I Found My Diagnosis Not My Doctor, And It Bothers Him.

[I hate gluten]

Everyone here has that great doctor story. (lol) Had my first doctors apoint. since taking my self off gluten. I started off telling him all the symptoms I had before switching my diet. Then I told him the have all vanished in 7 days since starting the gluten free diet. (insomnia, vertigo, nasuia, extreme fatigue, irritablity, headaches you name it). Of course he was concerned and I asked him to please run blood work for me, complete blood profile, Celiac panel, t-4, vit d and b-12, and what ever else he wanted to run. Not sure if anyone had ever requested specific blood work before to him, but he was shocked, but very nice about it. After telling him how much I improved and my family history of autoimmune issues. I also asked if he could give me a complete work up in case it is more wrong. So for some reason, I guess because I cried with happiness about feeling good for the first time in 6 years almost, he stated he thought I was depressed and gave me anti depressents. HELLO did you not hear me I finally feel good with just changing my diet. He also wanted to give me sleeping pills. WHAT! Really, if the diet is working and I am finally sleeping, do I really need them!? Its like doctors do not want you to feel better without drugs. Then He about flipped when I told him my sons Celiac test was neg but I switched his diet and am seeing drastic improvement. "How do YOU know whats wrong, you are treating something that is not even diagnosed, at least get a biopsy before you make such a drastic diet switch!" Ok so he wants me to put my toddler under anesthesia, that is much safer than a diet switch. WHATEVER! Well I got what I wanted done, my blood work. I really did not go to see him but to have my blood work done. They could get me in, in 2 weeks versus months for a new doc, so I chose the lesser of two evils. Love the mentality of treating symptoms over the problem. Gotta love it. Ps he also stated that lupus has strange symptoms so I prob. have that not Celiacs. Ok whats another blood test, guess he can not stand to have one of his patients figure out what is wrong after 6 years since he couldnt. Also when i stated 6 years ago about how fatigued I was he stated that I had infant twins he wouldnt want to get out of bed either.

[Fiddle-Faddle]

He didn't bother to tell you that if you are already gluten-free for more than a couple of days, then your blood tests are likely to be normal, did he? Or that lupus is linked with celiac? You have to be EATING gluten--lots of gluten, 3-4 slices a day for several months--in order for your body to be making the antibodies against gluten.

I'm so glad you found your own answers and this board--welcome! Your doctor sounds like a prime idiot for sure.

[dilettantesteph]

My stupid doctor told me that my uncontrollable diarrhea causing me not to even make it the 20 feet from the kitchen to the bathroom, causing me to dump a whole load in my pants, running down my legs was consistent with IBS!!!

At least she didn't give me a hard time when I diagnosed myself. She should have said that she was sorry that she hadn't tested me for celiac years ago. My tests came out negative because by the time I saw her I was gluten free over a year. She still sent me to the GI.

The GI docs had no problem with a self diagnosis and said that I had done for myself what they would have had me do. I was so afraid they would try to talk me into eating gluten again for testing. They did not want me to. What a relief! I think they do that when the diagnosis isn't clear.

Doctors are our employees, our advisors, but we are in charge of our bodies.

[Jestgar]

"How do YOU know whats wrong, you are treating something that is not even diagnosed, at least get a biopsy before you make such a drastic diet switch!" Ok so he wants me to put my toddler under anesthesia, that is much safer than a diet switch. WHATEVER!

I just really like this . I think professionals get so caught up in their own skills, they forget that not everyone feels the same way.

Doctors are our employees, our advisors, but we are in charge of our bodies.

Absolutely.

[Mother of Jibril]

I agree that the doctor is an idiot for trying to give you antidepressants and sleeping pills... classic. Don't listen to the "emotional" female, just give her drugs.

However... be careful about ignoring other ideas like lupus. I'm sure that you DO have a gluten problem (an elimination diet is the gold standard of proof), but there are lots of other autoimmune disorders that can wreak havoc with your digestive system. For example... one of the symptoms of Hashimoto's hypothyroidism is constipation. Sjogren's syndrome dries out everything in your body (eyes, mouth, nose, etc...) including your stomach and intestines, so that can interfere with proper digestion. You could very well be deficient in B-12... or maybe magnesium. You need to have the right balance of calcium/magnesium for proper contraction in your muscles and digestive system.

