I'm Only Symptomatic When I'm Pregnant

[mommyagain]

Sorry this is so long. I'm going to go through a history of my disease... then ask a few questions.

In May 2000 (age 23) I suddenly started having nausea and diarrhea several times per day. I was in college at the time and went to the on-campus clinic. Over the next 3 months they tested me for giardia (sp?) and a ton of other stuff. Had me keep a food diary for 1 month, doc did not recognize any sort of pattern (probably due to delayed symptoms from some stuff). I was diagnosed with IBS, they gave me a prescription (can't remember what) that did not help at all. I figured I was just going to have to live with the pain, cramping, nausea, and diarrhea. Doc said to avoid spicy food and do high-fiber (i.e. lots of whole grains). Naturally, my symptoms got worse but I didn't feel like the clinic could help me any more and I had no money/insurance to go to a real GI doc.

In September 2000, I fell down the steps and injured my hip. Still hurt 3 weeks later, so I got an X-ray in October. A fetus (approx 5-6 months) appeared on the X-ray. I had been on birth-control pill AND been getting my period all this time.

Still having GI problems, I went to OB for duration of pregnancy and ended up delivering a healthy full-term baby in January of 2001. I ate ANYTHING I wanted (including lots of gluten) for the entire pregnancy. Shortly after birth, I started on Depo-Provera rather than go back to the pill. I continued to have GI problems for the next two years.

In March of 2002, my husband and I decided to try the Atkins diet. During the induction phase, my symptoms TOTALLY disappeared! After about 1 month, my husband decided that he couldn't handle the low-carb thing so we gave up on the diet and started eating bread and pasta again. My symptoms returned and I self-diagnosed as allergic to wheat. Over the next month or so, I learned everything I could about celiac disease and went mostly gluten-free. There were times that I cheated, and paid for it for several days each time.

In November of 2005, I switched to a different form of birth control (Nuva-Ring). I started to notice that my "cheating" did not cause me discomfort unless I did it during that time of the month. So, I added gluten back into my diet for 3 out of every 4 weeks, with minimal diarrhea, although gas and bloating still gave me occasional problems. I thought I was "cured". I honestly thought that my celiac was a combination of hormone issues that started during pregnancy and continued while on depo (which mimics pregnancy) and the gluten.

I am now 4 weeks pregnant (got pregnant while using Nuva-Ring). My celiac symptoms started again 3 days after conception. I have an appt with my OB on Thursday. Over the last few days I have been trying to eliminate gluten from my diet, but I'm having trouble because the entire kitchen is contaminated, and I've got a 6-year old who insists on peanut-butter toast every morning for breakfast and a sandwich in her lunch box every day that I have to make.

So, obviously, birth control does not work so well for me!

My questions are:

1. when I made the appt, nurse wanted me to come in immediately to pick up prenatal vitamins. I told her that I needed to talk to doc about it because I'm gluten-intolerant. Nurse said "huh?" So, I'm going to show up with a list of the prenatal vitamins that have been mentioned on this board as being gluten-free. Is there anything else I need to talk to the OB about in regards to the celiac? I am planning on asking for a full blood panel to figure out if I'm deficient in any vitamins. I now know that even tho I was not symptomatic, I was probably still not absorbing nutrients the way I should have been over the last couple of years.

2. my friend who has Chron's thinks I should also go see a GI specialist. I feel like I can manage things on my own, but would like your comments/suggestions on how important a GI specialist is for celiac, especially during pregnancy.

3. my husband is NOT happy at all about the family going mostly gluten-free, which I think is the best possible way for me to be gluten-free (and healthy). He HATES the bread/pasta replacements, even the ones that have gotten good reviews by others. He has actually said that he would rather have me terminate the pregnancy and be able to eat wheat again, than go through that for the rest of our lives. He totally does NOT get that I will always be Celiac, even if I'm not obviously symptomatic. I'm freaking out because I did not want to be pregnant right now, but I don't know that I want to terminate. He will be out of town for my OB appt, so at least he won't be able to tell the doc that he's not happy about it. Anyway, is there a good resource that I can have him read so he understands the disease better? Maybe I should find a GI doc who can explain the issues to my DH?

Sorry I'm rambling... It hasn't been a good couple of weeks in our house

[alamaz]

congrats. on your pregnancy.

1- yes, you need to see a GI doc. but he most likely will only be able to confirm celiac through a blood panel and not an endoscope while your are pregnant. you still need to confirm this is what is going on because you seem to have trouble sticking to the diet since it is not "confirmed" by a professional. once you are 100% certain it is celiac you will be 100% certain you must be gluten free

2-most doctors don't know what celiac is and won't be a good resource for you. unless you find some one who is knowledgable about it you are on your own for finding vitamins, foods EVERYTHING gluten free.

