour in it)

Fatty stools (foamy, floating, floating fat)

Almost always nauseous

Upset stomach (often severe)

Bouts of heart burn (occasionally and always when I drink alcohol)

Stomach cramps (sometimes severe)

Stomach is often more upset after having a bowel movement

Gas (sometimes severe)

Bloating

Bouts of chest pain

Chest tremors

Often very cold when no one else is (hands feet and nose cold to touch…..often to the point of shivering)

Night sweats

Boils on armpits (recurrent with treatment)

Arms have weird ache and numb and swell up and is very warm to the touch….(nurse told me to take aspirin and it seems to help)

Panic attacks (breath taken away and heart seems to skip beats lasts about 30-60sec and comes on with no warning)

Shortness of breath even while doing nothing sometimes severe

Short stature

Weight gain (120 to 205)

Can’t lose weight with diet and exercise (only time I have lost weight is when I didn’t eat at all for 4 months)

Light headed quite a bit

Periods of vertigo

Tingling in face (pins and needles)

Weird vision (things look bigger than they are and sort distorted….really weird)

Always hungry

Bad teeth (lots of cavities)

Bone pain

Joint pain and stiffness

Wrists have shooting pain off and on (left is worse)

Elbows get tennis elbow symptoms (comes and goes)

Muscle aches and stiffness (always feel like I have the flu)

Muscle weakness (weaker now than I was even a year ago)

Charley horses in feet and lower legs every day and night

Restless legs (feels weird and feel like I need to move them)

Really stiff after rest and sleep

Really sore after any amount of activity

Limbs often feel heavy (usually at the same time as being dizzy feeling like I need to eat)

Always tired

No sex drive

Trouble going to sleep

Trouble staying asleep

Wake up during night with severe lower back pain

Wake up to pee 2 or 3 times a night

Dry mouth and throat at night

Frequent urge to pee (often only pee just a little bit)

Irregular long heavy periods (used to make me throw up and curl up in a ball in pain)

Irritable and moody

Irritable and very agitated for no reason with feeling of restlessness (drives me nuts)

Sores on inside of mouth and on tongue

Diabetes (? hematologist told me to get further testing)

Low iron (not high enough to donate blood/dips in finger nails)

Extremely itchy bumps under chin with clear liquid in them (comes and goes)

White specks in nails (sometimes)

Abnormal skin sensations (feels raw when touched with no explanation…..usually on arms, back, or rib cage)

Headaches everyday (sometimes severe)

Migraines

Tingling and numbness in hands and feet

Throat often sore and swollen

Burning in throat after eating (not always)

Lower back ache for 6 months

Itchy skin

Hair loss (last 6 months or so)

Trouble concentrating

Fogginess (have to ask people what they said or can’t remember what they just said)

Get floaters about 3 or 4 times a month

Lactose intolerant (maybe)

Had premature birth at 29 weeks

Failed to produce more than 2 oz (usually less than 1/2oz) each pumping of breast milk for 4 mo period pumping 40 mins every 1 1/2 hrs

Hey you asked....lol!

OH SISTER...let me tell ya...i kindly left out the sweating, panick attacks, fatty and floating stools, bouts of chest pain, cold spells, always hungry, constipated when no diarrhea, no sex drive (my poor hubby ), white spots on nails, heag fogginess, and lactose intolerant. YOU HAVE A GLUTENT PROBLEM whether any Dr. wants to tell you it's true or not!! If you go on a gluten free/dairy free diet you will totally see a major difference!! These symptons 100% add up to this problem. I myself am glutent intolerable, but do not have celiacs disease. See, celiacs do not create the enzyme our body needs to break down gluten...gluten intolerability without celiacs we can create the necessary enzyme but our body still doesn't use it properly...so we still end up with most if not all of the problems as people with complete celiacs disease do and we need to be on the same diet.

[LKelly8]

As long as you're feeling better - and you continue to improve - on the gluten-free diet, then tell that Doc to take a hike.

That being said though, those blood tests are yours, you can simply demand a copy.

