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Top Five Reasons To Get A New Doctor


mamabear

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burdee Enthusiast

(1) Your doctor tells you that your symptoms are IBS, which you should just learn to live with, because most women over 40 get IBS. (My mainstream doc misdianosed my celiac disease symptoms with that explanation for 20 years.)

(2) Your doc tells you that your symptoms are caused by stress.

(3) Your doc recommends you see an eating disorder therapist, when you complain of chronic constipation and cramping pain.

(4) Your doc recommends tummy massage to alleviate your 'chronic pain' cycle.

(5) Your doc recommends acupuncture to cope with the stress causing your intestinal cramps.

My naturopath, who diagnosed 4 allergies with the ELISA test, could not believe I still had gut symptoms after stool tests had diagnosed and he treated 2 previous bacteria (Klebsiella and Enterobacter Cloacae). He considered my symptoms 'stress related' and recommended tummy massage when I really had the cryptosporidium, a very pathogenic parasite. One year later he told me my gut symptoms were caused by a mental 'chronic pain' cycle and recommended therapy and accupuncture, when I really had clostridum difficile (c-diff), a life threatening bacterial infection. I've since learned to just ask for the stool test for bacteria and parasites, rather than tell him my symptoms. He may be experienced with celiac disease and food allergies, but he needs a refresher course about bacterial and parasitic infections.


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burdee Enthusiast

(1) Your doctor tells you that your symptoms are IBS, which you should just learn to live with, because most women over 40 get IBS. (My mainstream doc misdianosed my celiac disease symptoms with that explanation for 20 years.)

(2) Your doc tells you that your symptoms are caused by stress.

(3) Your doc recommends you see an eating disorder therapist, when you complain of chronic constipation and cramping pain.

(4) Your doc recommends tummy massage to alleviate your 'chronic pain' cycle.

(5) Your doc recommends acupuncture to cope with the stress causing your intestinal cramps.

My naturopath, who diagnosed 4 allergies with the ELISA test, could not believe I still had gut symptoms after stool tests had diagnosed and he treated 2 previous bacteria (Klebsiella and Enterobacter Cloacae). He considered my symptoms 'stress related' and recommended tummy massage when I really had the cryptosporidium, a very pathogenic parasite. One year later he told me my gut symptoms were caused by a mental 'chronic pain' cycle and recommended therapy and accupuncture, when I really had clostridum difficile (c-diff), a life threatening bacterial infection. I've since learned to just ask for the stool test for bacteria and parasites, rather than tell him my symptoms. He may be experienced with celiac disease and food allergies, but he needs a refresher course about bacterial and parasitic infections.

I just posted the above, but somehow someone else's signature info replaced mine. So I wanted to add another post to see whether my signature info appeared.

SUE

sunnybabi1986 Contributor

You should find a new doctor when you talk to him/her about going off of gluten for awhile because your symptoms fit, and he/she then tells you that celiac is quite rare and very unlikely, and besides, it's really impossible to eliminate gluten from your diet (laughing while he/she says this).

Grrrrr....btw, this "nice" doctor then proceeded to diagnose me with a heart condition (because my heart rate was elevated due to having stomach cramps and diarrhea for weeks), making it next to impossible to get health insurance. I am now "uninsurable" because of all the disturbing possible diagnoses she put in my file :(

Still fighting with the health insurance companies over this...

chasbari Apprentice

When your GP looks at your chart after the intake nurse's interview and asks you why you want Cialis.

When your rheumatologist, after a very positive endoscopic biopsy and a positive DX from your GI Doc for celiac says that you can't possibly have celiac, that your rheumatoid arthritis can't possibly be responding positively to a gluten free diet, that it is an impossible diet to follow anyway, that you likely really have IBS and that he has some really great drugs to give you for the IBS and RA. Oh, also that you are being a fool for refusing to take Fosamax for bone density issues and you will be a dead foolish non compliant patient if you continue to ignore all his advice. I double checked the sign on the way out and it didn't actually say "Dr. God's office" but I sure had a feeling that it should have.

When the orthopedic and neurological specialists tell you it's time to come to grips with the fact that it's all in your head.

When multiple dentists marvel at how your dental health is so atrocious and that you really are a liar about your personal dental hygiene measures. They do share with you that you are, perhaps, only the second patient they have ever seen who needed multiple root canals. One dentist was convinced I was some sort of irrational addict when I desperately needed a tooth extracted and he wanted to do a root canal on a totally occluded canal which would have been impossible. He then let me know I was no longer welcome at his practice when I got up and left ..still in excruciating pain, because he left me sitting in the chair so long the local had worn off and he wasn't going to come in and do the work. I was just trying to go someplace where they wouldn't all hear me screaming in bloody pain.

