Pregnant Celiac and so frustrated! Major Vent! (LONG)

stormchasersbride

Hi Ladies,

I lurk here everyday, but never comment because I just don't feel like I have anything to add. I just need to vent though and I don't know where else to do it.

I am 20w pregnant with my first little one. I was diagnosed Celiac last August and have been Gluten Free since.

When I got pregnant, my regular OB said she was not concerned with my Celiac. I decided to trust her but at 15w I asked for her to check my vitamin levels. She fought me tooth and nail telling me I was being overly cautious and worrying too much. In the end she ordered the tests.

A week later after calling for 3 days, I got a nurse call back telling me my B12 was extremely low (76). My Vitamin D was 31 (normal is 30-100). I asked the nurse what we were going to do about the B12 in particular. She said she would speak to OB and let me know.

My OB called me back that evening and told me I needed to "handle" the B12 situation with another Dr because she doesn't deal with that. I agreed and asked for a referral to a high risk OB because I didn't feel she could handle balancing the Celiac with the pregnancy. She again told me I was overreacting but did agree.

I called my PCP who recommended I take B12 injections every other day for 2 weeks then once monthly. She got me in the next day to start the regimen.

A few days later I saw the MFM for a consult and she agreed with the B12 regimen and prescribed 2000mg of Vitamin D daily and 10,000mg once a week. She sent in a RX to the pharmacy with those instructions. She also ordered labs for a week and a half later to recheck levels.

I went in took those labs and was told I would get results in 3 days at most. After 1 week I emailed MFM (her preferred way of contact) asking for results. She wrote back on a Friday saying she wasn't in office but would let me know Monday. I told her no problem.

That weekend she emailed me asking if I was willing to come in Monday so she could take some pictures for her side business (not associated with the practice). I agreed. I went in Monday, got a freebie Ultrasound while having pictures taken for her website.

I asked her about my lab results and she said it was a crazy morning and asked if she could email me that afternoon. Again I agreed.

When I went to bed Monday night I still did not have lab results. I called and emailed on Tuesday am. No response! This morning I again emailed and called and on the telephone was a little more firm.

Just received an email (Thursday at noonish) from her with new #'s. Now B12 is HIGH as is Vitamin D. She asked me how much Vitamin D I was taking. I am annoyed with this question because she is the prescribing Doctor, shouldn't she know what she prescribed?

She also made a comment about me wanting information too quickly. I am really frustrated by that comment because I was very calm during the wait but when promised results I expect them. Am I out of line in that respect?

She also told me the pictures did not come out and seemed annoyed with that, which I had zero control over. It just seems as though because her pictures did not come out she didn't feel the need to fill me in on my lab results. She asked that I not email her any further and just deal with the office.

I am just at my end point. All I want is a healthy pregnancy and a healthy baby.

Am I out of line, being unreasonable? Any advice?

Thanks for getting through this novel! 

heyitsme

OK I'm getting lost by the whole picture thing. is your MFM a photographer on the side or something??

Anyway, I can totally understand the anxiety that comes with being pregnant and having a limited diet. Heck, I wish my only restriction was gluten when pregnant, but mine was wheat, eggs, milk, soy, peanuts, tree nuts, shellfish, seafood, and some other things! I think you're doing well and being proactive keeping up on your vitamin levels, but I wouldn't sweat demanding the answers immediately. While it's good to keep them in check, they fluctuate from day to day so even your Vit levels on the day of your bloodwork might be different than they are today, you know? I'd see if you could get a referral to a registered dietician who could help make sure you're getting all the necessary vitamins in your diet despite the restrictions you're dealing with. It's very helpful.

stormchasersbride

Hi,

Sorry MFM is also a motivational/ live coach kinda thing also.... She wanted a few pictures of her "day job" to put on her site... maybe to give her more credibility? Not sure...I was purely in the picture so she had a patient to be talking with and showing an ultrasound.

