Hi all! Just wondering if any of you ladies had completely healthy pregnancies before a Hughes diagnosis.

[Ablatz]

I'm experiencing all sorts of interesting symptoms after a missed miscarriage. At 8 weeks an ultrasound measured me at 6w3d with a strong heartbeat, then two weeks later measured 8w with no heartbeat. I'd been having headaches and tingling, irregular heart rate, dizziness, random gastric flare ups etc. After the d&c there has been horrible head pain, tinnitus, vision issues, photo phobia nerve zaps and numbness in extremities, amoung other issues. I have a 3 and 5 year old after completely normal pregnancies, so a friend's suggestion to look into Hughes Syndrome was brushed off by my Doctor who asserted that either you have it or you don't, and because of my prior healthy pregnancies there's no need to test for it. Just wondering if that's a hard and fast rule! Looking for SOME kind of clue to what is wrong with me

[GinaD]

Both of my pregnancies were fine. My coagulation symptoms started 2years after my 2nd child was born. My cardiolipin antibodies went sky high by 2000, when my youngest was 16.

( of course, my antibodies fell to normal after I went gluten free and now the newest consultants looking at my case question whether I ever really had/have APS.)

But the cardiolipin antibodies were up there, AFTER my 2normal pregnancies.

[babe123 in reply to GinaD]

Hi Gina, I m glad you posted that you went gluten free and your ab went down. Can I ask how long gluten free before they came down? Dairy free suppose be good but that's hard to do.

I gather being strict gf was answer love hear from you on this. Chet soon

[GinaD in reply to babe123]

1 month into my gluten free diet I was given a standard CBC, and, to everyone's shock, my hemaglobin and hemetocrit were normal for the first time since I WAS 4 YEARS OLD! Based on those unexpected results, my usually skeptical doctors sent me to a gastrointerologist for a GTT test (gluten trans - somethingorother titer test.) That test was negative, which would suggest I did not have gluten sensitivity. But then, a few weeks after that (which would be @ 8 weeks after going GF) I was given a standard rheumatololgy assay -- and the IGM, IGA were both normal (for the first time since they began to be measured regularly, which would be within last 5 years) and the cardiolipin IGG went from sky high to "borderline high."

And thats when the GP, the gastro, the rheumy, the heme all agreed that I had some sort of gluten sensitivity and I should stay GF.

I went back to my alma mater, Vanderbilt University, with a friend when her high school age daughter was thinking of attending. I went to Furman Hall, where I had taken a lot of courses from the Classics Dept, which in my day, was located on the 3rd floor. The elevator was reserved for handicapped students. (So the joke was -- take a classics course and meet your weekly exercise targets by climbing the stairs to class!)

I remember exactly which landings and steps I had to stop and pant on good and bad days when I was supposedly, a young, healthy 27 year old. On that trip, at age 55, I sprinted up all the steps without stopping to gasp once! Thats how anemic I was in my youth. Amazing!

[babe123 in reply to GinaD]

Hi Gina, that's amazing story that your Immunoglobulin essay went normal going gf. Same my IgM is low and my coeliac screen is negative but my mother is negative and is gluten intolerant as she gets IBS when eats it and allergy test stated allergic to wheat.

She has low thyroid so I suspect I have a genetic link to APS/lupus but she won't get tested and has all symptoms.

It be interesting going gf if my IgM ab correct themselves. I think my IgG have slightly come down but haven't been totally gf.

Keep in touch see how our levels fair. Yes I too suffer anaemia from my low IgM levels that I needed an infusion last year. As a teen had same, couldn't run up set stairs . It has been gluten causing the anaemia.

Keep in touch. Pm if ever wish.

[viv112 in reply to GinaD]

hi Gina, I'm interested to read your post because my GP is interested in my low ferritin/haemoglobin and I'm having monthly blood tests. I think she's concerned that my daily aspirin might be causing inflammation in my stomach. Anyway she prescribed 3 months of ferrous fumerate to increase my iron. I took the tablets for 2 weeks and started getting side effects. I checked the ingredients and they contain maize starch and I react to corn. I asked for a substitute and got ferrous fumerate liquid....but 5 days after and I reacted, and when I checked I read it contains liquid glucose which is made from corn starch! I asked the GP receptionist if there's an iron supplement suitable for coeliacs and she said that coeliacs should be able to take the ferrous fumerate liquid! So they haven't offered me an alternative. Any ideas for a gluten free iron supplement I can buy from the chemist? I know I'm sensitive to corn/maize, not sure about wheat but I don't eat bread any more. If gluten is affecting my iron do I have to eliminate it completely? Sorry this is so long!

