Newly diagnosed celiac while pregnant - all advice appreciated

[newtoceliac2024]

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! 

[trents]

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 June 24, 2024 by trents

[Scott Adams]

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]

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]

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]

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]

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 June 25, 2024 by trents

[Chamel]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[KathleenMK]

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.