Ridiculous Comments From Doctors Heard During Search For Diagnosis

[Sierra's Mommy]

Hello:

I just had to share some of the comments we have heard from our doctors over the course of the past two months, in which it was finally determined that both my daughter and I have Celiac disease. I'm not trying to ridicule our medical professionals, however I am sharing this to showcase how little is known about this disease in the general medical field.

"I don't think she has Celiac. We usually catch that when they're toddlers." (From Ped after 6.5 yr old daughter presented chronic diarrhea and stunted growth)

"I doubt she has Celiac. It doesn't just start with chronic diarrhea overnight." (From PED GI after initial consultation)

"There are a lot of other things that can cause a false positive." (From PED GI after daughter's Ttg came back positive)

"You don't want her to have Celiac. It's a terrible diet, and it's so expensive!" (Ped GI during pre-biopsy consultation)

"Well, everything looked good! Though, I guess I'll wait until after the biopsy results come back before I definitively say she doesn't have Celiac." (Ped GI after endo and sigoidoscopy)

My daughter's biopsy (and bloodwork) (and symptoms) showed she did indeed have Celiac. My husband and I then went in for testing since both of us have suffered with gastrointestinal issues over the years.

"Well, I guess you can get tested if you want to. I don't think you need to." (Ped GI when I asked if the rest of the family should be tested in light of my daughter's diagnosis.

"I doubt you have Celiac, but I guess I'll believe the biopsy." (Internal Med Dr. after consultation in which I shared my GI troubles and which we were discussing my positive Ttg and EMA results)

"I don't have an answer for that." (Internal Med Dr. after asking what other disease would cause false positive blood tests, since both of my results were positive)

"I mean, don't you think we would have stumbled upon this in your 44 years?" (Internal Med Dr. still trying to justify why he thought I didn't have Celiac.)

"You don't want to have Celiac. The diet is TERRIBLE and expensive!" (Internal Med Dr.'s parting words before he wrote the order for the Endoscopy.

Yesterday's Endoscopy confirmed the positive Ttg and EMA results. "Lining was flat and no villi were visible. Interpretation: Celiac." (GI specialist who performed Celiac)

I just can't understand why doctors aren't more educated in this disease. However, I did want to share these comments, in case you are hearing them during your journey. When it comes to Celiac, "Trust your Gut!"

[njbeachbum]

mind boggling! it still stuns me to this day how clueless some doctors have been about celiac disease through the years. just glad that it is finally being recognized...

makes me wish i was more informed about celiac disease (i really knew nothing about it) over the years since i was misdiagnosed with crohn's for 14 years or so... when i was diagnosed with small intestinal crohn's disease, the doctors were throwing around the term "gluten sensitive enteropathy".... but they tried medication for crohn's instead of putting me on a test gluten free diet for a few weeks. this was back in 1994 so the bloodwork wasn't quite "official" yet.

i'm just glad i found a doctor who figured it all out at the end of 2007!

thanks for sharing :-)

[CDFAMILY]

Dear Mom,

Congrats on being persistent! The doctor comments are priceless.

Here were mine:

Family doctor.."You are just looking for a disease....you need to go on Prozac and gain 15 pounds" she even knew I had 2 type 1 diabetic brothers!

Family doctor sent letter stating I did not have Celiac Disease.

(One month later picked up copies of tests and found she only did Gliadin IgG and IgA...AND...the Gliadin IgA was positive)

Neurologist: Went to neuro since I fired family doctor and asked to be referred to a gastro. He was reluctant but did. "Maybe you just eat too much pasta!"

Neurologist: After positive TtG, EMA and biopsy: "We have never seen a case like this!!!!!" and of course we all know the reason for this...it is because they never look or test for it!

[Gemini]

Hello:

I just had to share some of the comments we have heard from our doctors over the course of the past two months, in which it was finally determined that both my daughter and I have Celiac disease. I'm not trying to ridicule our medical professionals, however I am sharing this to showcase how little is known about this disease in the general medical field.

"I don't think she has Celiac. We usually catch that when they're toddlers." (From Ped after 6.5 yr old daughter presented chronic diarrhea and stunted growth)

"I doubt she has Celiac. It doesn't just start with chronic diarrhea overnight." (From PED GI after initial consultation)

"There are a lot of other things that can cause a false positive." (From PED GI after daughter's Ttg came back positive)

"You don't want her to have Celiac. It's a terrible diet, and it's so expensive!" (Ped GI during pre-biopsy consultation)

"Well, everything looked good! Though, I guess I'll wait until after the biopsy results come back before I definitively say she doesn't have Celiac." (Ped GI after endo and sigoidoscopy)

My daughter's biopsy (and bloodwork) (and symptoms) showed she did indeed have Celiac. My husband and I then went in for testing since both of us have suffered with gastrointestinal issues over the years.

