ID-10013871

So you just found out that you have Celiac Disease….now what?

This post is in honor of all of us whose only advice was to “eat gluten free” after diagnosis!

1. Cry. Be angry. Complain. Mourn the loss of gluten from your life. You will never be able to eat pasta, pizza, chocolate chip cookies, or drink beer again. Feel sorry for yourself. Cry and yell some more. Get it all out, emotionally, at the beginning. FYI, I was so angry and in denial at first that I ate a whole sleeve of Thin Mint Girl Scout cookies and then cheesy pizza bread sticks within a 24 hour period right after my testing was complete…the effects on my body were so horrible, that I was able to then go gluten free and never look back (I just wish that I been smarter about choosing my last gluten-containing foods).

2. Learn about which foods contain gluten. There is a great list on the Living Without Magazine website (see link). Remember that you can never eat any of the following again: wheat (einkorn, durum, faro, graham, kamut, semolina, or spelt), rye, barley, triticale, malt, malt flavoring, and malt vinegar. Get used to reading ingredient labels and calling companies to inquire about gluten in foods and products. Two of my favorite lists come from the page www.withstyleandgraceblog.com:

Common sources of gluten

gf safe list

3. Purge your kitchen, bathroom, and medicine cabinet of gluten. You will give away/throw away more than you could ever imagine.  Gluten Free Makeup Gal’s website can help with cosmetics and www.glutenfreedrugs.com can help you to find out if gluten is lurking in your medications.

4. Get copies of your Celiac tests (antibodies, genes, pathology results). Read through them, learn from them, and share them with your family members who may need to be tested.

5. Find reliable sources about Celiac Disease and sign up for internet newsletters, Facebook pages, etc. My two favorites are the National Foundaton for Celiac Disease Awareness (www.celiaccentral.org) and the University of Chicago Celiac Disease Center (www.cureceliacdisease.org).

6. Do not give in to the urge to replace all of the foods you threw away (pastas, breads, salad dressings, etc.) with gluten free versions. Try one or two gluten free products out a week, as many of these foods are very expensive, may not taste good, and contain a lot of sugar and empty calories. Focus on eating a lot of whole foods (fruits, veggies, lean meats, fish, potatoes, etc) in the first few months if you can.

7. Explore shopping for GF foods online, as you may be able to save quite a bit of money. I’ve been able to order flours and mixes, i.e. Bob’s Red Mill, for almost 50% off what I would have paid at my local grocer.

8. Find a few “go-to” meals and snacks for when you are time pressed but need to be able to safely eat, i.e. Larabars and KIND bars.

9. Find a support group, whether it be it a local group or online. I have actually found some really nicely moderated support groups on Facebook.

10. Discuss whether or not you need supplements with your doctor or practioner. A lot of us are anemic and/or Vitamin B12 deficient in the beginning. It is important for us to have our Vitamin D levels and our thyroid function monitored. There is emerging information on the role of altered gut flora (bacteria) in inflammation of the digestive system, so you may want to consider a probiotic as well (see my post on probiotics for more details).

11. Encourage your family members to get tested. First degree family members (parents, siblings, and children) have a 1 in 22 risk of also having Celiac Disease. Second degree family members (aunts, uncle, grandparents) have a 1 in 39 risk.

12. Expect a change in how you socialize. Gone are the days when you can freely eat and drink whatever you’d like at every party, potluck, wedding, etc. Some people will go out of their way to accommodate you, and others won’t. Some will care about your diagnosis, and others won’t (and it will be difficult to predict who will care and who won’t). You will feel “left out” at least some of the time. Get used to bringing your own food and snacks wherever you go. I always bring a GF item to every social gathering I attend, so that I am assured that there will be one food that is safe for me to eat.

13. Take care of your body. Run, walk, do yoga, meditate. Use your diagnosis as an opportunity to take charge not only of your diet, but your overall well-being. Once I was gluten free, I was able to run again after years of not having the endurance to run more than 2 miles.

14. Cry. Be angry. Complain. There will be good and bad days at first, but with time, the good days will outnumber the bad. It will get easier, I promise!

