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We Need To Start A Thread On Stupid Stuff Doctors Say!

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Wow, I guess they don't export all the dumb doctors to the US. At least the one in Japan was decent enough to apologize to you

The dermatologist I've seen for the last three years had his receptionist call me tonight to apologize. She said that they had revamped the method and inserviced everyone in the office on how to route medical records, and proceeded to explain what happened, and how dear Dr. had never seen the biopsy report which diagnosed me with Discoid Lupus.

I was so p.o. I said "Donna, him not seeing the pathology report is not all that relevant to me. What I'm upset about is that I have an AI disease involving the skin with other AI diseases, and it is not an uncommon disease. He was my SKIN specialist!"

The main purpose of posting this, besides venting, is to give the heads up to anybody reading that if you get a spot on your face or earlobes (most common sites) that turns red and sort of white crusty on the edges, you must go to a good dermatologist. (I've got three spots now. Two of them don't itch, one is mind numbingly itchy.)

I was walking into a nephrology practice today and saw someone older than me with a scar on her face. I said hello, and asked how she was doing. She said, "I'm sick, that's why I'm here." She had the red mark smack in the middle of her nose where one of mine is, and it was crusty white on the edges. I asked her if she had Lupus and she said she did. Once you see it, you'll know. That's why I'm so upset with the old derm.

I would have preferred the deep bow. :D But I know I have to let it go to get better. Resentment and anger are never good feelings, it's time for me to move on. :)

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Arrrgh! :ph34r:

In all fairness to Charlie, she is employed by the two docs who own the practice (and more popular than either of them ;) ) and has no control over what procedures they set up. I actually like her and make the system work by knowing its limitations (hence my duplicate file and constant follow-up / taking the initiative :) ) Besides, I would have to drive for an hour to see another doc so it works for me in a crazy kind of way because she will normally order whatever I request (within the limits of the NZ health system :( )

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A deep bow would just take the sport out of sticking my foot up his or her arse! ;)

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I both love and hate reading all these. Love, because I see I'm not the only one who visits stupid doctors. And really and truly hate because it angers me so much that there are so many stupid doctors "practicing" out there and there are poor, unfortunate patients who place doctors next to God and believe everything they say.

I haven't been officially diagnosed with celiac and have not yet talked with a doctor about it, but have suffered from severe vertigo attacks for several years and from trying to get a diagnosis for this have come across my share of doctors who have said stupid things.

Last winter I had a bad case of influenza, fever of 102ish for several days, terrible headache, terrible body aches, terrible fatigue, chest cough, sore throat, cold symptoms, could barely get off the couch, etc. This was not a "typical cold," it was definitely worse. On day 5 I had one of my severe vertigo attacks (vertigo so bad I can't move if my life dependeds on it, lasts 4+ hours, etc.). If I can I try to ride these out at home but coupled with my flu symptoms I wanted to get to the ER asap so I could get some valium IV in me. I called 911 and they took me to the ER.

My main reason for being there was my vertigo but went over all my symptoms with the doctor and asked him if he thoguht I had the flu. No, he said, you don't have any symptoms of the flu. Huh?? I asked, I've had a fever of 102 for 5 days, a terrible cough, terrible headache, fatigue like I've never had before, etc. What symptoms of the flu don't I have? He responded, "you aren't vomiting." This same doctor was ready to discharge me half an hour later when I still wasn't able to move an inch without the vertigo increasing 10 fold. He said I was all better and there was no need to keep me there any longer.

Another stupid doctor - I was diagnosed with breast cancer 8 years ago and went to see a new oncologist. I told him I now had a swelling under my right arm (I was diagnosed with bc on the left side). He told me he would not be able to check the right side because I was referred to him for bc on the left side and that is all he was allowed to look at. stupid, stupid!! (fortunately right side turned out to be nothing).

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Another stupid doctor - I was diagnosed with breast cancer 8 years ago and went to see a new oncologist. I told him I now had a swelling under my right arm (I was diagnosed with bc on the left side). He told me he would not be able to check the right side because I was referred to him for bc on the left side and that is all he was allowed to look at. stupid, stupid!! (fortunately right side turned out to be nothing).

