Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

tiffjake Enthusiast

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

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

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

tiffjake Enthusiast
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

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

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
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
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
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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748

    Nick H.
    Newest Member
    Nick H.
    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
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...