3- i can't give you much help about your husband besides what i would have told him when he told me to terminate a pregnancy because it interferes with his eating regular pasta and bread . wow. that was a pretty jerky thing to say. also, you don't get rid of celiac after you deliver a baby. if you have celiac, you have it forever. when i was so sick and had to go gluten free my husband was behind me 100% because he knew how progressively sick i'd been the past 5 years. i told him he could eat gluten all day long as long as he didn't bring it into the house. as for your daughter, she needs to be tested for celiac as well even if she doesn't have symptoms. and if she doesn't have to be gluten free then it's time she starts to learn how to make her own breakfast safely to keep from cross contaminating you (you said she's 6 right?).

Good luck figuring it all out! I know this is not the time to have to deal with all of this but celiac disease isn't the most convienent of diseases but it's also the easiest one to "cure" - it's all about your choices of what you eat. this board is great for support! keep us posted on how you do.

[mommyagain]

Thanks Alamaz! I think my husband figures that if I don't have the symptoms very often (when I'm not pregnant), then I can go back to eating gluten like I did in '05. At that time, we really truly thought that it was a hormonal thing rather than "real" celiac.

Also, how likely is it that the test would be positive if I've been mostly gluten-free? I'm worried that if I get a negative result (because I've been gluten-free), my husband will be even more resistant to the gluten-free diet. As an engineer and the son of 2 doctors, he will ALWAYS believe the "numbers" over trial and error. I guess I'm just scared, and confused because normally he is very supportive.

I guess I should mention that he is dealing with a total reorganization of his department at work, which is stressful. And, I'm getting ready to take a major exam in October that I've been trying to study 3 hours a day for (in addition to full-time job and family). So, the entire family is stressed... and tired... we both feel like the pregnancy would have been more welcome if it had waited a few months so everything can settle out.

[alamaz]

you do still need to be eating gluten to take the test so you should either have your ob/gyn run the test asap or get in to see a GI doc asap. i think the amount you have to eat per day is equivalent to a piece of bread and since you have only been trying to be gluten free for a week then it won't make much of a difference (somebody correct me if I'm wrong that it takes time for your levels to drop). but definitely try to get it asap. the sooner the better.

i understand you husband being a numbers guy- i am married to the most analytical man on the planet and it can drive one up a wall sometimes a good book to read is "Celiac Disease: A Hidden Epidemic", "Gluten Free for Dummies" and there are several others but I can't think of the names. They are all available on Amazon. It might also help for you to see a nutritionist who knows the diet (that might take some investigating depending on where you live) and to take your husband with you so he can learn and hear it all from another source and won't be dependant on you to prove it right or wrong.

Sorry you guys are under so much stress. Just try to remember the baby won't be here tomorrow so you still have time to get things in order and do what you need to do.

[ItchyMeredith]

First of all- CONGRATS! A new baby is so exciting!

You may have celiac that just reacts in a weird way to hormones. I know that I have been celiac for at least 2 years but I only found out 2 months ago. I got DH (the celiac rash) 2 months postpartum with my first. It then went away on its own only to return again when I was 2 months postpartum with my second. It has yet to go away this time but I am still breastfeeding. It went away last time when I stopped breastfeeding. Weird right? The thing is I have definitely been celiac for these 2 years. My skin biopsy from 2 years ago confirmed it (the M.D. didn't tell me but that's another story). Even though I may not have had the rash at different times I was still celiac and still doing damage to my insides. That is scary. Please get tested further! Get a blood test ASAP while you may still have elevated antibodies. Go through the enterolab test if you can. Since you can't be scoped you may not be able to get a perfect diagnosis but it should be enough to motivate you to go 100% gluten free. It is vital to you and your baby.

Good Luck!

CONGRATS AGAIN!

[mommyagain]

So, I just got back from my OB appt. It's official, I'm 6 weeks pregnant! My husband was MUCH more supportive last night... I think he was just really stressed from work before.

My OB gave me a list of "things to avoid" which eliminates a LOT of what I am currently eating... I know some of it is for real, but some of it seems a little over the top...

1. NO caffeine! I am a total Dr. Pepper addict. I probably have 10-12 8oz servings a day. Everything I've read says that 3-4 servings (less than 300mg of caffeine) is safe, but she wants me to be totally caffeine free by the time I go back in 3 weeks.

2. No big fish that eat little fish (too much mercury). I had always heard to limit the high-mercury fish to once a week, which I usually do as a quick lunch at work. One pack of tuna mixed with some gluten-free salad dressing or mayo is super quick and easy. I guess I could switch to packaged salmon, but I don't like it as much

3. No deli meat or soft cheese because of some weird bacteria thing that I can't remember or pronounce. Guess what has been my other solution for a quick lunch since I went gluten free? Right, deli meat and cheese (I have no problems with cassein).

I'm having enough trouble with the gluten-free thing, now this? aaarrrggghhh!

Also, she is upset because I've lost 7lbs since I was there 3 weeks ago for my normal check-up (didn't know I was pregnant then). I tried to explain that after switching to the gluten-free diet, I probably dropped a couple of lbs of water but she said, "No excuses, you should NEVER be below your pre-pregnancy weight during pregnancy".

