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Anyone Been Diagnosed Whilst Pregnant?
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Hi Ladies

I've suffered from what I thought was IBS for about 7years and always jumped up and down to see a specialist with no result. However now that I am pregnant my symptoms are simply unbearable, what seems like every meal I was doubled over in agony - even throughout the night with severe abdominal pain and "toilet troubles" whether it be loose or constipation.

So after weeks of this, I was given a blood test for Coeliac which came back positive, I now await an Endoscopy (Camera into stomach) to confirm although I'm told the bloods are about 98% accurate.

Silly thing to do researching on the internet as the doctors dont seem too bothered to get me in (I had to fight for several weeks and hours on the phone to get my appt as they "are busy" even though they acknowledge im URGENT - but the good old internet tells me that with me continuing to eat gluten as the doctors have told me to do could be harmful to baby and result in low birth weight etc etc.

I'm just so worried and still in pain everyday and since I'm now 24weeks and just getting Endoscopy next Wed - I feel that I am at a loss as to how to make sure my baby is healthy!

I wondered if any other mums had been through Coeliac whilst pregnant or even closer to my situation been diagnosed whilst pregnant as most forums I am reading are already eating gluten free by the time they have fell pregnant!

Thanks in advance!

Jo

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Welcome Jo!

First - congratulations on your pregnancy.

Second - don't eat more gluten than you need to - a slice or two of glutenous bread is sufficient. I may get slammed for suggesting this, but since you've already tested positive and are pregnant - if it were me - I would remove gluten now. Yes, the endoscopy is most accurate while still ingesting gluten - so if you are able to eat a slice of toast or two for the next few days do so -maybe at night.

Also make sure you had a full celiac panel. If you are unsure request a written or electronic copy of your results from your doctor. You can post them here if you are unsure of what was/needs to be done.

Nutrient testing is also very important - you may need more supplemtation than prenatal vitamins while you are healing and justating at the same time.

Hang in there - it really is very good that you found out now and will soon be able to give up gluten to become a strong healthy Mom :)

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I was diagnosed while pregnant, only I found out I was pregnant the next day. I still started the gluten-free diet and could see a vast improvement in a matter of days.

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    • I've been eating gluten for 4 weeks now, as recommended by my doctor, to test for Celiac. Today I got 'some' of my blood test results back, although not all... I have my biopsy test scheduled for tomorrow morning, but I don't know if I should go through with it or not if the other results are not back by morning (which would show a clear positive or negative)... The results I got so far have a few alarming numbers...

      My platelets are marked as High, being 484 x10^9/L but what I found more confusing was that my ESR is a Low 5mm (with average rate being 10 - 14)... 

      My Ferritin (Serum) is 36 ng/mL which I think is low(?)

      I'm no doctor, and I know that the best thing to do is ask a doctor, but I'm quite sure that if I go for my biopsy appointment tomorrow my specialist would insist on me taking it, even if the other results are not back by then. I'm sure it's not a pleasant experience and would like to avoid going through with it unless it is necessary. 

      Also, I took my blood test after eating gluten for only 3 weeks (since that was a week ago), and if my blood tests result as negative, I'm thinking about trying to keep eating gluten for another 4 weeks and test again then... if that comes positive, I'll then want to have the biopsy test done.

      What do you make of the above numbers? Any connections with celiac? Or with something else? 
    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
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