She Says… Celiac Update

I’m not sure how many of you are actually interested in the nitty gritty of Benjamin’s celiac diagnosis (and Owen’s likely diagnosis, though we haven’t done the blood test yet to be sure), but I wanted to keep some notes here for others dealing with this disease and other food allergies. I also want to spread awareness — there is a lot of bad information out there about the hows and whys of being gluten free, and now that my family is in that boat I realize just how vital it is that everyone understand what the diagnosis means and what we can do to treat it.

First things first, there is a difference between a wheat allergy, a gluten sensitivity, and celiac disease.

Celiac Disease: Celiac disease is an autoimmune disorder where the body reacts to gluten by attacking itself and causing damage to the small intestine. This inflammation of the lining of the small intestine leads to malnutrition (due to the inability to absorb vitamins) and puts celiacs at a much higher risk for many issues like other autoimmune disorders, cancers, and even pneumonia. In addition, many celiacs have violent physical reactions to coming into contact with gluten, even the tiniest amount.

Gluten Sensitivity: An individual has undesirable symptoms when he/she eats gluten (fatigue, indigestion, constipation/diarrhea, gas, etc.), but does not have celiac disease. Although bothersome, there is no inflammation or damage to the intestine. Some people with gluten sensitivity can have very extreme physical responses to the tiniest amount of gluten, while some responses are quite minor.

Wheat Allergy: The body launches an exaggerated response to wheat proteins (which may show up as a rash/hives, wheezing, swelling, etc.) but the damage to the small intestine is mild.

Benjamin’s blood tests confirmed the celiac diagnosis and an endoscopy (where he swallowed a camera so they could see the inside of his intestines) was done to see the extent of the damage to his intestinal villi. This procedure and the biopsies they took indicated that Benjamin has extremely damaged villi — they were worn down completely, whereas healthy villi stick up like little tiny fingers. That means we have to take immediate and extreme action to eliminate all gluten from his diet.

At first I thought, “Oh, that won’t be that hard, since Owen already eats gluten free. There are gluten free versions of everything. You’ll be fine.”. But what I didn’t realize is that it’s not just about the obvious sources of gluten like flour, cereal and bread. It’s not even about hidden sources of gluten like in marinades and soy sauce and some flavored yogurts. It’s not even just about reading labels like “produced in a facility that also processes wheat”. We have to be extremely aware of cross-contamination too. That means getting rid of every sponge, plastic utensil and tupperware in our kitchen because they likely have gluten proteins on them. It means getting rid of every nonstick pan because the nonstick coating is porous and may be harboring gluten proteins. It means new baking sheets and even a new toaster. It means reading every label in our pantry and getting rid of, well, almost everything. It means questioning and Googling every brand and every ingredient before taking it off the grocery store shelf. It even means changing chapsticks and shampoos and hand lotions.

Phew. It’s a lot.

We did a major kitchen cleanout and got all new nonstick pans, kitchen tools and baking sheets over the weekend. We reorganized our cabinets and removed all products with even the smallest trace of gluten in them (except for a few boxes of cereal and some granola bars for me — those I can keep relatively contained and I fear that I can’t live without them!).

The great news is that while celiac disease can’t be cured, you can literally regenerate the intestinal villi and essentially reverse ALL of the symptoms and increased likelihood of developing future issues by sticking to a strict gluten free lifestyle. Unfortunately, unlike those with gluten sensitivity, Benjamin will never be able to “cheat” once in awhile or risk being glutened. If he’s not sure about a particular food at a restaurant, he can’t eat it. Bottom line.

Benjamin and I are both struggling with his diagnosis. He is mourning food he’ll never eat and the crazy things he’ll need to do before he can eat out in public again. I am mourning having to write a 10 page email when someone invites us over for dinner, and not being able to bake homemade bread (yes, yes, I know there are gluten free flour blends and mixes, but they are NOT THE SAME). But we’ll get through it, and then it will just be… life.


So… anyone want to invite us over for dinner?


16 responses to “She Says… Celiac Update

  1. Celiac and Allergy Adventures

    I totally would invite you over if you lived nearby! And I’m definitely interested in reading all the nitty gritty details! 🙂

    I’m glad you’re doing your research. It’s complicated but it’s also not. When you really think about it, it’s an amazing disease to have. No drugs, no surgeries, no doctor visits. If you ever lose health insurance, you can still treat the disease. I know it’s probably a stretch, being so soon into it, to see it that way. There is a grieving process involved!

    Also, I get aggravated when people call it a gluten allergy! But for some people, that’s the only way they can “get” it. It’s not an allergy, but it’s treated virtually the same way as a food allergy.

  2. That truly is a tough thing to deal with as a family. Such a HUGE lifestyle adjustment. So many things we take for granted. How do you ensure that your cupboards are rid of it? There’s always crumbs in mine!

