In my quest to figure out why...

United States
November 26, 2007 10:47pm CST
Some of you know of my history of recurrent miscarriages and my never ending quest to find out WHY they keep happening. Last May I found a disease - Celiac - that explained all my symptoms bowel/stomach issues AND my miscarriages too. Well I got referred to a gastrologist and had a endoscopy scheduled to do biopsy's to test for Celiac disease or whatever else they might find if that wasn't it. Well the week before I was to have the endoscopy I found out I was pregnant (as only about 3 of you knew). And things seemed to be better as I stopped eating gluten (people with Celiac disease has a gluten intolerance). I really had myself convinced that that pregnancy would be successful. We even told my family at 14 weeks. Then on July 11th (about 3 days later after telling my family) - yep a day that was suppose to be really exciting for me as Harry Potter and The Order of the Phoenix opened in theaters and I'm a HP freak - I found out our baby had yet again died. Well I FINALLY rescheduled my endoscopy and have gotten the test results back. I don't have Celiac disease BUT I do have chronic erosion gastritis, something to do with reflux (can't remember exactly what she said), and H. pylori - a serious bacterial infection of the stomach. I have already been treated for the H. pylori but have to be retested for it to make sure it's gone completely as it sometimes take more than one treatment. The bad thing is they're is only 2 antibiotic cocktails that treats it and I am allergic to both. I didn't know I was allergic to one until I took it - the other we already knew I was. My doc and I decided that considering the lack of other options and the fact that it was only a rash I would complete the treatment unless some other reaction occurred - but thankfully it was just the rash that spread. So we're really hoping that it's gone :) [Back story a bit - the nurse practitioner I see in that docs office use to be the nurse at my OBGYN's office and knows my history of miscarriages. Not to mention that she also use to be my sister-in-law's sister-in-law.] I was asking her if it could be the reason I'm having miscarriages (she said she can't say for certain but she's never read about it because it usually can not live outside the stomach - though I've read that it can on rare occasions spread to the uterus causing recurrent miscarriages) and if I could have had it for years (which she did say yes). I also ask her if it would explain away my fatigue issues (yes) and about my seemingly poor blood circulation (no). I told her I've been tested for poor blood circulation but it came back that my blood coagulates normally. Yet my limbs go numb without doing anything (pressure on them, ect) to cause it. And I can't hold my hands over my head for more than a couple of minutes without it being painful - really painful. As I was researching H. pylori on the internet I came across a B-12 deficiency that could very well explain a lot of my symptoms INCLUDING my miscarriages and the blood circulatory thing. I ask her if it would show up under normal anemia tests (its a type of anemia) and she said no that it's a different test altogether. I told her that I'm always pale (as she can see duh) and my anemia tests always come back normal. Plus the only thing the tests come back on the baby's are that the blood seemed to not be flowing enough or something to the baby - even though I've been on baby aspirin the last several pregnancies (that could have further aggravated my gastritis that I didn't know I had). So she said we'd do some B-12 tests and some more test like protein, iron, ect. And she may refer me to a hematologist (blood doctor). She - like me - says there as got to be a reason these miscarriages keep happening. And she thinks it might be worth the while to go see a hematologist to see about further testing. Even though - like she knows - I've been extensively tested on normal things that causes recurrent miscarriages (lupin, anti lipids, ect). Hopefully too I will make it up to Louisville one of the days to see another high risk OB/fertility specialist. It's hard to schedule a convenient time because they only allow certain times for new patients and I want my hubby to be there when we go. He feels it pointless because we've seen someone else about it before. But I told him doctors experience different things and it wouldn't hurt to see what they've got to say. My next doc appointment is in a month. But as soon as my test results come back I know she'll call to tell me what the results are. She's great about that. I haven't taken them yet though because well...the one to check if the H. pylori is gone requires something a little extra if you catch my drift. So when I take that in I'll have the blood work done too. But for some reason I feel that much closer to finding an answer. Maybe it's just eliminating another thing...or maybe it's her enthusiasm on it too. So - as some of you say 'to make this a real discussion' have any of you had any similar experiences : whether it be with gastritis, recurrent miscarriages, H. pylori, ect? Or know anyone with them? Or have or heard of anything else that I might read up on to be tested about to end my quest once and for all? As an after thought for those of you who don't know me. I haven't ruled out adoption. I'd love to do that regardless of if I ever have one of my own - but I so desperately want my own child too for loads of reasons. Thanks in advance for all responses :)
3 people like this
5 responses
@raychill (6525)
• United States
27 Nov 07
Wow. That was a lot. That I didn't know and I'm sorry to hear about all of that. It sounds bad. I don't have any personal experiences, except I am aenemic. I don't have insurance so I never go to the doctors and I always think to myself, I'm probably dying and I'll never know. Oh how having insurance would be nice. A friend of mine had some weird rare disease that's the opposite of HIV. I can't remember what it's called and that's the only part I can remember. It's an auto immune disease that works the opposite way of HIV. Anyway, she had it when she was a teenager and she's been fine since (she's 30 now, had it when she was lik 14/15) but she is always really scared that something like a baby will cause it to come back. So she never wants to have a baby simply because she's scared that this disease will come back, because really it's not gone, it's just in remission. Your story also reminded me of this tv show called "Mystery Diagnosis." where someone has some random problem and they or a family member fights to figure out what's wrong when no problem seems to be diagnosed. I hope everything works out, however that may be.
