Possible Celiac Mum To Be

[Beccels]

Hi Gals,

So ... my husband and I are now keen for a baby.

Thing is, I get these neurological issues (prolonged aura, 'derealization') which my Dr is trying to treat as I can't be on the meds if I want to be pregnant. And, past attempts to get off my meds have been horrible. Its been going on for about 12 years. Its been pretty bad. To the point I cant work or go out ... its pretty scary.

My Dr took me off gluten, wheat and dairy about 7 weeks ago and we found I have DQ2.

So I am starting to feel kinda good! We figure, I am going to start weening off my meds (as of last night) and maybe have our first 'go' at baby creation next week. tee hee hee.

Im so scared though. I just want a baby. As I am 28 I think, almost every female I know is either pregnant or having a baby. It literally reduces me to tears. I just wish this could be the one thing that really goes right in my life. But I just know it's not. In the pit of my belly I have this really horrible feeling we just wont be able to get pregnant, or I wont be able to get off my meds.

I was just wondering if anyone had any problems conceiving or had any insight, or would like to share thier experiences?

Im not comfirmed Celiac but it is a definate possibility.

[Mac55]

I didn't have problems getting pregnant but I am wondering if I'll have any issues if we try again. Your post struck me. I've had derealization episodes for 7 years now. They started off few and far between but rapidly became an everyday occurrence. I know how you feel. It's horrible. What do you take? I found out last fall that I've been having silent migraines and have been on Topamax which has helped some. The one thing that helped tremendously was going gluten-free. I've also found that dairy and corn don't agree with me, at least right now. When I'm free of all of those I'm pretty clear-headed and don't get much, if any, derealization. I go back to my neurologist in about a month and am hoping to wean from the Topamax so we can have another baby. I had a tiny bit of cornstarch while I was making my son's b-day cake yesterday and can feel the effects today. At least I finally know what to attribute it too!! I'm happy and grateful for that. Good luck with getting off the meds. I'd love to hear more details. Sounds like we're in a similar boat.

[tarnalberry]

My doc encouraged me to be off all meds for two months before attempting to conceive. You may want to wait until the drugs have a chance to totally clear your system. (Totally a personal choice, of course! )

[Beccels]

Oh .. my ... gosh ...

I have never ever found anyone with these problems!

Where to start!

All my problems started when I was about 17 years old (Im now 28).

Long story short, I started feeling very strange things - that terrified me. I was told for many years that I had 'emotional problems' and that it was anxiety and panic attacks. I was young and naive - and went to a shrink regularly .. nothing ever helped.

It tended to dip very badly, and then spontaneously vanish over periods of time. It got really bad about three times over the years, I couldn't work, function, socialise, I lost the majority of my friends. Even just watching TV was scary.

As I got a bit older, I decided enough was enough as I had no quality of life. Neurologists ran tests, were no help - told me over and over that I had emotional problems. It was horrific. One Dr finally just decided to try me on Sandomigran (pizotifen) .. which I don't think is available in the US. Within two weeks I was a new girl. It was amazing. So ... its a migraine variant, or silent migraine as you say. Technically, prolonged aura (derealization) without infraction.

So now that we want to have a baby I can't be on the meds. I tried to go off the meds just after Xmas and it was awful to say the least. Everything came back within days. So my GP/Dr put me on a Gluten, Dairy and Wheat free diet and did some genetic testing. I came back with the gene!

I have been on the diet now since Jan, AND - IM OFF MY MEDS! I have to eat a lot of fruit and green leafy vegis, which was a hard transition but I love it now.

So my symptoms were ..

I would always generally have the derealization just .. there.

Sometimes I would get these attacks on top off it ... it would feel like someone was pushing my head down, I would get heat at the bottom of my feet that would rush up my legs, my skin would feel dirty and grimy, I would get a quick ringing in my ear/s .. and some other stuff which I can't really explain. These attacks would peak and drop off in about 5 - 10 seconds. They would kinda leave me in shock and terrified, my muscles would just twitch after. Like, I was seriously just about to die. Due to the nature of them, Temporal Lobe Epilepsy was investigated but not likely.

My Neuro still isn't 100% sure of what it all is exactly, but due to the meds response - migraine it is, to some extent. Although my Neuro agrees, there is nothing about my condition which is 'typical'.

I would love to hear your story. I find it strangely exciting to hear from you!

I didn't have problems getting pregnant but I am wondering if I'll have any issues if we try again. Your post struck me. I've had derealization episodes for 7 years now. They started off few and far between but rapidly became an everyday occurrence. I know how you feel. It's horrible. What do you take? I found out last fall that I've been having silent migraines and have been on Topamax which has helped some. The one thing that helped tremendously was going gluten-free. I've also found that dairy and corn don't agree with me, at least right now. When I'm free of all of those I'm pretty clear-headed and don't get much, if any, derealization. I go back to my neurologist in about a month and am hoping to wean from the Topamax so we can have another baby. I had a tiny bit of cornstarch while I was making my son's b-day cake yesterday and can feel the effects today. At least I finally know what to attribute it too!! I'm happy and grateful for that. Good luck with getting off the meds. I'd love to hear more details. Sounds like we're in a similar boat.