There is SO much to learn! When I started this journey last April I kept thinking "This is the answer!" (and believe me... I was desperate for answers). Dairy was part of the answer. So was gluten... and corn... and taking vitamin D for depression (it helps a LOT)... and figuring out that my chronically dry eyes/mouth could feel sooo much better with proper treatment. I'm still putting the pieces of the puzzle together I wish there was somebody you could go to that would just run all kinds of tests and figure out what your problem(s) are... but that person doesn't exist. Not when it comes to autoimmune disorders. Next month I'm seeing an endocrinologist, rheumatologist, and a gynecologist. I feel better than I have in YEARS, but there are still some things to sort out.

[I hate gluten]

I figured I would start the diet no matter what because I could not get off the couch anymore. I have 3 small children and I could not even take them to school half the time. It was ruining our lives. My doctor gave me a month to wait for an apointment because it had been going on so long and it was not an emergency. I will be having a scope no matter what. Normal celiac test- scope to see what is wrong. Possitive celiac test- scope. Either way. Doctors specialize in every feild, why can there not be any doctors out there that focus on diagnosis. (kind of like the tv show House) THere may be outthere somewhere, but they are few and far between. Unfortunately the doctors we see now are drug happy, symptom treater (in my experience). I just want to feel normal, have enough energy to start going to the gym again and playing volleyball again. I want my kids to go to the zoo with me without having to only stay there for 30 min because mommy is so tired. They deserve that. They do not understand. I want them to think better me than a lazy couch potatoe, but if that is all they see, I can not expect them to think any different. If i have something genetically wrong with me, then I can help my kids by finding out. One of my sons no longer wants to go to school, he wants to stay home with mommy, it may be normal for a younge child, but I also want to lead by example and my life is not a possitive example. I may have ruined my celiac test by eating gluten free for one week, but to me it was worth it.

[Takala]

It's like we're all on Star Trek and the Universal Translator

[sbj]

Also when i stated 6 years ago about how fatigued I was he stated that I had infant twins he wouldnt want to get out of bed either.

Your doctor certainly is terrible! I hope your next one is better. I think I must be the only poster here who has had a good experience with his doctor!

My story is almost exactly the opposite. In fact, if not for my doctor I would never have known that I have celiac disease and I would be harming myself right now without even knowing it. I am forever indebted to him and the pathology department.

I realize my story is different than most, but there are two sides to every coin. I'm glad we are both on our way to recovery even though we took different paths to get there.

[Fiddle-Faddle]

Takala, are you off dairy? I've read in several places that autoimmune arthritis can be triggered by gluten and/or dairy.

[Amyleigh0007]

Some doctors are a joke. Mine certainly is. When I went in to have my Celiac bloodtests done he told me he only tests the elderly for Celiac. When I told him my young son was diagnosed he acted like he didn't believe it. When I tried to change doctors word must have gotten back to him. His office called me and asked why I wanted to make an appointment with this other doctor.

[mushroom]

When I tried to change doctors word must have gotten back to him. His office called me and asked why I wanted to make an appointment with this other doctor.

Don't you just hate it when they do that, doctors keeping a register of "problem" patients because of their own incompetence! That's the whole problem I found with HMO's--there is no privacy within them. I once kept my mouth shut for a whole year about this really GROSS doctor, rude, incompetent, etc., etc., because I didn't want to get blacklisted. I finally called the HMO organization and they had me write a letter detailing my experiences and he got hauled on the carpet, thank goodness.

[Takala]

Takala, are you off dairy? I've read in several places that autoimmune arthritis can be triggered by gluten and/or dairy.

I tried that when I first went grainless on the SCD, I couldn't even do the yogurt (not knowing that one must be very, very careful of just what yogurt one eats) and it didn't do anything for me once I had gotten my gut to heal up. So I carefully added back in some goat cheese to see what would happen, then some aged cheese, mostly organic. Once in a while a little bit of organic cultured butter, and plain yogurt. I've gone months dairy free out of curiosity and still flared up, it always turns out I was getting gluten cross contaminated from something else. I suspect I have enough northern european in the genetic mix that if I just avoid lactose I'm okay.

I read somewhere that there are certain cows that have something different about the milk they produce, that don't tend to trigger as many problems, but I can't remember the technical explanation and need to research this.

What I also wonder could it be possible that cows eating wheat or barley (rarely, but possible) in mixed grain feeds possibly be passing gluten thru their milk, since it seems some human children are actually sensitive to human breast milk if the mother eats gluten.

[mushroom]

I read somewhere that there are certain cows that have something different about the milk they produce, that don't tend to trigger as many problems, but I can't remember the technical explanation and need to research this.

