Pregnant, Suspect Celiac, So Many Questions

[thewhybird]

Hello, I'm new and overwhelmed, and would appreciate any advice from you knowledgable folks!

 

My background in brief - I've had a sensitive stomach with on-and-off issues since I was a teen. After my daughter was born two years ago I took up running and started having bad episodes of cramps, diarrhea, feeling faint etc which mostly happened after I ran for half an hour, but would last up to three days. I then became lactose intolerant. After I stopped running (for fear of mid-race accidents!) and cut out lactose I was better but not back to normal, with frequent upset stomachs, joint and bone aches, fatigue etc. I also became depressed and anxious.

 

I'm now 34 weeks pregnant again, and things have got worse and worse this pregnancy. I never feel normal anymore. Everything hurts (much worse than first pregnancy) and my stomach is always unsettled. The only break I get from diarrhea is the occasional week long bout of constipation. I cut out gluten (plus other processed, sugary and greasy foods which always bother me) for two weeks and felt much better. I've since read that I need to be eating it for tests so started again a week ago - hey presto, cramps, fatigue and everything else is back.

 

The doctors are unwilling to do any sort of checks until I'm done being pregnant (and possibly done breastfeeding) because they say it's normal for pregnancy to disrupt digestion and for hormones to cause low mood and anxiety. I'd accept this but I'm worried because I'm concerned that if I AM coeliac, the baby isn't getting the nutrients he needs from me.

 

I'm planning on doing a home blood test in the hope that if it's positive, it will at least give me some leverage (I know I still need the doctor to confirm and I don't expect it to replace a diagnosis). But can I take it now, after my two weeks gluten free or do I have to wait? Is that enough to screw up the results?

 

How hard should I fight for testing now? I know they won't do a biopsy during pregnancy because of the sedative, but surely if the blood tests were positive I'd need to go gluten free right away for the sake of the baby, so a biopsy would be useless.

 

Any suggestions or thoughts? I've been so ill I can barely care for my toddler, I don't know how I'll cope with two children feeling like this. I'm also worried that I'm going to be in hospital barely able to make it to the bathroom (I'm having a planned section, nothing to do with this issue) with diarrhea and am terrified of the humiliation.

 

Thank you so much if you managed to read my essay.

 

[nvsmom]

It's tough being pregnant and an undiagnosed celiac. I remember having to take a nap in my car with my toddler, after grocery shopping because I could not find the energy to get the groceries, and the baby, into the house.  LOL I barely remember anything from my third pregnancy - I was too tired.

 

You should push to have the blood tests done.  There is absolutely no reason why they can't run a celiac blood test.  Yes, it is normal to have pregnancy disrupt things but most people can tell what is normal and what isn't.  Plus you are way past the time of typical tummy problems; things should be getting better, if uncomfortable, at this point in your pregnancy.

 

The blood tests for celiac disease are:

tTG IgA and tTG IgG - these are the most common tests, the Biocard home test has the tTG IgA test (if you are using them)

DGP IgG and DGP IgA - newer tests good for detecting early celiac disease

EMA IgA - very similar to the tTG IgA but is positive when damage is more advanced

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable tests

 

Try to get as many tests run as possible because some of these tests can miss up to as many as 25% of all celiacs

 

You need to be eating gluten in the 8-12 weeks prior to testing for accurate tests.  If you have resumed eating gluten for a while after your gluten-free period, you will probably be fine for testing.  The endoscopic biopsy (which can miss 1 in 5 celiacs) only requires a gluten challenge of 2-4 weeks in most cases.

 

If you can't get tested, you might want to go gluten-free and skip the testing. Your health and the health of the baby are much more important than a diagnosis.

 

And don't forget that celiac disease is a genetically linked disease - if you have it, your children may have it too.  They should be tested every 2 years or as soon as they show symptoms.  Remember that children often show symptoms before they are sick enough to have measurable auto-antibody levels.

 

Best wishes.

[thewhybird]

Thank you for your understanding response. It's reassuring just to know other people know how I feel, because I sometimes wonder if people think I'm using pregnancy as an excuse to be lazy. Luckily I have a very supportive husband.

 

I will go back and push again for blood tests. The medical system here isn't really set up for people telling doctor's what they want, so it feels tough to go in and make demands instead of just meekly listening to what the doctor says, but I'm worried that I'll harm my baby so I need to stand up for myself.

 

Part of the reason I do want to push for a dx (other than, obviously, needing to know if it's some other condition that needs treatment) is to make sure my little ones get tested regularly. Thank you for the list of tests- can they usually all be done at once?

[beth01]

If you are suspecting that you have celiac, be careful in your pregnancies.  I would try to get diagnosed right away.  I was undiagnosed through both my pregnancies and had lots of problems.  I was having severe stomach pains and sick all the time.  My first OBGYN blew me off my first pregnancy and I damn near died.  My second pregnancy I was seeing a different doctor and deemed very high risk so they watched me like a hawk.  I still didn't have an easy pregnancy and had a 3 lb 6 oz baby.  Not trying to scare you, just get tested right away.

[BlessedMommy]

Yes, get tested! 

 

If you can't convince your doctor to order them, you can order the tests yourself through a private lab and self pay. 

[nvsmom]

 

Part of the reason I do want to push for a dx (other than, obviously, needing to know if it's some other condition that needs treatment) is to make sure my little ones get tested regularly. Thank you for the list of tests- can they usually all be done at once?

The tests can be done all at once, it will just be a few vials of blood.  

 

Some labs will only run the tTG IgA and total serum IgA, and then do the EMA IgA if the tTG IgA is positive.  You may have to push a bit.

 

When you get the kids tested, be aware that they are MUCH more likely to get a false negative.  The DGP IgA and DGP IgG tend to be the best tests for kids but the others work well too.

 

Let us know how it goes.    Good luck!