Doctor Says I'm Nuts!

[hannahsue01]

As some of you may have already read I have been having problems getting diagnosed. I have a list of symptoms forever long of wich I gave my doc today. Today she says that there is really no way that I should have celiac because my Iron and viatamen levels were ok. My question is if my iron and viatamens are ok is she right? Wouldn't this mean my stomach is ok and obsorbing what it needs to? If that is the case why do I feel like this.....what the heck is wrong with me. Most of my tummy troubles always seem to relate back to gluten in my food but maybe it's all in my head. Then there is a stong and I mean stong family history of the disease. Also for years I have not been able to eat blue bunny ice cream with out getting really sick but could eat the store brand and be ok....come to find when I checked the label at the store the other day it has wheat flower in it.....so why would I react to that one and not the other ice cream if I wasn't having a problem with gluten. Then she told me that all of my symptoms including my bowel problems are due to being depressed. I thought depression went along side of this disease allot of the time? So she perscribed fiber and somesort of muscle relaxer for my stomach and told me to see a phycoligist and get on meds. She also told me I still need to get a MRI of my stomach do a stool sample and more blood tests (but not the ones I want for celiac) and back to an oncologyist/blood doctor who costs almost $300 a visit. I told her I have no insurance!!! Can we say medical BILLS anyone. Then as my husband pointed out she says that NO FAMILY DOCTOR can ask for these tests and that she really doesn't know much about the disease.......well no ****!!!!!!! Funny thing is that our daughters family doc ordered the tests for her. What do I do now......is she right?

[plantime]

You do not need a doctor's permission to eat gluten free. Just do the diet. Try it for 6 weeks or more, see how you feel. It is possible to have the disease, but not enough damage to show up anywhere.

[tiredofdoctors]

I think that a family doctor CAN "order" the tests. Actually, what they are doing is "prescribing" them, and allowing the facility where you would go to perform those tests. They can't do that without that "prescription", just like you can't get certain medications without a prescription. That being said, just because the doctor "orders" them, it CERTAINLY doesn't mean that you have to go through with them. In the patient's bill of rights, you have the right to NOT CONSENT to any procedure.

No one tested my antigliadin antibodies for a long time . . . . now I'm in a wheelchair. I don't have celiac . . . I have gluten intolerance.

I say, if gluten makes you feel bad, and you have seen a pattern that has evolved, stop eating gluten. Period. Forever. You know intuitively more about your body than ANY physician will. Ask any woman who has had breast cancer that was almost too small to detect. They will tell you that they KNEW they had it. I had a friend who INSISTED for a second set of mammograms and ultrasounds because she KNEW. She was right . . . and had to have a bilateral mastectomy. You know your body better than anyone else. Listen to it. Hugs to you,

Lynne

[Ursa Major]

I agree with the others. Your doctor is totally, utterly wrong with EVERYTHING she said. My advice is: Do NOT go to a psychologist, do NOT take antidepressants, do NOT have an MRI of your stomach, or anything else this doctor is trying to order you to do. Your iron and vitamins might be okay because your villi aren't (yet) totally destroyed, and you still absorb those. That certainly doesn't mean that you can't have celiac disease. Stop listening to this impossible woman, she is WRONG!!!!!!!! And yes, gluten can, and will, cause psychological problems, including depression and schizophrenia.

And you're RIGHT when you question her, and for wanting to find out if you have celiac disease. I say, turn your back on this doctor (as in firing her) and start the gluten-free diet to see if you'll feel better. If you do, then you have your answer. You don't need your doctor's permission to do the diet, only your own. Only YOU decide what you will eat!

Now, be aware that when you go off gluten, that you might have withdrawal symptoms and feel worse for the first week or so. It doesn't happen to everybody, but if it does, don't let it throw you, and stop the diet. Give it at least six months to prove whether it helps or not. For some people, that's how long it takes to see any positive result. Many people see an immediate change, but DON'T count on it, or you might be disappointed.

I am very angry with your doctor for being so closed minded and arrogant, making you feel like you're ignorant and don't know anything about your body. Be strong, and do what you know is the right thing to do.