Maybe this is what you read. This is taken from the New Zealand Food Safety Authority:

"What’s the difference between ‘A1’ and ‘A2’ milk?

The name comes from the type of protein in the milk. Milk from cows, and any other milk producing animal, can vary quite a lot in the types and amounts of proteins they contain.

Cow’s milk contains six major proteins. Four are casein proteins, the other two are whey proteins. Casein proteins make up about 80 percent of the protein in cow’s milk. A type of casein called beta-casein is one of the major ones, and is itself of different kinds, depending on the genetic make-up of the cow. The most common are beta-casein A1 and beta-casein A2. Milk high in beta-casein A1 is being referred to as ‘A1 milk’ while milk high in beta-casein A2 is being called ‘A2 milk’.

What milk am I drinking?

Milk produced in New Zealand and many other countries normally contains a mixture of A1 and A2 beta-caseins. Different breeds can produce different milk. For example Friesian cows produce mostly A1 milk, while Guernsey cows, sheep and goats produce mostly A2 milk."

A2 milk tends to be associated with less coronary heart disease. I have no idea if it has anything to do with casein-sensitive individuals.

[Mother of Jibril]

Milk produced in New Zealand and many other countries normally contains a mixture of A1 and A2 beta-caseins. Different breeds can produce different milk. For example Friesian cows produce mostly A1 milk, while Guernsey cows, sheep and goats produce mostly A2 milk."

My casein-intolerant son has a reaction to both cow's milk and goat's milk Major bummer.

[Fiddle-Faddle]

You might also be reacting not to the milk itself, but the toxins (antibiotics, pesticides, hormones, etc.) passed through the milk, especially in the US. A friend of mine has a daughter who has always reacted to dairy here in the US, but not in Europe. (She'd run out of soy milk while touring Europe, and tried cow's milk, sort of "what the heck," and didn't react. They thought she was cured--then they went back to the US and back came all the reactions.

Apparently, the US dairy farmers at that time had the cows on constant low-dose antibiotics, hormones, and they were eating pesticide-laden feed. For all I know, they might still be doing that, and the European ones as well, but back then (10 years ago) they weren't in Europe.

[JNBunnie1]

You might also be reacting not to the milk itself, but the toxins (antibiotics, pesticides, hormones, etc.) passed through the milk, especially in the US. A friend of mine has a daughter who has always reacted to dairy here in the US, but not in Europe. (She'd run out of soy milk while touring Europe, and tried cow's milk, sort of "what the heck," and didn't react. They thought she was cured--then they went back to the US and back came all the reactions.

Apparently, the US dairy farmers at that time had the cows on constant low-dose antibiotics, hormones, and they were eating pesticide-laden feed. For all I know, they might still be doing that, and the European ones as well, but back then (10 years ago) they weren't in Europe.

The US has been poisoning the food supply slowly and insidiously for a long time, especially meat and dairy. We actually get raw milk from a local farmer, and the change in ME has been truly unbelievably extroardinary.

[I hate gluten]

My 6 year old has some medical trouble and at 1 he was in physical therepy. I was talking to the therepist about diet and all and she said all the therepist there eat organic meat and milk. When I ask why (wish I would not have) she stated that they see at least 1 new patient every 6 months that is going through early puberty and the one that did it for her was a little girl 5 years old. They could find nothing medically wrong and the only things doctors linked it to is the hormone in milk and meat. 5 years old!!!! Yeah that story still haunts me when I see kids drinking non organic milk.

[ravenwoodglass]

The US has been poisoning the food supply slowly and insidiously for a long time, especially meat and dairy. We actually get raw milk from a local farmer, and the change in ME has been truly unbelievably extroardinary.

I agree totally. Once farming became 'big business' and we started deciding that we could improve on mother nature and we had to be able to keep food 'fresh' and make thing more 'fast' and handy the health in the US started going down hill fast. They bombard our food with all this stuff to make a buck a don't give a whit about what it does to us until large numbers of us are effected. I love the multigrain kick with so many cereals today. Did ya ever read a box? Mostly they just add a starch or two, usually wheat. Like that has any health benefit for anyone.

They actually arrest people for selling raw milk here. I hope it doesn't spread to your area.

[mushroom]

They actually arrest people for selling raw milk here. I hope it doesn't spread to your area.

