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

Worried About A Friend

cgilsing

By cgilsing
in Related Issues & Disorders

Recommended Posts

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?

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

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


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.