One of my favorite reminders to take care of myself:

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18 thoughts on “So you just found out that you have Celiac Disease….now what?

  1. Dana

    Great post Jess! I think it’s important to mourn the loss of gluten and acknowledge the sadness and challenges before moving on, and I love how you give permission to cry again if necessary :) some sites are so full of the “chin up” attitude they forget to honor ALL the emotions that come with big change.
    -Dana

    1. Jess Post author

      Hi Dana,
      Yes, it is a huge change, not only for those with Celiac Disease but also their families. Like I said in the post, I literally fed my anger with too many Thin Mints! It has been, in so many ways, a positive change for me, as I feel so much healthier than I ever had, but I do get sad about it from time to time (especially every time I get accidentally “glutened.”)
      I agree that there are a lot of people who post about extremes related to Celiac Disease. There are those who have a perpetual, “it’s great to have Celiac Disease and be gluten free,” stance, and then those who truly seem to be miserable about it all of the time. Like most challenges in life, it is important to proceed on and to find a healthy balance. Some days are more balanced than others.
      Anyway, thanks for reading and for all of your support as I have gotten this page up and going!
      Jess

  2. Tammy

    Thanks for sharing. I am just beginning on my gf life. I have just gotten confirmation on my 3rd AI disease. Vitiligo was first, then after a couple of years of mild depression, almost going crazy with brain fog, inability to find words, memory difficulty, and many other issues, pernicious anemia was diagnosed in 2009. Still not getting relief from some nerve issues, constipation, weight gain, I finally got medical insurance and could go for more extensive testing/bloodwork in Oct. TSH came back elevated at 5.6 and Vit D was very low. Started synthroid in Oct 2012, that caused some added nerve pain and numbness. Stopped taking that on my own and asked for more detailed testing, my doctor agreed and also agreed to start a Natural Dessicated Thyroid product. I will begin that after the blood work comes back. Met with her this week and got the confirmation that the thyroid issue was Hashimoto’s, we are now waiting on test result for Celiac Disease. I quit gluten as of April 14th and have lost 7 pounds, so far and I don’t have as much bloating and gas issues. I am hoping once I begin the NDT that I can really get optimal and maybe that will help my nerve endings to begin to heal. I look forward to reading the information you have here on your blog. Who would’ve figured that my cornbread/biscuits/pizza would be killing me slowly?? :(

    1. Jess Post author

      Hi Tammy,
      Thank you for sharing your story. Like you, I have Celiac Disease and Hashimoto’s Disease. I also developed a peripheral neuropathy last fall which took a while to resolve. I had a very thorough work-up for it and it ended up being as a result of being exposed to traces of gluten as opposed to hypothyroidism. For my first 2 years of being GF (and I was very strict about it) we kept a “shared” kitchen, but I had my own condiments, toaster, cooking utensils, dish sponge, but despite this (and probably because I am taking care of 4 little people), I was still getting a little bit of gluten into my system. From what I have read, Celiac Disease is actually now the 3rd most common cause of nerve inflammation and numbness (neuropathy), behind diabetes and alcoholism. It took about 8 weeks to go away, and the numbness has only returned 1x, after an accidental gluten exposure in January. Do you get the foggy brain as well? I am glad to hear that you are starting to feel better and I hope that your health continues to improve. Please let me know if you have any suggestions for topics which I should try to write about on here!
      Jess

  3. Jess Post author

    Hi Tammy,
    Thank you for sharing your story. Like you, I have Celiac Disease and Hashimoto’s Disease. I also developed a peripheral neuropathy last fall which took a while to resolve. I had a very thorough work-up for it and it ended up being as a result of being exposed to traces of gluten as opposed to hypothyroidism. For my first 2 years of being GF (and I was very strict about it) we kept a “shared” kitchen, but I had my own condiments, toaster, cooking utensils, dish sponge, but despite this (and probably because I am taking care of 4 little people), I was still getting a little bit of gluten into my system. From what I have read, Celiac Disease is actually now the 3rd most common cause of nerve inflammation and numbness (neuropathy), behind diabetes and alcoholism. It took about 8 weeks to go away, and the numbness has only returned 1x, after an accidental gluten exposure in January. Do you get the foggy brain as well? I am glad to hear that you are starting to feel better and I hope that your health continues to improve. Please let me know if you have any suggestions for topics which I should try to write about on here!
    Jess

