Discouraged And Frustrated

[Aleshia]

btw here i my symptoms (all of them) that "don't fit celiac disease"

raised liver enzymes

unable to concentrate

poor memory

I feel unsafe driving because of my concentration

clumsy, drop knives and pans in the kitchen and its worse at night.

I bump into doorways and doorknobs with my hands, shoulders and hips... its like I can't judge the distance or something!

I have to catch my balance alot, when walking or sometimes just standing... I just start to fall over.

I get anxious in banks and post offices etc. my heart beats faster, my face feels hot and flushed, my hearing gets muffled and my vision goes blurry... it makes it harder to concentrate and I feel like I'm going to make a fool of myself

my feet, legs, arms and hands get numb easily. just resting my hands in my lap can make me go numb

I get headaches and migraines more frequently.

I have lost 2 inches of height in 3 years.

I get pain in my lower abdomen that feels like I'm digesting broken glass

I feel like my fingers get broken when I do things like start the car or move a chair or vacuum, it feels like it snaps, then pain like a bee sting and swelling and bruising but then it goes away within a few hours.

I have severe dental problems that just cropped up in the last 2-3 years and have had to have almost every tooth in my mouth repaired. I also found out from my mom that my baby teeth were pitted.

I bruise more easily than I used to, sometimes I don't know what the bruises are from but the places they are at seem consistent with where I bump into doors. such as on my arms and hips. sometimes on my shins and hands.

I am more irritable than I used to be.

my hands are sometimes shaky and my handwriting isn't as good as it used to be

my hair is oily for the first time in my life and I have severe dandruff

my skin is dry and very itchy

I get headaches from strong smells such as perfumes, diesel, garlic, cigarettes etc...

I have about 10 large cysts on my scalp

I get muscle cramps in my hands and feet and also visible ones on my abdomen, looks like writers cramp where the muscle indents on your hand but its on my stomach usually on the right side but sometimes on the left

I feel like I'm starving one day and then the next I have no appetite

I get hot and cold at odd times, my hands and especially my feet are almost always ice cold

I go to sleep freezing and wake up sweating

I don't seem to sweat at all from my forehead even when exercising, I just get really overheated

I have difficulty losing weight even on weight watchers

I get achy joints, even as a teen, mostly my ankles, knees and elbows but if I sit with my toes bent for even a few minutes my toes hurt severely when I try to straighten them. its like my joints get stuck in one position and it hurts to move them.

my hips and ribs are tender to pressure, it used to hurt my ribs when my dad would tickle me as a kid and if I wear jeans with front pockets at the hips my hips hurt.

I get brain fog and my thinking is disorganized, I have a hard time articulating what I need to say or what questions I need to ask to get information especially over the phone. I stumble over my words and can't think of what I was going to say.

I have a harder time getting to sleep than I used to and I don't wake refreshed most days

low libido

dry, raw, itchy vagina

dry cracked sores at the corner of my mouth and edges of my nose and backs of my ears

incontinence, but not as severely as in pregnancy

sick and faint feeling when standing still for very long (like standing for prayer or things like that)

sore arms and shoulders when I lift my hands to do my hair

pain in my pelvis during my period

horrible "egg" burps

lots of bloating and gas. I feel like I am constantly passing gas.

abdominal/rib pain feels like something is clawing its way out at the same time as someone is holding a belt around my chest just under my breasts and tightening it

I have had geographic tongue on and off since I was 3 years old

dizziness and blackouts

sometimes I feel like the room is spinning and feel motion sick sometimes even when I am lying in bed with my eyes closed

I've always seemed to need more sleep than most people

sometimes when I bend over or stand up I see little flashing lights around me

ridges on my fingernails

I feel lethargic alot and it seems to be worse when I have cereal for breakfast

if I have too much cheese I get diarrhea

I get car sick more than I used to

my eyes feel dry and sometimes I get sharp pains in the sides of them almost like a needle

spasms and twitching muscles, especially in my legs and buttocks after a long walk, can last for hours

severe period pain and cramping, is a bit better and not so debilitating since having children.

it took 3 years to get pregnant with our first child who is now 5

my vision is blurry and it is alot worse at night. even in the day I feel like there isn't enough light and I want the lights turned on

[Tim-n-VA]

My wife had gallstones and had her gall bladder removed recently. What the doctor said there was that the technique of breaking up the gallstones with ultrasound was found to introduce many more complications than the surgery, especially since they are able to do the surgery with minimal incision and a scope in most cases.

Remember, the gall bladder only stores the bile produced by the liver. If you don't have a gall bladder, you lose only the ability of the body to provide a surge of bile. This is generally offset by the body adapting and storing some bile in the bile duct. Adjustments to the diet - less red meat - reduces the need for that surge. If you are getting gallstones, in most cases it is because of issues that keep the gallbladder from completely emptying allowing the bile to solidify. Just removing gallstones leaves the issues that allowed them to form in the first place and there is nothing to keep them from coming back.

[ravenwoodglass]

  Aleshia said:

btw here i my symptoms (all of them) that "don't fit celiac disease"

I think the gluten free diet is going to seem like a miracle to you. If you by any chance have a Wegmans near you start shopping there, they label all gluten-free stuff and no CC worries. You have come to the right place for support. Just do it, if not for you then for that little one.