"Well, I guess you can get tested if you want to. I don't think you need to." (Ped GI when I asked if the rest of the family should be tested in light of my daughter's diagnosis.

"I doubt you have Celiac, but I guess I'll believe the biopsy." (Internal Med Dr. after consultation in which I shared my GI troubles and which we were discussing my positive Ttg and EMA results)

"I don't have an answer for that." (Internal Med Dr. after asking what other disease would cause false positive blood tests, since both of my results were positive)

"I mean, don't you think we would have stumbled upon this in your 44 years?" (Internal Med Dr. still trying to justify why he thought I didn't have Celiac.)

"You don't want to have Celiac. The diet is TERRIBLE and expensive!" (Internal Med Dr.'s parting words before he wrote the order for the Endoscopy.

Yesterday's Endoscopy confirmed the positive Ttg and EMA results. "Lining was flat and no villi were visible. Interpretation: Celiac." (GI specialist who performed Celiac)

I just can't understand why doctors aren't more educated in this disease. However, I did want to share these comments, in case you are hearing them during your journey. When it comes to Celiac, "Trust your Gut!"

The line that got me was the idiotic remark about not wanting to have celiac disease because the diet is terrible and expensive. First off, I HIGHLY doubt that most of the medical profession even come close to eating as well as I do. Meaning healthy and a diet which satisfies any craving I might have for whatever I ate pre-dx.

Yes, it is expensive to eat healthy today and it's not limited to those with celiac disease. Fruits and veggies are pricey but it's better to pay more for food than eat a crappy diet which will, in the end, make you sick in your later years. It goes to prove that many physicians probably want people to remain ill....it's a guaranteed source of income for them.

I stopped going to doctor's 10 years before I figured it out for myself and THEN returned to them to request testing. The reason? I was told there was nothing wrong with me and perhaps I should seek counseling so I could work on my problems and resolve my stomach issues.

[Salax]

I find it ironic how many of us are told by professionals that it's all in our heads or we're mental cases. I truly believe that doctors don't want anyone to have celiac disease because they can't treat it with pills. See I think it's a pharmaceutical thing..They aren't making money off celiac disease because it's treated with diet. But IBS and the like are treated with pills! Freaking pills...*sigh*

Of course not all doctors are like this, but I know a few are..more so than we like to think about it. There are doctors who really do want to help, they are hard to find.

...steps off soap box....

[mushroom]

"You don't want her to have Celiac"

Well now, this is true. And I didn't want to have cancer or RA either. But if you have them, you have them. At that point you have no choice in the matter and you want to KNOW! What an idjit.

[darkhorse]

"You don't want her to have Celiac"

Well now, this is true. And I didn't want to have cancer or RA either. But if you have them, you have them. At that point you have no choice in the matter and you want to KNOW! What an idjit.

My PCP said that exact thing to me when I asked about Celiac. And that is exactly what I thought after he said it, too! Oh, and then he had to go look up what the tests were for Celiac because he didn't remember what they were and he only ordered 2 out of the 5(6?) tests.

[taweavmo3]

I was lucky that our pedi GI did think my daughter was Celiac right off the bat....but she also looked like the textbook case that you hear about. However, after hearing she was positive, I asked about the whole family getting tested. He said "oh no, that 's not necessary unless there are symptoms" and went on to make me feel like a crazy person for asking, lol.

I'm not so sure money is the motivating factor behind the lack of diagnosis....maybe I'm just naive about that, but I think it's mainly just gross ignorance. I had a patient one day that was in for asthma, and I was in the room while the physician was gathering info. The child had a bad allergy to wheat. But, the grandma goes on to say that they just avoid wheat bread. The doctor agrees and says that he must just be allergic to the more unprocessed version of wheat based foods. I had to leave the room, it was driving me crazy.

Before learning of Celiac, I probably would have thought something similar. However, I would expect a Pediatrician to be a little bit more informed about what a wheat allergy or Celiac really entails when it comes to what you can't eat. But I really think there is just a general lack of knowledge, and lack of interest to learn more. In all the years I've worked with peds, with so many health issues, I've come across ONE Celiac kiddo. That frightens me, and just shows the lack of diagnosing going on today!