[GinaD in reply to viv112]

Sorry. I have no idea. Corn and maize, although grains, do not contain the protein gluten. Which does not mean you can tolerate them, but would explain why your doctor thinks you should tolerate them. I'd talk with a pharmacist if I were you.

[Tinythepanda]

Both my pregnancies were before diagnosis. However I had severe pre eclampsia and son was a growth restricted baby.

My second was ok apart from very high bp from about 28 weeks. I got to full term with my first and then 37 weeks with my 2nd.

[0111]

Hi yes Ive had 3 beautiful children. All good weights, no problems. I wish you all the best. Just try not to worry too much, and enjoy every minute.

xx

[Ablatz in reply to 0111]

Well it's hard not to worry a little when struggling for a diagnosis, but I'm definitely trying! No use moping around when the kiddies want fun. You had your babies before you had any idea you had APS?

[PepperT]

I had three miscarriages then two normalish pregnancies but both babies were early and growth restricted. I obviously had aps then both wasn't diagnosed for 22 years later

[Bat_friend]

Sorry for your loss Ablatz. I hope you can get some answers either way.

[Good4u]

I had normal pregnancy, my daughter was a little baby. Not premature. I was 29 when I had her, I'm now 44. After checking medical records & reading my diaries which started when I was 13, it is clear my "autoimmune symptoms" started in childhood. From 25 I start to get the occasional loss of vision. My symptoms intensified after my daughters birth. It wasn't until I was 41/42 I got correct diagnosis of aps. It seems if you have normal pregnancy then aps is ruled out. Not the case. However I agree with ApsnotFab administrator. Look at family history, my grandma has rheumatoid arthritis which was a clue for me. Or as stated it could be something else. The bottom line though, having had normal pregnancy does not rule out APS. Best of luck. Carmen from perth, australia.

[ltsmagic]

Yes! I have had 2, 1st was born a month early, but very healthy. My 2nd was a home birth, I wasn't diagnosed till after he was born. I had no Idea I had HS, till I had my Stroke. Dr.s were so thrown off because of my healthy Boy's.

[Salty]

Dx w APS a few years after two normal pregnancies.

[Ablatz in reply to Salty]

Did they have hearty birth weights?

[Lure2]

I had two normal pregnancies. I am now 70 but I think my APS started around -92. 15 years after my second child. She came with her feet first (one foot down and the other in "spagaate" pointing upwards.). I had to have Caesarean secton (looked it up in my Dictionary)

Kerstin in Stockholm

[Ablatz in reply to Lure2]

Well that must have been a challenge! Were they both normal birth weights? Mine were both 8 lbs, and the first arrived at 37 weeks and the second at 38!

[Lure2]

I Think I had no antibodies at that time but the last one was a little bit "special" They first tried to get her fixed but she did not want to have her head down. They were both ideal weights at normal.time.

That was in the past but i wanted to tell about the last one named Karin.

Best wishes and thanks for the interesting question. Kerstin

[panda60]

My boys are 29 and 32 so were teenagers when I was diagnosed. Recall being unwell through most of my first pregnancy with a period of horrendous migraines. Son came a month early but was a good weight at 6lbs 10ozs. Can't remember much about the second one but was running around after a 2 yr old!

[sydney_mrfox]

First pregnancy was a miscarriage at 15 weeks and second stillborn at 24 weeks (due to early onset of severe preeclampsia). My Lupus (SLE) symptoms (joint pain) was triggered in week 17 of second pregnancy resulting in diagnosis of SLE and also APS. So my autoimmune disease affects me mostly during pregnancy (before and after I have no external symptoms - however I've only been diagnosed in the past 12 months - no prior health issues). I am now 13 weeks into my third pregnancy and the APS is being managed by daily clexane (40mg) and aspirin (150mg). Normal fetal growth so far. Specialists have said that I have a high risk of developing preeclampsia again but hopefully in the third trimester this time which gives the baby more chance of survival.

30 year old from Sydney, Australia

[babe123]

Thanks ladies for your inspiring pregnancies with APS.

I agree it's genetic related as my family have a strong autoimmunity history..