Going Gluten Free

When I started working with my acupuncturist, in fall of 2008, she suggested that I try three weeks with no dairy, no wheat, and no sugar. I've always had a sensitive stomach, and I was having energy issues in the afternoons, which led me to have a sweet snack as a pick-me-up.

I knew I was lactose intolerant, but love bread, love to bake, and eat a ton of carbs. Oh, and I have a huge sweet-tooth.

And did I mention these three weeks fell between Thanksgiving and Christmas?

Nonetheless, I did it. I got to know the raw foods aisle at my local Whole Foods (which, by the way, I haven't visited since) -- specifically for 'no sugar' options that helped manage my cravings for something sweet.

I didn't notice feeling any different during the three weeks on the restrictive diet, but afterwards she suggested I add the foods back in one at a time. And what do you know, when I ate wheat, I felt crappy and my stomach acted up. (Which for me usually meant cramps and an urgent bathroom trip -- gluten intolerance manifests differently for different people.)

So I jumped into a gluten free lifestyle. At first, it was hard, because we hadn't found good substitutes for the wheat products that we knew and loved. I went through our kitchen and pantry and threw out or donated everything that I couldn't eat. Which is a lot. Most people don't realize how much food contains wheat-based or gluten-containing products. Soy sauce, and any products containing soy sauce are out. (You have to use wheat-free tamari, and just to make it more fun, not all tamari is wheat-free.) Wheat, barley, rye, all out. Oats -- questionable, because they don't contain gluten themselves, but are often cross-contaminated in processing. Now I buy certified gluten-free oats from Bob's Red Mill. Pasta, couscous, bulgar -- all creative ways of using wheat.

I started trying gluten free products at Whole Foods and doing research online to identify quality brands. I also found local gluten-free restaurants and bakeries. Living in the San Francisco Bay Area, I get to benefit from a pretty high density of alternative bakeries and restaurants, which helps, although I'd love to be able to eat Chinese food other than P.F. Changs. (Don't get me wrong, I love the fact that they have a gluten free menu, and it's not bad, but it's also no where near the quality of the Chinese food that I used to be able to eat.)

I also started investigating gluten-free baking, and lucked out with my first cookbook purchase: Annalise Robert's Gluten-Free Baking Classics

I ordered my special flours through Authentic Foods and noticed that they sell gluten-free pasta. And not the rice-based pasta that Whole Foods carries that is slippery and has no taste. Corn pasta that looks and tastes like regular pasta! I order it in bulk, and recommend it to everyone I find out is gluten free.

(You can also order it from Amazon in a wider selection of pasta shapes/sizes: Le Veneziane Italian Gluten Free Corn Pasta)

Also in the bread area, I have to recommend Udi's which is available in many Whole Foods and can be ordered online. Their white sandwich bread is the best facsimile of regular wheat bread that I've found, and their blueberry muffins are awesome. Very high quality products.

The Whole Foods Gluten Free Bakehouse products are pretty good. I like the hamburger buns, although they're considerably more dense than a wheat-based bun. More like a biscuit or a scone, but the flavor is good. The Prairie Bread is good toasted.

There are some fabulous gluten free bloggers out there, who post some really amazing recipes. My favorites are Gluten-Free Girl and the Chef, Tartelette, and Cannelle et Vanille. Note that the last two haven't always been gluten-free, so some of their older posts may use regular flour.

I want to add a note about the difference between gluten intolerance and celiac. Celiac is an auto-immune disease where eating gluten causes the body to attack itself. People with celiac need to avoid all gluten, and frequently rely on gluten-free certification to make sure the levels are below a certain maximum. People with gluten intolerance have a wide variety of symptoms, and are always gluten intolerant to varying degrees. However, just because you don't manifest symptoms doesn't mean it makes your body happy! When I started going gluten free, I still occasionally indulged in a croissant from my favorite patisserie. But then when it became clear that my infertility was linked to an overactive immune system, I really went as completely gluten free as I could.

It helps that my husband and I mostly eat at home, because restaurant food can be challenging. That said, there are lots of options. I find Thai food is easy, because dishes tend to use fish sauce instead of soy sauce (always good to ask, tho). sushi is also easy, particularly if you bring your own wheat-free tamari -- you'll have to avoid anything fried (tempura/karaage). Pizza is getting a lot easier -- many pizza places are now offering gluten-free crusts (for a premium, naturally), and there are some good pre-made crusts for making pizza at home. The best I've found is Rustic Crust Gluten-Free Napoli Herb -- the website has a store locator and you can also order online. Mexican is easy -- just make sure to ask if the tortillas are flour or corn -- usually burritos are made with flour tortillas. In & Out is the best fast food choice: if you ask for your burger protein-style it comes wrapped in lettuce instead of a bun. And, if you're very sensitive to gluten or have celiac, their french fries are fried in oil that doesn't fry anything else (which isn't true at most other fast food places).

