DNA Testing, DH, and Symptoms

I realized in my last post that I didn’t mention the DNA aspect or my symptoms prior to going gluten free. I considered editing my last post to include it, but it turned out I had a fair amount to say, so here’s a separate post about that.

After getting the negative blood test for celiac, when I went gluten free I also ordered a DNA test through 23 and Me (if you want a referral, I’d be happy to send you one – it would give you a discount on the price). I had done a fair amount of reading about the DNA connection to celiac disease, so I wanted to be able to rule it out completely if I didn’t carry any of the at risk genes which are HLA-DQ 2 and HLA-DQ 8.

Once I got the raw data back (about 4-5 weeks later), I ran it through Promethease and found that I carry the DQ 2 gene, which is an increased risk to developing celiac disease. This doesn’t mean that I will definitely develop it, just that I’m predisposed and could develop it at some point in my life. Not a definitive answer, but could be useful in diagnosis at some point if I were to go down that path again.

When I did some further digging on dermatitis herpetiformis, I found that statistics 10%-50% of people with DH are negative on blood testing for celiac. This says 10-37% of people will test negative for celiac. This interested me since I tested negative, but the red, itchy, acne-like bumps sure seem like a mild version of DH to me and they show up any time I’m eating gluten (not intentionally anymore, but when I get glutened, they always appear along with other symptoms). Generally, people with DH don’t have the typical GI issues and here’s some additional interesting information on it. My biggest complaints were the fatigue and brain fog and itchy skin bumps, which I just passed off as part of life. Due to the impaction I had, the stomach pain, nausea, and vomiting brought me to the doctor, which was after a period of a low-FODMAP diet where things had improved for a while. When I realized gluten was the issue for me after doing the low-FODMAP diet, I went back to eating “normally” and that’s when the stomach pain, nausea, and vomiting went into overdrive. My theory is that gluten caused the impaction to begin with and going back on gluten worsened it significantly. Even though I went gluten free, things didn’t really start to improve until that cleared, which makes me think that perhaps I was getting glutened by the impaction until it cleared. This is just my theory – there’s no real science that I can point to and I’m not a doctor. Still, some of the stomach aches persisted, which lead to cutting dairy. That’s resolved the remaining symptoms, but I am still highly sensitive to the smallest amounts of gluten.

I had many symptoms throughout my life that make me think there’s always been an underlying gluten issue that I never connected until now. I’ve had stomach aches (always brushed off as having a “sensitive stomach”), gas (flatulence, belching), intestinal cramps, backaches which ultimately led to a spinal fusion of L4/L5/S1 at age 28 (soon to have another fusion in my neck), fatigue, brain fog, headaches, weakened immune system (got and stayed sick longer than others, multiple bouts of strep, colds, flus, etc.), chronically dry and itchy skin, bumps that were both painful and intensely itchy (worsened in the last year, got them on my scalp off and on throughout my life), nausea and vomiting for no apparent reason, constipation, bloating, decreased appetite and food intake yet gaining weight, horrible menstrual cycles (lots of pain, very heavy, often spotting between), canker sores, easy bruising, edema usually when overheated/hot and in my hands, chronically low iron levels, joint pain (particularly in the hips and lower), nerve and muscle pain in my legs, anxiety, depression, mood swings, issues with dairy (lactose intolerance, but now I wonder if it’s more than that).

It’s funny how you don’t realize these are all issues and that they could be connected. I think this is because they all happen at different times and you only ever treat the biggest problems individually or you think that this is just how others experience life too. Until it stops and you’re able to look back and go… “Wait… this isn’t normal?” or “So THIS is what it’s like to feel good!”

The DNA information, along with my symptoms and severity of reaction to even the smallest cross contamination make me think that it’s quite likely I have celiac. It doesn’t matter to me if I have an official diagnosis, though. I’m going to avoid gluten either way because I feel awful when I get cross contaminated and so much worse if I actually eat gluten. I’m not a doctor, but I do know that there’s a lot that isn’t fully understood about celiac disease or non-celiac gluten sensitivity yet. Perhaps some day I will better understand the why’s. For now I’m fine with knowing how to feel the best I can (no gluten or dairy!).