{{{{{{{{hugs to you}}}}}}}}}}}}

[CarlaB]

Many of us with gluten intolerance have antibodies that do not show up in the bloodwork, yet we have severe symptoms. I am every bit as sensitive to gluten as a celiac and an accidental glutening will have me down for a week or more. I am 8 months gluten-free and still not feeling right. Yet, I don't fit the medical protocol for being sick ... I'm sub-clinical.

I was tested by Enterolab and found I was having an autoimmune reaction to gluten. It was not all in my head. I liked seeing it on paper. You can see what your dietary response is, that's a test, too.

You don't have to wait till you're REALLY sick to go gluten-free!! If you have a problem with it, the sooner the better.

[rinne]

Trust yourself. The advice given above is solid and I won't repeat it but I would just like to say I am sorry that that doctor was such an idiot. Wouldn't it be wonderful to have a doctor say, "I don't know what is causing your pain but I will refer you to someone who may be able to help you".

My mother, who has been sick for nearly 30 years, saw a doctor at one point who gave her a sample pack of anti-depressants, she gave back to her regular doctor saying, "I have enough problems without taking these." Sometimes my mother surprises me.

My bloodwork came back fine, no anemia and no sign of Celiac but I know gluten makes me very sick as does dairy. I have been gluten free for four months, except for a couple of accidental glutenings in the beginning, and dairy free for three months. For the first time in my life I am having regular bowel movements, I always suffered from constipation, and the malabsorption problems I was having before going gluten free are greatly diminished.

I am not convinced that Celiac or gluten intolerance (I don't care what it is) is the only problem I have and I am continuing to investigate my other symptoms. I am clear though that being gluten and dairy free is helping me enormously.

I think an important thing to remember about Celiac is that what they are diagnosing is damage and the damage has to be signifigant for them to see it. My acupuncterist says that our bodies are very precise and they communicate to us what we need, it is up to listen and respect the messages they are sending us.

I hope you feel better soon.

[par18]

As some of you may have already read I have been having problems getting diagnosed. I have a list of symptoms forever long of wich I gave my doc today. Today she says that there is really no way that I should have celiac because my Iron and viatamen levels were ok. My question is if my iron and viatamens are ok is she right? Wouldn't this mean my stomach is ok and obsorbing what it needs to? If that is the case why do I feel like this.....what the heck is wrong with me. Most of my tummy troubles always seem to relate back to gluten in my food but maybe it's all in my head. Then there is a stong and I mean stong family history of the disease. Also for years I have not been able to eat blue bunny ice cream with out getting really sick but could eat the store brand and be ok....come to find when I checked the label at the store the other day it has wheat flower in it.....so why would I react to that one and not the other ice cream if I wasn't having a problem with gluten. Then she told me that all of my symptoms including my bowel problems are due to being depressed. I thought depression went along side of this disease allot of the time? So she perscribed fiber and somesort of muscle relaxer for my stomach and told me to see a phycoligist and get on meds. She also told me I still need to get a MRI of my stomach do a stool sample and more blood tests (but not the ones I want for celiac) and back to an oncologyist/blood doctor who costs almost $300 a visit. I told her I have no insurance!!! Can we say medical BILLS anyone. Then as my husband pointed out she says that NO FAMILY DOCTOR can ask for these tests and that she really doesn't know much about the disease.......well no ****!!!!!!! Funny thing is that our daughters family doc ordered the tests for her. What do I do now......is she right?

I think your doctor may be right when she says the bowel problems are connected to the depression. The only problem is I think she has the connection backwards. The depression is not the source of the bowel problems, it is the "result" of the bowel problems. I had never been depressed in my life until I started having gastrointestinal issues. Family members were convinced it was all in my head when in fact it was all in my stool. This whole IBS/depression issue is just another situation in which all other avenues of treatment must be tried in place of the gluten-free diet because once the diet is prescribed the money to made off of you ceases. As the old saying goes "we can do this the easy way or the hard way". The choice is yours . I have yet to hear of anyone who has gotten sicker after going on the gluten-free diet. If you have no insurance then trying the diet should be your most logical choice. Good luck.

Tom

[penguin]

My doctor said that studies have come out showing that IBS is often caused by a seratonin imbalance, so their starting to prescribe SSRI's for it. Go figure.

[Matilda]

..