1 person likes this
• United States
27 Nov 07
Thanks sweetie. I have heard of that TV show. I had actually been thinking or wondering if one day they'll be medical publishings about me and my case. My first and most beloved OBGYN (she moved and I was heart broken) said she just didn't know what to do, wanted to tie my tubes because she has done everything she knows to - and used the phrase "thrown the book at you". I'm guessing that like my first name - my situation is pretty freaking rare.
• United States
27 Nov 07
LOL - I just might! I won't care as long as I get my baby :) My sister wanted to call up Montel and have me on there to hopefully get funding for adoption. But I don't think I'm ready for all the public retelling of my story. She (my sister) LOVED Rescue 911 when we were kids. That's why she became a paramedic! I have heard of that auto immune disease...actually I think I might have been tested for it.
@raychill (6525)
• United States
27 Nov 07
Ha ha. I was in a really bad car accident when I was a kid and I always thought that it should be on Rescue 911! It never was though... but I didn't know at the time (I was only 7/8) that you had to actually submit your story! My friend who had the weird auto immune disease was put in a medical journal somewhere while she was in the hospital. Who knows, you could end up on tv somewhere!
1 person likes this
@Netsbridge (3253)
• United States
27 Nov 07
GnosticGoddess, I am sorry to hear about your problems. While I am aware that stress will cause several problems with reproduction and in our lives, I have a very simply ideology about diseases and illnesses: I strongly believe that diseases and illnesses (stress included) are the result of our eating habits, and therefore believe that there is no illness or disease that cannot be cured with proper diet and some form of daily exercise. GnosticGoddess, I would advise that you learn to relax, rest and pay very close attention to your diet. And since your problem is not with conception, I would advise that you and your husband consider in vitro fertilization for the purpose of a gestational surrogacy. And for a gestational carrier, I recommend a trusted relative or a contracted carrier through an agency in a very explicit contract. I wish you and your family the best. Below is a link to some basic information on healthy eating: Think Healthy - http://www.geocities.com/ulafrique/healthtips.html
• United States
30 Nov 07
GnosticGoddess, with your mindset, I think that you need to seriously look into gestational surrogacy.
1 person likes this
• United States
28 Nov 07
I agree that most of our problems is eating habits and stress. And I do have a very poor diet - though when I'm pregnant I always step it up. There are several problems with surrogacy and in vitro fertilization. One is I don't have 20-30 grand - esp when there is no guarantee that it will take the first time. I'd rather adopt. One of the reasons I want my own child so badly is the entire pregnancy experience. And if I'm going to be spending that kind of money then I want to be sure that I'll be getting a baby out of it. PLUS we aren't 100% sure it's not chromosomal yet. Thanks for your kind words and your help :)
• United States
1 Dec 07
Sorry but I'm not trying to be rude but I just said that I couldn't afford it.
@MsTickle (25180)
• Australia
1 Dec 07
I can readily imagine how very much you want your own babies and if ever anyone deserved to have littlies, you do. You have worked hard and suffered and damnwell earned the right. I'm talking those of your own too, not adopted kiddies. However I sense your strength and determination and I feel that your yearning to have a child will eventually come to pass. I've always been strong and healthy and my two pregnancies went along easily with no complications at any time. I'm unable to steer you in the direction of any information, all I can do is send you best wishes for your good health and an eventual successful pregnancy. In the meantime, stay as positive and hopeful as you seem to be. If it's meant to happen, it will.
• United States
1 Dec 07
Thanks sweetie! Those were very kind words. Thanks so much for the support too :) Yeah it's funny that I'm apparently as healthy as I am (aside from the infection) yet I can't keep babies alive...strange LOL.
• United States
27 Nov 07
I am sorry to hear about all of your troubles hon. I hope you find at least an answer if not a solution. I have only been through one miscarriage and that was hard enough, I can't imagine how hard it would be to go through that again and again. I wish I could help with advice but all I have to offer is my good wishes and prayers for a better future. Good luck hon!
1 person likes this
• United States
28 Nov 07
Thank you sweetheart! And I certainly wish these problems on anyone. Thankfully recurrent miscarriages are very rare - just sucks that in the one thing I actually want to be normal in I'm not.
• India
27 Nov 07
Hello GnosticGoddess, I am very sorry to hear your story. As far as my knowledge is concerned you are suffering from a very minor problem and that is "formation of weak endometrium". Women with weak endometrium always have this problem of miscarriages. You may be knowing this, still I would like to explain here to you and also for the benefit of others who have this problem, is that everymonth a endometrium forms and get it self ready to receive a fertiled egg in to it and when it gets fertiled egg, it wont form again until the fertiled egg takes it's shape from foetus to a baby i.e. untill delivery.When the endometrium does not receive a fertailed egg it will break and that is called mensturation. In cases of weak endometrium, the endometrium carrying the fertailed egg may break any time say even after 2 or 3 months, unable to bear the weight of the foetus and this is called miscarriage. There are medicines to strengthen the endometrium, but more than medicines a total bed rest from the 1st day of stopping of mensturation up to 6 th month is necessary.This will enable anybody with weak endometrium to carry the baby upto delivery. You should not go out,carry weights, do heavy jobs and not even walk fastly. Other than this no other things explained in your posting are responsible for your miscarraige. Please consult your doctor and ensure that this time you have a baby and I wish you a healthy pregnancy soon.
• United States
27 Nov 07
Nope that's not what I have - but thanks for trying. Every time but one my cervix has always been closed tightly. Just the baby's heart stops beating for no apparent reason. I've had several D&C's and several labor inducements. A lot of people that don't know the entire story - and that was my fault for living that bit out - think what you thought. I've had 7 miscarriages. Thanks for your kind words and thoughts though.