Recently, I had the pleasure of interviewing Karen Cranford, the president of our very own Celiac Sprue Association (CSA) chapter in Denver. I’ve known Karen now for about 7 months. We met when I became involved in the chapter and she helped me become the secretary. However, I feel that during this interview, I got to REALLY meet Karen and get to know her, which was such a joy. She has been the president of CSA for over two years and has helped, along with her many board members, build such a strong organization that has helped bring Denver to the top of the list in Celiac Awareness. She has helped the chapter bring the 'Incredible Edible Gluten-Free Food Fair™' to Denver as well as worked hard to get incredibly knowledgable speakers, such as Dr. Ford, Dr. Fasano, and Dr. Wangen, to Denver to educate us all on Celiac disease and gluten intolerance. We all get the joy of experiencing the hard work she puts in on a volunteer basis to make living gluten free easier on all of us, but now we get the special treat of actually getting to know Karen.
Jenn: How old were you when you were first diagnosed?
Karen: So it’s been 7 years, when I turned 50. I’ve always laughed and said “Turn fifty…get celiac disease!”
Jenn: How long were you having symptoms before receiving a diagnosis?
Karen: Well, it’s easy to look back and say maybe I was having symptoms for a long time. I started having migraines around 22, and now I wonder if that was a symptom. But, I was probably really sick for about two years before diagnosis. I saw my Dr and he did some blood work and I was borderline anemic. So, I went to my nurse practitioner, and she is the one that did all the tests. She suspected it, but didn’t say anything about it until we got the results. Sure enough, when my blood work came back, the antibodies were over 200, and normal is under 3. What she said was “I wish I could send you to a specialist, but there’s not really one here in Denver.” She said her daughter-in-law has it, which is the only reason she knew about it. It felt like fate, because for many people it takes up to 12 years. But, there were other things that should have been flags. I was terribly fatigued, my nails stopped growing, and I wasn’t sleeping well. But at the time, I didn’t put it all together. Jenn: Did the Dr say there was any indication of how long you’ve had Celiac disease based on how hi your antibodies were? I know mine were somewhere around 20. How do you get from 20 to 200?
Karen: Know one has ever said anything about that, but that’s a good question. What does it have to do with? How long you’ve had it? How much gluten you’ve consumed? I’m not sure.
Jenn: Well, I wonder about that because my biopsy didn’t show visible damage in my intestines, but the sample still came back positive. I wonder if I had gone undiagnosed for a longer period of time, if the villi would have continued to atrophy leading to visible damage.
Karen: Well, I had the opposite experience. My biopsy came back negative, and the nurse came in and said, “You don’t have Celiac disease.” So then the Dr came in and I said, “I don’t have Celiac disease,” and he said, “who told you that?” That was when he showed me one of the pictures and said to look how shiny it was. He told me that my villi were totally gone and confirmed the diagnosis of Celiac disease. The test probably came back negative because I had already been eating gluten free for a few weeks. There were other red flags too, like losing weight. But I could always make excuses for the way I was feeling.
Jenn: That’s interesting that you had no villi left. That seems to me that this must have been going on for you for a long time. Maybe it sometimes just takes a long time to actually cause enough damage that you really start to feel sick. For me, I had symptoms that seemed unrelated like dizziness and tingling in my hands and feet, and I could generally justify these and thought it was normal until I finally decided maybe I should mention this to my Dr. So, what was your initial reaction when you did find out you had Celiac Disease.
Karen: I remember initially thinking, oh okay, because I didn’t really know anything about it. It took a few days before it really sunk in that I had a disease, and that’s when it really hit me. Then I started reading a lot about it and learning, which helped to shift my attitude. My nurse practitioner was really helpful in putting things into perspective. She said, “you don’t have cancer. You can control this with diet.”
Jenn: How long do you think it took to actually get gluten out of your diet?
Karen: Boy, that’s hard to know or say. I know I started eating gluten free immediately and I didn’t cheat. But, I sit here after 7 years and doubt that I’ve never gotten glutened. Since being diagnosed and going gluten free I tend to be asymptomatic, sometimes making it difficult to always know. But, I do find myself sometimes wondering when I get a headache, if I got glutened, but that can be hard to know. It’s possible that I just have a headache.
Jenn: I think that is so important to remember that our bodies sometimes don’t feel good and it’s important not to start equating EVERYTHING to gluten. Sometimes, we really are just gassy!
Karen: That’s right, every ache and pain is not necessarily because of gluten.
Jenn: Right, although that doesn’t mean that we shouldn’t be careful and pay attention. It just means that we shouldn’t always just assume that’s what it is.