And you never have to submit to a test without knowing exactly was it's for. If you already asked questions and got the "pat on the head", patronizing, "don't worry about it dear" garbage then you need to demand - in writing - what the stomach MRI is for. If they still stonewall you about it, then run for the hills 'cause they're either qwacks or crooks.

MRI is not a diagnostic tool for celiac. It is a tool to diagnose other problems though, (giving the doc the benefit of the doubt for a second here) perhaps she's got something more serious in mind and wants to rule it out first?

[Cornhusker]

MRI is not a diagnostic tool for celiac. It is a tool to diagnose other problems though, (giving the doc the benefit of the doubt for a second here) perhaps she's got something more serious in mind and wants to rule it out first?

I think that's it as well. During my diagnosis process I had an MRI (as well as a small bowel series and a colonscopy w/biopsy in addition to the camera work and biopsy from the mouth end). While none of that will diagnois celiac (except the intestinal biopsy), it gave me piece of mind knowing there was nothing else going wrong. You can have celiac and something else.

There is no excuse for them not to release your blood work results. I also don't see how they can eliminate celiac as possibility based on testing for diabetes and thyroid issues.

[tiffjake]

Man, I really feel for ya girl! I would consider going to a different doc. Though I agree with the above posters about just going gluten-free, if you want to know for yourself (and many people do) then that is perfectly fine! There is nothing wrong with that!

Do you live in a small town? Is there a large city near you? A hospital that is known for innovative care? Is there a GI specialist you can call and make an appointment with? (I would call about 10 offices, and ask the person that answers the phone if that office is experienced with screening Celiac Disease, or better yet, go to a doc with a website, and check him/her out and see if they have info about Celiac Disease on their website!)

If it is an insurance issue, you can call the insurance co and ask them what GI docs are in their network. They will give you names and phone numbers of people that they cover.

If you need a referral, you can ask your current (sounds crappy) doc for a referral, explaining that you do not feel like he is meeting your medical needs. This is a bold statement, but it needs to be said to more docs more often! (I am giving you this advice thinking that you will do whatever you need to do....this may be a little too bold for you, and if so, I understand, but if you want to go to "the mat" on this issue, then I would push it with your doc....that is me....).

And don't let them push tests on you that you don't want (like the MRI). You are under no obligation to go through with the doctors suggestions. They ARE suggestions. You have the right to refuse his/her care and go to a different doc. (From what you have said, I would...that does not sound like a doc that is listening to you......)

Either way, if you don't want to do what I just typed, it looks to me, based on your listed symptoms, that just going gluten-free would be soooo good for you! And if you don't want to have further testing, then go for it!!!!! And I hope you are feeling better soon!!!!!!

(PS-I probably wouldn't have such an angry post if I didn't just have a bad experience at the doc. They ARE NOT GOD's, AND THEY DON'T ALWAYS KNOW what the problem is or what they are doing....sometimes they do, but not all the time........)

[chgomom]

If you don't need a referral, take your self to a rheumatologist and tell him or her you have concerns about

autoimmune disorders and ask them to test for everything. They will usually be cooperative.

Thats how I found out, my regular doc was saying it was all in my head or stress related.

[hannahsue01]

Man, I really feel for ya girl! I would consider going to a different doc. Though I agree with the above posters about just going gluten-free, if you want to know for yourself (and many people do) then that is perfectly fine! There is nothing wrong with that!

Do you live in a small town? Is there a large city near you? A hospital that is known for innovative care? Is there a GI specialist you can call and make an appointment with? (I would call about 10 offices, and ask the person that answers the phone if that office is experienced with screening Celiac Disease, or better yet, go to a doc with a website, and check him/her out and see if they have info about Celiac Disease on their website!)

If it is an insurance issue, you can call the insurance co and ask them what GI docs are in their network. They will give you names and phone numbers of people that they cover.

