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Worried About A Friend

cgilsing

By cgilsing
in Related Issues & Disorders

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cgilsing Enthusiast
cgilsing
Posted

My husband and I are friends with a couple that started trying to concieve at about the same time as we did. The man works with my husband and we all started doing things together and building a friendship last summer. She got pregnant last August and I got pregnant in September. However she lost her baby early on (about 5 weeks). Since then she has lost two more. Understandably they don't really want to see us much anymore (or at least me since I'm now 7 months pregnant) All of her babies were lost at about 5 weeks. They have been to doctors and specialists with no real answers. I know at one point in time they brought up the possibility of an auto-immune disorder and she was tested for Lupus (which was negative) I know many of you ladies have been through what Jamie is going through now. I have wondered (and mentioned to my husband) about the possibility of celiac disease. I don't know how to talk to her about it though, or if I even should. Can I ask if any of your experiences were like Jamie's (no problem concieving, but loose the baby very early)? Does anybody know if a celiac disease test would have been included in the tests she had that tested for Lupus? And does anybody have any suggestions for a gentle way for me to talk to her about celiac disease?

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Ursa Major Collaborator
Ursa Major
Posted

I've had eight miscarriages, my babies were never safe until I was about 5 months pregnant. I would conceive first try (or even without really trying) but keeping the babies was almost impossible. It's a miracle I have as many kids as I do. I ALWAYS had heavy, unexplained bleeding early on during my pregnancies, how those kids were able to hang in there I have no idea. And I would be sick the entire time, like morning sickness, but it was all day and all night, lasting for nine months sickness.

Especially after the first four it was crazy. It seems the older I got, the worse it got. Doctors couldn't figure out what was wrong. In the six years between my fourth child and the fifth, I had three miscarriages. She should have been a twin, and I lost one and would have lost her, too, if I wouldn't have stayed in bed for two months. Every time I'd get up I would start bleeding. After Susie I had three more miscarriages and finally gave up trying to have another kid close to her in age. It was heartbreaking.

My mother had five miscarriages before she finally had her first living child, and he lived only a week. She then had eight children (losing one at six months at one point in between). Now I know she had obviously celiac disease as well.

You might want to send your friend some information on celiac disease, highlighting the part about miscarriages? Or ask her about having other celiac symptoms, without mentioning celiac at first. I don't know if there is an easy way to do this. But if she has Celiac disease, gets diagnosed and goes gluten-free, she could be pretty sure that her next pregnancy would be fine. It would be awful if she wouldn't have any kids just because of a treatable condition (like my sister, who lost one at 3 months, twins at six months, of which one lived for a week, and one at eight months, who died inside of her, and gave up after that).

Guest Viola
Guest Viola
Posted

I don't have anything constructive to say ... just hugs to your friend. That's a tough one! :(

key Contributor
key
Posted

Honestly, if a woman is desperate enough to have a child and has history of miscarriages, I think they would be thankful for the news. Not sure about the test along with Lupus, but I would guess it wouldn't be. THere is information about in Italy where women are automatically tested for celiac when they are concieving or have conceived. Maybe you could share this with her.

Goodluck.

Monica

floridanative Community Regular
floridanative
Posted

Please tell your friend about Celiac and it's relationship to some miscarriages. When I heard that infertility and multiple miscarriages are sometimes linked to untreated Celiac I was shocked. The Dr. who spoke of this is a Celiac expert and she said docs just never think to test these women for Celiac. There were quite a few tearful sniffles in our group of 70....it was so sad. If your friend doesn't have Celiac, no problem but what if a simple dietary change could change her life?

mouse Enthusiast
mouse
Posted

There was an article somewhere where they said that in Italy, they test the women who have miscarried. Italy has a National Health seervice and tests every child when they start school. Probably figure that it is cheaper in the long one to find the Celiacs and put them on the gluten-free diet. Which it certainly is, going by my huge medical bills. Hopefully someone will post here where the article can be found. Then you could print it out and show it to her. Good luck in helping your friend.

Guest nini
Guest nini
Posted

I was one of those making the "tearful sniffles" at the meeting... that is how I first heard about the gluten free diet and Celiac... after I had several miscarriages and was suffering from severe depression, a friend of mine said that it sounded like Celiac. She and I were initially pg at the same time, she had her daughter, I lost my babies... BUT, if it hadn't been for my dear friend suggesting to me that I might have Celiac, I would have never discovered the link. I went on the gluten-free diet, conceived my daughter and stayed on the gluten-free diet through the first trimester, after that the OB/GYN convinced me it was all in my head and the gluten-free diet was bad for the baby. He was so wrong. I was able to carry my daughter, but because I was eating gluten, I developed severe toxemia and delivered her over a month early and we both very nearly lost our lives.

It wasn't until my daughter was 3 that I was finally dx'ed by a Dr.

If you want to be a real friend to her, TELL HER ABOUT CELIAC. Tell her she needs to be tested while she is still eating gluten, if she is one that needs test results... If not, she should go ahead and go on the diet and just see what happens. I am so grateful to my friend Mimi for telling me about Celiac and the gluten-free diet, I just wish I had trusted my initial self dx and had not let an idiot Dr. talk me out of it. My girlfriend also let me hold her newborn baby and cry for as long as I needed to. It was so very cathartic.

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cgilsing Enthusiast
cgilsing
Posted
  • Author

I'm so sorry to everyone who has lost a child because of this disease. That is something that no one should ever have to go through. Nini and Ursula I'm so so sorry for you losses. It's such a failing on the part of the medical community to let women suffer heartbreak after heartbreak because of something so preventable. I pray that the medical community opens their eyes soon and sees how many little lives are lost to this disease. I just wanted to let you all know that I have talked to my husband and made plans with our friends to go out to dinner tonight. We are going to find a way to talk to them about celiac disease. Keep them in your prayers. They are great people and will make great parents when the time comes.

  • 2 weeks later...
shayesmom Rookie
shayesmom
Posted
I'm so sorry to everyone who has lost a child because of this disease. That is something that no one should ever have to go through. Nini and Ursula I'm so so sorry for you losses. It's such a failing on the part of the medical community to let women suffer heartbreak after heartbreak because of something so preventable. I pray that the medical community opens their eyes soon and sees how many little lives are lost to this disease. I just wanted to let you all know that I have talked to my husband and made plans with our friends to go out to dinner tonight. We are going to find a way to talk to them about celiac disease. Keep them in your prayers. They are great people and will make great parents when the time comes.

I am also very sorry to hear of everyone's losses. And yet it all sounds so familiar from everything I've heard from my mom, my mil and now I am worried sick that my sister is pregnant with undiagnosed Celiac. There is a HUGE amount of denial in my immediate family and I worry for them.

Interestingly enough, my sister sent me this link (and has since forgotten about it). But it may be of some interest to your friend. Open Original Shared Link. Some may be shocked to see that Dr. Mercola puts the rate of gluten sensitivity (not necessarily Celiac) at a rate of 1 in 33 or as high as 1 in 10.

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