    I haven’t had that many “gluten free” items, but for what it’s worth, my absolute FAVOURITE treat right now is this gluten-free brownie that the cafe down the street makes. I don’t know what’s in it, but it’s freaking delicious – best brownie I ever had. I realize that’s of absolutely NO help, but it opened up my eyes to the fact that GF didn’t have to be sub-par in all things 🙂

  3. Celiac and Allergy Adventures

    Also, I’m planning on uploading my regular grocery list of things to buy for a resource for people just getting started, but there are also loads of them out there! If you have a smart phone, take it with you! It’s much more inexpensive to find things that just ARE gluten-free without them advertising that they’re gluten-free. Most websites have statements saying which products are gluten-free, and I’ve found that helpful. I also read about (but haven’t tried) a Fooducate Allergy app, that allows you to scan a food’s barcode. You can customize it to what your allergies are (it includes gluten) and it will tell you if the product contains that particular ingredient.

  4. Wow I never realized what was in involved in that diagnosis! Replacing all of your kitchen supplies? I would never have thought of that!
    I am so interested and now I realize how little I know of this topic. What would happen if Benjamin accidentally had gluten without realizing it? Could he get that violent physical reaction or is the issue more that it undoes any progress made on the intestinal regeneration?
    It seems that you hear more and more of celiac. I wonder if there is more awareness and thus diagnosis or if something else is at play?
    Thanks again for the information!!

  5. Sure, come on over. We could order pizza. Pizza is gluten free, right? 🙂

  6. Not entirely the same, but my husband is a late onset type I diabetic. We mourned for awhile. It stinks. It’s expensive. But it has been nearly three years, and it has become a part of our life–blood checks, needles, insulin, and all. I hope that you all find a new normal and that it doesn’t take too long to get there.

  7. Kate, you’re still welcome over for dinner…but it sounds like you’d have to give me a menu! 😉 BTW, I know you’re a “from scratch” baker but the Stonewall Kitchen GF mixes are really good. Doughnuts, Brownies & even pizza crust. They’re not cheap but might be nice for when Ben is missing those treats. Get ’em at Roche Bros.

  8. My roommate has been gluten free due to gluten sensitivity for a few years now and the King Arthur products are her favorites. She’s taste tested a bunch and those are the ones she’d rank the best.

  9. Also, isn’t there gluten in some kids craft products? Stuff like Play Doh, finger paints, etc? I read a blog by a woman who has 2 little girls with celiac disease, and she’s always talking about the special gluten-free supplies she has to buy them. Sounds like you have a lot of work ahead of you, but it will be worth it for everyone’s health in the long run.

  10. Ugh, I’d never thought about replacing kitchen supplies, either, I’m so sorry. I’m glad it was caught now so hopefully you can get him on track. RE: non stick pans, I don’t know if this is any better than non stick in terms of cross contamination, but I’m now obsessed with my cast iron skillets I’m a Southern girl, so I grew up with it being used for cornbread and frying chicken, but in the last year I’ve started using my 12″ and 8″ cast iron all.the.time. I’ve gotten rid of our large non-stick skillet. We still have a small one for omelet making, but for any recipe I need a large skillet for (nonstick or otherwise), I pull out my cast iron. If seasoned and maintained properly, it will take on a non-stick property and you never have to replace it.
    It also sounds like you have some great resources available for the gluten free cooking, but I was just reading another blog I frequent (which you may already read), Girls Gone Child. Her mom does regular Eat Well posts and her recipes are gluten free. She just posted today for Thanksgiving a gluten free pie (and her GF crust recommendation). I’m sure that the holidays will make it harder to give up those things he loves, so I hope you can find some satisfying substitutions.
    Good luck with this transition and Happy early Thanksgiving!

  11. Hi Kate, I just came across your blog while doing a search for celiac. I’m sorry to hear about your husband’s diagnosis, but glad too for you both, because at least the mystery of his health ailments is over. My daughter (now 4.5) was diagnosed at 3 years old and my husband most likely also has celiac. My blog, celiackiddo, chronicles my family’s journey with the disease. With humor and wisdom, along with some totally warranted complaining. Oh and recipes too 🙂

    We have a GF house because it’s easiest (for us) but it’s totally a personal decision. Sharing jars of condiments and nut butters is not such a great idea, because bread crumbs hide in those, so either get squeeze bottles or separate GF ones. It’s hard(er) I think when an adult is diagnosed, b/c for a kid, you’re like, OK we’re getting rid of EVERYTHING gluten, but for an adult you hesitate a little. I wish you the best of luck on this journey, including finding out what is going on with your (adorable!) son.

    Good luck with Thanksgiving – what timing! Be careful with cross contamination. Sharing cutting boards is also an issue. Holidays are tough because gluten is usually everywhere. Bring your own food if you aren’t sure about other people preparing GF food safely. Oh, I feel for you, the beginning can feel overwhelming, but I promise, it does get easier.

    Finally, some weird things that contain gluten, besides soy sauce which you know (though there are gluten free soy sauces readily available) are medicines, chicken broth (!), and glue (more a problem for kids, obviously!).

