Celiac - anyone get tested for this? — The Bump
Trouble TTC

Celiac - anyone get tested for this?

We had a big old "next steps" meeting with our RE on Friday.  The gist of it was that she recommends IVF and although I was sort of expecting it I really don't know what we're going to do with that information. 

BUT, the thing that did surprise me a lot about the appointment is that the RE wanted me to get a blood test for Celiac.  I don't really have any of the symptoms, unless you count infertility.  I did read that I'm probably at higher risk due to having hypothyroidism (because it's another autoimmune disorder).  The idea of having Celiac and needing to eat a gluten free diet kind of terrifies me more than IVF.  Anyone else have this conversation with an RE?

TTC with PCOS since July 2011.
IVF Oct/Nov 2012
Beta #1 = 77, Beta #2 = 190, Beta #3 = 1044
Cautiously optimistic.

Re: Celiac - anyone get tested for this?

  • i have celiac's, but it was diagnosed long before i was ttc.

    there is such a type as "silent celiac" meaning people don't have the classic symptoms, but the disease is still effecting their body.

    the first step is a blood test. totally easy. if that is positive, then you would need to have a small intestine biopsy because the blood test can sometimes give a false positive.

    the small intestine biopsy is done by sticking a tube down your throat while you are sedated. it was not a big deal, i went back to work the next day no problem.

    hope this helps! 

    TTC #1 since 12/2010 DH: MFI, cancer survivor Me: Resected septate uterus, lap treated mild endo, tubes open, ovulate on own, autoimmune disease 3 Failed IUI's (2/2012, 4/2012, 6/2012) 
    IVF #1 August 2012. BFP! Beta #1 56.7 Beta #2 150 One baby, one heartbeat on 9/20/12! no h/b @7w6d. dandc @8w0d
    FET #1 December 2012, BFN
    FET #2 February 2013, no embies survived thaw
    IVF #2, BFP #2, Loss #2 March 2013, Scar tissue discovered, RPL testing,
    IVF #3, BFP #3, Loss #3 (twins) September 2013
    Hostile ute, moving onto Gestational Carrier!

    GC/FET #1 of 1 5AA blast and 1 compacted blast, February 2014, BFP #4 on 3/1/2014!
    6w u/s 1 bean with h/b of 145 bpm, 8w u/s 187 bpm
    EDD 11/7/14. Please, please, please stick little one!

    Praying unceasingly for a miracle. ALL welcome!

    image










  • I haven't been tested yet but I have an appt with my primary care doctor to talk about it. When my RE dx me with PCOS in may, she said to talk to my PCD about getting a glucose tolerance test (because of high rates of insulin resistance among PCOS patients). She also told me that my PCD would likely test for other things as well, but she didn't mention anything specific. I did some research on my own and found that celiac disease and gluten intolerance are both pretty common in PCOS patients. I found one article stating that the numbers could be as high as 85%, but most of the girls here thought that sounded pretty high. I do have some celiac symptoms: weight loss/difficulty gaining weight, intermittent IBS-like symptoms, and of course infertility. I decided to try 2 weeks gluten free as an experiment and it was awesome. I didn't have a single stomachache, I had tons of energy, and my mood was great.  The next two weeks I decided to try a reverse experiment of eating lots of gluten. I lasted for 3 days. My stomachaches came back immediately and worse than before, and I was super irritable.  Then I tried a gluten minimal diet and that worked pretty well, until I had a beer at a local brewery a week and a half ago. I was so sick...like having one of those stomach bugs that attacks from all fronts. Since then I have had no gluten and no stomachaches. I have still been pretty irritable, but that could also be the clomid...

    Let me know what happens if you get tested! One thing to keep in mind is you have to be eating a normal gluten-containing diet before being tested, otherwise they can't tell how your body is reacting. I read somewhere that it had to be for at least 2 weeks before, but I'm sure your doctor can tell you.  

    TTC since June, 2011 with anovulatory PCOS, 1 blocked tube, and mild MFI
    3rd cycles clomid + Ovidrel = BFN
    4th cycles letrozole/Ovidrel + IUI = BFN
    IVF #1 = BFP! Twins due 2/5/2014
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  • ena724ena724
    500 Comments Third Anniversary Photogenic
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    I did not have this conversation with my RE but was diagnosed with a wheat intolerance as my blood test for Celiac came back negative. Living gluten free definitely isn't terrifying. There are many products out there now and to be honest, I have never felt more healthy.

    My weight has stayed the same for the last 2 years and they even have GF beer now!

