She Says… Double Diagnosis

Remember when we FINALLY figured out that Owen’s eczema (and likely a lot of his breastfeeding issues) was related to a wheat sensitivity/allergy? Since he was 8 or 9 months old we have kept Owen gluten free and so many of his health issues have disappeared. Despite the fact that we thought maybe he would grow out of it as he grew up, every time that we have re-tested wheat back into his diet (under direction from his doctor), his rash/ear infections/other illnesses have returned. It’s so clear to me that there is a link here, even though it hasn’t been confirmed by blood tests or extensive allergy testing. That’s enough for me.

Still, Benjamin and I were somewhat confused at the diagnosis because neither of us have any food allergies (Benjamin has developed oral allergy syndrome late in life, but that’s just a minor reaction, likely related to his seasonal allergies). But, I figure they have to start somewhere. And even if we never know “where it came from”, it’s there. Which, again, is enough for me.

Fast forward to this past April. Benjamin started having extreme stomach pains, tenderness and bloating. At first I thought he was just complaining (which, as a self-proclaimed hypochondriac, he has a tendency to do…), but the pain persisted for weeks. He saw several different doctors, had blood tests, a urinalysis and an ultrasound done, but still, no solid diagnosis. It began to feel like even the doctors thought he was imagining it. The stomach pain spread to back pain and even materialized as testicular pain, leading him to new doctors to rule out [very scary] things like testicular cancer. Finally, a blood test came back with a marker than indicated celiac disease. After a few more appointments, seeking out a celiac specialist (thank goodness for living so close to some of the top medical institutions in the country, including Beth Israel, which is one of the only hospitals in the world with a Celiac Center) and an endoscopy, the diagnosis is now confirmed.

Benjamin has celiac disease, an autoimmune disorder characterized by a damaged intestinal lining that can lead to serious health issues if a strict gluten free diet is not adhered to. The endoscopy showed that his intestinal lining is pretty severely damaged, despite the fact that he hasn’t had any poop issues or other common celiac symptoms. If we hadn’t persisted with the doctors for these vague stomach pains, we never would have found out.

We had been testing out a gluten free/dairy free diet for Benjamin for several months while he saw the multitude of doctors, since I am a firm believer in the impact of diet on our bodies and suggested he try it. As it turned out, my instincts were right again. And, given Owen’s experiences with wheat, Benjamin’s diagnosis almost doesn’t surprise me. I say almost, because I’m still totally amazed at how acutely the symptoms materialized, and how extreme they were, despite the fact that he has eaten gluten his whole life with no issues.

Since we already keep Owen gluten free, I am pretty familiar with what the good products are, how to bake muffins and breads, and what I can and can’t make for him. However, we often “cheat” a little with him (using soy sauce, for instance, or a marinade with a wheat-based ingredient in it) because he is able to tolerate very small amounts of wheat with no symptoms.

With Benjamin’s celiac diagnosis, though, there can’t be any more cheating. For him, it’s not the symptoms (in fact, even when staying gluten free, his stomach pains still come and go) that are the problem. It’s the invisible and undetectable damage to his intestinal lining. “Cheating” now means permanently damaging his body and increasing his chances of cancer, malabsorption of vitamins, other autoimmune disorders, liver disease, and on and on.

Given that 1st degree family members of celiacs have a higher likelihood of having the disease, I am going to conservatively assume that Owen has celiac and work to make our house 100% gluten free (perhaps later in life we will get him blood tested and even do an endoscopy to see how damaged his intestines are). I’ll still eat some granola bars and boxed cereals with gluten, but in general, this won’t be a huge shift for us, given that we’re already more than halfway there. I feel so thankful that we know this now so that Owen has the potential to escape the serious health implications of this disease through a strict gluten free diet for the rest of his life.

So, any fellow celiacs out there? How strict are you about sharing dishes – do you have a strictly gluten free set of pots and pans, baking dishes? What about things like butter and peanut butter – do you have a separate one for knives that touch gluten? What do you say at restaurants or when friends invite you over for dinner so they understand the severity and what it means? Where is the strangest place you’ve ever found wheat/gluten? Just this morning we realized our multivitamins had gluten and we need to find a different kind. Thankfully we eat very little processed food so I’m very in control of the ingredients we use, but things like vitamins and shredded cheese were not even on my radar before this diagnosis.