I guess I would be more inclined to agree with her on this if I was under-weight to begin with, but I'm not. If anything, I'm a little overweight. I'm 5'2 and weigh 141lbs, 3 weeks ago I was 148. (BMI was 27.1, now 25.8) She said that if I'm not back to my pre-pregnancy weight when I go back, she's going to make me start supplementing with Ensure or Boost, assuming she can find something that's gluten-free. I just don't see what she's worried about. Sure, if I continue to loose weight, there might be a problem, but I don't think I need to gain any right now. Oh well, I guess I'll see what happens over the next couple of weeks. I could always put a couple of rolls of quarters in my pockets to fake it

[Ridgewalker]

So, I just got back from my OB appt. It's official, I'm 6 weeks pregnant! My husband was MUCH more supportive last night... I think he was just really stressed from work before.

My OB gave me a list of "things to avoid" which eliminates a LOT of what I am currently eating... I know some of it is for real, but some of it seems a little over the top...

1. NO caffeine! I am a total Dr. Pepper addict. I probably have 10-12 8oz servings a day. Everything I've read says that 3-4 servings (less than 300mg of caffeine) is safe, but she wants me to be totally caffeine free by the time I go back in 3 weeks.

2. No big fish that eat little fish (too much mercury). I had always heard to limit the high-mercury fish to once a week, which I usually do as a quick lunch at work. One pack of tuna mixed with some gluten-free salad dressing or mayo is super quick and easy. I guess I could switch to packaged salmon, but I don't like it as much

3. No deli meat or soft cheese because of some weird bacteria thing that I can't remember or pronounce. Guess what has been my other solution for a quick lunch since I went gluten free? Right, deli meat and cheese (I have no problems with cassein).

I'm having enough trouble with the gluten-free thing, now this? aaarrrggghhh!

Also, she is upset because I've lost 7lbs since I was there 3 weeks ago for my normal check-up (didn't know I was pregnant then). I tried to explain that after switching to the gluten-free diet, I probably dropped a couple of lbs of water but she said, "No excuses, you should NEVER be below your pre-pregnancy weight during pregnancy".

I guess I would be more inclined to agree with her on this if I was under-weight to begin with, but I'm not. If anything, I'm a little overweight. I'm 5'2 and weigh 141lbs, 3 weeks ago I was 148. (BMI was 27.1, now 25.8) She said that if I'm not back to my pre-pregnancy weight when I go back, she's going to make me start supplementing with Ensure or Boost, assuming she can find something that's gluten-free. I just don't see what she's worried about. Sure, if I continue to loose weight, there might be a problem, but I don't think I need to gain any right now. Oh well, I guess I'll see what happens over the next couple of weeks. I could always put a couple of rolls of quarters in my pockets to fake it

Regarding the mercury in fish thing...

The deal is once a week is ok for healthy men or non-pregnant women. A LOT of scientists are now saying that pregnant women and children should not eat tuna (or any of the other big fish that eat little fish) at all! It is a bummer, but heavy metal poisoning is a bigger one, as I think some of the others here can testify to.

The other rules about caffeine and deli meat and cheese surprise me, too!

Congratulations!

-Sarah

[aikiducky]

Congrats!

I don't usually hang out in this section of the forum but I just happened to read this thread. The "weird bacteria" in deli meats and soft cheeses is listeria, here's a link:

Open Original Shared Link

Pauliina

[mommyagain]

Congrats!

I don't usually hang out in this section of the forum but I just happened to read this thread. The "weird bacteria" in deli meats and soft cheeses is listeria, here's a link:

Open Original Shared Link

Pauliina

From CDC page: "A person with listeriosis has fever, muscle aches, and sometimes gastrintestinal symptoms such as nausea or diarrhea. If infection spreads to the nervous system, symptoms such as headache, stiff neck, confusion, loss of balance, or convulsions can occur."

Wonderful, those are almost exactly the symptoms I have when I get glutened, except for the stiff neck and convulsions.

Thanks for the info, I guess my doc does know what she's talking about

[blueeyedmanda]

Just wanted to say Congrats!!

[maryjoali]

Thanks for posting about deli meats...I thought I was set now that I found a gluten-free, nitrate-free deli meat. Better to be safe than sorry! Better figure out what I can eat for lunch tomorrow!!!

[mommyagain]

Thanks for posting about deli meats...I thought I was set now that I found a gluten-free, nitrate-free deli meat. Better to be safe than sorry! Better figure out what I can eat for lunch tomorrow!!!

My OB said I could eat deli meat, but only after heating it until it steams (like you would a hot dog). That just seems wrong to me, so I haven't tried it.

My new favorite lunch (for the last couple of weeks) has been to make a wrap with whatever leftovers we've got in the frig. If I know I'll be near a microwave at lunchtime, I'll mix meat, rice, beans, veggies (fresh or cooked) in a plastic container and take a large leaf of lettuce or corn tortilla separate. The meat mixture gets microd til it's hot and then all of it gets wrapped up in the lettuce or tortilla. I keep a small roll of foil in my desk at work so I can wrap it burrito-style so it all stays together.

If no micro will be available, I do a cold wrap with meat and fresh veggies, and some salad dressing. For the cold wraps, I wrap them at home, but take the dressing separate so nothing gets too soggy by lunchtime.