    My RE is aware of my intolerance and has said that I do need to be strict with my GF diet during treatments (I always am anyways).

     



    TTC #2 since 7/14<div>mtg. with RE at end of March
    Me- 31, Stage IV Endo
    DH-38, perfect!

    <div>
    </div><div>Our Journey to DD:
    04/12~ Clomid+Trigger+ IUI #1= BFP! EDD 1/15/13...m/c at 6w6d

    07/12~Clomid+Trigger+IUI #2= BFN

    10/12~Gonal-f+Lupron+Trigger+IUI #3= Cancelled due to cysts, possible fluid in tube

    01/13~Lap/Hysteroscopy discovered severe endometriosis

    02/13-04/13~ Lupron therapy for 2 months

    05/13~ Suprise BFP...DD born 1/17/14</div><div>
    </div></div>
  • Thanks everybody for the information.  My RE did the blood test so now I'm just waiting on results.  The idea that it can be "silent" is scary and a bit strange to me, and also 85% overlap with PCOS??  Yikes.  It's confusing to me that weight loss is a Celiac symptom, as being overweight is a PCOS symptom.  And I am unfortunately a person who gains weight if I'm not actively trying to lose, so unusual weight loss is certainly not on my list.    Glad to hear that the gluten and/or wheat free is working for some of you.  I guess I'll see what happens.....
    TTC with PCOS since July 2011.
    IVF Oct/Nov 2012
    Beta #1 = 77, Beta #2 = 190, Beta #3 = 1044
    Cautiously optimistic.
  • i am pretty skeptical about that 85% statistic. I have seen it floating around the board. I have not had the chance to read any scientific study that supports it or not. My personal view is whether you have celiac's or not, if you feel better on a GF diet, then go for it!

     

    TTC #1 since 12/2010 DH: MFI, cancer survivor Me: Resected septate uterus, lap treated mild endo, tubes open, ovulate on own, autoimmune disease 3 Failed IUI's (2/2012, 4/2012, 6/2012) 
    IVF #1 August 2012. BFP! Beta #1 56.7 Beta #2 150 One baby, one heartbeat on 9/20/12! no h/b @7w6d. dandc @8w0d
    FET #1 December 2012, BFN
    FET #2 February 2013, no embies survived thaw
    IVF #2, BFP #2, Loss #2 March 2013, Scar tissue discovered, RPL testing,
    IVF #3, BFP #3, Loss #3 (twins) September 2013
    Hostile ute, moving onto Gestational Carrier!

    GC/FET #1 of 1 5AA blast and 1 compacted blast, February 2014, BFP #4 on 3/1/2014!
    6w u/s 1 bean with h/b of 145 bpm, 8w u/s 187 bpm
    EDD 11/7/14. Please, please, please stick little one!

    Praying unceasingly for a miracle. ALL welcome!

    image










  • image lincoln79:

    i am pretty skeptical about that 85% statistic. I have seen it floating around the board. I have not had the chance to read any scientific study that supports it or not. My personal view is whether you have celiac's or not, if you feel better on a GF diet, then go for it!

     

    Oh, I definitely agree with you that if you feel better on a GF diet you should go for it.  But the thing is I don't feel bad so I don't really see how going GF could make me feel better.  And I happen to love several foods that contain gluten, and I have enough of a struggle to try to make myself eat healthier and restrict calories to try to lose some weight.  So the idea of having another thing thrown on top of that is scary. 

    TTC with PCOS since July 2011.
    IVF Oct/Nov 2012
    Beta #1 = 77, Beta #2 = 190, Beta #3 = 1044
    Cautiously optimistic.
  • image lincoln79:

    i have celiac's, but it was diagnosed long before i was ttc.

    there is such a type as "silent celiac" meaning people don't have the classic symptoms, but the disease is still effecting their body.

    the first step is a blood test. totally easy. if that is positive, then you would need to have a small intestine biopsy because the blood test can sometimes give a false positive.

    the small intestine biopsy is done by sticking a tube down your throat while you are sedated. it was not a big deal, i went back to work the next day no problem.

    hope this helps! 

    This exactly.  I've been GF for a little over 3 years now, and it's really not that bad.  You get used to it. 

    Honestly, if I had a choice between having to eat GF, and having to do IVF, I would pick GF in a heartbeat.  That may just be because I'm used to it, and the thought of the money and medications required for IVF is way scarier to me than a diet change. 

    TTC #1 ♥ since 1/11 
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