[Fiddle-Faddle]

I don't think anybody on this board has regretted going off gluten--regardless of lack of official diagnosis or lack of approval from a doctor. Like Lynne and Ursula say, you don't need permission from a doctor to use your brain and change your diet.

If you go off gluten for 6 months, and decide that gluten wasn't really your problem, it's not like you're going to spend the rest of your life saying, "Dang! I wish I'd eaten more gluten during those 6 months!"

We pretty much know the cause-and-effect of gluten. Psych meds, on the other hand, are a total shot in the dark. The doctors don't test you to see what chemical you might or might not be producing, (not to mention why) they just say, "Well, let's see if this works," give you meds, and either tweak the dosage or change the chemicals until you stop complaining.

Do you want 1) a doctor playing Russian Roulette with your body by prescribing chemicals or 2) to try to eliminate possible causes of the problems you are facing? YOU get to decide.

WE don't think you are nuts. JUst because the doctor says you are, does that mean it is true? Do you FEEL like you are nuts?

Most of us have been brought up to believe that doctors are the most intelligent and knowledgable people around, and that we should respect their advice--but in reality, do they listen to what we say, and do they actually know what they are dealing with when it comes to gluten and our bodies? They are TRAINED to prescribe meds to fix nearly every problem (and let's not even get started on surgery), not to look for underlying causes.

I'm not saying I'll never go to a doctor again--but I have lost faith in many aspects of our medical system.

[hannahsue01]

I agree with the others. Your doctor is totally, utterly wrong with EVERYTHING she said. My advice is: Do NOT go to a psychologist, do NOT take antidepressants, do NOT have an MRI of your stomach, or anything else this doctor is trying to order you to do. Your iron and vitamins might be okay because your villi aren't (yet) totally destroyed, and you still absorb those. That certainly doesn't mean that you can't have celiac disease. Stop listening to this impossible woman, she is WRONG!!!!!!!! And yes, gluten can, and will, cause psychological problems, including depression and schizophrenia.

And you're RIGHT when you question her, and for wanting to find out if you have celiac disease. I say, turn your back on this doctor (as in firing her) and start the gluten-free diet to see if you'll feel better. If you do, then you have your answer. You don't need your doctor's permission to do the diet, only your own. Only YOU decide what you will eat!

Now, be aware that when you go off gluten, that you might have withdrawal symptoms and feel worse for the first week or so. It doesn't happen to everybody, but if it does, don't let it throw you, and stop the diet. Give it at least six months to prove whether it helps or not. For some people, that's how long it takes to see any positive result. Many people see an immediate change, but DON'T count on it, or you might be disappointed.

I am very angry with your doctor for being so closed minded and arrogant, making you feel like you're ignorant and don't know anything about your body. Be strong, and do what you know is the right thing to do.

{{{{{{{{hugs to you}}}}}}}}}}}}

Your reply made my husband and I laugh. I have officially decided not to fill her scripts nor to go back to her again. I am going to save up the money to go to my grandma's doctor who seems to have a brain. I don't know if you or anybody else reading this knows but as stated she says my iron came back ok but throughout my life everytime I have gone to donate blood I never get past the finger prick test and they tell me that my iron is to low to donate. Also I have the dips in my finger nails usually my thumbs and have for quite some time. I also off and on have had bright white specks in various nails. Does anemia come and or what? I hope it doesn't take to long to start feeling better once going off of gluten.

[Fiddle-Faddle]

What do the dips and white specks in the nails mean? I used to have those, too--but not now. I don't know when they went away, but I've only been off gluten for about 7 months.

[hannahsue01]

What do the dips and white specks in the nails mean? I used to have those, too--but not now. I don't know when they went away, but I've only been off gluten for about 7 months.

If you look up dips and finger nails in the same web search you get anemia pages. That's why I wondered since I have these dips and have not been allowed to give blood due to low iron if low iron can come and go....thing is I currently have dips and she says my iron was fine. The white specks are sapossed to be a vitamen deficiency but I don't remember wich one. I also have a significant amount of floating fat (looks like oil floating on top of the water) as well as floating stools......so if I am absorbing stuff why is this happening....gross I know....sorry.

