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Newly Diagnosed - So Many Questions...

KateFassett

By KateFassett
in Related Issues & Disorders

Recommended Posts

KateFassett Newbie
KateFassett
Posted

Hello there,

I was just recently diagnosed with Celiac - the story is that my husband and I were having problems TTC and someone recommended I get tested for Celiac as I already have 2 other autoimmune diseases (Type 1 Diabetes and Hashimoto's Thyroiditis) - so I had 2 different blood tests done (I wish I knew what they were!) and both were positive for Celiac. The Gastroentrologist was going to do an endoscopy for a definitive diagnosis, but surprise, surprise - I found out I was pregnant! I've never had any symptoms associated with Celiac, so it's hard for me to figure out how sensitive I am, and how strict to be. The doc suggested going gluten-free for the pregnancy only- my vitamin levels were good, suggesting that I am not malnourished from the Celiac, but he said to do it just to be safe. I'm just so confused by how to take all this - if I don't have symptoms, does that mean I don't need to worry about it after I'm pregnant? If I consume gluten while breastfeeding, does that make baby more at-risk for developing other autoimmune diseases? (namely - Type 1 diabetes that is prominent in my family). Is there a window of time that is good to avoid gluten in infants? If I don't have symptoms, does it mean that after I have the baby, breastfeed, etc. that I could go back to gluten? I'm 10 weeks pregnant now and so far, so good :) We were trying for over a year, so it was a very welcomed surprise! I just want to keep this baby safe both in-utero and once he/she is welcomed to the world. Anyone out there have any answers or similar issues?

Thank you in advance for any information you can share - I truly appreciate it and will be very grateful!

Kate

10 weeks w/#1

11/1/07- dx w/Celiac

Type 1 Diabetic 21 years

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RiceGuy Collaborator
RiceGuy
Posted

Well, I'm sure others will be able to share personal stories and advice I don't have, but the best advice for a Celiac is to go gluten-free and stay that way ever after. Yes, it can make a world of difference for your child as well. I know I don't have to tell you that you're sharing everything you eat.

If you don't have symptoms or intestinal damage, consider yourself in the very fortunate minority. We all wish we were in that position! Many including myself didn't realize we had symptoms from gluten until going gluten-free. When stuff starts to clear up - stuff you just learned to live with like it's normal, then suddenly you gain a new prospective. I've read posts from people who's diabetes simply went away after going gluten-free. Various other disorders are known to vanish as well.

Long story short, don't underestimate what gluten can do to your body. When you're intolerant to it, gluten is a very dangerous substance.

Welcome to the board!

pugluver31902 Explorer
pugluver31902
Posted

Since celiac disease is an autoimmune disorder and not an allergy, it is very important that you are completely gluten free. I am 12 weeks pregnant and it does get hard bc you are craving things that you simply just can't have. It is the best thing for the baby, that you stay completely gluten free. I may be misunderstanding or misinterpreting what you typed, but to me, it didnt seem that your doctor was very concerened about you being on a life long gluten free diet. I also, have never had ANY celiac symptoms in my life, and even if I get "glutened" I still don't get sick. But that doesnt make me immune to all the problems celiac can cause down the road, such as cancer. Now that I am pregnant, I especially want to be gluten free so that I am around to see my child grow up.

As for the baby being gluten free, that is something you will have to decide. Celiac is a genetic disease, so your child may or may not have it. Personally, with all the scientific research linking gluten intolerances and autism, I am going to keep my baby gluten free until he has at least past the age where he/she could become autistic.

Good luck with your desicion. Just remember that when going gluten free, it also means avioding cross contamination such as not sharing a toaster and such. I was completely over whelmed when I found out I had it last year, I cannot imagine finding out while I was pregnant. Feel free to ask any questions!

PatBrown Newbie
PatBrown
Posted
Since celiac disease is an autoimmune disorder and not an allergy, it is very important that you are completely gluten free. I am 12 weeks pregnant and it does get hard bc you are craving things that you simply just can't have. It is the best thing for the baby, that you stay completely gluten free. I may be misunderstanding or misinterpreting what you typed, but to me, it didnt seem that your doctor was very concerened about you being on a life long gluten free diet. I also, have never had ANY celiac symptoms in my life, and even if I get "glutened" I still don't get sick. But that doesnt make me immune to all the problems celiac can cause down the road, such as cancer. Now that I am pregnant, I especially want to be gluten free so that I am around to see my child grow up.

As for the baby being gluten free, that is something you will have to decide. Celiac is a genetic disease, so your child may or may not have it. Personally, with all the scientific research linking gluten intolerances and autism, I am going to keep my baby gluten free until he has at least past the age where he/she could become autistic.

Good luck with your desicion. Just remember that when going gluten free, it also means avioding cross contamination such as not sharing a toaster and such. I was completely over whelmed when I found out I had it last year, I cannot imagine finding out while I was pregnant. Feel free to ask any questions!

I did read somewhere to keep a baby off of gluten for at leat seven months to help them to perhaps not have the celiacs. The gene may be there but not active. You will have to ask the doctor(one who diagnosed you) about this. Long term effect of eating gluten if you are not celiac can be harmful. You can get intestinal cancer,and your liver can fail. I had slightly elevated liver enzume levels when I was diagnosed. DSs gluten-free is a nurse and just had a homeless man die due to his liver failing. He probably had nochoice(people feed homeless people soup sandwiches and hamburgers).So sad. Good luck. It is not as hard as it seems. There are more and more cookbooks out there. If you like baked good Jules Sheperd has a great book and flour blend recipe. The pizza was great.

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      Hypothetical question about antibodies

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      Thank you so much.
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