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Very Scared

Kylie

By Kylie
in Related Issues & Disorders

Recommended Posts

Kylie Explorer
Kylie
Posted

Hello everyone,

I didn't know where else to post this but I guess this is the best place. I am 18 years old and have been very sick with Celiac for the past 3 years. Although I maintain a very strick gluten free and mostly dairy free diet, I cannot seem to get my symptoms under control. Also, I recently have developed a very rare and dangerous neurological disease called Regional Sympathetic/Neurovascular Disease. I have always had issues with my period, I have been on birth control since I was 15 becuase I would get my period up to three times a month and would have horrible nose bleeds whenever I had my period (no one could figure that one out). I recently went to the doctor to have more testing done to try and find the missing link to my puzzle and was told that it is very unlikely that I will ever be able to get pregnant. I was also told that even if I managed to get pregnant, my chances of having a healthy pregnancy for both myself and more importantly the baby would be slim to none. I am beyond shocked and very very upset. Has anyone else heard about trouble conceiving and maintaining a pregnancy due to Celiac or any other reason related to Celiac. I am not currently looking to get pregnant at all, but I do want to oppertunity later because I would love to be a mother. If anyone has any advice on testing or anything at all either in Western medicine or otherwise I would love to know. Also, if anyone else was told that pregnancy would be difficult for them and is now pregnant or has a child I would love to hear your story. Thanks for reading!

Kylie

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RiceGuy Collaborator
RiceGuy
Posted

Well, sorry that you're have difficulties, but here's a thread which I'm sure you will find encouraging:

Open Original Shared Link

elisabet Contributor
elisabet
Posted

Hello Kylie

I have a son who had so many problems and he is getting better and better.He is on a gluten free diary free and soy free diet.

He is playing flute and loves it,but in a period he said he can not control his fingers and it was considered as neurological problem.We found out that if he gets chick peas he will react in this way.

reduction of sugar it very very helpful too.

best of luck elisabet

TJay Newbie
TJay
Posted

Hi, sorry to hear about your news from the doctor. I was diagnosed with Lupus long before being diagnosed as a celiac. I was told that my chances of miscarriage were very very high. Though I was young, I was worried and my family thought I may never have a baby. After going gluten-free several years later, I lost all of my autoimmune problems. My quality of life is awesome. I came off of the lupus medication. I'm nearly halfway through my first pregnancy and everything looks great. The gluten free diet has not been the same miracle for you. I hope you find solutions. I agree that you should check for other intolerances. I also know a few people who really react to chickpeas (some people react to all legumes). I also know a several celiacs who have major corn intolerances. One family reacts way worse to corn than to gluten. Good luck!

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Sorry to hear that you are having so many problems right now. Please keep an open mind about getting pregnant. I just hate to hear when a Dr puts a difinative limit on someone's life, especially when you are so young. Unless your uterous has been removed, keep positive. People who have been told they will never have children, have given birth. Keep working to figure out what is causing you so much difficulty right now, then when you are feeling a little better look into the pregnancy issue. Take care and feel better

  • 1 month later...
mums the word Newbie
mums the word
Posted
:) Hi look i live in australia and have the same problems as you but im going to tell you never say never i am 15 weeks into pregnancy number 7 with this pregnancy i was carrying fraternal twins but lost one of the babies but happy tp report baby a is doing fine i also suffered a miscarriage a few years ago as well but i have 5 very healthy children none of them have celiac disease yet and my eldest is 19 so i am hoping they never get it but you never know so keep your chin up it is possible to have children but you are are young enjoy your life as much as you can first hopefully your day will come.
mums the word Newbie
mums the word
Posted
:) Hi look i live in australia and have the same problems as you but im going to tell you never say never i am 15 weeks into pregnancy number 7 with this pregnancy i was carrying fraternal twins but lost one of the babies but happy tp report baby a is doing fine i also suffered a miscarriage a few years ago as well but i have 5 very healthy children none of them have celiac disease yet and my eldest is 19 so i am hoping they never get it but you never know so keep your chin up it is possible to have children but you are are young enjoy your life as much as you can first hopefully your day will come.
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  • 1 month later...
6karen Newbie
6karen
Posted

YES, i was told the same with having celiac disease & a bleeding disorder that also required me to take birth control pills cont. So, when i missed a few pills due to the flu-i shocked to be pregnant! For 10 years I thought i could never have a child again. My husband and I were both shocked. Doctors don't know everything about celiac.