O M G!!! --I thought my stories were absurd, but this one calls for the ever-popular WTF???? :blink: "allowed to look at??"....what a bunch of BS.....O M G.....Sorry, Jane. (hug)

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Another stupid doctor - I was diagnosed with breast cancer 8 years ago and went to see a new oncologist. I told him I now had a swelling under my right arm (I was diagnosed with bc on the left side). He told me he would not be able to check the right side because I was referred to him for bc on the left side and that is all he was allowed to look at. stupid, stupid!! (fortunately right side turned out to be nothing).

This is so they can charge for 2 visits...

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I both love and hate reading all these. Love, because I see I'm not the only one who visits stupid doctors. And really and truly hate because it angers me so much that there are so many stupid doctors "practicing" out there and there are poor, unfortunate patients who place doctors next to God and believe everything they say.

I haven't been officially diagnosed with celiac and have not yet talked with a doctor about it, but have suffered from severe vertigo attacks for several years and from trying to get a diagnosis for this have come across my share of doctors who have said stupid things.

Last winter I had a bad case of influenza, fever of 102ish for several days, terrible headache, terrible body aches, terrible fatigue, chest cough, sore throat, cold symptoms, could barely get off the couch, etc. This was not a "typical cold," it was definitely worse. On day 5 I had one of my severe vertigo attacks (vertigo so bad I can't move if my life dependeds on it, lasts 4+ hours, etc.). If I can I try to ride these out at home but coupled with my flu symptoms I wanted to get to the ER asap so I could get some valium IV in me. I called 911 and they took me to the ER.

My main reason for being there was my vertigo but went over all my symptoms with the doctor and asked him if he thoguht I had the flu. No, he said, you don't have any symptoms of the flu. Huh?? I asked, I've had a fever of 102 for 5 days, a terrible cough, terrible headache, fatigue like I've never had before, etc. What symptoms of the flu don't I have? He responded, "you aren't vomiting." This same doctor was ready to discharge me half an hour later when I still wasn't able to move an inch without the vertigo increasing 10 fold. He said I was all better and there was no need to keep me there any longer.

Another stupid doctor - I was diagnosed with breast cancer 8 years ago and went to see a new oncologist. I told him I now had a swelling under my right arm (I was diagnosed with bc on the left side). He told me he would not be able to check the right side because I was referred to him for bc on the left side and that is all he was allowed to look at. stupid, stupid!! (fortunately right side turned out to be nothing).

Shocking! :o

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Some of these are horrible, it's ridiculous.

I think most of my bad doctor stories relate to my youngest daughter, starting when I was pregnant with her. With both my girls I had amniotic leakage and preterm labor (with the first one it was at 27 weeks so they monitored and put me on bed rest) with my youngest it was at 21 weeks the doctor sent me back to work and told me that every woman leaks alot of amniotic fluid every night. The same doctor sent me home when I was having contractions every 3 minutes when I was 28 weeks. The doctors also said that it didn't matter to the baby that I couldn't get my blood sugar under control with diet. News for them...it made a big difference, my daughter had a blood sugar reading of 31 when she was born.

When she was finally brought back to me after the doctors got her sugar stabilized she wouldn't eat, threw up everything. Her first day of life she took in only 6 oz of formula since the nurses told me that I couldn't try and breastfeed her anymore since she wouldn't latch. My favorite part is with all this they still discharged her 30 hours after she was born to free up the beds.

We kept bringing her to the doctor for weight checks because she was still having trouble eating (never could tolerate milk based formula, but they had me keep giving it to her), was anemic (hemoglobin was 7.4) despite being formula fed and not gaining weight. They never looked for a cause or anything. This was her measurements up until we went gluten free.

