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Celiac awareness

Posted by on May. 31, 2013 at 11:29 AM
  • 17 Replies

May is Celiac Awareness Month - so since its May 31, I thought I should finally do my Celiac PSA. lol

Celiacs affects 1 in 133, many of them are undiagnosed.  I think only 1 in 5 Celiacs are diagnosed.  Part of the problem is that there are so many possible symptoms - and some of the symptoms are contradictory.  For example, weight loss & diahrrea can be symptoms, but so can weight gain & constipation.

One of the big symptoms of Celiacs is infertility & repeated miscarriages.  When you understand what having Celiacs does to your body - it makes a lot of sense.  If you have Celiacs & eat gluten (which is in wheat, rye & barley), it damages the villi in your intestine & makes it impossible to absorb nutrients.  If you can't absorb nutrients, how can you possibly sustain a pregnancy?

One common misconception about Celiacs is that you have it from birth. That isn't true.  You need 3 things to get Celiacs - the gene, to be eating gluten, and something that triggers it.  The triggers can be stress, a severe illness, pregnancy (to name a few).

The good thing about Celiacs is that, once you are diagnosed, you just have to eat a gluten free diet & you'll be fine.  I've had two babies since my diagnosis - both pregnancies were easy.

If you are struggling with infertility or m/c, I would strongly encourage you to get tested for Celiacs.  It starts with a simple blood test.  If that's positive, then you need a biopsy of your small intestine - but even that is a relatively simple procedure.  You are put under, but for such a short time that you can be up & about your business very quickly afterward.

Feel free to ask any questions - I know there are a few of us Celiacs in this group.

October is Celiac Awareness Month - did you know that only about 1 out of every 5 or 6 people who have Celiac Disease are diagnosed?  csaceliacs.org, celiac.com National Foundation for Celiac Awareness

Gwen (43) David (55) Augie (5.5) Alex (4)

by on May. 31, 2013 at 11:29 AM
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Replies (1-10):
GwenMB
by Gwen on May. 31, 2013 at 11:41 AM

As someone mentioned in another post, don't start eating gluten free until after you are tested.  You can't get tested for Celiacs if you aren't eating gluten.

beachlove512
by Bronze Member on May. 31, 2013 at 11:45 AM

Thank you for posting this. I was diagnosed with celiac five years ago after suffering from many different symptoms for ten years. All it took was a quick intestinal biopsy and my life changed forever. I'm now so much healthier since going gluten free. Although since having had my son, I'm now sensitive to corn/corn derivatives and have had to cut that from my diet. I wish more doctors were knowledgeable about celiac. I feel SO many more people out there suffering would get diagnosed with it. The tricky thing about it is that celiac can present itself in so many different ways in each person that it makes it less likely that person will get tested for it. I have a question for you, since you have kids, have you introduced gluten into their diet? My son is just over a year old and I'm scared of giving him gluten. I'm worried it will do damage without me knowing but at the same time I don't even know if he has celiac. DS's doctor's daughter has celiac and he says it's fine to introduce gluten, but I'm still worried. I'm unsure when to get him tested for it.

Lilypie Breastfeeding tickers
GwenMB
by Gwen on May. 31, 2013 at 11:52 AM

I've worked with a naturopath.  At the time my oldest was born, she said the research showed that they should be 2 before they started eating gluten - so that's what I did with him.  With my 2nd, I was aiming for that but big brother was eating wheat & didn't keep his snacks away from little brother.  So little brother started eating wheat around 13-14 months.  I did read that its best for them to be breastfeeding when introduced to gluten, so I feel fine about DS#2 having had gluten earlier since I breastfed him until he was 2.

I think more recent research says to intro gluten at an earlier age - like by 1.  But I'm not up on that since it hasn't been an issue for me.

They can't be tested for Celiacs until they are 2.  Both of my boys have been tested & are fine so far.  I did recently learn that they should be retested every 3 years, so my older son was recently retested since it had been 3 years.  My younger son will get retested at his 5 yr well child checkup in Nov.  (I personally wonder what's so magical about testing every 3 years & wonder if it should be more often.)

Quoting beachlove512:

Thank you for posting this. I was diagnosed with celiac five years ago after suffering from many different symptoms for ten years. All it took was a quick intestinal biopsy and my life changed forever. I'm now so much healthier since going gluten free. Although since having had my son, I'm now sensitive to corn/corn derivatives and have had to cut that from my diet. I wish more doctors were knowledgeable about celiac. I feel SO many more people out there suffering would get diagnosed with it. The tricky thing about it is that celiac can present itself in so many different ways in each person that it makes it less likely that person will get tested for it. I have a question for you, since you have kids, have you introduced gluten into their diet? My son is just over a year old and I'm scared of giving him gluten. I'm worried it will do damage without me knowing but at the same time I don't even know if he has celiac. DS's doctor's daughter has celiac and he says it's fine to introduce gluten, but I'm still worried. I'm unsure when to get him tested for it.