[heathen]

First, I'm not excusing these doctors for not keeping up with the current research on Celiac Disease--especially the GI docs--but you have to realize that up until the last 10 years or so, medical students were taught that Celiac Disease was a rare GI only disorder that occurred in Irish, English, or Scottish kids with failure to thrive. But they should never have dismissed you outright without exploring all the options, including Celiac. NOW, medical students are being taught that it's much more common than we ever expected, that it manifests in many organ systems or can be completely "silent", and that it's not limited to a certain ethnic heritage. Celiac shows up in some form on every major exam that med students have to take. i promise that a paradigm shift is in the works, but it's going to take time to undo the misconceptions.

[heathen]

My PCP said that exact thing to me when I asked about Celiac. And that is exactly what I thought after he said it, too! Oh, and then he had to go look up what the tests were for Celiac because he didn't remember what they were and he only ordered 2 out of the 5(6?) tests.

Those tests are really expensive--he might have wanted to save you money by ordering the most sensitive...

[darkhorse]

Those tests are really expensive--he might have wanted to save you money by ordering the most sensitive...

No, he really just didn't know what the tests were. He also was certain I didn't have it and I may not (still in the testing phase). My GI doc was annoyed when he saw what tests my PCP ordered and he had me redo the entire thing with all 6 test and 3 others. My insurance covers it all so there was no reason to try to save money. Oh well. I harbor no ill will. I am going gluten free regardless. My PCP is an old guy and probably just didn't know any better.

[Nicholasmommy]

My son's first GI doctor said "There is no way he has Celiac, all he needs is an appitite stimulate and he will be fine."

Huh? That after positive blood work, strong genetic history, FTT, and a big old belly. Sure buddy, lets boost his appitite so he will eat more posion. Well guess what my son does have Celiac and within six weeks of taking him of gluten he grew 1 1/2 inches. What an ass, I want to know who gave that guy a medical license!

[inskababy]

Want to hear mine?

I was strongly pushing for my youngest (6 month old) to get tested for celiac disease after a hospitalization for intussesception (bowels turn inside out, common in celiac infants). The doctor disagreed and thought he had valvolus instead and wanted to do an upper GI. This would require him to drink a barium suspension. Barium suspended in GLUTEN. When I expressed concern about that, she answered...wait for it...

"Well, we DO have resuscitation equipment if it causes a problem."

Let's all say it together...what the F....???

[Takala]

What a bunch of winners you've found there ! This is HMO style medicine at its finest ! You don't want a disease you can cure by eating anything but one grain group. Positive test results don't mean anything when they correlate with symptoms, and it certainly would not have been passed thru inheritance !

been there, done that, really need to design my own tee shirt "gluten free since zero three and you can't make me regret it"

[irish daveyboy]

The most ridiculous comment I ever heard was

.

You couldn't possibly be a Celiac, you don't LOOK LIKE A CELIAC,

What does a celiac look like ??

.

Now they test for Celiac Disease by the look in a doctors eyes (very Scientific)

.

One wonders if the new Celiac Home Test is a MIRROR

.

Best Regards,

David

[leadmeastray88]

When my tTG, Candida and parasite testing all came back negative, the first thing that came out of my GI's mouth was,

"How's your family situation?

Do you fight with your family?

Does your boyfriend treat you well? Are you sure?"

And on top of all of that he refused to give me a scope because "I had already been though too much".

After I gained back all of my weight and stopped having my bathroom issues and other symptoms, my GP said "Hmm, looks like you were right all along"...

[debmidge]

The most stupidest Doctor comments made to my husband was when we had the best health

insurance - i.e., we paid upfront and were reimbursed minus our $1000 per year deductible back in the 1970's and 1980's. My husband was finally diagnosed correctly by an HMO doctor who was

trained in a foreign country.

[CDFAMILY]

debmidge,

Not to get off the topic but when I read your husbands problems, I just wanted to make sure your doctors are covering all bases.

Developed neuropathy in 2005 Now has lymphadema 2006

Has your husband been tested for Vitamin deficienies lately? He needs to be tested every 4 months in my opinion to see what levels are going up and down. I was dx in 2005 and still have trouble absorbing, so when I get lax sometimes, I am shocked to see my levels drop so quickly. Your husband sounds like me, so I would find a doctor who will check all vitamins, minerals, look for candida etc, and give you the right doses to get rid of the lymphedema.

My daughter and I both had lymphedema. The gluten-free diet helped but we also started taking mega Vitamin D3 along with other vitamins, probiotics and omegas. I am amazed at how much thinner my ankles are. I also had major trouble with blood pressure and I really feel only Vitamin D3 has helped this...and I am a thin person so the BP was not caused by weight.