Soon, I hope to share some gluten free bread experiments I’ve been doing at home! Stay tuned!

A Follow Up: Low-FODMAP Diet

It’s been a few months since I last posted about doing a low-FODMAP diet. Some of this was because I was busy, but most of it was due to arm/wrist pain that I was having. This made it very difficult to type and typing is a main part of my day to day job. Needless to say, any typing beyond what was absolutely necessary just didn’t happen. This has been going on for about a year now and the problem turned out to be a herniated disc in my neck that is compressing my spinal nerve. Due to this not improving with physical therapy and the severity of the issue, I’m going to have surgery in October. This should resolve the issues I’ve been having. For now, though, I have been getting less pain in my arm, so I’m taking advantage of the relief while I can.

Since my last post, I went through the introduction phase of things with the low-FODMAP diet. I found that the majority of my symptoms were from gluten – any and all sources (even gluten free oats) caused a lot of issues for me, especially after being gluten free for a period of time. It was almost like my body started to get better off gluten, then I reintroduced it and my symptoms were worse than ever! Beans also cause some GI upset for me, so I’ve decided to keep those to a minimum. Aside from those things, I didn’t have much trouble with other FODMAPs. Over time, I found that aside from eating out, eating on a low-FODMAP diet wasn’t too bad as long as you plan out your meals well. I suppose any diet is all about planning, though! ;)

After realizing that I was very sensitive to gluten and researching more information, I was concerned about celiac disease. One thing I hadn’t mentioned before was that since last summer, I’ve been getting a skin rash. They were acne-like red bumps that were very, very itchy. I thought it was just because it had been such a hot summer and it would go away once winter came. It didn’t. My symptoms got worse during the winter time as well. Once I went low-FODMAP and stayed away from gluten, it seemed to improve. I thought it was nothing until I ate gluten during the reintroduction phase and the rash would come back. So, I started thinking that perhaps it was connected. Then I read about dermatitis herpetiformis. Huh. Sounded like what I was dealing with!

After putting those connections together and wanting to rule celiac out (hopefully, or in and I’d have some answers!), I went back on gluten and I went to my doctor who ran the blood test for celiac disease. She also referred me to a GI since I was having so many GI issues. I’d only been back on gluten for a week when the blood test was done. It was negative. I stayed on gluten until the GI appointment because I’d read that you need to be eating gluten for testing. It was a very, very miserable 6 weeks where I returned to barely functioning and feeling largely out if it and like I’d been hit by a truck. Somehow the blood test results weren’t in the system when I finally had my appointment with the GI, so he ran the test again. Still negative. Other testing showed my iron was low, but everything else looked good. I have a history of low iron and always went between being iron deficient anemic and borderline (just barely in range), so no shock there.

I didn’t find him to be super helpful overall and more or less implied I was a fad dieter by trying a low-FODMAP diet and didn’t much want to hear about gluten being an issue for me. He did an x-ray and found that I had a fecal impaction. This was causing me to feel full and my stomach not to empty properly. He had me do a bowel cleanse, put me on Linzess (I have a history of chronic constipation) and follow up in a month. At this point, I decided to just go back to being gluten free and see how I did.

The cleanse didn’t resolve the impaction, but going off gluten helped me feel quite a bit better. Still, some symptoms lingered. This time at my follow up, I saw another GI in the same office who really took the time to listen. She had me do another bowel cleanse because based on my symptoms, it sounded like things still hadn’t cleared. She asked me to keep a log of my, uh, ‘movements” to bring in next time. I used the same app I did when doing a low-FODMAP diet – MySymptoms. This is a GREAT app for tracking food, symptoms, etc. Especially if you’re dealing with trying to figure out if food is causing issues for you.

