My Doctor Is Being A Pain

[FinlandGrl]

I have Hashimotos' and was diagnosed 12 years ago. I see and Endocrinologist and have been telling her over the years of issues to no avail. I found this site and discovered that it is very possible I am Celiac. My Endo won't even listen and/or test me. She says the likely hood I am is almost nil. I have been gluten-free now since November. SOOO MANY issues have cleared up. No more seeing light flashes out of the corner of my eyes, no daily dizzy spells, no more canker sores, no more itchy rash that I've been suffering with for 16 years (GONE within 2 weeks of gluten-free), no more horrible bowel movements, gas and farting cut by 95%, no more nose bleeds, no more swollen and painful area from my belly button down (lasts for DAYS), my feet aren't always swollen now, I feel calm for the first time in my life, I can think straight where before it was like I was ADD or in a fog, not nearly as tired now.

I've been complaining for years about this. I went gluten-free in November and virtually ALL of that cleared up. When I told her that I wanted to be tested she just rolled her eyes. She says she will guarantee I am not. My boyfriend ate toast, forgot, ten minutes later kissed me good morning and I had a reaction.

Should I find another dr ? I have heard that because of the itchy rash alone I probably am celiac. My Dr says that with the internet EVERYONE is a Dr now and just throws up her hands. She's the only Endo in my whole County. And she's a pain in the butt. I want to know. Any suggestions would be appreciated.

[bartfull]

You'd have to go back to eating gluten in order to be tested. If gluten-free is working for you, I'd leave it alone. But I'm curious - does your doctor have any suggestions as to WHY your symptoms have cleared up? Can she give you a better explanation? Or does she just pretend you never had any of those symptoms in the first place?

You will find better info here than your doctor has given you, and it's free! So welcome, pull up a chair and start reading. You will find you are not alone, either in your celiac disease, or in your useless doctor.

[Takala]

One question: did this Endo doc, in the past, run a celiac blood panel on you, and it came out negative ? If so, that may be why she is being a PIA. Otherwise, refusing to test, with symptoms, is malpractice.

Second question: Do you have access to another doctor who can treat your Hashimoto's, or must you use this Endo doc ?

Even if you find another doctor, your testing can come out negative, and is now more likely to come out negative because you have been off gluten for months. You would have to restart gluten consumption again for months, not weeks, and make yourself sick, to "prove" you reacted to gluten. Yet there are many people here who went thru the re glutening and did not have successful tests, and were told by the newer doctor that they certainly were not celiacs.

That being said, if the doctor is ignoring you and your obvious, positive dietary response, and if you do not have to see them for any other issue, there is no purpose in bothering to waste time, money, health, and resources with them.

If you are still breaking out in rashes, it is possible to get the skin immediately next to the rash biopsied to see if it is DH, and that can be a positive diagnosis of celiac. Otherwise, you may be just better off trusting your observations of how you react to what you eat.

[lorah322]

Personally I would find another doctor, regardless of whether or not you get tested for celiac. Sounds like bad 'bedside' manner on her part. You trusted your instincts, went gluten free, and it worked in your favor. You know your body best, and if gluten free works for you, your doctor should be receptive to that.

Welcome to the forum, I am new here too

[MitziG]

At this point, you would have to go back to eating gluten, a lot of it, for 3-4 months to have a prayer of showing a positive test. Your endo is ill-informed in that she is unaware of the co-morbity of Hashimotos and celiac.

My advice...dx yourself and give the endo the royal kiss off. You will never convince her and sacrificing your health in an effort to do so is just wrong.

[Mateto]

Some doctors just don't want to help.

Some doctors do, but they're few and far in between. Mine wasn't helpful either.

I agree with MitziG and say diagnose yourself. Feel better without gluten? Go for it!

[dilettantesteph]

If you want to get tested, and you don't want to go back to eating gluten, you need to get tested right away. Do you have a general practitioner who could test you? Are there private testing companies in your country?

[1974girl]

In my opinion, having Hashimotos is reason enough without symptoms for a doctor to test you. My 11 yr old has Hashis and thankfully she has a pediatrician that knows her stuff. She has screened her for it twice since her diagnosis. This last time, it was positive with a postive biospy. So...I think your doctor is just not informed. They told us at our support group, that the average doctor spent 15 min. on celiacs in school. WOW. If you wanted to have the gene test, then that could answer some things for you without having to do the gluten challenge.

[MKMBeau]

Your endo doesn't have to order your blood tests (but the blood tests could convince her to advise an endoscopy). Do you have a GP? My physician was willing to order blood tests, but I asked for a referral to GI clinic. Still deciding if that was a good idea (whole different set of issues) but it did educate me that almost any type of practitioner can order the tests (not that they are the most knowledgable about interpreting them, but you could take the panel to our endo to have further testing done).