[Ursa Major]

Ah yes, floating stool........that shows you're not absorbing fats, which is bad. And very common for celiac disease. Also, you may have tested on the very low end of normal for iron, which would cause most doctors with half a brain to tell you to take supplements, rather than telling you your iron is fine. This doctor (and I almost hesitate still calling her that) is so intent on being right, that she is probably keeping that truth from you. Call the doctor's office, and demand to know your values, as in exact numbers. In order to know where you stand, you also need to know what your particular lab considers to be the 'normal' range. I have found that what they consider still normal (the lowest number) is ridiculously low, especially when you look at what their high normal is.

I was told that normal ferritin levels (according to my lab) are from 40 to 300. An AWFULLY wide range, as far as I am concerned. My doctor thougth that even a count of 20 was still acceptable. She got only alarmed when mine went down to 4 a few years ago (and I was so weak that often my legs would just give way, and I had to stay in bed).

I think the dips in your fingernails may be due to low vitamin B levels (don't know which one in particular, you can't go wrong in taking a vitamin B complex, plus additional vitamin B6 and B12), as well as possibly low calcium and magnesium and vitamin D.

[ravenwoodglass]

If you look up dips and finger nails in the same web search you get anemia pages. That's why I wondered since I have these dips and have not been allowed to give blood due to low iron if low iron can come and go....thing is I currently have dips and she says my iron was fine. The white specks are sapossed to be a vitamen deficiency but I don't remember wich one. I also have a significant amount of floating fat (looks like oil floating on top of the water) as well as floating stools......so if I am absorbing stuff why is this happening....gross I know....sorry.

Different doctors interpret tests differently. If you levels were even 1 point above the 'normal levels' she might say they were fine. Doctors did this with my B12 levels they got down to about 235 with clinical low being 225. The fact that they were over 500 5 months before that didn't matter to this doctor. I agree with the others fire this doctor and just go gluten free.

[shayesmom]

What do the dips and white specks in the nails mean? I used to have those, too--but not now. I don't know when they went away, but I've only been off gluten for about 7 months.

The white flecks on the fingernails is usually a sign of zinc deficiency. I believe that's one of the more common mineral deficiencies associated with Celiac. A zinc deficiency can contribute to a lot of different problems (info from: Open Original Shared Link.

The structure and function of cell membranes are also affected by zinc. Loss of zinc from biological membranes increases their susceptibility to oxidative damage and impairs their function.

Zinc finger proteins have been found to regulate gene expression by acting as transcription factors (binding to DNA and influencing the transcription of specific genes). Zinc also plays a role in cell signaling and has been found to influence hormone release and nerve impulse transmission. Recently zinc has been found to play a role in apoptosis (gene-directed cell death), a critical cellular regulatory process with implications for growth and development, as well as a number of chronic diseases.

The symptoms of severe zinc deficiency include the slowing or cessation of growth and development, delayed sexual maturation, characteristic skin rashes, chronic and severe diarrhea, immune system deficiencies, impaired wound healing, diminished appetite, impaired taste sensation, night blindness, swelling and clouding of the corneas, and behavioral disturbances.

[Fiddle-Faddle]

wow. Thank you for the info.

[GFBetsy]

By the way, another sign of anemia is a desire to chew ice, suck on rocks, eat dirt, or just stand around smelling laundry detergent all day long. It's called pica. My mom had it, and she says that the weirdest effect of going gluten free is that she no longer wants to chew ice. She always thought that she "Just liked to" eat ice, but since she went gluten-free and her iron levels returned to normal, she would rather drink more water than sit around chewing her ice. She was so surprised at that change . . . but not as surprised as we were when she drank a glass of ice water and then immediately asked for more water!

[Shalia]

The money isn't in Celiac, the money is in "you're nuts!"

Trust me, I know. I'm nuts. *grin* I've been on 32 psych meds in 3 years, several of which have thrown me for loops so bad I've been hospitalized.

If I'd've known about the gluten connection years ago, maybe I'd have been spared the pain of 60 extra lbs, 45 (or so) days in psych hospitals, and 32 meds. But instead, I'm on a billion (OK, six) meds and I can't seem to function without them.

Go for the diet first.

The pharm companies can't make money off your diet, they make money on your prozac.