At birth she was 8 lbs 8 oz, 20 1/2 in long

2 weeks...8 lbs 1 oz, 20 1/2 in long

1 month...8 lbs 7 oz, 20 1/2 in long

2 months...9 lbs 3 oz, 20 1/2 in long

4 months...9 lbs 3 oz, 20 1/2 in long

6 months...9 lbs 5 oz, 20 1/2 in long

9 months...12 lbs 10 oz, 22 in long

12 months...12 lbs 10 oz, 22 in long

15 months...17 lbs 5 oz, 23 in long

At ten months old we called the doctor because she ate a chunk of her wooden crib while I was getting ready for work (a six inch wide, one inch deep chunk) and the doctor didn't even want to see her, said they thought she would be fine. All this time she also had anywhere from 5-9 watery diapers a day (it got worse after eating the crib) and first it was infant D, then it was toddler D but never was it anything to worry about. At a year old we tried to give her fat free milk mixed with formula and she had an explosion in her diaper 15 minutes later so the doctor told us to give her soy milk.

By the time she was 15 months old she was sleeping 21 hours a day and when she was up only ate a tiny bit and wouldn't play. I went looking for answers myself and came across this website so I called the doctor and asked them if Celiac was a possibility and they told me that was most likely the problem and to go gluten free right away, no testing because we had no insurance. She was so incredibly sick that we went gluten free right away and things were going fairly well with no watery diapers until one day her poop looked like coffee grounds, I took her to the hospital and they confirmed that it was intestinal blood, but they sent her home without doing anything because we had no insurance. We figured out by eliminating foods that soy causes intestinal bleeding for her and also other foods that bothered her belly.

Now she is doing well healthwise, she is just an anxious child and is afraid of alot of things.

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Oh forgot about my favorite one for my oldest daughter...whole milk caused her alot of phlegm and she would gag, but it took us awhile to figure that out. We took her to a doctor who asked if we had pets and we told him that we had a dog. He told us she was allergic to the dog and to get rid of it so I said that it was my moms dog and we lived with her so he then proceeded to tell us to move out of her house. Like it would have been that easy!

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Another stupid doctor - I was diagnosed with breast cancer 8 years ago and went to see a new oncologist. I told him I now had a swelling under my right arm (I was diagnosed with bc on the left side). He told me he would not be able to check the right side because I was referred to him for bc on the left side and that is all he was allowed to look at. stupid, stupid!! (fortunately right side turned out to be nothing).

This is so they can charge for 2 visits...

U N B E L I E V A B L E ! ! ! This makes me speechless and furious and so very sad for you. :angry::(

When I see my doctor I take a whole list with me and we go through it carefully. He always asks, "Is there anything else you'd like to know or have questions about?" He really takes his time. In a way it can be annoying because that means very long waits in the waiting room but I would far rather have that.

These stories absolutely sicken me.

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I was seeing an endocrinologist last summer who was determined to DX me with PCOS(this was before I was DX with Celiac). I just knew that's not what it was. She kept asking me if I had hair growth on my chest and I kept telling her "No" and she also said my PCP didn't know what he was doing(and I trust him over her) when he did bloodwork . So, when she examines me, she checks my belly and then listens to my heart, then (how I know she didn't believe me when I told her I didn't have chest hair) she did a quick check of my chest by pulling at my shirt and looking down at my chest! Like I didn't notice that! Guuur I was really upset with her and then when we got the bill, $200 just for us to go talk to her! I called and canceled the following appt and requested my blood work. When I went to the office to get the blood results, the receptionist asked if I wanted the reschedule the canceled appt. I said "No, I'm going to see my PCP about these results."

She gave me the look of death, like I just shot her most beloved pet. That was the last time I went there and I will not be going back.

My PCP worked with me and listened when I suggested Celiac. He didn't find anything else wrong. No PCOS, and no thyroid problems.

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Some of these are horrible, it's ridiculous.

I think most of my bad doctor stories relate to my youngest daughter, starting when I was pregnant with her. With both my girls I had amniotic leakage and preterm labor (with the first one it was at 27 weeks so they monitored and put me on bed rest) with my youngest it was at 21 weeks the doctor sent me back to work and told me that every woman leaks alot of amniotic fluid every night. The same doctor sent me home when I was having contractions every 3 minutes when I was 28 weeks. The doctors also said that it didn't matter to the baby that I couldn't get my blood sugar under control with diet. News for them...it made a big difference, my daughter had a blood sugar reading of 31 when she was born.

When she was finally brought back to me after the doctors got her sugar stabilized she wouldn't eat, threw up everything. Her first day of life she took in only 6 oz of formula since the nurses told me that I couldn't try and breastfeed her anymore since she wouldn't latch. My favorite part is with all this they still discharged her 30 hours after she was born to free up the beds.