This time, things cleared. Still, some symptoms persisted like urgency, stomach aches, bloating, belching/gas, and joint pain. The “movements” log proved to be helpful for my doctor. She gave me some tips at my next appointment that might help with some of the symptoms I was still having and we talked about gluten being an issue for me. She said that the blood test was negative, but that doesn’t really rule out celiac and definitely doesn’t rule out non-celiac gluten sensitivity. She didn’t see a reason for me to reintroduce it if it seems to be helping. She set a follow up and said if there are still issues, it might be time to do an endoscopy or further testing. At my next follow up, I brought in a detailed log of food, symptoms, and movements. After reviewing, she had me cut dairy and see how I did. It seemed like (from the log), any time I had dairy (I only really eat cheese, never drink milk and rarely have other dairy), my symptoms would return. I’ve had dairy issues off and on my whole life and had wondered if dairy might be part of the lingering issues. It’s not uncommon for people that have gluten issues to also have dairy issues and need to cut it for a time while things improve.

I admit, the idea of going dairy free seemed daunting. How much do I cut? Do I worry if it’s an ingredient in a packaged food? Is it all dairy (ie casein free) or just direct milk products (cheese, milk, etc)? I decided to go the full on, no dairy at all, not even a small amount. Within a few days, no more stomach aches, no more joint pain. Within a week, the rest of the lingering gluten-like symptoms resolved. Huh. Who knew? (My GI did!) I’m going on my third week dairy free and I have to say, it’s made a difference! I finally feel like I might have this figured out.

Gluten free and dairy free – this is my new life in food. I’m not officially diagnosed with anything, but my doctor suspects celiac disease or gluten sensitivity and others I’ve talked to with celiac disease said they would be surprised if I didn’t have it. Blood testing is not conclusive in many cases and people with dermatitis herpetiformis frequently have negative celiac blood results. Since the “cure” is the same either way, I don’t feel a need to press for a scope to be done to confirm via biopsy. It would likely require I go back on gluten, which I just don’t want to do at this point. So, I suppose “suspected celiac” is the best I have for now. I’m okay with that and my doctor supports the dietary changes if it’s helping.

I can’t say I’m super thrilled about it at times. I miss cheese. I miss real bread and donuts and flaky pastries and beer. God I miss beer. I miss eating out without worry that gluten will sneak in. Now I have to add dairy to that list, though that’s a bit easier and more obvious than gluten tends to be. I also don’t think I’m as sensitive to dairy “contamination” as I am to gluten. I still have days where I get upset when I go to the store and can’t find what I need that’s both gluten and dairy free or I get upset because I have to plan and cook every. single. meal. and for once I just want to not have to think about it. Those days will come and go, but it does get easier.

I still mourn the things I’ve lost while reminding myself of all I’ve gained. Most of all, I’m so glad to be getting my life back to the point where I can actually function in day to day life and not have stomach aches constantly or any of the other issues. There are wins in all of this, even if there are some losses. The wins are outweighing the losses for sure! :)

Moving forward, I hope to share recipes, tips, thoughts, and whatever might come to mind about being gluten and dairy free. I’m sure I’ll still post about knitting and crochet when I can. I do have some recent crochet projects I was able to complete during the Camp Loopy Challenge, but for now I’m largely taking a break with knitting and crocheting until I’m on the other side of surgery. Posting may be sporadic until then, too. Or I may go for shorter posts in place of the longer ones I’m inclined to do!

If there’s something gluten free or dairy free you’re looking to find, let me know and I’ll do what I can to accommodate requests for recipes or product reviews or whatever. I’ve been exploring my own path with baking, breads, and other things recently. It’s nice to be able to experiment and I’m always open to ideas, so feel free to share if you have any.

Low-FODMAP Sauteed Bok Choy and Carrots

IMG_7335Dinner one night this week: store bought gluten-free “unbreaded” boneless chicken wings (breading iscorn starch and something else, but no wheat, barley, rye, or other things that aren’t low-FODMAP appropriate), low-FODMAP BBQ sauce (it was okay, pretty tomato-y so I’ll be modifying sometime), sautéed bok choy and carrots, and my attempt at a lactose free mac & cheese using a garlic olive oil, corn starch, and unsweetened almond/coconut milk béchamel with cheddar over brown rice pasta. I didn’t care for the almond/coconut milk in this at all. It tasted too nutty. I’ll have to try to find some other substitute and post a recipe when I find a good combination. (I’m avoiding soy, so maybe rice milk would be better? I might try it with Daiya vegan cheese shreds next time, too.)

