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34 Weeks And "mildly Positive"
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*hanging my head in shame* I am 34 weeks today and I have not been 100% gluten free. My baby girl seems fine. She is very active and everything reported normal on my 19 week ultrasound and my prenatal bloodwork (didn't show I was anemic) I was diagnosed from my bloodwork as being mildly positive(whatever that means) two days before I found out I was pregnant.

I go for a couple weeks going gluten free(could possibly be cross contamination in there but I'm not really sensitive so I don't know for sure) and then I cheat. I read all the time on this subject but I guess wanted to get some input from other Celiacs.

Do I have reason to be concerned that my baby girl will be born with problems? I am a nervous wreck about this and I am so scared that my lack of self control on eating gluten could have harmed my first baby...I am so frustrated with myself that my constant concern for the well-being of my daughter has not completely kept me from being totally gluten free:(

Thank you for your time.

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There are plenty of undiagnosed celiacs who had perfectly healthy children. You'll do more harm driving yourself crazy worrying! Your baby is now in the "mad weight gain" stage so stop eating gluten so you're absorbing food well and passing her as much nutrition as possible. :)

You do need to get your diet under control for you own health as well as your baby. "Mildly positive" is still celiac and you MUST stop eating gluten, 100%. You cannot heal eating gluten occasionally. There is a risk of developing more autoimmunity like Hashimoto's thyroid disease, neurological damage (my mom has that), and a couple kinds of cancers if you continue to eat gluten. It's VERY VERY VERY important that you stop cheating on the diet.

Turn over a new leaf today and start the diet strictly so that you are in great health to care for that beautiful baby.

When do you lose willpower? Are there particular foods that you could get gluten-free so that when you have the urge to have cookies or donuts you can eat gluten-free ones? Gluten is a little addictive so you will have to go "cold turkey" and put up with cravings for a bit but you can do it. :)

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if you don't stop, and ANYTHING is wrong, you will always wonder, yes?

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I haven't been technically diagnosed yet, but my bloodwork came back high and positive...just haven't been to the doc yet to confirm. However, this is my fourth pregnancy, and I have a feeling I was celiac before. All my kids are very healthy, with the exception of my son who is going through the testing for celiac now. I agree it is very very important you don't "cheat" but also understand that there are parents out there doing much worse things than eating gluten here and there and the babies are in great shape!! Don't stress yourself....eat right from this point on...and just stay positive, I'm sure you're baby is fine :)

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Thank you so much for the responses. I have been doing much better! My concern right now is when I start breast feeding and the risk of accidental ingestion by cross contamination....Sarah, did you breast feed all your children?

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No. I tried with my oldest until 2 weeks when he became jaundice. I don't produce enough. But none of them were on "regular" formula. They all required a different version... soy, sensitive, etc.

Although, from what I understand if your diet is gluten free, you should be fine breastfeeding without risk to baby.

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I'm expecting #6 but have only recently been diagnosed but have been celiac for years. I had never heard of gluten with other 5 pregnancies. They all went well and they all nursed. It's difficult to learn how to nurse-you need support from others who have done it. And you need lots of rest and relaxation. And you don't need someone telling you that you can't. Talk to someone who really knows their stuff and supports breastfeeding like a midwife and they can answer all your questions. Contact La Leche League or some kind of breast feeding support group and counselors. One thing that helped me was knowing that the first few days may be hard and baby may not eat much but he'll be ok. Drink lots of water too! And eat gluten-free to the best of your ability!

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I realize you've had your baby already, but I wanted to respond in case anyone else reads this looking for reassurance :)

I got my first + blood test for Celiac when I was around 30 weeks pregnant with my 3rd child. I am pretty sure that was the only pregnancy I went through with undiagnosed celiac disease. I did not go gluten-free during my pregnancy. I tried to initially, but I was dealing with a tremendous amount of stress from my oldest son's hospitalization, my husband's crazy working hours, and moving to a new home, that I just could not put any effort into a new diet (and I didn't even know if I REALLY had celiac disease). I had my son 2 days before his due date and he weighed 9 lb 3 oz (and I am a small girl!). He obviously did not suffer from my celiac disease! I feel incredibly blessed! I also had not tested anemic.

It wasn't until my son was 13 months old that I had the endoscopy and it was confirmed that i have celiac disease. I breastfed him the whole time and still do (he is almost 14 months) nurse him 3 times a day. No problems with my milk supply and he has grown beautifully :) I will warn you that i craved carbs like crazy those first few months of breastfeeding, so if you really think you could have celiac disease stock up on some good gluten-free carby snacky options for the starving nursing mom stage :)

Oh and one last thing.. if you want to get an endoscopy while breastfeeding, they can use propofal to sedate you, which leaves your system sooner than the sedative they typically use :)

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My children are older. I believe that I was an undiagnosed celiac my entire life. All my pregnancies went well and I breast fed for one year with each child. They were wonderfully healthy, happy babies.

While I believe you have not harmed to your child I do hope you will give up gluten completely - you need to be healthy and strong to be the Mom you want to be now and in the future.

Find gluten free alternatives to whatever you are cheating with. I don't suggest eating a bunch of processed food - but far better to indulge in gluten-free treats than gluten filled ones.

Treat yourself well, stock up on something yummy and rest as much as you can!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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