[Beccels]

My doc encouraged me to be off all meds for two months before attempting to conceive. You may want to wait until the drugs have a chance to totally clear your system. (Totally a personal choice, of course! )

Luckily, my meds have a really short half life. So they are totally out of my system within 48 hours.

[Mac55]

Sorry, haven't had a chance to get back to you. I will soon. My son's birthday was yesterday, party last night, party tomorrow. Maybe I can sit down tonight after I go grocery shopping.

[Mac55]

It's so interesting to hear your story. I haven't ever "talked" to anyone who understood what I was going through. No one gets how messed up it is to live inside your head with this. I've tried to describe it to some people but how can you really?

Mine started at work when I was waitressing. It was a very busy summer night and all of a sudden everything just looked weird. I felt weird. I felt like I was a million miles away and all I wanted to was get out of there. It gradually started happening more and more at work then spilled over to happening outside of work, then to happening everyday. I was at the Neurologist by the end of the summer and they assumed they were Complex Partial Seizures and started me on a seizure med. I went from one med to another to another with no relief but experienced ALL the side effects. The next summer I had many more EEGs done including a video EEG where I stayed in the hospital for 6 days. When that came back with nothing I pretty much gave up and stopped going back.

I met my husband later that year and was pregnant the next. The whole time this is still going on but I just dealt with it. Postpartum was horrible for me. I felt terrible. I was so anxious. I actually found out at that time I had postpartum thyroiditis. It resolved on it's own without meds. When my first son was 7 months old we got pregnant again. Postpartum this time was a nightmare. My son was colicky and I was constantly having what I now know are migraines.

Over the past year I REALLY started to feel terrible to the point that it hindered most of what I wanted to do. I was also exhausted but that wasn't anything completely new. I've been exhausted for years. Went to my Endocrinologist with a huge list of symptoms, she said, "Your thyroid levels are fine." Went to my OB/GYN they checked my hormones, they were fine. I was beating my head against a wall thinking I was going crazy. I picked up Oprah magazine one day and read about silent migraines. I looked it up and within 3 days I was at my Neuro's office in Boston. They completely agreed and I started Topamax. I'd say about 50% of my symptoms went away but I wasn't cured. It wasn't until I got really sick and literally didn't want to eat a thing that I went to my dr, she ran a Celiac panel and it was positive. I went gluten-free and felt better than I had in 12-15 years!

Funny, my doctor said the same thing about my migraines. Pretty much, if they're responding to the meds, I guess they're migraines.

I am a little nervous to off meds. I hope they don't come back with a vengeance. I am on a low dose though, so I'm hopeful!

When are you trying for a baby? Soon? Depending on what the neuro says I'd probably wait til at least the summer. I loved having my son at the end of March.

[Beccels]

Oh my .. I read your reply last night although I was too upset to answer. Your story, is almost exactly my story. It really upsets me to think that you have gone through this as well. But - I am so amazed and over the moon to hear from you!

I totally understand what you are saying about living in your head. Everything is so inward, and scary - that everything that is external is just to much to even consider.

How old were you when it all started? I was about 17 (am now 28) when I had my first full time job out of school. Similar to you, it started slowly. I remember one day trying to walk to my office. It was about a 3 minute walk from the train station. I couldn't even make the walk. Everything was just to bizarre, weird, scary, horrific, horrible.

I was told for about 5 or 6 years that it was just panic attacks. I went to shrinks, followed instructions - did everything they said but it never got rid of it.

About 4 years ago I decided enough was enough and similar to you, I did ALL the EEG's, a 20 minute one, a 6 hour video one and I did a 5 day ambulatory one (I looked like a freak with the head bandage and wires running down my back!!) as, we thought it was temporal lobe epilespy .. the exact same thing as you, partial seizures. Everyone thought I was nuts as I was SOOO excited to have a name for it. I knew there was something wrong - at the point I just didn't care what it was. If it had a name, it could be treated. But all neuro investigations came up normal.

Have you ever had panic attacks or any other type of 'attack' on top of it? I don't know what they are but I get these 'attacks' which as exactly like a temporal lobe seizure. Or it might be a panic attack. I'm still not sure about those - neither are the Dr's.

I kinda begin to imagine how incredibly hard it must have been for you with two little ones to look after with all of this. I could hardly look after myself, yet a baby or two! You must be one tough cookie!!!

Due to the whole muck around and empty promises from Dr's, and going untreated for so long - literally believing my life was over .. I have some pretty firm emotional responses to things.

I had an awful week this week. I was wondering if I was pregnant and really excited. Then I got this really bad tummy bug (which I didnt know if it was a tummy bug or not), then I started wondering if it was morning sickness, and started freaking out that I was pregnant and thinking 'if this is morning sickness .. im not going to cope'. And I flipped out! I got super super bad anxiety but not with any of the Derealization symptoms.