Karen: Well and for people who are very symptomatic it might be easier to tell when it’s gluten, but when you’re not, you often find yourself wondering. But it’s not always gluten, and I think that’s one of the toughest things for people to realize, is that NOT everything is because of gluten.
Jenn: What do you think about the learning curve? Even though you go gluten free, there is a such a big learning curve that you would almost have to assume that it would take some time to completely eliminate gluten from your diet.
Karen: Right, yes it does. I was diagnosed in May, and around July, I was visiting my dad in the hospital. He had some animal cracker cookies, and I hadn’t had lunch yet, and without even thinking about it, I picked one up and ate it! (laughter) It wasn’t till I left and was walking to the car that it hit me that I had just eaten something with gluten in it! It was so funny when I realized I just ate it like nothing! So, when your talking about the learning curve, that was definitely a little curve for me.
Jenn: Well, it makes sense though because when you’ve been doing things a certain way for so many years, and all of a sudden have to make this huge change, it’s quite a difference and mistakes just happen. Not too long ago I took a bite of a Twizzler without thinking, and then looked at the ingredients and the second ingredient was whole wheat flour! I started spitting and trying to get it out of my mouth (laughter). It just happens sometimes.
Karen: I know..it’s such a funny feeling when you do something like that because your like “where did my guard go?” It is kind of funny, but you’re right, there is such a learning curve. The other thing my nurse practitioner told me though, that was just so good, was “Don’t focus on what you can’t have, focus on what you can have. That will help your attitude.” The other thing she said was, “Eat really colorful!” As I started learning more about Celiac disease, that started to really make sense to me because you are giving up some of those vitamins and minerals you find in wheat products, that you need to replace with fruits and vegetables. That always stuck with me. So when I have some colorful vegetables, I always think of her.
Jenn: So, how long do you think it actually took for you to feel better?
Karen: Oh gosh, right away. As soon as I started the gluten free diet, I started to feel better.
Jenn: But, there are some other foods you can’t eat, is that right?
Karen: Right, so it’s been 7 years since being diagnosed with Celiac disease, and I’d say in the last 3-4 years, there were still some problems I was having, and as it turns out, I have several other food allergies. We’re talking dairy, egg, soy, bananas, pineapple, garlic, and cane sugar. Cane sugar is big for me, I can eat beet sugar, but cane sugar is a real bad allergy for me.
Jenn: How did you figure out these other food allergies?’
Karen: I went up to Dr. Wangen’s. I started having some problems again, and what did I do, I assumed I was getting glutened somewhere! So I spent the next two years ripping everything apart trying to figure out where I was getting glutened. But, somewhere in the back of mind, I knew it had to be something else. I had been listening to speakers and going to conferences, and finally Dr. Wangen started explaining that there could be a lot of other stuff going on, and as it turned out, I had a really bad bacteria and yeast in my intestines, along with these other food allergies. As soon as we treated the bacteria and the yeast and I cut these other foods out, it was like night and day. Now, I am like I should’ve been for those two years.
Jenn: So, how was that finding out that not only do you have to deal with Celiac disease, but now here’s all these other foods you can’t eat?
Karen: Well, that was kind of hard. By then, I had already gotten used to not having gluten and had gone through the whole grieving process and had gotten over giving up some of my favorites. But, yet again, I had to go through another grieving process over these other foods I now can’t eat. And, there are still times where I have my meltdowns. So, I tell a lot of newly diagnosed people, “you’re going to have your meltdowns, I still have my meltdowns.” There are times when I still think, “I can’t believe I can’t have gluten, and even worse, I can’t have all these other things.” There are still times when I think, “This is so unfair.” And, that’s okay, I have my meltdown and then I move on. The meltdowns get further and further between as time goes on.
Jenn: What do you think are the most emotionally challenging situations?
Karen: I would have to say that the times I feel the most emotionally challenged are when I am with my family and there’s not a familiar restaurant around to eat at. I feel a little bit of a panic sometimes when we go into that situation, and I don’t know if that will ever go away. However, I know that I can go into most restaurants and ask my 50 questions and figure out what I can have. But, for some reason, this still causes me a little bit of panic. That’s probably where I feel the least secure and that’s when I feel different than everybody.
Jenn: What helps you in that situation to keep going and not start avoiding restaurants? For some people, wanting to avoid these emotions, causes them to start avoiding restaurants and social situations where food is involved.
Karen: I suppose it’s my husband and my son. They are not Celiac and I feel bad enough that after 7 years they are subjected to only going to the places I can eat. I don’t want to be that burden, so even though I might feel that little panic, I try to outweigh it with giving them more variety than what panics me.
Jenn: Do you feel that the medical industry puts a little bit of extra fear in us?