We kept bringing her to the doctor for weight checks because she was still having trouble eating (never could tolerate milk based formula, but they had me keep giving it to her), was anemic (hemoglobin was 7.4) despite being formula fed and not gaining weight. They never looked for a cause or anything. This was her measurements up until we went gluten free.

At birth she was 8 lbs 8 oz, 20 1/2 in long

2 weeks...8 lbs 1 oz, 20 1/2 in long

1 month...8 lbs 7 oz, 20 1/2 in long

2 months...9 lbs 3 oz, 20 1/2 in long

4 months...9 lbs 3 oz, 20 1/2 in long

6 months...9 lbs 5 oz, 20 1/2 in long

9 months...12 lbs 10 oz, 22 in long

12 months...12 lbs 10 oz, 22 in long

15 months...17 lbs 5 oz, 23 in long

At ten months old we called the doctor because she ate a chunk of her wooden crib while I was getting ready for work (a six inch wide, one inch deep chunk) and the doctor didn't even want to see her, said they thought she would be fine. All this time she also had anywhere from 5-9 watery diapers a day (it got worse after eating the crib) and first it was infant D, then it was toddler D but never was it anything to worry about. At a year old we tried to give her fat free milk mixed with formula and she had an explosion in her diaper 15 minutes later so the doctor told us to give her soy milk.

By the time she was 15 months old she was sleeping 21 hours a day and when she was up only ate a tiny bit and wouldn't play. I went looking for answers myself and came across this website so I called the doctor and asked them if Celiac was a possibility and they told me that was most likely the problem and to go gluten free right away, no testing because we had no insurance. She was so incredibly sick that we went gluten free right away and things were going fairly well with no watery diapers until one day her poop looked like coffee grounds, I took her to the hospital and they confirmed that it was intestinal blood, but they sent her home without doing anything because we had no insurance. We figured out by eliminating foods that soy causes intestinal bleeding for her and also other foods that bothered her belly.

Now she is doing well healthwise, she is just an anxious child and is afraid of alot of things.

Your daughter's story breaks my heart. :( I don't understand why they didn't look for a reason why she wasn't growing. Isn't that their job...the reason why we take our babies to the Dr.s? Not doing tests because of insurance when a child is bleeding internally is insane!

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I was seeing an endocrinologist last summer who was determined to DX me with PCOS(this was before I was DX with Celiac). I just knew that's not what it was. She kept asking me if I had hair growth on my chest and I kept telling her "No" and she also said my PCP didn't know what he was doing(and I trust him over her) when he did bloodwork . So, when she examines me, she checks my belly and then listens to my heart, then (how I know she didn't believe me when I told her I didn't have chest hair) she did a quick check of my chest by pulling at my shirt and looking down at my chest! Like I didn't notice that! Guuur I was really upset with her and then when we got the bill, $200 just for us to go talk to her! I called and canceled the following appt and requested my blood work. When I went to the office to get the blood results, the receptionist asked if I wanted the reschedule the canceled appt. I said "No, I'm going to see my PCP about these results."

She gave me the look of death, like I just shot her most beloved pet. That was the last time I went there and I will not be going back.

My PCP worked with me and listened when I suggested Celiac. He didn't find anything else wrong. No PCOS, and no thyroid problems.

Errr..what if you had chest hair..but shaved it..or plucked the hairs? LOL It's kind of ridiculous when a Dr. makes up their mind about a DX then tries to manipulate the facts to fit their theory!

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Turns out I also had a couple gallstones and constant gallbladder attacks for years, but at least four doctors kept saying I was "too young for those, so we will run tests for something else". Strange that I had every symptom of gallstones but doctors just waved that idea out the door.

The "you're too young for this" comments drive me crazy. A friend of mine's 15 year old son is sick with Stage 4 Pancreatic Cancer. Usually only 60 year old men get this disease. But he still has it. So, what are the doctors going to say to him? "You can't have chemo because you're too young to get this disease." Luckily he has excellent, non-stupid doctors and is getting treatment at St. Jude Children's Hospital.

