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tiffjake

Please Help, My Sister Is Pregnant And Won't Get Tested For celiac disease

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I have celiac disease, and my paternal grandmother had it. My father has all of the symptoms, and says that he talked to his doctor about it, but he won't change his diet, because he "doesn't care". Now that attitude is rubbing off on my sister. She is 6 months pregnant, and has lost 17 pounds (not gained!). She won't get tested. She says that she doesn't get diarrhea, so she doesn't have "my stomach problems". I have begged her, and offered to pay for the dr's visit. It doesn't help that on her first visit I begged her to just bring it up to her doc, and she said that he told her "oh, don't worry about that" so that is her attitude now. She is smart, but lazy. Does anyone have an article about pregnancy and celiac, or anything I could send her or tell her to maybe get her to re-think getting tested?? I love her so much and I am so worried about her...


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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Isn't the Dr concerned that she lost weight and that much weight while pregnant? If nothing better, stop pushing the celiac angle and pursue the weight loss. Ask her to find a reason for why she lost the weight while pregnant. She has lost probably the amount she should have gained by now. Ask her to have the sonograms done now to check that the baby is growing adequatley.

I wish I had an article for you. Pregnancy can be really hard as it is. But hers sounds alarming. Probably celiacs, but you know she wont listen at this point. Prayers for baby.

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"But then, in all honesty, if scientists don't play god, who will?"

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My sources are unreliable, but their information is fascinating.

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Isn't the Dr concerned that she lost weight and that much weight while pregnant? If nothing better, stop pushing the celiac angle and pursue the weight loss. Ask her to find a reason for why she lost the weight while pregnant. She has lost probably the amount she should have gained by now. Ask her to have the sonograms done now to check that the baby is growing adequatley.

I wish I had an article for you. Pregnancy can be really hard as it is. But hers sounds alarming. Probably celiacs, but you know she wont listen at this point. Prayers for baby.

She actually said the the doctor told her today that he was PROUD of her for not gaining weight, because so many women gain so much weight that they go into gest. diabetis. So no, it doesn't sound like her doc is worried, can you believe that?

She insists that her weightloss is due to her "not being hungry", but while we were on the phone she went through a drive through and ordered a "number 2 with a coke" so I know she is eating burgers and fries and stuff.

I just don't know what to do. Ug.

I will email her those article links, Thanks Jestgar.


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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I went through both my pregnancys with Undx celiac....and my last pregnancy was scary, I almost lost my baby.

At 28 weeks I was put on bedrest b/c the baby was lying low on my cervix and I was in alot of pain, the baby had also stopped growing (later I found out this was b/c of the Celiac), I could not gain weight and I sure tried. I had numerous ultrasounds and the baby seemed fine. at 34 weeks I was refered to a OB and she said that if the baby did not grow within two weeks that she would deliver the baby (at 36 wks). At that point the baby was maybe 4 lbs if that. I went down for my appt. I ended up having highblood pressure and within 2 hours of my OB appt I was in the hospital and was induced.....scariest day of my life, the baby was not thriving inside and if left any longer could be very serious. Anyways, my son was born weighting 4 lbs 3.5 oz, he had breathing problems and was immediately placed in a incubator. I had NEVER seen a baby that small before, broke my heart in pieces. I was able to stay at the hospital with him for 3 days (he was in the Special Care Nursery) and I had to leave him there for 2 weeks....and I lived 1 hour away from the hospital and had to commute to feed him and be with him. I had a 2.5 year old at home and that is another reason I went home at night. You dont (maybe some do) how hard it was to leave my son at he hospital, he was in good hands but it was so emotional...I find it hard to write and remember how it felt. I dont wish that upon anyone.

My son is now 13 months old, he is walking and climbing and doing everything that a child his age should....he is a chubby little boy and he is the love of my life, not that I dont love my daughter the same but I went through so much with him that he melts my heart.

My daughter did the same thing actually, she stopped growing at 36 weeks but she was big enough to be born without trouble.

PLease tell your sister what can happen. Things may be good now but she still has 4 months to go, and she needs to gain weight or that baby is going to suffer and maybe have other health problems. but she could also have a healthy baby... I hope that my experience will help. Good luck.


1 negative Bloodtest.

