Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

tiffjake

By tiffjake
in Related Issues & Disorders

Recommended Posts

tiffjake Enthusiast
tiffjake
Posted

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

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.

Jestgar Rising Star
Jestgar
Posted

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

tiffjake Enthusiast
tiffjake
Posted
  • Author
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.

goldyjlox Contributor
goldyjlox
Posted

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.

Ursa Major Collaborator
Ursa Major
Posted

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.

Michi8 Contributor
Michi8
Posted
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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Michi8 Contributor
Michi8
Posted
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

Ursa Major Collaborator
Ursa Major
Posted
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.

almostnrn Explorer
almostnrn
Posted

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.