Since I wanted to use up some bok choy and carrots, I decided to try out a modified version of this recipe, which turned out really good! Here’s my version of this recipe, modified to be Low-FODMAP.

Low-FODMAP Sauteed Bok Choy and Carrots

  • Servings: 4
  • Time: 10 minutes
  • Difficulty: easy
  • Print


• 1 tablespoons garlic olive oil
• 1 teaspoon freshly grated ginger
• 1/4 teaspoon red pepper flakes
• 1 1/2 pounds bok choy (about 2 medium bunches), cleaned, ends trimmed, and cut on the bias into 1-inch pieces
• 1 large carrot, shredded or use a julienne peeler (I like this one)
• 1 tablespoon soy sauce (I use coconut aminos for soy-free, you can also use gluten-free tamari)
• 1 tablespoon water
• 1/4 teaspoon toasted sesame oil
• Salt and pepper to taste


  1. In a large frying pan with lid, heat the garlic olive oil over medium heat until shimmering. Add the ginger and red pepper flake. Cook, stirring constantly, until fragrant, about 30 seconds.
  2. Add the bok choy and carrots. Using tongs, fold it into the ginger mixture until coated, about 1 minute. Add the soy sauce and water, cover, and cook until steam accumulates, about 1 minute. Uncover and cook, stirring occasionally, until the greens are just wilted, the stalks are fork tender but still crisp, and most of the water has evaporated, about 2 minutes.
  3. Turn off the heat. Stir in the sesame oil. Add salt and pepper if desired. Serve!

On Cooking and a Low-FODMAP Diet

So I had every intention to start blogging more and it just didn’t happen. I’ve still been working on getting settled into my new home and it turns out that I developed a bad cast of tendinitis in 3 places on my left arm which has kept me from being able to type much (yay one handed typing), knit, or do much of any kind of crafting. I’m doing physical therapy and I think it’s helping get things back in order, but in the mean time, things have been a little dull given it’s winter here and my arm is rather useless. I have, however, been able to feed my love of cooking during this time, since I don’t have to do much with my one arm and no repetitive motions that bother it (good thing I’m right handed!). ;)

I’ve also been dealing with a slew of stomach issues the last few months.  I’ve been a long time sufferer of stomach (and related) issues, but recently it’s just become very bad with constant stomach issues seemingly no matter what I eat. For a while I was getting heavily into vegetarian cooking and Indian food. I had started the beginning of the year with cleaning up my diet by switching to a Vegan Before 6 (VB6), written about by Mark Bittmann. It made sense to me and I’m aware enough about the food industry in America to know that the Standard American Diet (SAD) isn’t doing much good for the vast majority of people, not to mention how it’s impacting the environment. Read it for yourself, though, as I won’t be getting on my soapbox over it here! I just found it would be something that would work for me, both from an ethical perspective and my diet needed to be cleared of all the junk I had been consuming between Thanksgiving and New Year’s.

With all the stomach issues, though, I started to wonder if something I was eating wasn’t working for me. I mean… prior to the switch, my stomach had been relatively normal as far as I knew. At least normal for someone that had always had stomach issues, but sometime after ‘cleaning up’ my diet, I started to have a LOT of stomach aches and they only seemed to get worse, not better. I felt terrible much of the time and I was incredibly lethargic. Most people that move to a vegetarian or vegan diet see improvements with those things. My boyfriend, Drew, saw vast improvements in how he felt, while I didn’t even a little. So I started to look at other options. From completely vegan, to vegetarian, to Paleo, to doing a Whole 30. I was looking at and reading everything I could that discussed stomach issues and how diet can help. While reading the book It Starts With Food, I came across FODMAPs. I didn’t initially give it a ton of thought, but it definitely struck some chords with me. I thought I would do a Whole 30 and was debating trying to do it with or without meat (or maybe some mixture to keep with the VB6 idea) when a friend of mine mentioned a low-FODMAP diet to me.

