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Brand New Baby + 'possible' Celiac Diagnosis...need Answers!

ErinIsabel

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ErinIsabel Rookie
ErinIsabel
Posted

I'm a 34 year old female with a 2 1/2 year old son and a 7 week old daughter who was born via c-section due to being breach. Prior to my c-section, I had never had surgery or had any medical issues (that i know of). I lead an active lifestyle and exercise and eat healthfully.

Three weeks after I had my daughter, I got what we thought was a very bad stomach flu (abdominal pain, severe diarrea, nausea). After 4-5 days, I ended up in the ER with a very painful spot in my lower right side. They thought it might be appendicitis and did a CT scan but it was negative. They told me I had very bad gastroenteritis and told me to go home and eat only white bread, white rice, apple sauce, and tea for a few days, then slowly add regular food back into my diet. I did that and slowly added bananas, white pasta, white bagels. After another day or so, I started adding a few new things - every time, my body would react as if i had food poisoning - I'd be laying on the floor of the bathroom, unable to move, etc... Back on the bland food diet for me! I felt better when on the bland diet, so that's where i stayed for what ended up being 3 weeks (on the postive side of things - if there is to be one - the most effective way to lose the baby weight ever!). Every time i tried to add any new foods, my body would reject it and i'd be back on the bathroom floor.

In the middle of all this, I had a regular follow up appointment with my OB - he was very concerned and sent me to the hospital for fluids and to see a surgeon to see if they could figure out what was going on - my OB said he was suspicious of my gallblader. The surgeon decided to do a colonoscopy and found nothing out of the ordinary. They also did an ultrasound, which showed 'very unhappy' small intestines (exact words of the guy doing my ultrasound) - everything else in the ultrasound looked normal. The surgeon said he thought i had picked up a bacterial infection while in the hospital after my c-section and gave me an antibiotic called flagyl. I took it for 5 days and my serious symptoms (my body rejecting food) seemed to get better and i was able to start eating normal food again, slowly adding it back in.

However, I was still extremely exhausted, nauseated, and just feeling crappy in general - so i saw my regular doctor about a week ago who immediately sent me to a GI specialist. After running some tests, he told me that my tissue transglutaminase was at 170 and that i should go on a gluten free diet because i was positive for celiac disease. Knowing nothing at the time, I asked if the test meant that I definitely had it and he said 'probably' but that it could be a false positive, or maybe an underlying issue (something else going on with my body) had caused the high number. But that i should go on the gluten free diet to see if i feel better and then come back and see him in a few weeks.

I'm now very confused. I'm trying to take care of my children and also desperately trying to continue to breast feed my baby - I'm still exhausted and feel nauseated and dizzy usually within 30 minutes of eating anything (all gluten free since my doctor advised me to do so). It's only been about a week since i've started the diet and i know it can take quite some time to feel better, so maybe that's the issue.

Sorry for the long back story... I guess my question is - does the 170 number for tissue transglutaminase mean i have celiac? I'm confused because when i was eating a diet very high in gluten (bagels, bread, pasta - and not much else) - I seemed to be getting better. When i added foods (for instance, i once tried an egg - definitely no gluten there) I'd spend the next few hours on the bathroom floor. I guess I just want to know if these symptoms seem to jive with celiac. As I mentioned above, I've never had any food or digestive issues in my life and this just seemed to have come on so suddenly and strongly. At this point i just need to figure this out.

thank you so much in advance for any advice. Erin

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kareng Grand Master
kareng
Posted

I'm a little confused on something. Sounds like the GI ran this test in his office while you waited? Blood work for Celiac usually takes a few days to two weeks to get back. Just want to see if you got the right tests.

You should get a copy of any blood work that was done and look at it yourself. It should have a range for normal on it. For some reason different labs use different measurement units so 100 on Lab X is negative but a 100 on Lab Z is normal. With a new baby, maybe they would email or mail it to you?

1desperateladysaved Proficient
1desperateladysaved
Posted

I just want to know that as a mother I really feel for you. Hang in there. I would concentrate on taking care of yourself and your children. Everything else may need to slide for a while. I am praying for you. If you have a friend or family member which can help you it would be good. But if you don't, just know that another mother has been there and survived.

Please get well.

Diana

ErinIsabel Rookie
ErinIsabel
Posted
  • Author

I'm a little confused on something. Sounds like the GI ran this test in his office while you waited? Blood work for Celiac usually takes a few days to two weeks to get back. Just want to see if you got the right tests.

You should get a copy of any blood work that was done and look at it yourself. It should have a range for normal on it. For some reason different labs use different measurement units so 100 on Lab X is negative but a 100 on Lab Z is normal. With a new baby, maybe they would email or mail it to you?

Hi kareng - yes, sorry I should have been more clear on that. The test came back a week or so later and my GI Dr told me that a 'normal' reading would be between 0-19 and that my number was 170.

thanks!

ErinIsabel Rookie
ErinIsabel
Posted
  • Author

I just want to know that as a mother I really feel for you. Hang in there. I would concentrate on taking care of yourself and your children. Everything else may need to slide for a while. I am praying for you. If you have a friend or family member which can help you it would be good. But if you don't, just know that another mother has been there and survived.

Please get well.

Diana

Thank you Diana. I really appreciate your note - I know we will get through this! I actually am at my parents house in Colorado for the time being (my husband and 2 year old stayed home in California) so I could focus on getting better and taking care of my infant. Hopefully I'm doing the right thing, I didn't know what else to do...

VydorScope Proficient
VydorScope
Posted

Hi kareng - yes, sorry I should have been more clear on that. The test came back a week or so later and my GI Dr told me that a 'normal' reading would be between 0-19 and that my number was 170.

thanks!

I suggest you do exactly what the GI doc says. Go gluten free and see if you get better. It is not uncommon to read stories here like yours where a person had some traumatic experience (okay getting your body cut up and a living child pulled out of it seems pretty traumatic to me! :) ) that triggered Celiac in them. Unfortunately that means there is no turning back. You will have to be gluten-free for life now.

lovegrov Collaborator
lovegrov
Posted

From what I understand, that 170 number pretty much means celiac. That's about where mine was. Going gluten-free solved it all for me.

richard

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Cara in Boston Enthusiast
Cara in Boston
Posted

I am very certain that my celiac was triggered by my second pregnancy as well. I had zero symptoms before that - never even went to the doctor except for my annual physical. After that, it seemed I was complaining to the doctor every month about some weird and unusual symptom. When they never found anything, I just assumed this is what it felt like to get old. Luckily, (I guess) my son was diagnosed with Celiac and the whole family got tested. My blood tests were very high.

Anyway, the first couple of weeks are rough - you will sometimes feel worse. But then, it gets better and after a month, you will likely feel great. Hang in there.

Be glad they caught it so quickly. Many people go years and years without answers.

Be sure to have all first degree relatives tested.

Cara

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