My stupid doctor story is from before I was diagnosed Celiac. I went through a period in my 20s where I passed out a lot. They couldn't figure out why exactly, so I kept getting shuffled from one specialist to another. One time I was sent to a Neurologist. He walked in the room, took one look at me and said, "You have migraines. That's why you're passing out." I told him, "I have never had a migraine in my life." He kept insisting that I had migraines. Now one of my best friends does suffer from them, so I've seen how bad they can be. I've had headaches, but never one as serious as a migraine. He still wouldn't listen to me. This went on for about 10 minutes. He gave me a prescription for migraine medicine and I went ahead and took it to prove to him that it wouldn't work. Sure enough, I passed out again about a week later. I was never so happy to pass out in my life :D

Another one, again not Celiac related but still stupid, concerns my son. When he was two, he fractured his leg. After he had his cast taken off, he kept complaining about his leg hurting. So I called his orthopedic doctor and made an appointment. They took an x-ray. After the x-ray, he was sitting in my lap while we were waiting for the doctor. Mr. Big Shot Doctor walked in the room, said, "The X-ray looks fine." and walked out. My child never left my lap. The doctor didn't ask to see him walk, ask us any questions about the pain, or lay a hand on him. :angry: We immediately went to another doc, who said his leg was still healing and she promptly send him to physical therapy. Like Irish I wrote a polite, yet very pointed letter to the doctor and never heard a word back. I was so angry. You don't mess with a mama lion's cub B)

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jane, your long suffering unexplained bouts of dizziness reminds me of a Mystery DX episode I recently saw. Look up "disembarkment syndrome" If its not ur condition I hope that you get pointed in the right direction at least. Good Luck!

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Yesterday my doctor said that even though my serologies were positive, we needed to do a biopsy to confirm. Then, if positive, we'd do another biopsy in a few months after being on a gluten-free diet. But most people don't need the 2nd biopsy because their bloodwork comes back negative.

My thoughts: So, we can't trust positive results from the bloodwork but we can trust negative results??? What???? What makes those negative results so much more reliable than the positive ones??

Then, she goes on to say that she doesn't want me going on a gluten-free diet without a positive biopsy because gluten-free diets are "extremely difficult and hard to follow".

My thoughts: So, if the biopsy comes back positive, will a gluten-free diet then be easier to follow and not so difficult?? Doubtful. She pretty much just sent all her negative energy towards me about a gluten-free diet!!! Doomed no matter what is the message I got.

I went on the internet last night and found that many people who test positive to the antibodies and have negative biopsies later develop full-blown celiac, which is probably worse than it might have been had they started a gluten-free diet when the serologies were positive.

UGH.

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Yesterday my doctor said that even though my serologies were positive, we needed to do a biopsy to confirm. Then, if positive, we'd do another biopsy in a few months after being on a gluten-free diet. But most people don't need the 2nd biopsy because their bloodwork comes back negative.

My thoughts: So, we can't trust positive results from the bloodwork but we can trust negative results??? What???? What makes those negative results so much more reliable than the positive ones??

Then, she goes on to say that she doesn't want me going on a gluten-free diet without a positive biopsy because gluten-free diets are "extremely difficult and hard to follow".

My thoughts: So, if the biopsy comes back positive, will a gluten-free diet then be easier to follow and not so difficult?? Doubtful. She pretty much just sent all her negative energy towards me about a gluten-free diet!!! Doomed no matter what is the message I got.

I went on the internet last night and found that many people who test positive to the antibodies and have negative biopsies later develop full-blown celiac, which is probably worse than it might have been had they started a gluten-free diet when the serologies were positive.

UGH.

Typical. :(

False positives aren't very likely with blood work. The endoscope is mainly to confirm..and assess the level of villi damage.

Maybe she meant the REscope wasn't usually needed after starting the diet and redoing the blood tests show that the Celiac levels have gone down(are negative)?

I'm trying to give her the benefit of doubt here. ;)

If you have positive blood work..and no damage when scoped..congratulations! They caught it early. Stay gluten-free...even if it's hard. Doh!

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My doctor situation when I found out I had Celiac.

Background: My initial doctor who requested blood tests for the Celiac got called for duty and shipped overseas. So my mom and I had to go in and see a completely new doctor who clearly had barely read my file.