Good luck!

[FinlandGrl]

You are right, she just pretends they are not there and does a lot of eye rolling. I also heard that if you have Celiac that it can affect your Vitamin D. I have always been super strong and had horses my whole life ... I'm mid 40's and in the last few years my muscles are so weak. My friend suggested I get my Vitamin D levels tested. When I asked her to give me a lab slip on that she shot back with "Oh, so your friend is a DOCTOR?" I spent a good ten minutes telling her we should at least check and she finally gave me the lab slip and said "Good luck affording it." I really really liked my other Endo, but he moved out of the area. She's the only one in my entire county.

The reason I want to find out if I am actually Celiac is due to what happens if something happens and I find myself in the hospital .. say a car accident. If it's in my record .... won't they be super careful ? I really suffer. And now with the whole gluten free thing being the latest diet craze ... I don't want someone to not take it seriously. Also .... the difference in gluten-free foods and regular in cost is a lot. It would be nice to be able to deduct the difference off my taxes. For that I need a diagnosis. Whenever I go someplace like a deli that has gluten-free options they always ask "Are you Celiac, or is this just a diet." I would like to be able to say truthfully.

I'm so glad I finally made the connection. I will never go back on Gluten. Thanks for your information. I have read this site a lot.

[FinlandGrl]

I've never been tested. I've been telling her for years about my intestinal issues and the airy smelly diahrea stools ... so sorry for the graphics .. this feels so weird talking about this on a blog .... she never said anything.

I can go back to my second Endo ... it's a bit of a drive, but I really liked him. She took his place in my county.

I was hoping that I could test by getting the rash biopsied and skin around it. I have had that rash for well over 16 years. If I am glutened now .... the next day I will have anywhere from 2-5 canker sores in my mouth the very next morning ... AND always the rash. And of course the intestinal issues and abdominal swelling, and vertigo for days. I was MORE happy with the rash disappearing after going gluten-free than with the intestinal issues. That is THE ITCHIEST rash ever. And it looks just like the pics on the internet. And nothing but Cortizone Quick Shot liquid would even TOUCH the itching.

[FinlandGrl]

Thanks. This just feels so weird talking about all this stuff on a blog. Doesn't it ? Are you gluten-free ? I feel so much better. It's like night and day. My Mom always had all these issues and just lived with them. I just figured I had the vertigo and everything because she did and it ran in the family. Funny thing is ... the Hashimotos came from my Dads side of the family. My Mom died, so she can't be tested. No other siblings are alive either. I pretty much outlived everyone.

[FinlandGrl]

I have no trust in this woman anymore. I even went so far as to make sure with the lab that my Vitamin D test result copies will be sent to me. I really have a feeling, because of the way she acted that she will say it's fine even if it's not. It's really sad when you lose faith in your Doctor. I called my old one and set up an appointment for next month. He listens. She made me feel like a hypochondriac .... and I don't think I am. I barely even take aspirin and I try to be as healthy as I can be. The only issues I have are the Hashi and the gluten thing. And the rash ... I guess that can be an autoimmune disorder of it's own.

[FinlandGrl]

I live in California. LOL She is the only Endo in my county .... but I can drive to see my old one. I talked to my GP about it and she basically said she has to work with this woman and doesn't want to "cross her" ..... I couldn't even believe she said that. So she is a no go.

[FinlandGrl]

What is the gene test ? I haven't heard about that. I get the rash the very next morning after being glutened ... I have no problem getting it biopsied. Do you have to see a special dermatologist? I have one who gave me a skin allergy test for a nail issue. Turns out I am allergic to acetone and also acryllic ... no more nails ... and I had them for 20 years. He also said don't EVER use anything with Lidocaine or Benzocaine because those came out VERY reactive ... which makes the canker sores hard to take not being able to use that. I have always been allergic to stuff like perfumes my whole life ... so none of that was a surprise.

But I would definitely be up for eating gluten just to get the rash and have that biposied if that would do it. I'm really not wanting to go for 3-4 months. My Endo said if I keep pushing her about it she will want me eating gluten for as long as six months and good luck with the suffering. She really must have been in a bad mood. Ugh. I couldn't face that after knowing what feeling GOOD feels like. Cause now it's like I suffer worse than before I went gluten-free ... the cramps and stuff are horrible.

[~**caselynn**~]

I have no trust in this woman anymore. I even went so far as to make sure with the lab that my Vitamin D test result copies will be sent to me. I really have a feeling, because of the way she acted that she will say it's fine even if it's not. It's really sad when you lose faith in your Doctor. I called my old one and set up an appointment for next month. He listens. She made me feel like a hypochondriac .... and I don't think I am. I barely even take aspirin and I try to be as healthy as I can be. The only issues I have are the Hashi and the gluten thing. And the rash ... I guess that can be an autoimmune disorder of it's own.