As for the food giving me vitamins, with Celiac that is a major issue. My intestines are so damaged from 30 years of misdiagnosis that the food with vitamins isn't absorbed correctly nor are pill form vitamins. 

Do you really think that over 2 weeks waiting on lab results is me being impatient? I ask this with 100% sincerity.  I understood a week but 2 weeks seems really long to me. Maybe I am demanding? I don't know....

Thanks for your feedback. 

DandelionMom

It sounds like your doctor isn't a good fit for you. And that's okay. It just means you need to find another doctor. 

Start asking around. Find out who other people recommend. 

Personally, I think it is fine to be demanding when it comes to your health and your baby's health. As long as you're polite about it. 

I wasn't diagnosed with celiac disease until I was 30 so I understand what you're going through.  If it helps to hear it, I had 3 babies even though I wasn't yet diagnosed. 

magdusia

- first of all, switch your OB ASAP!  When things are not okay, the results should be given to you asap. Not a week or more later. She is your doctor and needs to be on top of things that might harm you or your little one. CHANGE YOUR OB!!!!  And i would be livid with the fact that she's annoyed that you  expect the results too early.  My response would be "you need to start providing them sooner!"

- You should get a referral to a nutritionist that can help you with a balanced diet (i had one also, but due to GD, not celiac).

- Were you taking a prenatal vitamin before?  Your OB should have told you to take them as soon as you found out you are pregnant.

- you need to stop agreeing and start demanding results.

- she is giving you more stress than needed. switch your ob please!  this will not get better and i would never want someone like this to deliver my baby.. what if something goes wrong? she sounds like a person that would cover up an issue instead of trying to help.

- if she asks you for photos again, say no, tell her that you need to be more focused on your pregnancy and you need her to do the same.

- why did she sent you to an MFM and not a nutritionist? holly crap -i'm so annoyed with your doctor!

- day job? she's obviously not focused on her MAIN job as an OB.. switch switch switch.

have you researched a healthy celiac pregnancy diet?

i would want results 3 days later. And would call day by day by day until i get them.  she would hate me as a patient.   You should NOT have to wait two weeks.

julandjo

I too had 2 babies before I was finally diagnosed w/Celiac at age 31.  BUT, my pregnancies were ROUGH.  What I've discovered since my diagnosis is that doctors have no freaking clue about Celiac.  First I was told (by my GI doctor!) that there was no way I could have CD, so he refused to test me!  I demanded the test, and imagine his shock when they discovered the devastation in my small intestine!  Grrrrr....  Anyway when I requested being tested for nutrient deficiencies, he said there was no value in testing for that; I was not underweight so obviously, in his mind, I was fine.  So I fired him and found another doctor who specializes in Celiac.  She did extensive bloodwork and discovered a host of huge deficiencies and started a supplement regimen for me, got me tested for osteoporosis/osteopenia, etc.  But my issues went beyond her level of care so she referred me to an Intestinal Rehab Program.  They ran *additional* bloodwork and discovered even more deficiencies.  And I'm still fighting to get better.

My point is that it took 18 months and 3 "specialists" (ha! I had to do all the advocating myself!) to get all these deficiencies figured out.  Your doctors clearly do not feel any urgency with your issues; their line of work is focused on catching the classic OB issues.  If your bloodwork had showed pre-eclampsia they would have notified you immediately, but a vitamin deficiency probably doesn't even blink on their radar.  But you and I know it *is* a big deal.  Please find a local doctor who specializes in Celiac and get an appointment asap.

stormchasersbride

Thanks Ladies!

I spoke with my PCP today who is going to talk to some other Dr's and see about an OB that has worked with Celiac patients. She also gave me a referral to a Registered Dietitian who specializes in Celiac. 

I really appreciate all the thoughts on the subject. Thanks!  

g_belle

Your doctors sound dreadful.  I"m glad you are getting referrals for doctors that may be a better fit.  Could your GI help with an OB referral? 

heyitsme

My mistake, I misread your timeline and didn't realize it had been 2 weeks.