    Wishing you the best,

  12. It is definitely very tough at first, but it will get easier! I am a dietitian, and while my primary focus is diabetes, I have worked with Celiac in the past. It is very common to go through all of the mourning stages, as if you have lost someone. It may be hard to believe, but soon it will be second nature to know where it is safe to eat out. Luckily, there are tons of resources today, with an expanding list of GF restaurants, as well as packaged foods. I think Trader Joes has a list of all of their GF foods. Anyway, you are smart and do your research, so I know you will all be fine!

  13. I’m sure you’ve run across this in your research already, but KAF has gluten free recipes: and apparently they’re having a sale on their gluten free products right now: Their products are amazing, and the gluten free stuff has good reviews–I’m sure it’s not exactly the same, but hopefully it’s still delicious? And we’ll definitely have you over for dinner after we move!

  14. Oh, such wonderful, helpful, supportive comments. You guys are the best.

    @Celiac and Allergy Awareness, You are so right — it is pretty amazing that everything you need to treat this disease is available at the grocery store. Yes, it does feel overwhelming and complicated right now, but I’m sure it will just become second nature soon. We are SO luck to have him diagnosed now, with such an abundance of gluten free products available as well. Also, I would LOVE to see your grocery shopping list!!!

    @Angie, I know, it was a huge process. We vacuumed those darn crumbs! I’m sure we’ll still have crumbs again in a few weeks, but at least they’ll be gluten free 🙂 That is actually the motivation for our kitchen to be 100% gf, so we don’t have to worry about crumbs ever again.

    @Megan, It’s a really good question (what would happen to Benjamin if he eats gluten now). Right now, the issue is intestinal damage more than symptoms (since his symptoms were relatively mild compared to most celiacs). That said, once he is off gluten for awhile, he may develop crazy symptoms when he DOES come into contact with it again. Poop issues, bloating, cramping, fatigue, who knows. So for now we’re working on healing his intestines, and in the future it will be maintaining the healthy intestine and also fighting any adverse reactions that might result from gluten contact. According to his celiac doc, there are 2 reasons why we are seeing more celiac diagnoses: 1. For the past few decades wheat crops have been modified to include MORE GLUTEN (b/c it makes bread fluffier). So our generation is actually ingesting far more gluten than our predecessors ever did, even if we are making our own bread products (since it’s the wheat crops that are used to make flour). 2. Better understanding of the disease and tests for identifying it. Celiac disease has existed forever, and people either dealt with/ignored their symptoms, or attributed them to something else (like lactose intolerance, which can look similar). Now that we have a better understanding that it’s an actual autoimmune response, we can identify it and “name” it.

    @Kara, You’d be so screwed if you were diagnosed with this 🙂

    @Kristy, Thank you! I’m sure, just like you said, that once it’s “the new normal” we won’t even think twice about it. I hope that day comes soon!

    @Katiering, Hahaha, YAY! I will definitely check out SK’s gluten free mixes. I’ve never seen those at the store.

    @Stacy, That is very helpful, thanks! I’ve seen those but for whatever reason have not yet tried them.

    @Jennifer, It’s true! Gluten is everywhere. We are past the point of Owen putting Playdoh in his mouth, but I will be much more diligent about washing his hands as soon as he finishes playing. I could likely make my own with gluten free flour blend as well — haha, I hadn’t thought about that! Same with glue — I’m not terribly concerned about him “eating” it at this point, so with frequent and thorough hand washing we should be able to negate gluten ingestion. I can’t remove him from everything he loves!!!

    @Beth, Totally hear you, I LOVE my cast iron! We opted to keep ours, as I don’t think it is porous like plastic, but we gave it a good scrub to remove the current “seasoning”, since I’ve made cornbread in it a few times. We can re-season with all gluten free stuff. Thanks for the link to Girl’s Gone Child! I read her blog erratically and didn’t realize her mom writes those recipes. Very helpful!

    @CeliacKiddo, Thank you so much, Dana! I will be sure to check out your blog. I had read about those weird places gluten likes to hide. You are right that Thanksgiving will certainly be a trial to our new gf lifestyle.

    @Jen, Thank you! Yes, I love that TJ’s gluten free list. I’ve been using it for Owen since we started keeping him wheat-free, and they have some great, great products.

    @Ellen, Oooh, thank you for those links! I’ve come across them but never tried any. Now is the time. Looking forward to seeing more of you once you move.

  15. I concur with Kate, thank you so much for all these comments and tips. It really is very helpful for us!

  16. I will! 🙂

    It’s SO very challenging in the beginning, and the learning curve can feel oh so steep. Because it is, at first. It may sound trite to say it gets easier with time – the details do for sure, but feelings do not disappear. There is real mourning to be had not just about foods gone forever (my husband still mourns for certain things) but also a sadness about just how much food is part of community and socializing. Of course you can still go out to eat but as you know it’s not simple like it uses to be.

    Honor the feelings but please know even those feelings do ease with time…

    My thoughts are with you and your family.

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