If you need a referral, you can ask your current (sounds crappy) doc for a referral, explaining that you do not feel like he is meeting your medical needs. This is a bold statement, but it needs to be said to more docs more often! (I am giving you this advice thinking that you will do whatever you need to do....this may be a little too bold for you, and if so, I understand, but if you want to go to "the mat" on this issue, then I would push it with your doc....that is me....).

And don't let them push tests on you that you don't want (like the MRI). You are under no obligation to go through with the doctors suggestions. They ARE suggestions. You have the right to refuse his/her care and go to a different doc. (From what you have said, I would...that does not sound like a doc that is listening to you......)

Either way, if you don't want to do what I just typed, it looks to me, based on your listed symptoms, that just going gluten-free would be soooo good for you! And if you don't want to have further testing, then go for it!!!!! And I hope you are feeling better soon!!!!!!

(PS-I probably wouldn't have such an angry post if I didn't just have a bad experience at the doc. They ARE NOT GOD's, AND THEY DON'T ALWAYS KNOW what the problem is or what they are doing....sometimes they do, but not all the time........)

I think you have it right.....they seem to think that they are GODS and know everything there is to know. I've personaly been misdiagnosed even with more common things like mono and pnemonia and a rare strep wich all the testing came back postive for....all of wich I have self diagnosed. I wish there were more doctors that would listen to there patients. No one knows ones body better than it's owner. As far as the insurance goes I have none....I have stayed home with our daughter who I was told not to put in any day care period for at least two years due to being 3 months premie and chronic lung disease and of course my husband refuses to find a job with health insurance. My grandmother is suggesting I go to her fam doc who is about an hour from us. I think I will save up the money and go there. Many members of my family have had good luck with him. Oh yeah hes not and idiot...he himself and his daughter have the disease so I might just be able to trust him just a little.

[tiffjake]

Oh yeah hes not and idiot...he himself and his daughter have the disease so I might just be able to trust him just a little.

Well, I hope so! That sounds great! I really wish you luck in finding what you are looking for (be it a good doc, or a diagnosis). And I hope you are feeling better soon!!!

[debmidge]

As long as you're feeling better - and you continue to improve - on the gluten-free diet, then tell that Doc to take a hike.

That being said though, those blood tests are yours, you can simply demand a copy.

And you never have to submit to a test without knowing exactly was it's for. If you already asked questions and got the "pat on the head", patronizing, "don't worry about it dear" garbage then you need to demand - in writing - what the stomach MRI is for. If they still stonewall you about it, then run for the hills 'cause they're either qwacks or crooks.

MRI is not a diagnostic tool for celiac. It is a tool to diagnose other problems though, (giving the doc the benefit of the doubt for a second here) perhaps she's got something more serious in mind and wants to rule it out first?

Agree that you should ask for a copy of your blood test results. Check to see what tests they did.

Ask for details about what they are using MRI for.

What type of Dr. is this? A gastro or GP?

[gfp]

As long as you're feeling better - and you continue to improve - on the gluten-free diet, then tell that Doc to take a hike.

That being said though, those blood tests are yours, you can simply demand a copy.

And you never have to submit to a test without knowing exactly was it's for. If you already asked questions and got the "pat on the head", patronizing, "don't worry about it dear" garbage then you need to demand - in writing - what the stomach MRI is for. If they still stonewall you about it, then run for the hills 'cause they're either qwacks or crooks.

MRI is not a diagnostic tool for celiac. It is a tool to diagnose other problems though, (giving the doc the benefit of the doubt for a second here) perhaps she's got something more serious in mind and wants to rule it out first?

My thoughts EXACTLY....

I wouldn't mess about.. demand the tests in writing and demand to know how these tests rule out celaic .. in writing and the purpose of the MRI in writing.

Keep it very short.... do not apologise.... DEMAND.....very plain and simple.

Before you do this you need to prepare yourself. Your Dr. will probably be scared by this, she will react by trying to scare you.

Look at it this way. No Dr. ever got sued for not diagnosising celiac.

Plenty of Dr.s get sued for mis-diagnosising something like cancer.