Doctor, looking at my file: Do you have a problem with wheat?

Me: Yeah...

Doctor: Oh good cause you have Celiac Sprue Disease. :blink: (This is a good thing?)

Me: *facepalm* well what does that mean?

Doctor: You can't eat anything with gluten, but I'm not an expert so you should google.

Me: Okay well am I more susceptible to any allergies or diseases?

Doctor: I just said I'm not an expert, just don't eat gluten okay? If you want to know about your problem, google it. *walks out*

So rude! Luckily, I found this site and a lot of my questions were answered :)

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My doctor situation when I found out I had Celiac.

Background: My initial doctor who requested blood tests for the Celiac got called for duty and shipped overseas. So my mom and I had to go in and see a completely new doctor who clearly had barely read my file.

Doctor, looking at my file: Do you have a problem with wheat?

Me: Yeah...

Doctor: Oh good cause you have Celiac Sprue Disease. :blink: (This is a good thing?)

Me: *facepalm* well what does that mean?

Doctor: You can't eat anything with gluten, but I'm not an expert so you should google.

Me: Okay well am I more susceptible to any allergies or diseases?

Doctor: I just said I'm not an expert, just don't eat gluten okay? If you want to know about your problem, google it. *walks out*

So rude! Luckily, I found this site and a lot of my questions were answered :)

wow. That's pretty close to how I was told about my DX..except the Dr. was nice. She said "you have Celiac. Don't eat gluten. Look it up online." These Dr.s are announcing we have a disease that will change our lives forever and this is the way they deliver that news? :blink:

I'm glad we both found this site! :D

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wow. That's pretty close to how I was told about my DX..except the Dr. was nice. She said "you have Celiac. Don't eat gluten. Look it up online." These Dr.s are announcing we have a disease that will change our lives forever and this is the way they deliver that news? :blink:

I'm glad we both found this site! :D

Well, I have to chine in here -- tjhey know by now that that's what we're going to do anyway :lol: And they know they know nothing about it. So why make themselves look any more foolish???

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Well, I have to chine in here -- tjhey know by now that that's what we're going to do anyway :lol: And they know they know nothing about it. So why make themselves look any more foolish???

:D :D :D

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I have too many stupid dr stories so I will stick with the latest.

I went to the dr for woman issues. He said it was because I'm a little overweight. OK, whatever. We proceeded to discuss my diet -- no wheat, no this, no that. He then puts me on this specialized diet. I tell him it is only 1 ingredient different than what I'm on and I don't think it is going to work. He insists I go on it. OK. After a few weeks I'm not losing like he thinks I should so he starts belittling me for not following his diet. I keep trying to tell him I am following it and there is something else wrong. A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. :angry::rolleyes: I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

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I have too many stupid dr stories so I will stick with the latest.

I went to the dr for woman issues. He said it was because I'm a little overweight. OK, whatever. We proceeded to discuss my diet -- no wheat, no this, no that. He then puts me on this specialized diet. I tell him it is only 1 ingredient different than what I'm on and I don't think it is going to work. He insists I go on it. OK. After a few weeks I'm not losing like he thinks I should so he starts belittling me for not following his diet. I keep trying to tell him I am following it and there is something else wrong. A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. :angry::rolleyes: I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

:angry::o :o

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Went to the doctor for extreme fatigue, sore throat, swollen glands at base of neck. After a 2 minute exam, was prescribed antibiotics for a sinus?!? infection.

Ten days later, I went to a new doctor who immediately ordered thyroid tests and I was diagnosed with subacute thyroiditis.

I think we will go with the new doc.

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I have too many stupid dr stories so I will stick with the latest.

I went to the dr for woman issues. He said it was because I'm a little overweight. OK, whatever. We proceeded to discuss my diet -- no wheat, no this, no that. He then puts me on this specialized diet. I tell him it is only 1 ingredient different than what I'm on and I don't think it is going to work. He insists I go on it. OK. After a few weeks I'm not losing like he thinks I should so he starts belittling me for not following his diet. I keep trying to tell him I am following it and there is something else wrong. A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. :angry::rolleyes: I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

Oh geez.