TrillumHunter Enthusiast
TrillumHunter
Posted

Many, many mothers have been told that. Take very good care of yourself until the time comes for you.

I was told I would have difficulty becoming pregnant because of my "tilted" uterus but my three kids (in 3 1/2 years) proved otherwise. :rolleyes: I was also very sick and not yet diagnosed with celiac.

ShayFL Enthusiast
ShayFL
Posted

I have neuro symptoms. I do not have MS, but am following the MS recovery diet. I figure anything that heals nerves is what I want. Basically it is: Gluten Free, Dairy Free, Legume Free, Yeast Free and Egg Free

I have plenty to eat and am very hopeful.

Def. look into other intolerances.

sweetheart100301 Newbie
sweetheart100301
Posted

It sounds like what i had been going through over the last couple of years. I would get electrical sensations running though my legs, become very dizzy, forget where i was, my vision would blur, my head would go bye bye, i could pass out for hours without anyone being able to wake me, and i was suffering from such severe pain that i thought i was dying. those are a few of the symptoms that this intolerance cause me, and it was all due to a severe vitamin deficiency it had caused in my body. after three months of extremely high dose vitamins,and switching to a gluten free diet, i actually started to feel like myself again. my advice to you is that if you haven't gotten your levels done yet, do that before you have to spend thousands of dollars just to find out you need a multivitamin.

Lockheed Apprentice
Lockheed
Posted

I was diagnosed FINALLY at the age of 20 with celiac disease. I was told that I would never be able to be pregnant because of the celiac disease, an ovarian cyst I had removed and not to mention a round of cryo-therapy for cervical cancer. I fired that doctor for being the crack pot that missed the celiac disease in the first place. At 23 (just before I turned 24) I accidentally became pregnant (my husband and I were already married, but we had JUST married so we had planned to wait a little longer before even consulting a dr about trying). My pregnancy was fantastic. I had no morning sickness. Because I'm celiac disease I know I eat better than most pregnant women. I beefed up on fruits and veggies and tried to eat fruits with the skins on (like apples and pears.. I was forever craving bartlett pears.. not Danjou but Barlett). Salads were another big kick and of course steak. My doctor said I couldn't have had a healthier pregnancy. Mid way through the pregnancy my doctor did send me to a high risk pregnancy specialist in Houston, Texas to check and make sure that he wasn't missing anything (his concern was depriving the baby of nutrients because of my celiac disease). The doctor there said it was a total waist of time for me to be sent at all and that as long as I'm following my diet and as long as I feel good, then things are probably fine. I had a perfect natural delivery with no complications (don't get me wrong, still the most painful experience of my life!). My son is healthy except that when we feed him wheat cereal he vomits and develops eczyma.. so I guess he's probably a celiac too. But he just turned 1 so it's way too early to torment him with testing. Just be kind to yourself and take good care of yourself and pay attention to what you eat and when you get down just remember that most people are killing themselves with the junk they stick in their body, but you are not and keep on going. And most doctors don't have a clue about celiac disease. They are just doing what they think is right, and like parents, sometimes they get it wrong.

kbtoyssni Contributor
kbtoyssni
Posted

Did he have a reason for telling you that you won't be able to get pregnant? Seems like he's just saying that because of past problems and not for an actual current reason.

purple Community Regular
purple
Posted
It sounds like what i had been going through over the last couple of years. I would get electrical sensations running though my legs, become very dizzy, forget where i was, my vision would blur, my head would go bye bye, i could pass out for hours without anyone being able to wake me, and i was suffering from such severe pain that i thought i was dying. those are a few of the symptoms that this intolerance cause me, and it was all due to a severe vitamin deficiency it had caused in my body. after three months of extremely high dose vitamins,and switching to a gluten free diet, i actually started to feel like myself again. my advice to you is that if you haven't gotten your levels done yet, do that before you have to spend thousands of dollars just to find out you need a multivitamin.

and maybe a new doctor too!

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