So your Dr. is covering her ass. BUT it get better. She will probably be paid a referral fee ...so her choice is risk having her ass sued.. or cover herself and make some extra money.

So she will reply that she is trying to rule out "insert scary illness here"

Don't be freaked out! She is CYA'ing

I would suggest a series of letters...

#1 a Very plain demand for your results and reasons for the MRI and how the results rule out celiac

#2 If this doesn't work a strong letter ... very clearly saying the reults are yours and she has no right to withold them and that your next recourse will be via a lawyer.... make sure you send it registered or courier ..keep a copy.

#3 (I very much doubt it will come to this).... a consultation with a lawyer and a legal letter demanding results.. show the lawyer your letter ....

you only need to be ready to do #3 if #1 and #2 don't work!

[Guest Doll]

I myself am glutent intolerable, but do not have celiacs disease. See, celiacs do not create the enzyme our body needs to break down gluten...gluten intolerability without celiacs we can create the necessary enzyme but our body still doesn't use it properly...so we still end up with most if not all of the problems as people with complete celiacs disease do and we need to be on the same diet.

Actually, that's NOT what Celiac is. Celiac is caused by our bodies allowing whole gluten in. It is thought to be because our intestines are "leaky". In non-Celiacs, the body is able to breakdown gluten into harmless individual amino acids before it is absorbed.

If we were simply lacking an enzyme to break down gluten, we could supplement that, such as those with lactose intolerance can take oral Lactase (Lactiad).

I hate to tell you this, but I would be suspicious of any "health practitioner" that told you this.

Symptoms

Constipation

Passed out a few times from passing poop along with severe sweating, extremely hot, very dizzy and nauseous

Diarrhea (especially after eating pizza, pasta, and ice cream with wheat flour in it)

Fatty stools (foamy, floating, floating fat)

Almost always nauseous

Upset stomach (often severe)

Bouts of heart burn (occasionally and always when I drink alcohol)

Stomach cramps (sometimes severe)

Stomach is often more upset after having a bowel movement

Gas (sometimes severe)

Bloating

Bouts of chest pain

Chest tremors

Often very cold when no one else is (hands feet and nose cold to touch…..often to the point of shivering)

Night sweats

Boils on armpits (recurrent with treatment)

Arms have weird ache and numb and swell up and is very warm to the touch….(nurse told me to take aspirin and it seems to help)

Panic attacks (breath taken away and heart seems to skip beats lasts about 30-60sec and comes on with no warning)

Shortness of breath even while doing nothing sometimes severe

Short stature

Weight gain (120 to 205)

Can’t lose weight with diet and exercise (only time I have lost weight is when I didn’t eat at all for 4 months)

Light headed quite a bit

Periods of vertigo

Tingling in face (pins and needles)

Weird vision (things look bigger than they are and sort distorted….really weird)

Always hungry

Bad teeth (lots of cavities)

Bone pain

Joint pain and stiffness

Wrists have shooting pain off and on (left is worse)

Elbows get tennis elbow symptoms (comes and goes)

Muscle aches and stiffness (always feel like I have the flu)

Muscle weakness (weaker now than I was even a year ago)

Charley horses in feet and lower legs every day and night

Restless legs (feels weird and feel like I need to move them)

Really stiff after rest and sleep

Really sore after any amount of activity

Limbs often feel heavy (usually at the same time as being dizzy feeling like I need to eat)

Always tired

No sex drive

Trouble going to sleep

Trouble staying asleep

Wake up during night with severe lower back pain

Wake up to pee 2 or 3 times a night

Dry mouth and throat at night

Frequent urge to pee (often only pee just a little bit)

Irregular long heavy periods (used to make me throw up and curl up in a ball in pain)

Irritable and moody

Irritable and very agitated for no reason with feeling of restlessness (drives me nuts)

Sores on inside of mouth and on tongue

Diabetes (? hematologist told me to get further testing)

Low iron (not high enough to donate blood/dips in finger nails)

Extremely itchy bumps under chin with clear liquid in them (comes and goes)

White specks in nails (sometimes)

