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

Newly Diagnosed & Need Answers On Infertility


Stephanie R

Recommended Posts

Stephanie R Newbie

Hi there! I am recently ( in the last month) diagnosed with celiac disease. As I have been researching this disease I have came across alot of information on infertility and celiac disease. I am 30 yrs old and have have 5 miscarriages and 2 eptopic pregnancies in the last 7 yrs. I have 2 beautiful children ages 9 and 11 ( both normal pregnancies). After my last miscarriage about a year and a half ago, my doctor advised me to get my tubes tied. So I did, very much against my will. My husband and myself couldn't bare to see me go through the physical and emotional stress that came along with each loss. I thought that it would never happen. Now after reading all of the information that is out there I am finding myself being angry that I never had answers to why I couldn't carry a baby full term and now I can not have a child at all.

Since being diagnosed I have found hope in the fact that I know what is wrong with me and can control it. I am aware that I will need to live a Gluten free lifestyle for some time before I can even consider getting my tubal ligation reversed, but I am hoping that someone can give some advise as to how long should I wait and is it even an option now that I know what is going on with my body, could I possibly carry a baby full term? (by the way there has never been a known reason as to why I lost my babies)

Any information on this is appreciated!


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator

Welcome Stephanie- I am sorry you've been through sso much. There is a huge link between undiagnosed celiac and infertility in terms of miscarriage. I don't know the exact answer to your question about reversing your tubal ligation, but my GI told me that after one year gluten-free, your odds return to what your odds should be naturally. Hope this helps, Beverly

Stephanie R Newbie

Thank you so much for your kind words. They help. This is all so very overwhelming and exciting all in the same. I al ready feel so much better and am looking forward to a much healthier life style. Thank you for your response.

hannahsue01 Enthusiast

Frist off I am very sorry for what you have been through. I have heard that there is a link between infertility and celiac. I myself just had a baby had 29 weeks gestation due to celiac and have had one miscaraige since. My understanding is that is natures way of taking care of what our bodies can't support. I was not gluten free and was unaware of the disease untill after our second daughter was born. I believe that you would eventually be able to try for another baby with your tubes reversed. I would consult a professional on how long to wait. From what I have found around her it can take a good year or more for you stomach to heel and then you should start to obsorb the nutrients you would need for yourself and a little one. I hope the best for you and maybe a new baby in the future.

Ursa Major Collaborator

Hi Stephanie, and welcome to this board. Yes, there is definitely a link from celiac disease to infertility and miscarriages. I believe that when we're malnourished (no matter how well we eat, most people with celiac disease will still be malnourished due to malabsorption of essential nutrients), our bodies can't support a growing baby. I've had eight miscarriages and very difficult pregnancies. It is too late for me to have another baby. But I hope for you that it will be possible for you to have more babies after you heal.

How fast you heal depends on how much damage there is. I would wait at least a year before reversing the tubal ligation. You know your body best. When you feel that you are well, have lots of energy again, no gastro symptoms, no neurological symptoms and have figured out the diet to such a degree that you very, very rarely get glutened, I think you will be ready.

I would talk to a specialist surgeon before that, to see what your options are. I don't know where you live, but here in Canada it can be many months before you would get in to see a specialist. You would want to book your initial appointment fairly soon, but don't book any surgery until you are truly ready.

happygirl Collaborator

Stephanie,

Welcome to the board! We have all had our different journies to get here...but we are happy you have found this resource and hope some of our information can help.

The parent site to this forum, celiac.com, has some WONDERFUL abstracts of journal articles related to various disorders. Here is the one on infertility/pregnancy/miscarriage and Celiac:

https://www.celiac.com/st_main.html?p_catid...-38106579028.e8

On the celiac.com page, there are also multiple lists and a TON of information. Some of that "basic" knowledge was such a good start...then I could start digging in deeper. Just keep in mind the importance of being 100% gluten free...it is a strict diet, but we are here to help and have lots of tricks up our sleeve!

Another great resources is by Dr. Green, a leading Celiac researcher/physician at Columbia University. Published this spring (I think), it is called Celiac Disease: A Hidden Epidemic. You can order it off amazon, and my local Borders carried it, etc. It covers information on related disorders, including fertility/pregnancy, in depth. I HIGHLY recommend it--it has helped me so much. Unfortunately, many (not all), but many doctors know very little about Celiac. Having these real references (by real experts, in a format that doctors can look at) has been helpful when I have dealt with doctors.

Hope this helps...please let us know what we can do. Keep us updated!

Laura

Alexandra Newbie

Stephanie,

I'm so sorry about your many losses.

I'm not a diagnosed celiac (in fact my bloodwork came back negative), but I chose to go gluten free because I think I feel better when I do. I conceived through IVF shortly after going gluten-free, but to be honest I think it was not the gluten-free but rather getting my anti-thyroid antibodies (about which a bit more below) detected and my hypothyroid symptoms treated that made the difference (however, I don't really know and am DEFINITELY staying gluten-free throughout my pregnancy to be on the safe side). I had done IVF 3 times previously with no luck before that (my husband has a failed vasectomy reversal making IVF necessary).

Although others stress the importance of waiting until your body is healed to get pregnant, and that's obviously good advice, I'd add that surgical procedures to our reproductive tract take awhile to take effect. I don't know how that works with tubal reversals, but in the case of my DH we had to wait one year after his reversal surgery to know for sure that it hadn't worked. As female fertility declines with age, I think this would be worth finding out about. You might consider going ahead with the surgery and then relying on another contraceptive method while you wait for your body to heal from the celiac -- in case the effects of the reversal kick in quickly, since that can (probably) be unpredictable. I'd recommend consulting a specialist.