2 positive Bloodtests.(years later)

Positive Biopsy 08/13/07

Gluten Free since 08/23/07

Jess (31)

Daughter (03/23/04) Negative bloodwork (10/22/07)

Son (09/14/06) Negative bloodwork (10/22/07)

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I believe my sister has undiagnosed celiac disease (she is my only sister, we have six brothers). She had the blood test, but they told her it was negative, and she refuses to have any further testing or try the diet.

She doesn't have any children. She had one miscarriage at three months, then she had twins, but one died inside of her and the other was born prematurely as a result. That baby was poisoned by his dead sister and only lived for a week, and my sister almost died, too. Last she had a baby die inside of her at eight months. That poor baby starved to death.

I had eight miscarriages, and it was touch and go for the first five months with the other five. Of course, I didn't know anything about celiac disease then.

My sister loves children, and it broke her heart not to have any. After that last baby died, she had her tubes tied, because her doctor told her that somehow her body was unable to nourish a baby. He failed to understand that her body was also unable to nourish her properly, and that that was the cause.

Tell your sister that the baby isn't getting enough nutrition if she isn't gaining weight, and she might end up with a dead baby if she doesn't eliminate gluten. Her doctor is an absolute idiot if he congratulates her on losing rather than gaining weight! NOBODY should be losing weight while pregnant, not even women who are overweight.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I have celiac disease, and my paternal grandmother had it. My father has all of the symptoms, and says that he talked to his doctor about it, but he won't change his diet, because he "doesn't care". Now that attitude is rubbing off on my sister. She is 6 months pregnant, and has lost 17 pounds (not gained!). She won't get tested. She says that she doesn't get diarrhea, so she doesn't have "my stomach problems". I have begged her, and offered to pay for the dr's visit. It doesn't help that on her first visit I begged her to just bring it up to her doc, and she said that he told her "oh, don't worry about that" so that is her attitude now. She is smart, but lazy. Does anyone have an article about pregnancy and celiac, or anything I could send her or tell her to maybe get her to re-think getting tested?? I love her so much and I am so worried about her...

It's really tough to watch loved ones make decisions that you don't agree with. But I don't think that there is much more that you can do than make the information available and set an example. She will need to get to the answer about her own health through her own experience (be it positive or negative), and that is something you cannot provide.

Don't push, but offer support and guidance as she needs it...at some point she may change her mind.

Michelle

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NOBODY should be losing weight while pregnant, not even women who are overweight.

I don't think that this is necessarily true. Some normal, healthy women do lose weight in the first trimester through no fault of their own. Morning sickness can play a part in this. Some may simply maintain weight as they lose excess fat, but gain baby weight. Ensuring mom is on a healthy diet to support a growing baby is what is needed. Weight may fluctuate in the beginning stages without alarm, but weight loss towards the end of a pregnancy would be a bigger worry.

Michelle

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I don't think that this is necessarily true. Some normal, healthy women do lose weight in the first trimester through no fault of their own. Morning sickness can play a part in this. Some may simply maintain weight as they lose excess fat, but gain baby weight. Ensuring mom is on a healthy diet to support a growing baby is what is needed. Weight may fluctuate in the beginning stages without alarm, but weight loss towards the end of a pregnancy would be a bigger worry.

Michelle

What I really meant is, that after the first three months you should certainly gain weight. To have lost 17 pounds by the sixth month of pregnancy is terrible.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Oh I feel your pain!! My sister has TEXTBOOK symptoms and refuses to get tested. She actually is MORE symptomatic than I am. She went into spontanious labor and delivered her first son at 26 weeks he was only 2 lbs. Then she got pregnant again...she made it to 34 weeks and he weighed 4 lbs. Her second son is now on RX formula because he can not tollerate milk or soy and STILL she will not even consider celiac for herself or her boys. Thankfully they came through early deliveries without any problems.

Sometimes no matter how obvious it is people don't want to see that there is something wrong. Especially if there is another family member who has celiac. They have seen how difficult it can be and I suppose they choose to ignore the fact that life goes back to normal eventually. Good luck to your sister, I hope the last few months go smoothly. I hope she realizes how lucky she is to have a sister that is so concerned and loves her so much!


Amy

Diagnosed by biopsy with DH August 2005

Diagnosed with hypo-thyroidism December 2005

Diagnosed by biopsy with Celiac July 2006

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