Abnormal skin sensations (feels raw when touched with no explanation…..usually on arms, back, or rib cage)

Headaches everyday (sometimes severe)

Migraines

Tingling and numbness in hands and feet

Throat often sore and swollen

Burning in throat after eating (not always)

Lower back ache for 6 months

Itchy skin

Hair loss (last 6 months or so)

Trouble concentrating

Fogginess (have to ask people what they said or can’t remember what they just said)

Get floaters about 3 or 4 times a month

Lactose intolerant (maybe)

Had premature birth at 29 weeks

Failed to produce more than 2 oz (usually less than 1/2oz) each pumping of breast milk for 4 mo period pumping 40 mins every 1 1/2 hrs

Hey you asked....lol!

I totally agree this COULD be Celiac 100%. But these symptoms can also represent a multitude of other serious diseases. Looking at this, I can understand why your doctor ordered a Thyroid screen. Make sure you follow up with your doctor, even if you go gluten-free.

If you don't need a referral, take your self to a rheumatologist and tell him or her you have concerns about

autoimmune disorders and ask them to test for everything. They will usually be cooperative.

Thats how I found out, my regular doc was saying it was all in my head or stress related.

I agree here. A specialist is usually more receptive (but not always!). I'll be the first to admit that most GP's are clueless or nervous about diagnosing anything outside of their general scope of practice. Another good trick is to go to a doctor and say that you HAVE A FAMILY HISTORY of Celiac, then list your symptoms. Focus on the GI ones, as unfortunately some Dr.'s are still in the dark ages when it comes to Dx Celiac in adults, where it often presents atypically. The family history adds an additional reason to test.

My thoughts EXACTLY....

I wouldn't mess about.. demand the tests in writing and demand to know how these tests rule out celaic .. in writing and the purpose of the MRI in writing.

Keep it very short.... do not apologise.... DEMAND.....very plain and simple.

Before you do this you need to prepare yourself. Your Dr. will probably be scared by this, she will react by trying to scare you.

Look at it this way. No Dr. ever got sued for not diagnosising celiac.

Plenty of Dr.s get sued for mis-diagnosising something like cancer.

So your Dr. is covering her ass. BUT it get better. She will probably be paid a referral fee ...so her choice is risk having her ass sued.. or cover herself and make some extra money.

So she will reply that she is trying to rule out "insert scary illness here"

Don't be freaked out! She is CYA'ing

I would suggest a series of letters...

#1 a Very plain demand for your results and reasons for the MRI and how the results rule out celiac

#2 If this doesn't work a strong letter ... very clearly saying the reults are yours and she has no right to withold them and that your next recourse will be via a lawyer.... make sure you send it registered or courier ..keep a copy.

#3 (I very much doubt it will come to this).... a consultation with a lawyer and a legal letter demanding results.. show the lawyer your letter ....

you only need to be ready to do #3 if #1 and #2 don't work!

I agree with this 100%. I personally always get copies of all of my test results so I can review them personally. I too unfortunately had to request and demand to be tested for Celiac. I told my doctor that someone will pay for my suffering, and it won't be me.

Remember that doctors are just people, some good, some bad, and there are literally a million things that can and do go wrong with the human body. Explain that you are not trying to second guess her, but rather that you are scared and sick, and it is her job to find out what is wrong. And so far you do not feel better, and you still don't know why you're sick.

[NoGluGirl]

Symptoms

Constipation

Passed out a few times from passing poop along with severe sweating, extremely hot, very dizzy and nauseous

Diarrhea (especially after eating pizza, pasta, and ice cream with wheat flour in it)

Fatty stools (foamy, floating, floating fat)

Almost always nauseous

Upset stomach (often severe)

Bouts of heart burn (occasionally and always when I drink alcohol)

Stomach cramps (sometimes severe)

Stomach is often more upset after having a bowel movement

Gas (sometimes severe)

Bloating

Bouts of chest pain

Chest tremors

Often very cold when no one else is (hands feet and nose cold to touch…..often to the point of shivering)

