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 celiac while pregnant - all advice appreciated


newtoceliac2024

Recommended Posts

newtoceliac2024 Newbie

Recently diagnosed celiac at 12/13 pregnant, now 16 weeks. Diagnosed hypothyroid March found out pregnant April . Was on low dose levothyroxine daily eating anything /everything gluten with no symptoms ( toast was my best friend with my severe nausea) TSH not ideal for pregnancy and Levo upped at 7 weeks leading to changes in BMs with 4 weeks of D finally tested by PCP for celiac blood work that came back positive.  Can pregnancy cause celiac?? Any advice on how to navigate pregnancy and celiac? Worried about nutrition / prenatal absorption and no resolution of D no matter what I’m eating ( currently gluten free x 2 weeks). Do I need to see a GI at some point? All help appreciated! 


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

Welcome to the forum, @newtoceliac2024!

Celiac disease has a genetic base but the genetic potential requires some epigenetic stressor for the genes to be turned on, such as a viral infection. But the stressor can be a lot of different things. Could pregnancy be one of them? Possibly, but it seems unlikely, especially given the timing of things as you describe in your narrative.

That you had no symptoms of celiac disease is not strange in that many celiacs are of the "silent" type and have no symptoms or very minor symptoms before being diagnosed. Part of that phenomenon is due to the fact that most people (and a lot of physicians) are only acquainted with classic celiac symptoms such as bloating, diarrhea and oily stools, and anemia. We now know that there are over 200 symptoms associated with celiac disease. I myself was of the silent type and what led to my celiac diagnosis was chronically elevated liver enzymes which had no other explanation. We now know that elevated liver enzymes are found in about 20% of those with celiac disease not yet gluten free. But years ago, we were ignorant of that. We now know that one of the risk factors for having celiac disease is the presence of other autoimmune diseases such as diabetes or thyroid disease. So, my guess would be that you have had celiac disease longer than you realize but it was masked by the lack of classic symptoms. You are a young adult still in your child bearing years but given more time, if your celiac disease had gone undiagnosed and you continued to eat gluten, you would have likely developed some of the classic symptoms as the damage to the villous lining of the small bowel became more severe. Since you are pregnant, I'm guessing you were diagnosed by blood antibody testing alone and did not have the second stage of diagnosis involving an endoscopy/biopsy of the small bowel lining. A biopsy would allow for the rating of the amount of damage done to the villous lining of the small bowel using something called the Marsh scale.

On this forum, we routinely recommend that newly diagnosed celiacs begin a regimen of high potency vitamin and mineral supplementation to compensate for malabsorption related deficiencies. Chief among them would be a high potency B-complex (which includes folate). But we also recommend taking magnesium glycinate or magnesium citrate (not magnesium oxide as it is poorly absorbed), 5000 to 10,000IU of D3 and zinc. I do not think any of these would pose a threat to the child developing in you but if you have any questions about that, talk to your physician. Make sure all vitamins and supplements are gluten free. Costco is a great place to find stuff like that at a reasonable price. Look for their Kirkland signature and Nature Made lines n particular. Supplementation can be more important for celiacs who rely heavily on prepackaged gluten free food items because the flours used are not fortified with vitamin and minerals are are mainstream products made from wheat. Many of most gluten free prepackaged food products are a nutritional waste land.

I am including an article for your review that is a primer for gluten free eating. It is easy to achieve a lower gluten diet but much harder to achieve a truly gluten free lifestyle. Gluten is hidden in so many places that you would never expect and disguised by terminology. Took my wife and I about a year or two to get really savvy about gluten free eating.

Edit: About your diarrhea. It is often the case that celiacs develop intolerance to some other foods not containing gluten. Chief among them would be dairy (either the sugar, lactose, or the protein, casein) and oats (even gluten free oats). It's the protein avenin that is similar to gluten). You might try eliminating these from your diet for a while and see if the D improves. I'd start with dairy.

Edited by trents
Scott Adams Grand Master

I hope you're doctor is on top of this, and you can stay 100% gluten-free, as there are risks associated with celiac disease and pregnancy:

 

newtoceliac2024 Newbie

Sorry new to this and unclear how to directly reply to a reply..I am currently taking a prenatal ( nature made which is gluten free) which my OB says should be sufficient and had me stop Magnesium I was taking for migraines since it can be a laxative.  Dairy is one thing hard for me to remove as I am currently craving it and have really been eating hard cheese or Greek yogurt which has less lactose, but also a good source of calcium during pregnancy. I am currently trying to switch my kitchen and all foods gluten free which is hard and expensive! How long does it normally take for BMs to “normalize “ after going gluten free? I never had cramping or abdominal pains, and my BM schedule is normal but they just aren’t LOL. Do I need to see a GI or nutritionist as well? 