  4. Chalice Sandheinrich

    Hello, Just curious if your numbness happened all of the time or just while you were sleeping. I have been experiencing numbness for a couple of years now, but mostly when I’m trying to sleep. The numbness does not seem to go away, no matter which way I lay and at times I swear I feel like I’m missing a limb when I wake up with it. That coupled with insomnia and the digestive problems truly leave me struggling daily. Hoping eating gluten free will help with all symptoms.

    1. Jess Post author

      Hi Chalice,
      My numbness was actually pretty persistent and was worst in my right foot. I don’t recall it waxes and waning much in intensity. I also had it in my fingers and sometimes on my right upper lip back when I was having issues with it.
      I hope that yours will resolve after being gluten free for a while. Please keep me updated!
      Jess

  5. Vik

    Jess, thank you for your blog. I know it is a lot of work, and it is a great resource. I was diagnosed about 2 months ago, and identified with much of your post. I had a final “gluten rampage” as well, since there was about 6 weeks of lag time between the diagnostic blood test and the biopsy, and I was told to continue eating gluten meanwhile. Since I don’t get dramatic signs of gluten poisoning, I ate something of everything I loved and said goodbye to it as I ate it. And since the day after the biopsy I have committed to the GF lifestyle. The thing that has bothered me the most, has been the research I’ve had to do, the endless calls and emails to manufacturers of everything. Everything. Reading a label isn’t good enough in almost every case. I got kinda nutso during those first delirious shopping trips, when I’d read Gluten Free on the front of the item, then turn it over and see that the item is made on shared equipment, or in a facility that processes gluten items. Or if the item was not something you would even suspect of being made that way, like tomatoes or nuts. I’m keeping a list of all my findings, and plan to compile it for my friend who has the reciperenovator.com blog, and will let send you a link when that goes live. Then, there is the hope that all this “rightness” that I’m striving for is actually working, and fear that something is not working I have malabsorption issues to clear up that scare me when I think about them. So far I feel like I am getting overall better guidance from the online world than from my HMO. But there is also a lot of conflicting information in the online world as well. This is why, Jess, it is so great for someone like you, despite a busy practice and lots of kids, is taking time to pass along your knowledge on your blog. Thank you.

    1. Jess Post author

      Hi Vik,
      Thank you for your kind words. I hope that you start to feel better soon and I look foward to seeing your list on your friend’s blog. It is extremely overwhelming to make the transtion to being gluten free, and looking back, I don’t think that I took cross-contamination seriously enough in the beginning…it took a few mistakes with me getting sick from eating “no gluten ingredients” foods, made on shared equipment or and/or in shared facilities, to finally “get it.” It sounds like you are ahead of the game. Perhaps I should edit my post to include a blurb about cross-contamination? Let me know what you think…
      One of my biggest pet peeves lately has been going out to eat and finding all sorts of places with GF menus, only to discover, uopn questioning the servers and managers, that the GF items are made on shared surfaces, fryers, skillets, etc. with gluten containing food, so the items are not really GF. I am fortunate that in my relatively small town that there are 3 places that I can dine out though, it could be much worse I suppose.
      Jess

