getting somewhere (part 1)

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I have not blogged for a long time!  This is a hobby I have had to set aside for a while, but I really want to write down all that I’ve been learning in the past couple of months.  I hope that maybe my journey can help others out there suffering from infertility or miscarriage, and I also want to give thanks to the Lord for leading me to where I am now.  I am finally, finally, finally getting some answers.  And I believe that God led me to them just when I was ready for them, and not before.

Back in June, when we lost our baby at 16 weeks gestation, I began to feel like my miscarriages were more than bad luck or a fluke.  I had miscarried twice at 16 weeks and once at 8 weeks.  I experienced new anxieties, all tied up in the question, “How many more times is this going to happen?”  And I couldn’t shake the feeling that something more was going on in my body than my doctors had the expertise to find.  My own OB was almost speechless when this happened again.  He felt so bad.

A month or two after the miscarriage, I went to see a genetic specialist in Pittsburgh, at West Penn Hospital.  My OB had ordered a karyotype of my blood and my husband’s blood, which is just to say they looked at our chromosomes to make sure they were normal.  (It is purely a visual examination of the layout of the chromosomes to make sure they are all in the right positions and don’t contain extra material… here’s the Web MD definition.)  The karyotype was normal for both of us, which is good.  If we had been found to have any translocations or other abnormalities, the news may have consisted of information such as, “You are likely to have miscarriages 50% of the time,” or, “You are likely to give birth to children with mental retardation or genetic disorders.”  So having normal chromosomes was a very good report.

The specialist at West Penn tested me for about five other things that can cause miscarriage.  (Metabolic factors, blood-clotting factors, etc.  I wouldn’t understand the papers even if I looked at them now.)  All were normal.  Again, good news, but it left me with nothing to do but hope things would be better in the future.  He mentioned that 2/3rds of miscarriages in the first trimester are due to chromosomal abnormalities – and even though I was at 16 weeks, the babies sized at about 13 weeks, right on the cusp of the 1st trimester.

I was also having very severe bouts of postpartum anxiety, starting just a few days after the miscarriage, getting worse about two weeks later, and lasting for a total of two months before medication helped control it.  I wrote about this extensively before.  It was a nightmare, but God delivered me from that darkness, and I can say I am a different person because of it.  I often felt like my life was going to be awful forever… but it’s not, and I’m OK, and when I live my life every day and I realize how normal and happy I feel, I thank God that I am not in that place anymore.

By the way, why do you only hear about postpartum depression, but not anxiety?  The two problems are so inter-connected, I am surprised more people don’t discuss anxiety.  But anyway… off subject.

The whole summer passed, fall came, and then my friend told me about another fertility specialist in Pittsburgh, Reproductive Health Specialists.  I had heard of them before, but never called them because it seemed like they focused more on infertility than recurrent miscarriage.  But I decided to give it a try.  They saw me in December.  Again, no news.  They didn’t order any new bloodwork, but did order a sonogram to make sure my uterus looked normal.  It was.

I asked every doctor I visited if they believed something could be wrong nutritionally.  I wondered if they had any thoughts on the fact that I felt really sick with my babies I lost, but not sick with the ones who lived.  I asked if it was normal to feel really hungry all the time, and not be able to quell the gnawing in my stomach.  Sometimes it felt like I had a tapeworm or something!  I had this sense that my body was not getting enough nourishment.  Of course, every doctor told me it is fine to be hungry and sick, and that it’s a good sign to have nausea and vomiting.  (Unless you’re me – it seemed to be a bad sign for me!)

My doctor at Reproductive Health Specialists talked with me for a long time and explained that there is still so much we don’t know about conception and embryonic development.  She actually used the word “crude” to describe our knowledge and data on the subject!  While that could sound sort of hopeless, it actually comforted me.  It helped me have peace with not having answers.  She reassured me that I wasn’t doing anything to harm my babies, and that many women are like me.  Even though I am a rare case in my small town and in my doctor’s community practice, I am not unlike many women who come to her or who go to other places like Magee Women’s Hospital for help.  Many women, she said, just don’t get answers.

The doctors also talked to me about my thyroid, which tested as normal, and about progesterone, which couldn’t be a problem in my case because I lost my babies too late.  Progesterone problems tend to cause miscarriage earlier in the first trimester.  There were many other factors we discussed, but they ruled them out for a variety of reasons – one being that I’d had two healthy, uncomplicated pregnancies and given full-term births to healthy babies.  I also asked about a gene mutation called MTHFR that a friend told me about.  It affects folic acid uptake if you have it, so child-bearing women need a special form of folic acid to bypass it.  If this special folic acid is not given, the woman is more likely to have a baby with neural tube defects (spina bifida, anencephaly, etc.) or to miscarry.  For a reason I now cannot remember, I was not tested for the MTHFR mutation.  It may be that I had healthy babies, so they figured it wasn’t a factor.

ImageAre you bored of reading yet?

Well, here’s the part where it gets exciting.  At least to a science-loving person like me with a vested interest in not miscarrying again.

It’s funny how life pieces together sometimes.  Many things in life we wouldn’t choose, but they happen to us.  And it’s like having a big detour put up in the road you were on.  Taking the detour means you’re inconvenienced and you’re upset because it’s not the way you wanted to go.  Sometimes, the re-routing is terribly painful or dangerous.  Sometimes it just means using the bathroom at a different Sheetz.  Either way, your path is different and you meet people you wouldn’t meet otherwise.  But enough rambling.