You can't sell it here either. When we left the farm and our own cows and moved to the city I stopped drinking milk, not recognising that pasteurised, homogenised muck as the same product that came from our cows. You can't even buy fresh milk today!!!(with a couple of very limited exceptions); it is all reconstituted from powder, New Zealand being one of the world's biggest producers of milk powder through the Fonterra cooperative.

[Anna and Marie]

Hey there!

Sounds like all of our doctors are fools. I was sent to a metabolic specialist after the family doctor ran blood tests and the specialists just ran MORE blood tests. He didn't do Celiac though. I think he wanted it to be IBS, I dunno. After the blood tests were sent off he told me to come back in 6 MONTHS to try more testing. That was the day that I self diagnosed my self, officially, and I have been gluten free ever since. My horomones were off but that was all he tested. I don't think I had enough gluten in my body anyway, I had already started the gluten free diet two years prior to that doctors appointment. He prescribed horomone replacement pills but that only led to a mild case of depression. It lasted for about six months. I'm thinking of getting DNA tests for Celiac and Crohn's this summer and some other tests run to make sure there isn't something else there too.

[fripp017]

Everyone here has that great doctor story. (lol) Had my first doctors apoint. since taking my self off gluten. I started off telling him all the symptoms I had before switching my diet. Then I told him the have all vanished in 7 days since starting the gluten free diet. (insomnia, vertigo, nasuia, extreme fatigue, irritablity, headaches you name it). Not sure if anyone had ever requested specific blood work before to him, but he was shocked, but very nice about it.

Ok whats another blood test, guess he can not stand to have one of his patients figure out what is wrong after 6 years since he couldnt.

It's nice to know I am not the only one with an idiot doctor. My is actually my specialist. I have had blood work come back showing signs of Celiac. My GI even did the biopsies and just ran tests for stomach bacteria, even though all of my symptoms point to Celiac. I was off gluten for a week before I saw my GI and I told him how great I felt. He said it was probably ulcers. I couldn't believe he said that. I have had tests every week to two weeks and none of them have returned any results EXCEPT the Celiac antibodies.

I am at the point where I want to tell my doctor off, like you did lol. He is driving me crazy. I just want to tell him to stop wasting money and diagnose me already.

[Beloved]

I think all of this is rooted in the fact that most doctors simply know diddly about celiac. My doctor kept telling me I was stressed when I kept coming back to him with my symptoms, and it was only after I read an article on "The Real Doctor House" and found out about this disease caused Celiac that I started to wonder. While he was pushing me to take anti-depressants, I told him I wanted a blood test. When it came back positive, he was shocked and I believe it honestly never even crossed his mind as a possibility. He had been sure it was irritable bowl aggravated by stress.

The one good thing about my doctor is that since then he has been taking my opinions and worries alot more seriously, although he still doesn't know much about celiac.

[mushroom]

I told him I wanted a blood test. When it came back positive, he was shocked and I believe it honestly never even crossed his mind as a possibility. He had been sure it was irritable bowl aggravated by stress.

I wonder what percentage of supposed IBS is actually celiac??

[leadmeastray88]

While he was pushing me to take anti-depressants, I told him I wanted a blood test. When it came back positive, he was shocked and I believe it honestly never even crossed his mind as a possibility. He had been sure it was irritable bowl aggravated by stress.

That's what my doc told me - IBS due to stress. And he refused me a scope because he said I was stressed out enough.

My dad's cousin had "IBS" for years, and she just had a Celiac panel last week which came back positive. Go figure.

I wonder what percentage of supposed IBS is actually celiac??

I don't even want to know :S

[TearzaRose]

It's such a shame that sooo many dr.s are quick to prescribe a pill instead of a diet or lifestyle change....it all comes down to $$$. If they see you can cope without meds, their relationship with the pharmaceutical industry will suffer greatly.

anyway, non-related to celiac, but relevant as far as dr.s and prescriptions:

my 18 year old step son was having problems in his college math course....couldn't concentrate, would daydream, did bad on tests no matter how long he "studied". so,

he went to the dr. to get some Adderol!! I was LIVID when i found this out and wanted to confront the dr. myself, but b/c my step son is 18, I have no rights in the situation.

well, little does this dr. know, the problem is not solved by Adderol (speed). It's solved by my stepson not texting 20 times an hour while studying, blasting music, and not eating right or getting enough sleep. I know exactly what the problems are. I've witnessed firsthand how he "studies." He doesn't understand what he's studying, and NO PILL IS GOING TO HELP HIM UNDERSTAND! he does fine in his other classes.

ugh! pisses me off.

anyway, done with my rant.