Night sweats

Boils on armpits (recurrent with treatment)

Arms have weird ache and numb and swell up and is very warm to the touch….(nurse told me to take aspirin and it seems to help)

Panic attacks (breath taken away and heart seems to skip beats lasts about 30-60sec and comes on with no warning)

Shortness of breath even while doing nothing sometimes severe

Short stature

Weight gain (120 to 205)

Can’t lose weight with diet and exercise (only time I have lost weight is when I didn’t eat at all for 4 months)

Light headed quite a bit

Periods of vertigo

Tingling in face (pins and needles)

Weird vision (things look bigger than they are and sort distorted….really weird)

Always hungry

Bad teeth (lots of cavities)

Bone pain

Joint pain and stiffness

Wrists have shooting pain off and on (left is worse)

Elbows get tennis elbow symptoms (comes and goes)

Muscle aches and stiffness (always feel like I have the flu)

Muscle weakness (weaker now than I was even a year ago)

Charley horses in feet and lower legs every day and night

Restless legs (feels weird and feel like I need to move them)

Really stiff after rest and sleep

Really sore after any amount of activity

Limbs often feel heavy (usually at the same time as being dizzy feeling like I need to eat)

Always tired

No sex drive

Trouble going to sleep

Trouble staying asleep

Wake up during night with severe lower back pain

Wake up to pee 2 or 3 times a night

Dry mouth and throat at night

Frequent urge to pee (often only pee just a little bit)

Irregular long heavy periods (used to make me throw up and curl up in a ball in pain)

Irritable and moody

Irritable and very agitated for no reason with feeling of restlessness (drives me nuts)

Sores on inside of mouth and on tongue

Diabetes (? hematologist told me to get further testing)

Low iron (not high enough to donate blood/dips in finger nails)

Extremely itchy bumps under chin with clear liquid in them (comes and goes)

White specks in nails (sometimes)

Abnormal skin sensations (feels raw when touched with no explanation…..usually on arms, back, or rib cage)

Headaches everyday (sometimes severe)

Migraines

Tingling and numbness in hands and feet

Throat often sore and swollen

Burning in throat after eating (not always)

Lower back ache for 6 months

Itchy skin

Hair loss (last 6 months or so)

Trouble concentrating

Fogginess (have to ask people what they said or can’t remember what they just said)

Get floaters about 3 or 4 times a month

Lactose intolerant (maybe)

Had premature birth at 29 weeks

Failed to produce more than 2 oz (usually less than 1/2oz) each pumping of breast milk for 4 mo period pumping 40 mins every 1 1/2 hrs

Hey you asked....lol!

Dear HannahSue,

I know exactly how you feel! Especially with the severe gastrointestinal issues, body pain, and other difficulties. Your list of symptoms looks exactly like mine! Being gluten intolerant may only be a part of the trouble. Gluten intolerance like I have is often linked to another rarely discussed cause of illness and food sensitivities and allergies: Yeast Candida. A number of your symptoms indicate that you have an overgrowth of yeast in you lower intestines. Have you been on many antibiotics and/or steroids and birth control? You have had two children, that adds to your risk. The problems you have after eating pizza are just like what I experienced! Cereal, bread, toaster pastries, and even soda crackers would give me severe reflux (despite taking two Prilosecs daily), bloating, severe cramping, and unrelenting nausea. I know what it is like to have such bad gas you feel like you are having a heart attack. I was getting dry heaves, shaking all over-all of what you described. I still am ill, but going off the gluten has helped. I have Fibromyalgia, used to be anemic due to heavy periods and cysts (I had five cysts over a 10 month time frame and had to be put on Depo-Provera) and even have had my gallbladder removed just in the nick of time before it ruptured. Doctors told me I was crazy and put me on every anti-depressant or anti-anxiety drug known to man. I am 23 years old. I know what this is like. You lose the will to live. You would willingly jump in front of a deranged gunman at a bank to end the pain. Shoot me first you idiot! But of course, he will shoot the guy who just won the lottery next to you instead, because that is how irony works. LOL! I have been gluten-free for about a month and I actually have lost weight! I have been having a terrible time with it. I have tried every exercise known to man. Windsor Pilates is gentle enough I can do it, and not only did I lost 3 and a half inches in my waist in 3 weeks, but my Fibromyalgia has improved, and my strength is better! The yeast is a lot of trouble, too. I have had thyroid trouble, I have bad teeth, yeast infections, you name it. But I am seeing a holistic physician now, and she seems to finally be getting to the bottom of it! I would be happy to provide you with product lists and URLs and any info you would like on both the yeast and gluten intolerance issues. I tested negative for Celiac, but Dr. Beckman told me I could still not tolerate gluten. She was right, too! Take care!