Yeah, that's about it... for now.

Fey Rookie

5) I thought my current doc was a decent doc. Then DH and I went in to ask about fertility testing (we'd been trying for over a year so we wanted to just see what our options were). He told us that we shouldn't worry yet because we're too young (I'm 23 and DH is 24). He also asked if we had intercourse regularly (um no, we're TTC by abstaining...), and why we were so worried. He also went on and on about how his wife is 37 and she is pregnant, so don't worry, we can always try later.

After being hospitalized/taken to the ER more times than I can count since my very first period, with lengthy/heavy/inexplicable periods.

First OB-GYN, when I was 10, gave me medication for post-abortion/miscarriage. Not only did it not stop the bleeding, it intensified the cramps.

Another OB-GYN, 6 years later, insisted I had been bleeding for 30 days because I had a tubal pregnancy. I told them I was the farthest thing from active - they didn't believe me, told me I had been pregnant and had to own up to my actions. Then sent me home with a request to have an ultrasound, and recommended Advil for the gut-wrenching cramps.

Third OB-GYN (all this before I was active) told me that my irregular, heavy, painful periods with clear ultrasounds and varying bloodwork (surprise, anemia!) said it was "nothing to worry about. You just might not ovulate at all. You probably won't be able to conceive without fertility treatments. But nothing to worry about."

Last August/September, I went to the ER with abdominal pain. Had a CAT Scan, ultrasound, physical exam, etc. All came back clear except for a distended appendix, so they decided to take it out. They found a ruptured ovarian cyst during the surgery - the same cyst they supposed was there, and that no tests ever seemed to see.

And a nurse story - post-op, I was given Flagyl via IV. I was already itchy from the morphine, being given the max dose of Benadryl allowed. Within minutes of getting a dose of Flagyl, I began having an anaphylatic reaction, and my BP shot up, and my pulse was at 130bpm. I called out for the nurse, who told me to stop faking it, and grumbled at stopping the drip. She said she'd call the doctor for an alternative antibiotic, but only to appease me since I obviously was not having an allergic reaction.

Heidi S. Rookie

#1 You are told that it is all stress related "in your head", he speaks to your mother about you being a bulimic?!?!?, yet you are over weight!

#2 After you end up in the hospital, you undergo emergency scopes, and are told you have IBS, acid reflux and prescribe a high fiber diet...again....

#3 They take out your gallbladder to explain your gut pain and then when it only gets worse your GI says "Maybe we need to remove a section of your intestine and see if it helps?" WHAT?!?!

Fired fired FIRED!

  • 2 weeks later...
torimuse Rookie

It wasn't a doctor, but it was a friend of mine whose mother-in-law has Celiac's. "You can't possibly have any type of food intolerance because you don't have diarrhea."

At least my doctor was smart enough to admit that, "There are constipation Celiacs out there." Even if she did diagnose IBS due to no weight loss. She also refused to let me go on a high-gluten diet for a month and have a blood test done before I move (I'm moving two states away in a month) because the doctors there might not take my results as valid.

Also, the, "But you've been eating breads your entire life without any problems," When I've specifically stated that I believe it began with a bad infection a year and a half ago due to foods that I used to love making me feel utterly sick now.


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Tina B Apprentice

If you were already on the gluten-free diet when you had the blood test you may have had a false positive. If you had not eaten any gluten you would not have had the antigliadin antibodies. If someone is going for diagnosis either by blood work or duodenal biopsy DO NOT GO GLUTEN FREE RIGHT BEFORE THE TEST.

Tina B Apprentice

If you were already on the gluten-free diet when you had the blood test you may have had a false positive. If you had not eaten any gluten you would not have had the antigliadin antibodies. If someone is going for diagnosis either by blood work or duodenal biopsy DO NOT GO GLUTEN FREE RIGHT BEFORE THE TEST.

Sorry, I meant False negative not positive. If you were gluten free when the test was done you might have had a false negative.

mommyto3 Contributor

How about this one:

You ask to get your son tested for gluten sensitivity/celiac and he says "Geez, I haven't heard anything about that since med school. I wouldn't even know what tests to order". He then proceeds to give you a blank requisition and tells you to "fill out whatever tests you need, just don't go too crazy cuz it can get expensive".

Seriously? 1) How the heck am I supposed to know what test to order? 2) Isn't it your job to figure it out and learn if you don't know?

Geesh.

CarolinaKip Community Regular

Enjoyed this thread.

I had an ER doctor to ask me if I was there for her to find out what was wrong with me or control my pain. I replied to find out what's wrong. She rolled her eyes and said That's not going to happen!