I say all this because even as recently as February, I was still having minor problems with anxiety.  And I also had a very brief pregnancy that again ended in miscarriage.  My search for answers began again.  I would not have kept searching if these two things weren’t factors.  Different Sheetz.

So I ended up hearing about this place called Medical Wellness Associates.  It’s not far from home for me, but what’s going on there is revolutionary.  It is absolutely the answer to prayer I was hoping for!  All my questions about “something nutritional” and my curiosity about underlying causes to health problems were about to be answered.  The facility was founded by Dr. Martin Gallagher, who is a Medical Doctor as well as a Doctor of Chiropractic.  They practice what is known as Integrative Medicine, which essentially means they blend medical practices from many parts of the world, including Eastern (like Chinese) and Western (as in what we know as normal in this country.)  They treat patients on every spectrum of health – whether you’re just fatigued all the time, or have diabetes, autoimmune disease, cancer, or autism, they have approaches to health for just about every person.

So I met with one of the doctors in the practice, told him my story, told him my current symptoms, told him I was really interested in health and nutrition and that I was willing to try anything at this point.  (I should include here that I continued to read all I could about nutrition, and began making changes to get our family on a more whole foods diet.  I never got rid of the feeling that there was something in my body that needed attention and that the answers may be in food choices.)  My new doctor listened well, had lots to say, and made a few suggestions for tests to run.  I agreed to all of them, even an in-house food sensitivity test that cost about $250 out of our pockets.  It was well worth it to me to finally be on this track!  He also ordered a full work-up on my thyroid, a women’s hormone assessment, a vitamin D hydroxy test, and a test for the MTHFR gene mutation.

I left that day feeling so happy.  This place was right up my alley.  They approached health from a truly holistic standpoint, and were taking a thorough look at just me and what was going on in my body.  I had asked my OB if he could check hormones before, but he didn’t see the need.  I had asked my PCP’s office if they could have my vitamin and mineral levels checked, but it was clearly a very strange request and wasn’t something they were in the habit of doing.  Nobody could quite seem to dig deep enough to find underlying causes for problems that were plaguing me for many months and affecting my quality of life … and affecting pregnancy outcomes.

I had to wait three weeks for the results, and in the meantime, decided to give a gluten-free diet a shot.  I decided this for several reasons. One reason was I had read that anxiety and depression are linked to the gut.  As in, they are affected by what we eat and how healthy the bacterial flora of our intestines is.  I had also read that wheat is linked to anxiety and depression.  Now, I had no interest in going wheat-free when I first read those things.  But I had slowly come around in my thinking, plus I had recovered from the grieving stage of our loss and thinking about that change was easier to manage.  Yet another reason I wanted to try giving up wheat/gluten was that I DID often notice I felt strange sometimes after eating it.  Sometimes it could just feel heavy and hard to digest; other times I felt my pulse increase, like it did during anxiety, but on a less intense scale.

When I got home that day, I wanted to look up the articles I remembered reading about wheat and depression, and ended up finding articles about gluten sensitivity being linked to miscarriage and infertility.  What??  It was huge news to me.  Kind of like I was an investigative journalist who just found some dirt on a Congressman.  I really felt a sense of breakthrough – even though the information wasn’t “confirmed” by my doctor yet, it was right there on a few medical sites and written by more than one doctor.  I also bought Living Gluten-Free for Dummies and the foreword to the book, written by Dr. Alessio Fasano of the University of Maryland School of Medicine, mentions infertility and miscarriage as two of the long-term problems related to celiac disease (which is full-blown intolerance to gluten, the protein in wheat, barley and rye.)  While I was pretty sure I didn’t have celiac disease, I was starting to wonder if I at least had a sensitivity to gluten.

I kept a food journal and adjusted my diet so I wasn’t eating any wheat, barley or rye.  It was an experiment, and it had positive results.  I stopped waking up early in the morning with jitters.  I didn’t have any problems with anxiety.  If ever I broke from the diet, I noticed problems – like a stomachache or a jittery feeling.  It wouldn’t happen right away, but usually the next day — a delayed reaction, just like you would expect with a sensitivity.  (An allergy, in my understanding, would produce immediate discomfort.)

Well, I think I will end this post here.  I’ll have to do a Part 2, I think.  Thanks for reading – I’ll be back soon!

Sources:

http://articles.mercola.com/sites/articles/archive/2000/08/06/wheat-miscarriage.aspx

http://www.everydayhealth.com/blogs/the-/infertility-and-miscarriage-associated-with-gluten-sensitivity

http://articles.mercola.com/sites/articles/archive/2011/07/04/can-eating-this-common-grain-cause-psychiatric-problems.aspx

CLICK HERE FOR PART 2.

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About Sara

I am a 30-something momma of two with a history of recurrent pregnancy loss. After receiving no answers from "regular" fertility specialists, I discovered that there is a pioneering field of fertility testing and treatment called Reproductive Immunology. The American College of OB-GYN's still does not recognize this field, but I felt strongly that women needed to know there might still be answers for them. I started a website to inform and encourage others to be their own advocates.
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