About these ads

20 responses to “She Says… Double Diagnosis

  1. I have Celiac Disease and food allergies. I have a gluten-free set of pots and pans, as well as plastic utensils (like a spatula, stirring spoon, etc.) and colander. I don’t know how likely it is that these could cause issues even after going through the dishwasher but I’d rather be safe than sorry. Luckily for me (I guess), peanut butter is already off-limits, so it’s in a separate cabinet, eaten in a separate room (if at all), so I don’t go near it anyway. Our house is probably 80% gluten-free and my boyfriend is EXTREMELY cautious about cross contamination.

    As for restaurants – I try to contact them in advance by phone or email to see if they can truly accommodate me (esp. regarding cross-contamination). It’s easier than asking them when they’re busy or otherwise distracted.

    I contacted the manufacturer of every prescription or OTC medication I take, the chapsticks I use, the hand lotions I use (if I touch my food with my hands, it’s possible that I could ingest some), the spices I use… everything that comes near my mouth is first confirmed to be gluten-free. It’s exhausting but has been getting easier.

  2. I would love to see what your weekly menu looks like. I struggle with cutting out processed foods with our busy schedules, but I know you are busy working parents too and make it work!

  3. @Celiac and Allergy Adventures, This is so helpful to hear! I totally agree with you on the better safe than sorry route. I’m also very interested to hear that you live with someone who is not gluten free and being careful about cross-contamination is enough. I had never thought about chapstick or hand lotion, but it’s definitely something to look into. All very interesting! Thank you so much for your comment.

  4. Hi Kate, my husband is a celiac, and we don’t use separate dishes or pans, with the exception of separate colanders, because we find them hard to clean really-really well. We do things like if we are making grilled sandwiches, I’ll make his first in the clean pan and then make mine (non-gluten free) after. We make sure the dishes are really clean between uses. One thing we have found challenging was traveling, and have used yelp searching “gluten free” to find local GF places wherever we are traveling. My husband had severe headaches, bloody stool, and fatigue (obviously his brush border was so damaged that he was struggling to absorb nutrients), but for the past 4 years he has been GF and experiences no symptoms at all. He has been seen by specialists and we have been reassured that our current methodology of being careful of cross contamination is working for him!

  5. @Jen, That is a great idea for a blog post. I’d be happy to share that.

    @Melissa, That’s wonderful that your husband’s celiac is so under control! Great tips. Benjamin definitely has trouble when traveling as well, but iphone apps definitely help!

  6. Typing on my ipad, excuse some typos/awkward phrasing! Also, GF bread can be really expensive, but we also use corn tortillas a lot as an alternative which are super cheap. We make a lot of bean/veggie/balsamic type dinners and serve over brown rice. Tacos are great, chicken salad over greens, spinach and artichoke baked dip, (I’m mentally scrolling through recent meals for commenter Jen)…um, breakfast for dinner is always fun. Also, check this chart out! http://pinterest.com/pin/255790453806686914/ – basically, we have found that it is much easier to just make things using whole ingredients rather than buying pre-mixed things.

  7. Kate – I would be especially careful about non-stick pans, as they are prone to scratching, etc. I’m less concerned about my stainless steel pots and pans, as far as cross-contamination goes. Toothpaste/Mouthwash is another thing to consider, particularly for kids. Also, Sargento and Kraft are gluten-free!

  8. You should definitely read Elisabeth hasslebeck’s book The GFree Diet. It covers all those questions. Like, yes, keep two peanut butters for one that has knives that touch bread and one that doesn’t.

  9. I don’t have personal experience with Celiac, but I run a restaurant and am very aware of what a gluten-free diet entails (we have a gluten-free menu and are especially welcoming of all allergy issues). I would definitely not be afraid to call restaurants ahead of time and ask if they have a gluten-free menu or are at least aware of the necessary precautions they need to take to serve gluten-free food. Something that a lot of people don’t consider is that Celiacs cannot eat any fried food in most restaurants because of cross contamination. Those non-breaded chicken wings, fries & other seemingly gluten-free products are probably fried in the same oil as that breaded fried chicken and calamari. You can always ask restaurants if they will pan-fry foods for him. You also need to be careful of him ever ordering sauteed fish. Most restaurants put a light flour coating on it. In the end, just make sure your server knows that he is gluten-free!! We have some guests that have a little card with them that tells us exactly what ingredients they can’t have… that can come in handy.