Although, apparently quitting smoking (cold turkey!), going off meds and getting a really bad stomach bug in all of two days will make you loopy! haha! I am lucky, in Australia we have a really good mental health community services - so the crisis team came out and spoke to me last week, and I went to a lady from there yesterday - so I am feeling much better now and my head has shut up! Back to work tomorrow!

That was a really weird episode for me. It just jumped out of now where, but it seemed more emotional than if it was the migraines. But I went straight back on my meds and started smoking again. haha!

Hmmm .. I think slow and steady wins the race. I think I was trying to do it all to quickly!

Ive been on my gluten, wheat and dairy free diet since early Jan - and besides my little freak out this week, I have also never felt better! I am eating lots of raw foods, and lots of green vegis and fruit. I have the DQ2 gene but we haven't bothered doing the whole range of biopsys. I feel good, that's all that matters!

I was also wondering; how did your family and husband kinda react to what you were going through before you started to get help? Even though I have a wonderful family .. they had no idea what was going on except for what the Dr's said which was 'there is nothing wrong' which caused huge arguments.

This sounds so spastic, and I never write this on forums - but I am sending you HEAPS of love! tee hee hee.

It's so interesting to hear your story. I haven't ever "talked" to anyone who understood what I was going through. No one gets how messed up it is to live inside your head with this. I've tried to describe it to some people but how can you really?

Mine started at work when I was waitressing. It was a very busy summer night and all of a sudden everything just looked weird. I felt weird. I felt like I was a million miles away and all I wanted to was get out of there. It gradually started happening more and more at work then spilled over to happening outside of work, then to happening everyday. I was at the Neurologist by the end of the summer and they assumed they were Complex Partial Seizures and started me on a seizure med. I went from one med to another to another with no relief but experienced ALL the side effects. The next summer I had many more EEGs done including a video EEG where I stayed in the hospital for 6 days. When that came back with nothing I pretty much gave up and stopped going back.

I met my husband later that year and was pregnant the next. The whole time this is still going on but I just dealt with it. Postpartum was horrible for me. I felt terrible. I was so anxious. I actually found out at that time I had postpartum thyroiditis. It resolved on it's own without meds. When my first son was 7 months old we got pregnant again. Postpartum this time was a nightmare. My son was colicky and I was constantly having what I now know are migraines.

Over the past year I REALLY started to feel terrible to the point that it hindered most of what I wanted to do. I was also exhausted but that wasn't anything completely new. I've been exhausted for years. Went to my Endocrinologist with a huge list of symptoms, she said, "Your thyroid levels are fine." Went to my OB/GYN they checked my hormones, they were fine. I was beating my head against a wall thinking I was going crazy. I picked up Oprah magazine one day and read about silent migraines. I looked it up and within 3 days I was at my Neuro's office in Boston. They completely agreed and I started Topamax. I'd say about 50% of my symptoms went away but I wasn't cured. It wasn't until I got really sick and literally didn't want to eat a thing that I went to my dr, she ran a Celiac panel and it was positive. I went gluten-free and felt better than I had in 12-15 years!

Funny, my doctor said the same thing about my migraines. Pretty much, if they're responding to the meds, I guess they're migraines.

I am a little nervous to off meds. I hope they don't come back with a vengeance. I am on a low dose though, so I'm hopeful!

When are you trying for a baby? Soon? Depending on what the neuro says I'd probably wait til at least the summer. I loved having my son at the end of March.

[NicoleAJ]

I was on Neurontin for trigeminal neuralgia, and that it clears the system in 48 hours as well. However, my neurologist still suggested that I wait a month or two to start trying to get pregnant and to go on prenatals in the meantime. I actually ended up waiting several months because it just worked out better for our schedule. A lot of drugs taken for neurological disorders can zap your folate, which is not the best symptom to deal with right before conception. I'm 29 weeks pregnant now, and I'm happy I gave myself some time to readjust to life without meds before dealing with the first trimester. Good luck TTC.

[Mac55]

Hi! Me again! Sorry about the delay, I've basically just been surviving the past few weeks. I've had quite a few glutenings that have literally turned my life upside-down. I'm feeling a lot better as of the past few days, hoping it stays that way for a while!

I think I've come to realize that some of the things I attributed to the migraines were really Celiac related. I mean, I know I was and am having migraines but I now I can't say all of it is because of the migraines. I actually have appts with my neurologist and GI on the same day next week, so we'll see what they say.

You'd asked about my family in the last post. They've been supportive as much as they can be. I haven't known what's going on with me and why I am the way I am, so I guess I couldn't even explain it to them. I just had conversations with my husband and mom this weekend about what really and truly goes on with me and how I'm actually feeling. It helped a lot. They honestly didn't know everything. I'm still figuring it out myself.

How are you doing? Are you trying for a baby now? We haven't quite decided. Think I'm going to give it more time, until I'm feeling better more consistently. Hope you're doing well!!