GwenMB
by Gwen on May. 31, 2013 at 11:55 AM

Since you are breastfeeding still, I probably would just introduce gluten to him.  Research shows that they respond better if they are breastfed while starting to eat it.  You don't have to give him a lot, though, maybe just one small serving a day or something like that - and you can make sure it's the healthiest gluten, too.  I remember my naturopath saying to start my older son on Ezekial bread.

Quoting beachlove512:

Thank you for posting this. I was diagnosed with celiac five years ago after suffering from many different symptoms for ten years. All it took was a quick intestinal biopsy and my life changed forever. I'm now so much healthier since going gluten free. Although since having had my son, I'm now sensitive to corn/corn derivatives and have had to cut that from my diet. I wish more doctors were knowledgeable about celiac. I feel SO many more people out there suffering would get diagnosed with it. The tricky thing about it is that celiac can present itself in so many different ways in each person that it makes it less likely that person will get tested for it. I have a question for you, since you have kids, have you introduced gluten into their diet? My son is just over a year old and I'm scared of giving him gluten. I'm worried it will do damage without me knowing but at the same time I don't even know if he has celiac. DS's doctor's daughter has celiac and he says it's fine to introduce gluten, but I'm still worried. I'm unsure when to get him tested for it.


GwenMB
by Gwen on May. 31, 2013 at 2:53 PM

Bump

DIYteacher5658
by on May. 31, 2013 at 3:10 PM

Great post!  My husband and my 20 month old daughter both have celiac disease.  The most frustrating thing we have experienced is people not understanding that it is an auto-immune disease and calling a figment of our imagination.  Thankfully after 7 years on the diet my husband has grown a thick skin.  We just hope that this ignorance goes away as more research is available and that our daughter will continue to have options available to her.

GwenMB
by Gwen on May. 31, 2013 at 3:12 PM

What were some of your symptoms?

Quoting beachlove512:

Thank you for posting this. I was diagnosed with celiac five years ago after suffering from many different symptoms for ten years. All it took was a quick intestinal biopsy and my life changed forever. I'm now so much healthier since going gluten free. 

I started having diahrrea a lot along with stomach cramps.  I could eat anything & not gain weight (which, for a little bit, seemed great! lol).  I started not having any energy & no appetite.  After a few months, my DH (then my DF) suggested I go see the doc because how I was acting energy & appetite wise wasn't what he was used to with me.

GwenMB
by Gwen on May. 31, 2013 at 3:14 PM

I'm sorry you get that attitude from people!  I have been so lucky - no one has ever said anything along those lines to me.

I have also been diagnosed for 7 years.  It definitely is getting easier to find gluten free food - and people who understand.

Quoting DIYteacher5658:

Great post!  My husband and my 20 month old daughter both have celiac disease.  The most frustrating thing we have experienced is people not understanding that it is an auto-immune disease and calling a figment of our imagination.  Thankfully after 7 years on the diet my husband has grown a thick skin.  We just hope that this ignorance goes away as more research is available and that our daughter will continue to have options available to her.


fleurmegs
by on May. 31, 2013 at 3:40 PM
I have had stomach issues my entire life and started having pain when I hit my 20s. I didn't get full blown sick until after my first pregnancy (which I lost).

I never got the biopsy done, due to lack of insurance at the time, so I just decided to cut it out. However, a year ago I tested positive for the celiac gene and wheat allergy. And to this day, if gluten even touches my mouth, I get severe and painful bloat, skin rashes, canker sores, my hair falls out, extreme fatigue and I get intestinal bleeding and hemorrhoids. I am pretty confident in my self diagnosis lol.

I definitely do not like gluten enough to go through those symptoms lol. I eat a clean diet, and it's made all the difference.

But I clearly messed up my body with it, so hopefully I will be able to get pregnant soon!
fleurmegs
by on May. 31, 2013 at 3:43 PM
My favorite thing people tell me when trying to get me to eat gluten is, "but it's WHOLE wheat!" Lol!

I definitely get made fun of a lot. I'm also a vegetarian and people ask me all the time, "OMG so what do you eat??"

A lot of things, people. ;)


Quoting DIYteacher5658:

Great post!  My husband and my 20 month old daughter both have celiac disease.  The most frustrating thing we have experienced is people not understanding that it is an auto-immune disease and calling a figment of our imagination.  Thankfully after 7 years on the diet my husband has grown a thick skin.  We just hope that this ignorance goes away as more research is available and that our daughter will continue to have options available to her.

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