High end restaurants are more and more educated about gluten intolerance (again, I benefit in part from living in the Bay Area). When you make your reservation, let them know that you're gluten intolerant, and ask if they can accomodate. And at a restaurant, let your server know and ask them to confirm with the chef if there's any question as to the ingredients for a dish. (Sauces and soups are particularly challenging, as flour is often used as a thickener.)

The first 3-4 months of going gluten free are challenging, because you have to rethink all your patterns around food. But if you do in fact have an intolerance, it's so worth the effort. It turns out I don't have a sensitive stomach -- it's just sensitive to gluten! Traveling is so much easier and less stressful, and I know my body is happier.

Please leave any specific questions about gluten intolerance in the comments and I'll do my best to address them!

Our story

My husband and I got married in March 2007, and I went off the pill in July 2007, after long conversations about whether I was ready to interrupt my career if we got pregnant immediately. Hah!

I'd been on the pill for 16 years (age 16 to age 32), and it took about 6 months for my body to figure out what a 'normal' cycle should be. Turned out that my new cycles were 32-33 days long. When I did research and started doing ovulation predictor kits, it also turned out that my luteal phase was usually about 12 days, which is short.

In August of 2008, we figured it was time to get some medical investigation started, so we went to a RE associated with the medical clinic where my primary care doctor is located. She ran some of the basic tests, and they came back normal. I had a HSG done, which was unpleasant (actually, the HSG was fine, the cramping afterwards sucked), also showed normal. My husband's sperm count, A+. My hormone levels, all in normal levels.

I started going to an acupuncturist who specializes in infertility around November of 2008. She suggests I try three weeks of no wheat, no dairy, no sugar, and the three weeks fall in between Thanksgiving and Christmas. I survive nonetheless, and while I didn't notice a change during those three weeks, as soon as I have wheat I feel like crap. I go completely gluten free starting at the end of December 2008.

We started Clomid + IUI cycles in January of 2009. Clomid sucks -- I get horrible hot flashes in the middle of the night -- but I did respond to it. No luck. After 2 cycles, the RE re-runs the hormone levels, and my FSH level is high (around 30). She tells us we should go straight to IVF because the high FSH level indicates poor ovarian reserve and it's our only chance to get pregnant. We fire her.

Well, we do. We think it's stupid to go straight to IVF without understanding why we're not getting pregnant. After all, $10-15k/month is a lot of money to throw away if you're not addressing the fundamental issues. We also re-run the hormone levels, and my FSH is still slightly elevated, but more like 9, and we suspect the 30 may have been due to Chinese herbs.

I get a referral from a friend at work for a doctor that he raves about (and who helped him and his wife get pregnant after infertility). We go see the doctor for an initial consultation in April 2009. The appointment is at 2:30 and we don't get in to see the doctor until after 4. This is the sort of thing that infuriates my husband, but we like the doctor so much that we decide we want to work with him. On the plus side, when you're in with this doctor you get his full attention, so there are pros and cons to the lack of punctuality.

He diagnoses mild PCOS and puts me on Metformin. I start on one pill, work up to two, until I realize that two pills make me horribly anxious and I go back to one. (That actually takes about 6 months to diagnose since it's not a listed side effect.)

We start Femara + IUI cycles with this doctor in May 2009. I respond well to the Femara (and it's sooooo much better than Clomid -- no side effects, and better, more controlled, response). My uterine lining tends to be light, so we add an estradiol spray, which does help my lining. Because of my short luteal phase, I do progesterone suppositories after the IUI during the 2 week wait. Still no luck.

My doctor runs an immunological work up in July 2009. My natural kill cell levels are high, and we schedule a laparoscopy so he can look for endometriosis (I don't have any of the obvious symptoms, but it's often linked to infertility and immune issues). He finds more than expected and gets rid of it. I have a horrible time before and after the laparoscopy as I pass out when they put the IV in, pass out when they take it out, and then again in the bathroom afterwards. Turns out nurses really freak out when you pass out *before* the procedure. They were suggesting we should do it another day, and I was emphatic that it was not going to help. Recovery from the surgery isn't bad -- I take 2 days off work, and then have a weekend to get more mobile. (The bubble-wrap effect on your skin from the air they use to inflate your abdomen is really trippy, though!)