  10. @Melissa, LOVE that flour conversion chart! Super helpful.

    @Celiac and Allergy Adventures, Great point. I think we will get a gluten free set of some of the dishes we find hard to clean (muffin tins, nonstick frypan, etc.).

    @Anika, Thank you! I’ve heard this recommended several times, so off to order it now…

    @Casey, These are GREAT tips! Thanks. So true about the frying oil. Prior to this diagnosis Benjamin HATED being the person with the special requests at a restaurant, but now we can’t take any chances. So nice to know some restaurants are so aware of it.

  11. I don’t have experience personally with Celiac, but one thing that comes to mind is trying to use as much stainless steel as possible, rather than plastic or silicon. Any “misuse” of plastic can result in a breakdown and further allow cross contamination. Avoiding plastic was important when I worked in a restaurant kitchen. Ikea has excellent kutchen utensils, bowls, colanders, etc. that are stainless. They’re also incredibly reasonably priced. Might also want to think about converting to glass storage bowls.

  12. All I can say is that I sure wish this was more “out there ” in the eighties. My oldest daughter was born in 1985, and from the time she was an infant she had all kinds of gastrointestinal issues. It wasn’t until she was about 25, that I told her to just try being gluten free for two weeks to see if she notices anything. She called me up and said,” I’m a new human!!” She stopped being depressed, and her intestinal issues cleared up right away. I don’t know if she has full on Celiacs, but she is on a very strict GF diet now and feels so much better. She even lost a lot of puffiness and overall bloated feeling. I just feel badly that it wasn’t caught ages ago!!!

    It sure is amazing what food and diets can do for you.

  13. I have absolutely no advice for you or experience with this… just wanted to say that I’m sorry Benjamin hasn’t been feeling well and sorry for the diagnosis. I’m glad you finally got some concrete answers though. You’re obviously working very hard to figure this out and keep your boys healthy and safe – they are lucky to have you.

  14. A good friend of mine is celiac and so is her (now teenage) son. She blogs at http://www.glutenfreeislife.com/. Feel free to contact her with questions!

  15. I believe Elisabeth, on ABC’s, The View has celiac disease. You might find some useful resources through her also. -(ie through twitter/the view website Or another personal blog of hers)

  16. @Courtney, Great point, thank you! I LOVE me some Ikea, so perhaps I can rationalize a trip there to pick up some stainless steel kitchen stuff.

    @Elizabeth, How amazing that you guys figured that out and it had such an impact! I totally agree — we are so fortunate to be surrounded with gluten free products nowadays, even at our regular grocery store.

    @Phase Three, Thank you :)

    @Jess and @Kenzi, Thanks! I’ll definitely check those blogs out.

    @Jo, Thank you! I will look into if she has a blog. Someone else recommended her book and I ordered it last night, so I look forward to digging in.

  17. Hey Kate! I love your blog (just happened to stumble upon it via pinterest). My husband went through the same thing your husband did and ended up finding the book Wheat Belly (it does a really great job explaining that wheat is not really wheat – it was genetically modified back in the 50s or 60s). So being the lazy cook that I am I went off wheat too (I cheated occasionally) and just started eating gluten free with him – what a change! Not only did he start feeling much better, but I did too – I stopped struggling with acne (have ever since I was a kid), I no longer had bloated days, and I even had extra energy when it hit the end of the day. We did about two years of a pretty strict Gluten-free diet and now my husband has healed enough that he can cheat occasionally too… however we pretty much still eat out at gluten free places (Carrabas Italian Grill has a whole seperate menu for GF people and place like Chipotle are really good about keeping ingredients seperate. If you go online, a lot of fast-food places like Chick-fil-a and In-N-Out have a seperate GF menu – you just have to make sure to say GF before whatever you order. I’m happy to share menu ideas too if ever you need any!

  18. I know this post is old but I just stumbled across it. Have you checked out these two resources? http://www.healthyvilli.org/ and http://www.triumphdining.com/celiac/celiac.php

  19. @Mackenzie, Thank you! These are great resources.

    @Anonymous, Thank you, too, for those links. Healthyvilli was mentioned by Benjamin’s doctor, but I hadn’t heard of TriumphDining. Will check them out!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s