I started reading a lot. MONASH University in Australia has pioneered research on FODMAPs. Essentially, it is a diet for people who suffer from Irritable Bowel Syndrome (IBS). This article from The Washington Post does a pretty good job of explaining it. So much of what I read made sense to me and I learned that some of what I thought was ‘normal’ are actually symptoms of IBS I never really associated before. Some new things I had introduced since changing my diet stood out as some possible problems: wheat, legumes, onions, garlic, broccoli, and cauliflower. All are high-FODMAP foods and cause issues for many that deal with IBS and these are foods I was eating quite regularly! Armed with information and The Complete Low-FODMAP Diet (which I got from my local library), I started a low-FODMAP diet. In the first week and half, I noticed improvement. I’ve also found that I’m sensitive to sugar and sensitive to wheat. I ate a few too many gluten-free cookies and found myself with a massive stomach ache and then some panko breading and a tiny peace of coffee cake sent my stomach into fits. And because I don’t learn, over the weekend I had two donuts after being free of stomach issues and suffered the effects for nearly 3 days after.

The most strict version of the low-FODMAP diet is to help heal your gut and then you reintroduce foods and find the ones that trigger you most and find out how what your limit is. For example, if I were sensitive to onions, a dish loaded with them would be a bad choice, but perhaps if it was just a 1/4 cup in a whole recipe for 4 people, that amount wouldn’t cause an issue. There could be certain groups of FODMAPs that don’t trigger you at all, too. For example, lactose may not cause you any issues. Or maybe fructans don’t bother you. (The groups are fructans, galacto-oilgosaccharides (GOS), lactose, fructose, and polyols.) So, I’m working on figuring out what works for me and what doesn’t. When I’m following a low-FODMAP diet closely, I have more energy, less stomach issues, heartburn, etc, and overall just feel better.

I won’t lie. There’s problems eating this way. It’s difficult and it’s especially difficult to eat out. I have to spend a lot of time figuring out meals and making them, largely completely from scratch (so many things have wheat, onion, or garlic – or some combination of those). I’ve been very light in using soy because I suspect I have a slight issue with those, so for now I’m keeping soy milk (most are made from soy beans anyway, which aren’t allowed) and anything with soy in it. I also have been trying to keep my dairy intake to a minimum.

In trying to find things to make, it started to feel like everything has to be modified, sometimes significantly! I kept thinking “why aren’t there more low-FODMAP recipes out there?” Even the ones that claimed low-FODMAP weren’t always and said things like “asses your own tolerance.” I do understand some of that, but man did I start getting bummed out over it. It felt like nothing was safe anymore. Since it’s a relatively new diet, there’s just not a lot out there. I imagine it was like that when people first started getting diagnosed with celiac and had to start avoiding gluten and now there’s tons of gluten-free products, recipes, books, blogs etc.

Since I like to cook and I am a collector of recipes, I thought “Well, why don’t I start blogging about low-FODMAP recipes? I have a blog and I can’t knit currently and even when I DO resume knitting, I can still post recipes, right?” So here I am. Explaining my story of how I got here and what I’m doing dietary-wise. I’ll be posting recipes that I’ve modified or that I’ve created myself. I’m sure the world doesn’t really need one more food/recipe blogger, but documenting my own work that might help some others that are struggling seems like a pretty good thing to me.

Are there any recipes readers want me to cover? I’m always open to trying new recipes and definitely fine with modifying. :)

I hope you all enjoy the food posts that will be heading your way! Til next time!

*blows dust off blog*

Hello blog readers. Not sure if anyone is still following this or not, but I figured it might well be time to dust this off and use it again!