We do another Femara + Lupron + Menopur+IUI injectible cycle in October 2009. I respond ok to the meds, but no luck.

I quit my job at the end of November 2009. It's a high profile, stressful job that isn't what I want to be doing, and we were very lucky to be able to choose to have me focus on getting pregnant. I continue to be incredibly grateful for this.

We're geared up to do another injectible cycle in December, but when I go in for my Day 2 ultrasound at the end of November, I have a leftover follicle, so we cancel the cycle and I get December off. It's a weird 'natural' cycle, and I end up having what I think is a super short cycle (~9 days) and then a long cycle (35+ days) that we end by putting me on progesterone in late January.

We decide it's time to start IVF (the cancelled injectibles cycle was going to be our last one pre-IVF) so we get recommendations from our doctor. He suggests two nearby doctors, one of whom really gets the reproductive immunology stuff (which many doctors, including our first RE, consider bleeding edge research that may or may not have scientific merit). We go with that guy. :)

In mid-January we start the initial consultations with the IVF clinic. Tons of pre-cycle testing, genetic consult, etc. We re-run the immunology workup and while my natural killer cell levels are much lower, they're still slightly elevated, and my TH1/TH2 levels are high.

At the end of January I start the progesterone to get my cycle to finally start, and it does in early February. A Day 2 ultrasound shows inconsistent antral follicles, so I go on the birth control pill for about 4 weeks to get my follicles lined up (and to coordinate with the clinic's schedule for egg retrieval/embryo transfer). Because of the immune issues, I do a shot of Humira in mid-February. Humira is an immune suppressant usually used for rheumatoid arthritis. It makes me feel like I have the flu for about 24 hours, and I start using hand sanitizer obsessively. Oh, and because of the desire to use Humira, I have to get a tuberculosis test done. Turns up positive. (1/3 of the world's population carries latent tuberculosis -- nearly all as a latent infection that isn't contagious.) Because I'll be on an immune suppressant, I have to start treatment for the TB infection before I take Humira. So I start 9 months of a specialized antibiotic that only fights TB.

Finally on March 3, I start the actual IVF cycle. I also do my second shot of Humira. I start micro doses of Lupron, then add 225 IU of Gonal F. I'm on ciprofloxacin for 5 days early in the cycle, and then 5 days post retrieval. Also start dexamethasone mid cycle. I start progesterone shots the day before the transfer, and progesterone/estradiol suppositories the day after transfer. I also started Heparin, twice a day, before the egg retrieval.

I start the cycle with 9 antral follicles. I have two ultrasounds before the egg retrieval, and in both of them the doctor can't see my right ovary. We figure it's hiding and he'll find it when he's doing the egg retrieval and I'm under anaesthesia. There are 4 follicles on the left ovary, of varying sizes.

The egg retrieval went fine, except that I'm really bad with IVs, and passed out after they took out the IV. That plus nausea from the anaesthesia kept me for a few extra hours in recovery. He got 3 eggs out of the 4 follicles on the left side, and found out that my right ovary was completely dormant. 2 of the 3 eggs were mature, and they both fertilized (with ICSI) and created very good embryos.

Because we only had 2 embryos, we did a Day 3 transfer. One embryo was 7 cells, one was 8. We did assisted hatching and chose to use both embryos. Our doctor told us that with 2, there's a 50-60% chance of a live birth (75% one, 25% two, less than 1%

The ICSI and assisted hatching was preventative -- we don't know for sure that there are issues there, but our doctor suggested it might be prudent.

And it worked! My beta at 10 days post transfer was 58, and my beta at 12 days was 99. My clinic looks for a 60% rise, which we achieved.

Because of my immune issues, I went in today for an infusion of Intralipid, which keeps the immune system calm. I'll be doing that every ~3 weeks until 11 weeks, when we'll re-run the immunology workup. I'm on Heparin and the progesterone suppositories until 12 weeks (May 25), and on progesterone shots until 10 weeks (May 11). Our first ultrasound (with our IVF doc) is April 16, and our first ultrasound (with our fertility doc who's also our ob) will be two weeks later!

So that's how we got from here to there. We've learned a ton about infertility and how my body works, and we've had to really be our own advocates. Thank goodness we dropped our first doctor -- it's super important to really trust the experts you're relying on.

Next post I'll respond to Dea.nna questions about going gluten free.