trents Grand Master

If you take magnesium glycinate instead of magnesium oxide it shouldn't have a laxative effect. Magnesium oxide is the most common form you see on store shelves (and the least expensive) but it is not well-absorbed. It draws water into the colon and this is what creates the laxative effect. Many celiacs have the opposite problem of being constipated. Your BMs should be normalizing by now. I believe something else in your diet that you are still eating is causing the loose stools. Are you consuming a lot of prepackaged gluten free food items? These can have ingredients that don't agree with many people like xanthan gum.

newtoceliac2024 Newbie

Really trying to eat fresh and not so much processed but of course I do have processed items especially snacks for the long work days - I feel very limited and restricted figuring this out along with my pregnancy restrictions already and taking items out seems hard especially while pregnant because I need enough calories and food options. I am still taking a higher dose levo 3x per week so unclear if that plays a role but no choice as my tsh has to be low in pregnancy also can’t get biopsy till after giving birth. Did you and your wife throw out and re purchase items for your kitchen just read that in the article you sent, very helpful thank you! 

trents Grand Master
(edited)

I am a celiac but my wife is not. However, she is very supportive of my need to eat gluten free and very careful not to expose me. My wife pretty much eats what I eat but she does fix wheat things for herself like crepes and occasionally pancakes and biscuits. She is very careful to wash things well, including toaster oven racks and counter tops after she makes wheat things. This works well for us as I am not a supersensitive celiac who gets reactions by touching or inhaling wheat flour. I can experience a little cross contamination without any noticeable reaction I believe but larger amounts of gluten exposure make me violently ill with hours of severe gut cramps and intractable emesis followed by diarrhea. Once Patti made some wheat biscuits for herself and some gluten-free ones for me that looked very much alike and I got them mixed up. Thought I was going to wind up in ER. The amount of soy sauce in an appetizer-sized bowl of soup at a Chinese restaurant once made me sick. So, no, we did not have to throw out stuff and restock our pantry from scratch. I would also add the article I linked to you goes to extremes in some ways and recommends some things that would only be necessary to observe if you are a supersensitive celiac. But do check your meds and supplements for gluten.

Eating out is the #1 sabotager of the celiac's efforts to eat gluten free. You have no control over how food is prepared and handled back in the kitchen. You may order a dish with gluten free pasta but they may cook it in the same water they cook wheat pasta. The may cook your bacon on the same grill (and probably will) that they cooked another customer's French toast. And they will likely stir, cut and serve your gluten free food with the same utensils they use for other people's wheat stuff.

Edited by trents

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



Celiac.com Sponsor (A8-M):



Chamel Newbie

New to this forum…just wanted to jump in and say that pregnancy was a personal stressor which brought gluten sensitivity to the forefront in my life. I also happen to be a midwife; I second the suggestion to try magnesium glycinate as it tends to not loosen stools. I may have missed the reason for limiting dairy…? Generally dairy is a great option in pregnancy. Otherwise focus on meats and eggs for protein. Blessings to you on your journey.

Chamel Newbie
On 6/24/2024 at 10:20 AM, Scott Adams said:

I hope you're doctor is on top of this, and you can stay 100% gluten-free, as there are risks associated with celiac disease and pregnancy:

 

Thankfully, pregnant patients with well-managed celiac disease do not generally have heightened risk for complications:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9756025/

“Undiagnosed celiac disease is associated with a higher risk of adverse pregnancy outcomes. Early celiac disease diagnosis and appropriate management with GFD may ameliorate these associations.”

Good news for the pregnant mamas who are managing well!!

trents Grand Master

Soy milk is a good alternative to cow's milk. It is fortified and essentially has the same nutritional value as cow's milk. Though, it also true that some celiacs don't tolerate soy well.

newtoceliac2024 Newbie
40 minutes ago, Chamel said:

New to this forum…just wanted to jump in and say that pregnancy was a personal stressor which brought gluten sensitivity to the forefront in my life. I also happen to be a midwife; I second the suggestion to try magnesium glycinate as it tends to not loosen stools. I may have missed the reason for limiting dairy…? Generally dairy is a great option in pregnancy. Otherwise focus on meats and eggs for protein. Blessings to you on your journey.