It’s been… oh about 2 years since I last posted. A lot happened in those two years that I quit blogging and podcasting. I largely quit podcasting because time didn’t permit it. Life got very busy, the relationship I was in got very rocky, then I decided that it was time for me to move out of the house I shared with my then boyfriend. I won’t go into details much on why that nearly 6 year relationship ended… I will just say that it wasn’t working for me anymore and I had spent most of 2013 trying to make things work while he spent that year showing that he didn’t much care to make anything work and only wanted to do what he wanted to do without much regard for me. Obviously this is just my side of that story and he has his own. When I initially moved out, we were going to try to make things work, but it didn’t take long for him to quit making any effort. I left the ball in his court after an argument (making it very clear I was doing so) and he never contacted me again.

When I moved out, I moved to an apartment downtown, which was a whole new experience for me. I loved it! I decided towards the end of summer this year that I wanted to move somewhere with a bit more space. That ended up turning into me buying a house. I KNOW! Me? A homeowner?? But as I was looking at places to rent, I found this beautiful Queen Anne style Victorian home built in 1894 that I simply fell in love with. I got financing in order, asked the see the place, and put in an offer. I didn’t look at a single other house – I just knew that was the house I was meant to be in. A week before Thanksgiving I closed on the house. It’s been a slow process, but I moved everything there, painted, and it’s slowly becoming my own. The house is close to downtown and close to a park that overlooks the river. I’m talking walking distance close! Not much of a view from where I’m at, however the neighborhood is just darling and the neighbors have been quite friendly and welcoming.

There’s definitely been some bumps and things I’ve had to figure out as a homeowner. I’ve learned to fix a toilet. I’ve learned better ways to paint and decide on paint colors. I’ve learned that 120 year old houses with many many original details (wood, windows, etc) are quite unique and not much is level or standard. What I’ve learned the most is that despite any of the things that go wrong or are wonky in my house, I truly love that I get to live there, I get to make it a home, and I get to care for a historic home in a lovely area that is simply gorgeous with all of it’s original details and really fits me and my style.

Here is the Flickr Album of my home from when I first took ownership.

Since this has always been a mostly knitting/spinning/crochet blog… I wish I had something to share with you all! I haven’t been knitting for the last 3 or so months due to on and off pain in my left arm. I’m fairly sure it’s a nerve that is pinched in my elbow causing the issues. I plan to get myself to the doctor soon for that. Since that limits me, I’ve been spending a lot of time watching Nicole Curtis on Rehab Addict along with a number of other HGTV shows and planning out what I want to do in my house.

Hopefully soon I will be able to show more knitting, crochet and even some cross stitch projects on here. Until then, I’ll probably use this to talk about the house and projects I’ve taken on or done.

Happy New Year’s Eve! I hope 2015 is a great year!

Episode 7: Rhinebeck Recap

Sorry for the weird cut about halfway through. Camera quit recording and I didn’t pick up where I should have when I started again. :(

Finished Objects (FOs)

Welted Fingerless Gloves

On the Needles (WIPs)

Grins Socks

Stash Acquisitions – Links to the shops

Stitched by JessaLu on Etsy and on Artfire
Sheep Incognito

(If there are any other things I mentioned that I forgot to link, let me know and I’d be happy to link them.)

Feel free to leave a comment here, email me (link in the side bar), or find me on Plurk/Twitter/Ravlery as mslindz and let me know of any comments/feedback about the show!

Episode 6: Has it really been a month?

Well it’s been a month since I last recorded! Life seems to have got the better of me for a bit there.

Finished Objects (FOs)

None :(

On the Needles (WIPs)

Grins Socks

Things in the Mail – Links to the shops

From A Wool Gathering: Midwest Fiber Co – Alpaca Glitz & Glamor
Fibernymph Dyeworks – SSK 2012 Colorway
Tanis Fiber Arts – Green Label Aran in Sand from Knitter’s Palette
Cupcake bag from GirlCave Bags
HK Box bag from Piddleloop Sewing Team
Hello Yarn – September 2012 Fiber Club
Sock the Vote Toe’d Party from Space Cadet Creations
Stockinette Zombies birthday sock kit