How is that doc not strung up by his heels in a public forum??

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    Celiac.com 07/18/2018 - Despite many studies on immune development in children, there still isn’t much good data on how a mother’s diet during pregnancy and infancy influences a child’s immune development.  A team of researchers recently set out to assess whether changes in maternal or infant diet might influence the risk of allergies or autoimmune disease.
    The team included Vanessa Garcia-Larsen, Despo Ierodiakonou, Katharine Jarrold, Sergio Cunha,  Jennifer Chivinge, Zoe Robinson, Natalie Geoghegan, Alisha Ruparelia, Pooja Devani, Marialena Trivella, Jo Leonardi-Bee, and Robert J. Boyle.
    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
    Team members searched MEDLINE, Excerpta Medica dataBASE (EMBASE), Web of Science, Central Register of Controlled Trials (CENTRAL), and Literatura Latino Americana em Ciências da Saúde (LILACS) for observational studies conducted between January 1946 and July 2013, and interventional studies conducted through December 2017, that evaluated the relationship between diet during pregnancy, lactation, or the first year of life, and future risk of allergic or autoimmune disease. 
    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    Source:
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

    Jefferson Adams
    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    Ingredients:
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?

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    • Maybe check for dairy in the ingredients of the bread? You may be allergic to both, gluten and dairy. I have several friends/family that are allergic to both.
    • I'm also a silent celiac, had just quit working at a bagel shop before I found out about 8 years ago. My Dr. had left me a voicemail with the news while I was on vacation. My initial reaction was denial. It definitely took me a few weeks to come to terms with it and not cheat on the diet. My diligence with the diet came with having more knowledge of the consequences and the time it takes to recover from a dose of gluten. Now I would never dream of cheating. He's lucky to have someone so supportive helping him through this life changing diagnosis. 
    • You are incredibly strong and supportive for him. He needs it.  I may also add his brain may not be working well quite yet to take all this in. This illness can effect us on physical, psychological, and spiritual levels. He may be in denial for now. Also he may not feel up to processing all aspects at once sometime its a gradual process. He may have some mixed emotions about living this new lifestyle thrust upon him. Many of us formerly "loved " the enemy that ills us. hit the health problems brought up by Ennis first. remind him you love him regardless of this diagnosis and still plan to have a future as husband and wife. That did not change just modified by a new lifestyle. It is likely your husband's other issues flourished or gained a foot hold even if it can't be clearly considered causative. likely later a connection will be found inflammation based health conditions. I was misdiagnosed for 20 plus years as IBS so it often haunts me that at different junctions in life besides then I was missed when I sought help. A lot of those pieces are explained now. This is a bit manipulative of me to say, but use the kids as a will to live or to follow the lifestyle.  A bit low I  know, but I know on my hardest days after diagnosis and sleeping for what seemed like 2 years  straight through the symptoms,pain, and withdrawal etc the idea\responsibility to my children I likely passed this on to made me face another day. I still use it now on myself in my bad days. Lastly, there is self blame, anger, denial, grief you name it that rears its ugly head. be there for him best you can, but ultimately I hate to admit this it's the celiac job to accept and embrace this lifestyle and illness. It will come possibly begrudgingly and for me with sentence enhancers😊 He will. I am optimistic. He does need to heal that brain and many other things. People don't know how messed up an inflamed brain can be and cause issues\thoughts\behaviors . Keep cooking gluten-free get that inflammation out of his body for its a crucial first step. Good luck
    • I've been following a gluten free diet for a few weeks now as I suspect that I've got celiac disease and have been feeling better apart from when I eat gluten free bread it has been setting me off and I feel like crap. It hasn't been cross contaminated so I'm confused HELP! 
    • It will have the full fat profile of the seeds but yes. Whole shell will be bit more gritty but have the added fiber. A burr grinder is needed and needs to be done in pulses to prevent it from getting hot and making it into a paste. (I have tried in a blade grinder and it makes a thick paste if you run it long enough to grind it all uniformly.)

      I use the whole shell myself, I mix the gritty flour into baked goods for added fiber, and protein, it does have gritty texture....I have not tried the shelled hemp and always get the whole when ordering from Mygerbs.
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