[Tim-n-VA]

  Aleshia said:

but shouldn't a doctor at least listen to the symptoms and try to come up with SOMETHING? do some tests or send you to another doctor until it is figured out???

Yes and I said that in the previous sentence to the one you quoted when I said he should listen.

[Jestgar]

I also would suggest you start the gluten-free diet. And get a different NP.

Trader Joe's on Madison. Central Market in a variety of places

[Fiddle-Faddle]

I'll say it again: your doctors are idiots.

Joint pain, dry eyes, mental fog, and osteoporosis are OFTEN caused by celiac. I believe they are even on the list of symptoms here on celiac.com.

The osteoporosis would be caused because celiac causes leaky gut, which prevents your absorption of things like calcium. You might very well be anemic as well.

Treating bone loss is totally separate from the gluten-free diet, by the way. But I do think you need to find a celiac-savvy doctor ASAP. If you find instant relief on a gluten-free diet, a good doctor will NOT make you go back on gluten. That would be like asking you to eat peanuts to confirm a peanut allergy. Totally pointless, given your history, IF symptoms are totally relieved by the gluten-free diet.

[Aleshia]

  Fiddle-Faddle said:

I'll say it again: your doctors are idiots.

Joint pain, dry eyes, mental fog, and osteoporosis are OFTEN caused by celiac. I believe they are even on the list of symptoms here on celiac.com.

The osteoporosis would be caused because celiac causes leaky gut, which prevents your absorption of things like calcium. You might very well be anemic as well.

Treating bone loss is totally separate from the gluten-free diet, by the way. But I do think you need to find a celiac-savvy doctor ASAP. If you find instant relief on a gluten-free diet, a good doctor will NOT make you go back on gluten. That would be like asking you to eat peanuts to confirm a peanut allergy. Totally pointless, given your history, IF symptoms are totally relieved by the gluten-free diet.

thanks fiddle faddle at least I'm not totally a lost case then...

[VioletBlue]

Unfortunately, as many of us here have found out, GOOD doctors are few and far between. A good doctor would be alarmed at a patient telling them they've lost two inches of height. A good doctor would hear that and schedule the appropriate tests. Too often, doctors hear our symptoms, look at us and decide what our problem must be. This is particularly true of women and of Celiacs who are experiencing depression. It's easy to treat depression, they've got a pill for that, and depression explains everything else as far as they're concerned. Once they decide you're depressed they tend to discount every other word out of your mouth. In addition they don't look at the depression as a symptom of a bigger problem or a result of other physically problems. Instead they treat the depression in isolation from the rest of the patient's body. That is unfortunately how they've been taught to practice medicine.

The human body is very complex, but unfortunately western medicine loves to treat it in pieces rather than stand back and looking at the whole complex picture. They want to treat the gallbladder as a stand alone entity rather than seeing the connection between all the parts of the body. They'd rather do invasive surgery with the risks that it entails than spend the time and energy to figure out WHY the gallbladder is malfunctioning. To quote an old friend of mine "There's always a why."

  Tim-n-VA said:

Maybe not but as long as it is only you who will be affected you can give it as much weight as you want...

The human body is very complex. There is much variation within that complexity from individual to individual. There are many diseases/conditions with overlapping symptoms. A good doctor will listen to your observations about how you are reacting/feeling.

However, to call a doctor ignorant because he won't make a diagnosis based on the patient's self-described symptoms when other conditions could cause the same symptoms is pretty dangerous.

[Tim-n-VA]

There is a book about how doctor's think. The one point I think they miss is that it is really how all humans think. Once an "answer" is found, evidence is accepted that supports the answer and rejected if it doesn't support the answer. Doctors do it. People on this board do it.

While this thread is about a specific person (but they all are), this is a general situation. Sometimes instead a place to help people cope with gluten related issues, it becomes place to bash the medical profession. All of the people on this board combined have only encountered a small percentage of all doctors but that doesn't stop statistically inappropriate generalizations.

[Jestgar]

  Tim-n-VA said:

There is a book about how doctor's think. The one point I think they miss is that it is really how all humans think. Once an "answer" is found, evidence is accepted that supports the answer and rejected if it doesn't support the answer. Doctors do it. People on this board do it.

Nicely put.

Being a doctor is just a job. There are good ones and bad ones, just as in any other profession. We expect more of our physician because some of what they do is a complete mystery to us, but really, it's just a job.

[Aleshia]

  Tim-n-VA said:

While this thread is about a specific person (but they all are), this is a general situation. Sometimes instead a place to help people cope with gluten related issues, it becomes place to bash the medical profession. All of the people on this board combined have only encountered a small percentage of all doctors but that doesn't stop statistically inappropriate generalizations.

you are right, we shouldn't generalize... I just wish I could find one of those good doctors

[Aleshia]

anyway, to summarize my whole rant.. (maybe) I don't care if I have celiac disease or something else... I just want some straight answers and a doctor who is willing to do a little work to figure out what is wrong with me instead of just excuses and laziness if anyone is out there who can tell me a good doctor who knows something about this stuff and isn't just going to tell me I don't have celiac because I don't have diarrhea but not try to work out what the real problem is... please please let me know!

[Jestgar]

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