I had my PCP give up and pat me on my knee and said, well it's probably something for the GYN, he'll fix you up. If something was going to rupture, it all ready would have.

I had CC and didn't know I had done it last month. I was in so much pain when I called the gastro on Monday, the nurse said we have no appointments until Friday, you'll have to go to the ER. What?! I didn't go to the ER BTDT!

My dietition was the bigeest help!

mushroom Proficient

When your doctor's P.A. is a hopeless incompetent and/or has it in for you :unsure:

You leave a message that you need an urgent appt. (instructions from the ER) and a prescrription for potassium. You get her voice mail which states that your call will be returned in 24 hours and DO NOT call again "because this only delays the process", :ph34r: and then she not only does not call you but claims you didn't even call.

When you call scheduling and finally get an appt. and ask her to leave a written message for the P.A. about the potassium prescription. And she claims she did not get the message. :huh:

When she actually calls you just prior to discharge from the hospital (which you would not have needed to go to if you had gotten the */@#* potassium), and tells you she is calling in a prescription for overnight oxygen to a company (I have COPD and have trouble with the altitude). When you get home you call the company at 4:45 p.m. to confirm you are there to receive it, and they tell you they don't have a prescription :angry::blink: And they have to wait for the doctor to get free to get it from her. :rolleyes: And it is coming from Reno :o Fortunately the driver lives in Carson City :)

And all that is just this one week, this year. We won't go into last year....

Trouble is, I love my doc :wub:

kaki-clam Enthusiast

My doctor said.."My wife and I had a few friends over the other night, we were sitting around drinking beer, and I brought up my 'Celiac Patient' (meaning me)...next thing I knew, we had spent hours talking about how much that would suck."

Really?

  • 2 weeks later...
Coolclimates Collaborator

My dad's doctor refused to let him get tested for Celiac disease (and I have it) because he showed "no symptoms."

After 20 plus years of having that grouchy bastard doctor, this was the last straw and he finally changed doctors.

  • 3 weeks later...
ilookthetype Rookie

I just got super scared to go see my doc about getting tested. :unsure:

sb2178 Enthusiast

Don't be. I had two docs convinced that celiac was the issue despite negative tests.

And then a sensible one who did more comprehensive testing and found more nutrient deficiencies that were also issues, as well as pushing me to do an elimination diet.

I also had an incompetent GI years ago who lost blood and never sent me any test results. But hey.

mamabear Explorer

When I created this post a few years ago, it was mainly a comic relief effort to some really serious reactions from disengaged doctors. It has been gratifying to check in from time to time, because it still gives a chuckle; still gives a great vent and still educates us to keep pushing until you find a doctor who cares to be a partner in YOUR health and healing.

Kay DH Apprentice

If it is clear from your first meeting with a doctor that he is trying to prove you wrong, run, and I don

Aphreal Contributor

These are quite something and I take them to heart!

My GI told me just the other day that "Because you've had IBS so long, that's what it is" I also got the *antidepressant* speel and of course the ever popular eating more fibre. She had nothing to come back with when I told her I am already on antidepressants for PMDD.

So if your an idiot for 30 years I guess you will always be an idiot and there is no cure?

BUZZZZZ

debmidge Rising Star

Gastro's report says you have an "aversion to food."

Another gastro tells you that your weight loss is only becuase your're not eating enough food. (Heck with the fact that you've had diarrhea for 3 mos and lost 30 lbs.)

aderifield Apprentice

My favorite all time reason for changing doctors is when they look at you and say,

"You look healthy."

I recently had a cardiologist tell me (on a morning when I was especially sick), "You're better than advertised.... You advertise yourself! All you need to do is cheer up, be happy... you'll feel better!"

And, at the end of that meeting, we both walked out thinking, "Next!"

mushroom Proficient

When you tell your cardiologist you are consulting a nutritionist, and all he has to say is (playing to the peanuts back-desk gallery here): "Is she a good-looking chick?" :unsure:

Lynayah Enthusiast

When the doctor suggests that you walk around carrying a sign that says "Will work for Pampers."

Seriously though, when the doctor takes blood tests then looks only at celiac and not at gluten intolerance -- only at IgA and not at IgG.

Great thread!

VioletBlue Contributor

"Loose twenty pounds and all your problems will go away."

"Yeah, ah, the joint pain and the nausea too? Really?"

"Absolutely."

I never went back to him. He was way too young anyway, and his hands were clamy and cold and shook when he examined me.

  • 2 weeks later...
Dellers Apprentice

When your doctor says " in over 25 years I have never had a patient with negative bloods for celiac be celiac "

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    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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