Sincerely,

NoGluGirl

[dkjones2]

I went a Dr for several months everything I ate would eventually be thrown up, headaches (which are still here just not as often) weakness, bruising, lack of bowel movements unless diahrea heavy short if any periods, VERY tired etc. My Dr did numerous test all negative. I was frustrated like everyone else I told her IF its in my head I NEED a shrink I cant handle being sick. 5 ft 5 inch 98 lbs sweaters and coats in July. They did a colonoscoly said I was anorexic did a barium emama (yuck)not anorexic needed high bran high fiber diet, that put me in the hospital I blotted up 40lbs in 4 days. FLew to a larger hospital VERY sick pancreous and liver both almost failing. Numerous colonoscopys and endoscopies. I had an intern how said "you dont fit the profile you dont have Celiac" Wrong the biopsi determined Celiac 3/4 of small intestines destroyed. I was told never to eat wheat again or I could Die my Dr. back home said rural area hospital cant always do the tests that the larger hospitals do my ? to her was so why did you not send me to a bigger hospital first I now have a new Dr. Sorry for so long but my advice is if you have Celiac symptoms and no one listens give up the wheat and Live life happy and healthy.

[GFBetsy]

It sounds like celiac to me. It also sounds like you may have a thyroid problem, too, though. Which wouldn't be surprising as celiac can cause thyroid problems. If you don't have insurance, though, I'd bag the MRI idea, especially if they won't tell you what it's for. Explain to them that you are on a VERY limited budget and that you simply can't afford to pay for anything that is not strictly necessary. If you tell them that it will take you 10 years to pay for the service they are offering you, they may be less anxious to provide you with it .

That being said, I understand your desire to have some validation of your symptoms. But it sounds to me that you felt better after going gluten-free for only 36 hours. Is feeling this awful worth the satisfaction you'll get by being able to show a test result to your husband? After all, he still might not believe that all of your problems come from gluten . . . some people (notably your dr ) just can't seem to believe that something as simple as a protein could cause so many wide ranging problems. All things considered, you might be better off simply going gluten free for a couple of months. If you are still having a lot of problems, then I think you could go into further explorations of possible "causes". I wouldn't be at all surprised, however, if a lot of your symptoms vanished in the interim. And, since it appears that you are currently staying home, you are probably the one who is doing the shopping/cooking. Your husband wouldn't even have to know that you are going gluten-free. You could very easily make dinners that are gluten-free that are so delicious that he'll never even think to ask. (Check out the cookbook "Saving Dinner" - it didn't set out to be gluten free, but most of the recipes are gluten-free, and they are all really good.) Then, when you are feeling (and acting) like you are on the top of the world and he says: "See, I told you gluten had nothing to do with your problems" you can say "Oh, didn't I tell you that I went gluten free 3 months ago?" I wouldn't be surprised if the difference in the way you feel is enough to convince him that gluten-free should be a permanent way of life for you.