I had actually limited dairy pre pregnancy for cholesterols reasons but was told during pregnancy to not limit for the fats and calcium needed for baby and the cheese cravings have been unreal lol especially cheddar! Usually my main dairy is cheddar cheese and Greek yogurt as snacks. As a midwife any other recommendations you give your patients with celiac ? Thank you! 

newtoceliac2024 Newbie
13 hours ago, trents said:

I am a celiac but my wife is not. However, she is very supportive of my need to eat gluten free and very careful not to expose me. My wife pretty much eats what I eat but she does fix wheat things for herself like crepes and occasionally pancakes and biscuits. She is very careful to wash things well, including toaster oven racks and counter tops after she makes wheat things. This works well for us as I am not a supersensitive celiac who gets reactions by touching or inhaling wheat flour. I can experience a little cross contamination without any noticeable reaction I believe but larger amounts of gluten exposure make me violently ill with hours of severe gut cramps and intractable emesis followed by diarrhea. Once Patti made some wheat biscuits for herself and some gluten-free ones for me that looked very much alike and I got them mixed up. Thought I was going to wind up in ER. The amount of soy sauce in an appetizer-sized bowl of soup at a Chinese restaurant once made me sick. So, no, we did not have to throw out stuff and restock our pantry from scratch. I would also add the article I linked to you goes to extremes in some ways and recommends some things that would only be necessary to observe if you are a supersensitive celiac. But do check your meds and supplements for gluten.

Eating out is the #1 sabotager of the celiac's efforts to eat gluten free. You have no control over how food is prepared and handled back in the kitchen. You may order a dish with gluten free pasta but they may cook it in the same water they cook wheat pasta. The may cook your bacon on the same grill (and probably will) that they cooked another customer's French toast. And they will likely stir, cut and serve your gluten free food with the same utensils they use for other people's wheat stuff.

Going on a babymoon and made sure to have our own kitchenette due to the new gluten free diet. Any recommendations on things to say when I do end up going out to dine with the staff ? I have been too nervous /scared to eat out since going gluten free.  Where we are going I can opt for a lot of grilled fish and fish tacos on corn tortillas but I know that doesn’t mean zero CC on grill or in kitchen

trents Grand Master

My recommendation would be that you talk to the manager and/or the chef and request that anything they cook for you be cooked in its own clean pots and pans and handled with clean utensils separate from all else that is being cooked. Explain to them that you have "gluten intolerant celiac disease" and that this is medically necessary. If you just use the term "celiac disease" they might not be familiar with that.

RMJ Mentor

To add to what @trents wrote, sometimes using the term “allergy” can help at restaurants, even though celiac disease is NOT an allergy scientifically and medically speaking!

trents Grand Master

Personally, I hesitate to use the term "allergy" because it can communicate to people that if you eat this it may just cause me to sneeze and have watery eyes or develop an itch rash. Anaphylaxis wont' necessarily come to their mind when they here the term "allergy". That's one reason I don't like to use the term allergy when referring to celiac disease. The other reason is it perpetuates the misconception in the public eye that it is an allergy and not something more serious, i.e., an autoimmune disease.

RMJ Mentor

We’ll just have to disagree then.  When I think of food allergies I think of anaphylaxis and epipens, and I don’t mind using an inaccurate term if it will keep me safer from being served food contaminated with gluten.

Chamel Newbie
21 hours ago, newtoceliac2024 said:

I had actually limited dairy pre pregnancy for cholesterols reasons but was told during pregnancy to not limit for the fats and calcium needed for baby and the cheese cravings have been unreal lol especially cheddar! Usually my main dairy is cheddar cheese and Greek yogurt as snacks. As a midwife any other recommendations you give your patients with celiac ? Thank you! 

It sounds like you’re doing all the right things. In terms of general pregnancy nutrition… Build meals around protein. I recommend that my clients eat every 3-4 hours, a little something (even if it is a handful of nuts or a few bites of Greek yogurt). In pregnancy your body can enter a fasting state much more quickly, and eating often helps limit blood sugar swings. Have a bedtime snack, and keep something readily available to consume during the night if you’re wakeful. Lily Nichols’ book “Real Food for Pregnancy” is a gem (with gluten-free modifications of course).

Blessings,

Melissa

  • 2 weeks later...
KathleenMK Rookie

New to Celiac, my daughter is facing this as well, so I will keep you both in my prayers. With my husband's Celiac diagnose last year I am trying to learn all I can to help him and change our cooking habits.(Dining out is the worst.) So I am no expert but I was childbirth instructor and nutrition was a big part of that. Melissa gave some excellent advice. Another thing you might explore is probiotics which should be safe for pregnancy. In fact there is recent research (NIH) on L.Crispatus helping to prevent miscarriage and preterm labor. Our GI doctor reccomended Florastor for diarrhea  so  you might ask your OB or midwife about those. You may need more than the usual prenatal vitamins because of the malabsorption with Celiac.

On the dining out my advice is speak out. I annoy my husband by doing it, but you really have to let them know this is a serious health issue for you not just a preference to not have croutons on a salad.  Finding restaurants who mark their gluten-free options on the menu is helpful.

