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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,190
    • Most Online (within 30 mins)
      7,748

    Sah
    Newest Member
    Sah
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
×
×
  • Create New...