Karen: Yes, I think you’re right. What just occurred to me is that everytime I go to a conference, I come home a little more depressed because the Drs have been emphasizing what can happen to you if you don’t have an absolutely strict gluten free diet. They stress, “don’t ever get any cross contamination, don’t ever get glutened, or all of these things can happen to you.” By the time I get done hearing the Drs talk about all the things that can happen to you, I come home a little bit more depressed. I think sometimes they do put more fear into us than should be, but then I turn around and have to recognize that there are those Celiacs that do cheat and think a little is okay, and we don’t want to give that impression either. We don’t want to give people permission to cheat.
Jenn: I totally agree. One of the things that has come up for me, is that sometimes I get cross contaminated and will feel crappy. But, ultimately I get better and learn from my experience in order to try again and do it better. I think sometimes for people that are newly diagnosed, hearing the absolutes leads them to panicking because they are given this absolute that is almost an impossibility to get right when first starting out because there is so much to learn, and you just don’t even know yet. It’s almost an unreasonable expectation to believe that the minute you walk out of your Dr’s office with a diagnosis of Celiac disease that you will be able to instantly be gluten free.
Karen: Right, you’re never ever ever going to get cross contaminated or served gluten (laughter)! You don’t want anyone to think that it’s okay to cheat or have gluten, but by the time you’ve heard all of this stuff, it’s overwhelming.
Jenn: That’s definitely something I try to emphasize to people as they are making these changes. It takes time, there’s a lot to learn, and you will make mistakes. I try to teach people to be patient with themselves and to learn from their mistakes, rather than getting upset with themselves and judging themselves for messing up. It’s hard. I mean, if you’re told your child has an anaphylactic allergy to peanuts, you are definitely going to stop your world to get rid of peanuts, but with Celiac disease, your life doesn’t just have to stop. I know I got the impression when I was diagnosed that I needed to drop everything else, and the truth was, I had plans…and things that were important to me that I didn’t want to miss, like out of town trips. I wasn’t going to cancel these things and let the fear run my life. How do you learn without getting out and trying?
Karen: Right, and when you do make a mistake, those are the best learning opportunities, because then you learn to ask that question the next time, that you didn’t know before. Even still after 7 years, I still find myself going, “I did not know that” sometimes. I guess what I’m saying is don’t let this diagnose stop your life. Learn to work around it.
Jenn: Right, for me, I think what’s the point of eating well and staying healthy if I’m not enjoying my life? So, for me personally it’s important to work around it and keep living my life. It’s finding the balance.
Karen: Yes, finding that balance is so important. Yeah, sometimes it’s inconvenient and embarrasing, but don’t let it stop your living.
Jenn: So, when did you get involved in CSA?
Karen: I guess it was about a year into my diagnosis. They were looking for volunteers. I guess it was Gina, she invited me to a board meeting and by the end of it, she had volunteered me to do the newsletter (laughter)! So, I did the newsletter for three years and now I’m two and half years into being president.
Jenn: How did it help you to get involved?
Karen: Leaps and bounds! By going to the board meeting and events I learned so much. One of the first things I volunteered for was to help Bonnie make phone calls for the product guide books. Well geeze I didn’t know anything, but through talking to Bonnie and learning how to ask and what to ask, I learned so much. Now I can pick up a phone number and call a company and figure out how to get the right person to talk to. Back then, the fear would have stopped me from picking up a phone and calling a company. I guess I figured if I’m going to have this, I’m going to learn as much about it as I can, so that’s why I volunteered. Plus, doing the newsletter helped me learn so much because I started paying attention to anything I thought was interesting. I figured, if this is good information for me, other people would want to know about it too.
Jenn: How do you think the Denver CSA chapter has grown and changed since you’ve been involved?
Karen: We’ve gotten a lot of new blood on the board. For awhile, I think we were a little stagnant, mostly because people are just very busy. But lately, we’ve had a lot of new ideas and I think people are really embracing the idea that this is not a life ender, this is just a life changer and the more we embrace it, the more we can make it good for everybody.
Jenn: Do you think the explosion in awareness and diagnosis has had an effect on the chapter and organization?
Karen: I think it has. In one sense, you have a lot of information available on the internet, but what I think people are realizing that without the chapter support group they are missing out on other learning opportunities. The chapter can help make that process a little bit easier.
Jenn: Do you think the chapter helps to reduce feelings of isolation and create more of a community?
Karen: I really think so. I know when I was first diagnosed that one of the first things coming up was the picnic, and I remember being worried about bringing something out of fear of making others sick. We encourage people now to just come and bring something already made gluten free or even just bringing themselves to mingle with other people and learn from each other.
Jenn: I definitely agree. I feel being on the board has helped me learn so much and gives me a community of people that I can ask questions of.