      1. Vik

        Hi Jess, yes I think mentioning potential cross-contamination would be a great idea. Just about anything that comes in a box or wrapper or package or bag or jar or bin, could have come into contact with gluten, depending on the manufacturing process. Including some of the items on the gluten free list above, I know this from experience. And many companies do not even, and are not required to, put the info about shared equipment, or gluten in facility, on the label. So you have to call or email, you never know otherwise. And good to re-check after awhile too.
        I know what you mean about the restaurants. Really annoying. I’m glad that you have at least found three, which is more than I have during this short time. I haven’t done much dining out, but when I have, I have taken food with me to restaurants! It is challenging to have ask all the gluten questions. How did you find your places?
        For anyone reading, I want to reiterate what Jess said in her initial post, the nuts and bolts part of this, does start to get easier. This is true for me after 2.5 months and the first million or so phone calls and emails and shopping trips :-) . You get your core group of food/supplements/personal products/meds that you know are safe, get new kitchen equipment, then can relax some. Some people report immediately feeling profoundly better. After two months I feel less stiff, so even though I don’t really know what’s going on internally, I figure I must be doing something right.

  6. Molly (Sprue Story)

    Great tips! I totally feel you on wishing I’d picked a better “last meal” of gluten (since mine was Nutter Butters).

    Now seems to be a particularly good time for #7, since there are deals and coupons going on in honor of Celiac Awareness Month. I am buying ginormous boxes of Chex from Amazon as we speak (not that that’s the very realest of foods, but we all need our little indulgences).

    1. Jess Post author

      Molly,
      I guess that Nutter Butters and Thin Mints are better than something really boring being our last non GF food, like a piece of white bread or something. Someone should start a business throwing parties for people who have just been diagnosed with Celiac Disease with a bunch of really good tasting GF food options. It would be much less depressing than my experience of going to the grocery store and buying a loaf of Ener-G bread.
      Keep up the great work on your blog. I have really enjoyed reading it and will keep spreading the word about it!
      Jess

      1. Vik

        Speaking of Ener G bread… how is it? I’ve looked at it in the store and it just seems so weird for bread to have a year shelf life. I like the idea of it, because there are very few gluten-free and vegan breads, that are made in a dedicated GF facility.

        1. Jess Post author

          Hi Vik,
          I only tried it one time, right after I was diagnosed, and I made it into a grilled cheese sandwich and it was not very good and it fell apart easily. I ended up making the rest of the loaf into croutons, if I’m remembering correctly. This was in 2010. Perhaps it’s improved? If you give it a try, and have a positive experience, please let me know (so others can get guidance if they read through our chain of replies to each other!)
          Jess

  7. Dana

    This a really helpful! My only question, did you feel really awful when you first cut gluten? I mean is it normal to feel crappy the first few days? I’m on day two and its like all of my symptoms are flarring up. I don’t know if I somehow screwed up or if this is just normal.

    Thanks!

    1. Jess Post author

      Hi Dana,
      I did not feel awful when I cut out gluten, but most others who I have met with celiac and gluten sensitivity describe a period of feeling awful for about 2-4 weeks after going GF. It’s known as “gluten withdrawal.” I am unsure if there is any real science behind it, but I believe that it can and does happen to many. I hope that you get through the worst of it soon! It will be worth it to feel better in the end and regain your health.
      Jess

  8. Candace Billings

    Thank you for all the great tips and links with helpful information. My 8 yr old son was just diagnosed this week. He’s going through some sadness and anger, but handling it better than I would’ve expected. I’m going through some ‘mom guilt’ for not discovering it sooner. I’ve also begun my crazy phone calls, ingredient reading, web searching madness, & etc. My husband and I are struggling with the adjustment as much as our son, I think. It would help to find tasty GF foods that can somewhat compare to what other kids like to eat, so my son doesn’t feel so left out at school and social events. I’m still on the mission to find such things. Your blog helped me see that we’re going through the same things as so many others, and that brings some comfort. Thank you.
    Candace

    1. Jess Post author

      Hi Candace,
      I am so happy to learn that this post was helpful to you. I know that it gets “repinned” a lot on Pinterest, but very few people who read it take the time to give feedback. I appreciate that you took the time to.
      I am glad that your son is adjusting well, and he is very fortunate that he was diagnosed at such a young age.
      I have tried a lot of awful tasting GF food since I was diagnosed 4 1/2 years ago, but I have also came across a bunch of great GF food too. There is a huge learning curve but it gets easier with time.
      I wish you and your family well.
      Sincerely,
      Jess

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