Any way that you look at it you need to find a new doc. How can you see a doc you don't have faith in? That's just not possible, you'll second guess everything she says which makes the appt useless in the first place. Find another doc, and start eating gluten again. Unfortunately if you're going to be tested or want to be, you need to have it in your system to test for. Unfortunately you'll have to eat quite a bit for atleast 3 months and then be tested. Or if being gluten free works for you and your new doc agrees, then why rock the boat?? Good luck!

[GFinDC]

Sounds like you may have DH (dermatitis herpetiformis), the skin condition associated with celiac disease. They can biopsy the skin next the lesion to check it for gliaden antibodies. I think you need to have an active reaction going on for that.

A gastroenterologist is a specialist in conditions of the digestive system and would be a better choice than an endocrinologist for celiac testing. You might want to read the doctors thread to see if there are any celiac aware doctors in your area. Local support groups like the CSA (Celiac Sprue Association) may be able to recommend knowledgeable doctors also. I think there's a big celiac center in LA also. Open Original Shared Link? Yep, that's it. Take a look there too.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Easy yummy bread in minutes

[ravenwoodglass]

But I would definitely be up for eating gluten just to get the rash and have that biposied if that would do it. I'm really not wanting to go for 3-4 months. My Endo said if I keep pushing her about it she will want me eating gluten for as long as six months and good luck with the suffering. She really must have been in a bad mood. Ugh. I couldn't face that after knowing what feeling GOOD feels like. Cause now it's like I suffer worse than before I went gluten-free ... the cramps and stuff are horrible.

It sounds like your Endo already knows you have an issue with gluten. If you are already gluten free she is right that you would need to eat gluten for at least 3 months before testing. And that would be a miserable time to put it mildly. Your doctor sounds like a real B but she is right about the need for the challenge. You might just want to consider yourself diagnosed even if they won't give you the 'official' diagnosis. Your GP can test for vitamin deficiencies and as PP said you may want to see a derm to see if your rash is DH. A diagnosis of DH is a diagnosis of celiac and no further celiac testing would be needed.

[FinlandGrl]

Any way that you look at it you need to find a new doc. How can you see a doc you don't have faith in? That's just not possible, you'll second guess everything she says which makes the appt useless in the first place. Find another doc, and start eating gluten again. Unfortunately if you're going to be tested or want to be, you need to have it in your system to test for. Unfortunately you'll have to eat quite a bit for atleast 3 months and then be tested. Or if being gluten free works for you and your new doc agrees, then why rock the boat?? Good luck!

From what I have been reading I should not have to be on it very long because I get "the rash" within 24 hours of eating gluten and that can be biopsied. I hope that is correct. The way I heard it "Not every Celiac get's the rash ... but everyone with the rash is Celiac."

[~**caselynn**~]

It's worth a try, ultimately the treatment will be going gluten free. Are you willing to just stay gluten free and roll with the fact that it works rather than putting yourself through all of the testing? I remember my doc asking me things like that, and then he decided we were resting anyway, same outcome though. Eating gluten is torture for me, I'm guessing you as well, go with your gut! (pun intended! )

[squirmingitch]

I'm very sorry to tell you this but in the first place the false neg. rate on the dh biopsies is 37%. Add to that the fact that you are gluten-free & have been since Nov. Add to that the fact that you better have a derm who has LOTS of experience with taking dh biopsies or they will do it wrong IF you can convince them to do it at all --- they will tell you that you have scabies -- they always do. Okay; having said all THAT ---- YOU ALSO HAVE TO BE & HAVE BEEN EATING GLUTEN FOR THE WHOLE LONG SHEBANG to have a dh biopsy with a 37% chance of false neg. Sooooo, eating enough gluten to make the rash appear is unlikely to be enough to get the dx you want.

Now, you are in the US. I say get a medical bracelet which states you are celiac. Period. Problem solved. Stay gluten-free & enjoy life!

[~**caselynn**~]

I'm very sorry to tell you this but in the first place the false neg. rate on the dh biopsies is 37%. Add to that the fact that you are gluten-free & have been since Nov. Add to that the fact that you better have a derm who has LOTS of experience with taking dh biopsies or they will do it wrong IF you can convince them to do it at all --- they will tell you that you have scabies -- they always do. Okay; having said all THAT ---- YOU ALSO HAVE TO BE & HAVE BEEN EATING GLUTEN FOR THE WHOLE LONG SHEBANG to have a dh biopsy with a 37% chance of false neg. Sooooo, eating enough gluten to make the rash appear is unlikely to be enough to get the dx you want.

Now, you are in the US. I say get a medical bracelet which states you are celiac. Period. Problem solved. Stay gluten-free & enjoy life!

I have to agree, just be gluten free and enjoy it!!