Good luck and wishes for a healthy pregnancy and birth.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,054
    • Most Online (within 30 mins)
      7,748

    Donnellv
    Newest Member
    Donnellv
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kathleen JJ
      And yes, of course it's better to know and we will adjust.  It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made.   I'm really burdened by the potential social impact for him. He so loves to go to a restaurant as a family - I'll guess that's finished. Going to birthday parties at another kids house? I am reading about Coeliacs and apparently the fact that something as much as TOUCHED something with wheat is enough, even if he doesn't feel the symptoms - how can we control that bar from keeping him locked up?    And the worst worry of all: how do you tell a little boy to do all of this to not have symptoms that he does not have. If he'd been having horrible diarrhea or feeling really tired, we could tell him 'see, you feel so much better now, that kind of food was just not good for your body', but now, what will our argument be? For clarity: of course we will put him on the diet, I am not saying I don't believe in the necessity of that, it is just that it will be quite a stretch to 'sell' it to him 😞
    • StaciField
      I’m 41. You have helped me achieve the goals of finding a way of getting nutrients into my body so I will see how it works for me. Thank you so much.
    • Kathleen JJ
      Thank you for your reaction. The reference values are both "<10", although I found a medical paper from Netherlands (I'm Belgian) who use the same values and there the see a positive daignosis as twice more then 200 and a positive biopsie. I didn't see how to change this in my original message, sorry...
    • cristiana
      Hi Kathleen Welcome to the forum. I am based in the UK so I am just picking this post up before our US based moderators appear.  I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please? We see a lot of coeliacs who also have helicobacter pylori on this forum.  I am not sure how that would reflect in the blood results so I will leave this to be answered by my more experienced colleagues @trents or @Scott Adams. Obviously, you won't really know for sure where things stand until you have your meeting with the consultant.  I am sorry that you have to wait, but it will be worth knowing one way or another.  Apart from his recent gastric issues, it is fantastic to know that your son is otherwise a picture of health.  But it is worth bearing in mind that undiagnosed coeliac disease can cause health issues in the longer term, so far better to know now if he does turn out to have coeliac disease and adapt your son's diet accordingly, before other health issues have a chance to appear. Cristiana  
    • Kathleen JJ
      Hi all, I'm very new at this and 'this' has been quite a rollercoaster ride.   Last august my 7 year old son suddenly had these colic like pain attacks that would come a few times per day/night during 10 days. Because they were that bad and because our older daughter had her appendix taken out at 7, we ended up at ER twice to have him checked out. On both accounts blood was taken, on one account an ultrasound was made, showing swollen lymph nodes around the stomach, and the working theory was it was a violent reaction to a viral infection (even though he was not nauseous nor had diarrhea or anything like that). After 10 days it stopped as suddenly as it came on.   On October 1d my daughter started vomiting in the middle of the night, had a fever, and my son also threw up once (no fever). We kept them home from school, daughter kept on vomiting, fever stayed, son was perfectly healthy during the day, although he only ate yoghurt to be safe. The plan was to let him go to school the day after. In the night prior to his school return however, he woke up at 1, screaming with pain, begging to go to ER, which we did - the pain from august had returned.   Again bloodwork, but nothing found. It ended up only being that one pain attack, but because they were that bad, we went to the pediatrician the week after to have him checked up more thoroughly. He is a very energetic, sporty boy and he showed off his six pack with great pride to the doctor. She said he looked as an example of health, but did a more extended search because as the last blood test his liver values had been ever so slightly raised and she wanted to see how they'd do after a month.    So on November 8 we had his blood drawn again. His liver values had returned to normal, which did confirm the working theory that his pains were viral-infection triggered.   However, to everyone's (including the doctor) surprise, he also had these values: Transglutaminase IgA + >128 U/mL Gliadine IgG + 123.0 U/mL    I take it these are quite high. So last Tuesday he got his gastroscopy done, we'll have the result around the 25d we hope.  Whilst going for taking samples of the bowel, the gastro enterologist did notice some nodes in his stomach that present like a reaction to a Helicobacter pylori type infection, which would very much explain the type of pains he had.   We are still very much in shock by the Ceoliakie diagnosis (I know, it still needs to be confirmed by the biopsy, but with those numbers we kind of expect it) as he has no symptoms at all. The doctor said 'once he goes on a gluten free diet you'll see him blossom into an energetic, more happy boy' and we're like: but he is bouncing around singing and joking all day, I really can't imagine him being MORE energetic and happy - meaning, he's welcome to be that of course, but this is not a tired, withdrawn kid.   And even if the biopsy gets back negative (unlikely), what could these numbers have meant then? Could the Helicobacter pylori have an influence on this?   I have so many questions but are only eligible for a consult on December 6d so my data driven mind is going crazy having so little information or knowing so little about what everything means...   Kind regards, Kathleen  
×
×
  • Create New...