Karen: Absolutely, and there’s no dumb question, because we’ve all been there.
Jenn: Totally, it’s also a great place to let go of frustrations and to talk with others who understand.
Karen: Yes, being able to vent to people who understand is worth it in itself.
Jenn: So, another question I have, is how was it transitioning in your family?
Karen: With my husband and son it was very easy because they new how sick I had been. My son even learned to read labels and would read them for me in the grocery store. When you go a little further than that, my parents knew how sick I had been and were very supportive, but even though my mom realized and knew, she just didn’t quite get the cooking part of it.
Jenn: What about with friends and other people?
Karen: The one thing I have noticed, is that we don’t get invited as often to go over to people’s houses for dinner because they don’t get how to cook gluten free. However, all my friends that knew were very supportive and my good friends always take it into consideration. I’m the one they think about when choosing a restaurant. So, I’ve been real fortunate. Probably the toughest thing for me is when my son has a banquet or something like that. I usually call the facility a day or two before the event to find out what they are serving and see if they are familiar with eating gluten free and to find out what they have to offer.
Jenn: Are they usually responsive?
Karen: They usually are, but I may not get a whole plate of food, but usually they do pretty good. But, the one time I did feel forgotten about, was at an annual family BBQ, where I wasn’t told the food was going to be different than usual, and brought my own hotdogs just in case and thank goodness I did. No one asked if I was going to be able to eat there, and this was my family, the closest people to me, and I thought, “if they don’t care, who does.” I didn’t say anything, and I should have called ahead of time, but it had never been that awkward before. But it had always been the same, and no one told me it was going to be different.
Jenn: Well, and if it’s always been the same, it makes sense you wouldn’t think to call beforehand. It hard to always think of everything.
Karen: Right, and it’s hard because I don’t want to be high maintenance and stand out, but we are different and we have to speak out about it.
Jenn: True, and that can be very challenging, especially if you are a person who doesn’t like to be noticed to begin with.
Karen: That is so true, it can much harder for people who don’t like to speak out in public. For me, whenever I go to a big event like this now I always offer to bring something. Even if they say I don’t need to I always do, just in case if I get there, and nothing seems safe, there is at least one thing I can eat. Even if I have a big plate of just one thing, at least I know I can eat, and I won’t go hungry.
Jenn: What do you think about getting accurate information?
Karen: There’s a lot of wives tails and it’s important to get accurate information, which can be challenging because there is so much misinformation on the internet.
Jenn: Absolutely, sometimes there are conflicting answers and different information about the same products. Sometimes it’s hard to know for sure.
Karen: Yeah, sometimes it’s just easier not to do something because you just don’t know. This is why sometimes it’s easier to just not go becuase you don’t want to ask your 50 questions and it is easier to go to the places you know.
Jenn: So it’s been so great talking to you today and getting to know more about you and sharing these questions, thoughts and ideas with someone else that understands. I have to admit to you that when I first started going gluten free, I cheated. I don’t anymore, but it took me awhile to really accept my diagnosis and understand my symptoms.
Karen: Do you think part of that is because you know more?
Jenn: Absolutely, and a big part is understanding my symptoms more. I didn’t realize how bad I felt until I felt better. Once I really understood how bad I felt, it helped me make better choices, because I don’t want to feel like that anymore.
Karen: So, that’s what makes it hard to be asymptomatic because it’s hard to tell if I’ve had gluten. But, what I do tell people, is that as sick as I was, I never want to feel that way again. I think most people that were that sick, as many of us were, will not cheat because they don’t ever want to be that way again.
Jenn: So, after everything we’ve talked about today, my last question for you, is what would you say to someone who is newly diagnosed if you could only tell them one thing?
Karen: Probably the one thing would be what my nurse practitioner told me. That is, “Focus on what you can have and not what you can’t have” because focusing on what you can’t have will only drag you down. And, if I could add one more thing, I would want to remind people that they will go through some grieving and that’s okay. Don’t try to stop that, it’s necessary.
Jenn: Absolutely! Thank you so much for sharing with me today. It’s been such a great experience. I look forward to others getting to hear your thoughts and experiences.
———————— Author Information: Jennifer Slack, Denver, CO Denver Gluten-free Examiner at Examiner.com Jennifer is a Licensed Clinical Social Worker and an expert on changing negative emotions, thoughts, and behaviors. After being diagnosed with Celiac Disease last October, she learned there was more to transforming her life around food beyond knowing what to eat and what not to eat. There were unexpected social, emotional, and behavioral challenges that arose. Since learning how to cope with these obstacles herself, she has begun teaching others how to cope effectively with the barriers that interfere with successfully changing one’s entire lifestyle around food. You can reach Jennifer at her e-mail address