Another option probably open to you is IVF, though I doubt if that is as good an option as a reversal. But, it would again be worth talking with a specialist about.

Unfortunately if you live in the US I think you will find that these procedures (reversal, IVF) are not covered by insurance, and that they are expensive. Perhaps you will be one of the lucky ones who has insurance coverage, but most policies don't provide it for infertility.

Good luck to you.

-- Alexandra


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



Celiac.com Sponsor (A8-M):



Guest Kathy Ann

I am very fortunate to have had several healthy full term babies. But intertwined amongst them were several miscarriages as well. No explanation was ever given why it kept happening. "Just one of those things."

Now that I am diagnosed celiac, it all fits. But I think there must be more to it than just malnutrition. I'm wondering if celiac doesn't also affect the production of hormones like progesterone. According to my bloodwork, I never showed deficient in anything specific - at least not clinically that they could see.

Anyway, I also know of many people who have had reversals and gone on to have more healthy children. No reason it can't happen to you as well! Get things healed and your body rested and wait to see what God will do. :)

twtums Newbie

Hi! I haven't had miscarriages so I can't say specific to that but I have had 2 years of infertility before going gluten free. 2 months later I was pregnant. I am 14 weeks and so far things are great. I was nervous getting pregnant so soon after my diagnosis but it was God's will and obviously I had healed enough to get pregnant.

I don't think we can totally know how healed we are, I think I good gauge of it is how you are feeling. I know I was feeling better in 2 days and tons better in a couple weeks. As someone mentioned fertility does decline with age as well as risks in pregnancy go up so you have to weigh that as well. I was told you start healing when you stop gluten but for complete healing it can take 2-3 years. So maybe ask your doctor the best time to start trying?

Alexandra Newbie

Stephanie,

Oops -- I forgot to add above in my original response to your post what I meant to about the anti-thyroid antibodies.

They are another thing that might be worth getting tested for (if you haven't already). These correlate with various kinds of fertility problems and are more common in celiacs than in the general population. New research is suggesting their negative impact on fertility and pregnancy may be treatable. And they can be detected through a simple blood test -- any doctor can order it for you. If you do get tested and it turns out you have them, I'd suggest seeing a thyroid specialist and letting him/her know you are ttc. I found my thyroid doc (whom I like a lot) using this website: Open Original Shared Link.

Good luck to you. I am sorry to read about the struggles you've had and hope you'll find a way to build the family of your dreams.

-- Alexandra

Kels Newbie
Hi there! I am recently ( in the last month) diagnosed with celiac disease. As I have been researching this disease I have came across alot of information on infertility and celiac disease. I am 30 yrs old and have have 5 miscarriages and 2 eptopic pregnancies in the last 7 yrs. I have 2 beautiful children ages 9 and 11 ( both normal pregnancies). After my last miscarriage about a year and a half ago, my doctor advised me to get my tubes tied. So I did, very much against my will. My husband and myself couldn't bare to see me go through the physical and emotional stress that came along with each loss. I thought that it would never happen. Now after reading all of the information that is out there I am finding myself being angry that I never had answers to why I couldn't carry a baby full term and now I can not have a child at all.

Since being diagnosed I have found hope in the fact that I know what is wrong with me and can control it. I am aware that I will need to live a Gluten free lifestyle for some time before I can even consider getting my tubal ligation reversed, but I am hoping that someone can give some advise as to how long should I wait and is it even an option now that I know what is going on with my body, could I possibly carry a baby full term? (by the way there has never been a known reason as to why I lost my babies)

Any information on this is appreciated!

Hi Stephanie,

I am in a similar situation to you as I also had two healthy children before my pregnancy problems started. I guess I am fortunate though that my diagnosis came a little sooner than yours. I am so sorry that you have been through such a hard time and I can understand why you didn't want to go through any more heartbreak.

In the past year I have had two miscarriages, one at 13 weeks and one at 16 weeks. I have since been diagnosed as a celiac. (Well, my testing came back as borderline but my dad is a celiac and I certainly have the beginning of intestinal damage so I am convinced this is what has caused me to miscarry.) My ob has told me to wait 6 months before trying again and has also advised me to take 5mg of folate for 1-2 months before trying to make sure that I have plenty of folate in my body for the pregnancy. I have already started on other pre natal vitamins as well... just in case. He said that after six months of a strict gluten free diet my chances of miscarrying again will be the same as everyone else so delivering another healthy baby is a real possibility....one that I had almost given up on. I certainly hope he is right!

I have been on the diet for 2 months now and feel great so I will keep my fingers crossed for both of us!

Good luck

Kelly

Guest cassidy

Sorry for all that you have been through. At least you know why now.

I went gluten-free in January and we started trying in August. I tried to figure out how long I needed to wait after going gluten-free and 6 months seemed to be the answer I found most. My bloodwork was negative but if yours was positive then you could wait 6 months and have the blood test again. If it is negative then you are well on your way to healing and should probably be ok. They say that it takes 6 months to a year for the damage to heal, so waiting a year at the most should be very safe.

Stephanie R Newbie

I just wanted to thank everyone for the kind words and all of the encouraging information. It is really appreciated

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,283
    • Most Online (within 30 mins)
      7,748

    CSK 157
    Newest Member
    CSK 157
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
×
×
  • Create New...