I had and have a lot of neuropathy. It returns when I forget or just get lax with my B12 and folic acid vitamins and I also need the Vitamin D3 to keep it all away.

I take 5,000 mcg of B12 sublingal methylcabolamin with folic acid a couple times a week.

I take 6,000-8,000 /vitamin D3 Carlson everyday. I also take zinc, vitamin C, a probiotic, some omega 3, B 50 complex every other day, and sometimes a multi to get whatever else I might be missing. It seems to be working most of the time and find when I get lax is when symptoms reappear. This drives me nuts because I keep thinking I should be absorbing naturally by now especially since I eat a very healthy natural diet and don't include all the gluten-free substitute junk food.

I am not a doctor or nurse so this is just my opinion but I really think we are getting poor care when doctors ignore the most important part of our new diet which is testing for other intolerances and continuous vitamin and mineral deficiencies.

[CDFAMILY]

Deb,

Also, doctors don't tell you this, but I always stop my vitamins for a few days before getting labs done. I personally feel it makes a difference in showing what you are actually absorbing. With B12, you almost have to stop for a month to show actual absoption, but you can ask for the MMA and Homocysteine test and look at you MCV and MCH lab work. A high MMA indicates a B12 deficiency and/or Folic Acic deficiency although for me I had very low B12 with a very low MMA which is unusual. I always had a high or very high normal MCV so that is what I go with when seeing if I am deficient in B12 and it is usually right.

[JBaby]

Hello:

I just had to share some of the comments we have heard from our doctors over the course of the past two months, in which it was finally determined that both my daughter and I have Celiac disease. I'm not trying to ridicule our medical professionals, however I am sharing this to showcase how little is known about this disease in the general medical field.

"I don't think she has Celiac. We usually catch that when they're toddlers." (From Ped after 6.5 yr old daughter presented chronic diarrhea and stunted growth)

"I doubt she has Celiac. It doesn't just start with chronic diarrhea overnight." (From PED GI after initial consultation)

"There are a lot of other things that can cause a false positive." (From PED GI after daughter's Ttg came back positive)

"You don't want her to have Celiac. It's a terrible diet, and it's so expensive!" (Ped GI during pre-biopsy consultation)

"Well, everything looked good! Though, I guess I'll wait until after the biopsy results come back before I definitively say she doesn't have Celiac." (Ped GI after endo and sigoidoscopy)

My daughter's biopsy (and bloodwork) (and symptoms) showed she did indeed have Celiac. My husband and I then went in for testing since both of us have suffered with gastrointestinal issues over the years.

"Well, I guess you can get tested if you want to. I don't think you need to." (Ped GI when I asked if the rest of the family should be tested in light of my daughter's diagnosis.

"I doubt you have Celiac, but I guess I'll believe the biopsy." (Internal Med Dr. after consultation in which I shared my GI troubles and which we were discussing my positive Ttg and EMA results)

"I don't have an answer for that." (Internal Med Dr. after asking what other disease would cause false positive blood tests, since both of my results were positive)

"I mean, don't you think we would have stumbled upon this in your 44 years?" (Internal Med Dr. still trying to justify why he thought I didn't have Celiac.)

"You don't want to have Celiac. The diet is TERRIBLE and expensive!" (Internal Med Dr.'s parting words before he wrote the order for the Endoscopy.

Yesterday's Endoscopy confirmed the positive Ttg and EMA results. "Lining was flat and no villi were visible. Interpretation: Celiac." (GI specialist who performed Celiac)

I just can't understand why doctors aren't more educated in this disease. However, I did want to share these comments, in case you are hearing them during your journey. When it comes to Celiac, "Trust your Gut!"

My personal favorite from my doctor after 2 years of every dx and suggestion. "You sure your not pregnant and in denial about it?" I never went back to her.

[Sierra's Mommy]

Okay, this one takes the prize! So, in following up to see if I can get a bone density scan done (still looking for a new md, however just trying to keep navigating through this journey in the interim), the nurse read the doctor's instructions to me over the phone. "Received biopsy which confirmed Celiac. She may want to speak with nutritionist, since there are several levels of this disease, and she'll need to find out how strict she needs to be with her diet." Ha! Apparently, there is the "little bit of gluten is okay" level, and the "medium sized portion of gluten" level is okay, and the "heck, you can eat it every third day" level of Celiac! OMG, I can't believe he wouldn't at least "brush up on this disease" and at least google Celiac, since his patient just was diagnosed!

Definitely time to switch MD's!