Last note: no other blood tests would give valid results as to whether or not you have celiac, so having the nurse say that your diabetes blood work showed no signs of celiac was NONSENSE. Of COURSE it didn't show signs of celiac. The test wasn't DESIGNED to show signs of celiac. If a diabetes test always showed whether or not people had celiac, it wouldn't BE a test for diabetes. It would be a test for celiac

[FaithInScienceToo]

Just wanted to add...IF you go gluten-free, and still have lingering symptoms after 3 weeks or so, go dairy-free (except clarified butterr is OK)...I mention this because of your skin infections...BIG connection between dairy and skin infections. My 'adult acne' and residual tummy aches went away after taking out dairy, too -

KEEP PUSHING THOSE DOCS who need it....there are plenty of good ones out there, but plenty of crappy ones too...pardon the poop pun

Gina

[NoGluGirl]

I went a Dr for several months everything I ate would eventually be thrown up, headaches (which are still here just not as often) weakness, bruising, lack of bowel movements unless diahrea heavy short if any periods, VERY tired etc. My Dr did numerous test all negative. I was frustrated like everyone else I told her IF its in my head I NEED a shrink I cant handle being sick. 5 ft 5 inch 98 lbs sweaters and coats in July. They did a colonoscoly said I was anorexic did a barium emama (yuck)not anorexic needed high bran high fiber diet, that put me in the hospital I blotted up 40lbs in 4 days. FLew to a larger hospital VERY sick pancreous and liver both almost failing. Numerous colonoscopys and endoscopies. I had an intern how said "you dont fit the profile you dont have Celiac" Wrong the biopsi determined Celiac 3/4 of small intestines destroyed. I was told never to eat wheat again or I could Die my Dr. back home said rural area hospital cant always do the tests that the larger hospitals do my ? to her was so why did you not send me to a bigger hospital first I now have a new Dr. Sorry for so long but my advice is if you have Celiac symptoms and no one listens give up the wheat and Live life happy and healthy.

Dear dkjones2,

I have a loathing for doctors now. I have been treated so badly, and lied to. I just do not trust them. They have nearly killed me. My gallbladder almost ruptured inside of me, and because the test shows nothing (they are only about 33 percent accurate at best) he told me a surgeon would not even consider surgery. I was so ill, I had to do something. My intuition was telling me it was the problem, so naturally I would have no choice but to pester him. Finally, I saw the surgeon and he decided surgery was an option due to the severity of symptoms and the fact I had previously had a gallstone. It got out in the nick of time! I have been through psychotherapy, taken every anti-depressant or anxiety med known to humankind, and now there is a fury in me. I tell people not to let some idiot in a lab coat with a God complex tell them what to do with their body.

Sincerely,

NoGluGirl

[sunnyray]

I think you have it right.....they seem to think that they are GODS and know everything there is to know. I've personaly been misdiagnosed even with more common things like mono and pnemonia and a rare strep wich all the testing came back postive for....all of wich I have self diagnosed. I wish there were more doctors that would listen to there patients. No one knows ones body better than it's owner. As far as the insurance goes I have none....I have stayed home with our daughter who I was told not to put in any day care period for at least two years due to being 3 months premie and chronic lung disease and of course my husband refuses to find a job with health insurance. My grandmother is suggesting I go to her fam doc who is about an hour from us. I think I will save up the money and go there. Many members of my family have had good luck with him. Oh yeah hes not and idiot...he himself and his daughter have the disease so I might just be able to trust him just a little.

Hi there - this is my first day on this message board and your post was one of the first I noticed - lots of people have been through what you're going through - that's why the average time from 'noticing' symptoms to date of diagnosis is so many years! One thing you might consider is to contact www.enterolabs.com. They have a stool sample test that you can do at home, that is not too very expensive if I remember correctly. I think that even this test is better if you are still on a gluten-containing diet when you test, but I think you can test reliably with this method for several months even after you begin a gluten-free diet. I completely understand about 'just wanting to know for sure'. It's completely understandable to want to say "see, I knew what was wrong with me!" But it's also part of just having that sense of having the answers in life that matter about your life and having your own validation. Greatest of luck!

[tiffjake]

I think that even this test is better if you are still on a gluten-containing diet when you test, but I think you can test reliably with this method for several months even after you begin a gluten-free diet.

Their information says that you must have had gluten within the last 29 days (or within the last month), for the test to show the antibodies.