5 Questions. 5 Answers. (Part One)

celiac mailbag

I currently have 4,203 emails in my Gluten Dude inbox. No…these are not all reader emails (but a lot of them are!). I also get an email whenever someone leaves a comment on my site. And oddly enough, my inbox also includes one from the CDF, who actually (and possibly illegally) added me to their email list when I called them out last week regarding Cheerios.

Anyway, when I get really behind on reader emails, the only way I can catch up is to force myself to focus on answering them for a specific stretch of time. Back in 2014, as part of Celiac Awareness Month, I answered one reader email per day for the month of May. I called it “30 Days / 30 Celiacs”. Brilliant…eh? Forget the fact that there are 31 days in May.

And in 2015, I answered 14 emails in 14 days. Because I’m so clever and original, I called this one “14 Days / 14 Celiacs”. I know…you don’t have to say it.

Well here we are in 2017 and I am WAY behind. So I will be doing a series of “5 Questions. 5 Answers” until I can somewhat catch up. Why 7? Originally I had 3 and seemed like a cop out. Then I went to 7 and I realized I won’t have the time for that this morning. So I settled for 5. Gee…wasn’t that an interesting story?

Ok…let go. And by all means, feel free to answer these as well (and berate me if I give a bad answer.)

1. Thank you for your awesome blog and book. You are a fantastic advocate and have been so helpful as I learn to navigate life with CD. I am SO careful – eating as much as possible out of my 100% GF kitchen, only eating out at the handful of 100% GF establishments near me, reading labels like a hawk. The payoff has been my tTG IgA getting down to 5 at last check. The last couple times I have gotten glutened, I haven’t been able to figure out what did it. When I told my one of my GI specialists this, he actually recommended I go out and eat a slice of non-GF pizza and see what happens so I can track my reaction time. I hope he was kidding and of course I haven’t done that. Anyway, how do I stop beating myself up over this? It’s exhausting and I’m sure it is not helping me heal.

Step one: Find out if your GI was kidding. If not, find another GI.

Step Two: DO NOT beat yourself up. Unless we live in a bubble, we are bound to get hit once in a blue moon. Try to find the culprit but if you can’t, just move on. You seem to take all of the necessary precautions. But it’s a gluten-filled world out there and the only person/company who has your health in their best interest is you. You’re human. You have celiac. It’s not gonna be perfect 100% of the time. Move forward.

2. My sister and I have recently been getting sick and the only thing that we could think of that had been strange in our diets is Chex. I know for sure that Chex now makes a wheat Chex. I’m wondering if maybe Chex cereal isn’t safe anymore? Do you know anything? I hope to hear back from you.

I used to eat Chex when I was first diagnosed. I actually used to eat a lot of the gluten-free cereals. After a few years of still feeling like crap, I knew my body wasn’t healing. I completely overhauled my diet (did the Whole30 to jump start it) and part of that overhaul was getting rid of unhealthy gluten-free cereals. How unhealthy? Here are the ingredients of Honey Nut Chex:

are chex really gluten free

While it may (or may not, knowing GM’s standards) be gluten-free, it doesn’t mean you should be eating it. Your body is always talking to you. Listen to it.

3. My son was just diagnosed with celiac. He has no symptoms. At a check up he lost about 9 lbs and my pediatrician is very good so she tested him. He is leaving for college in 4 weeks. He is in denial about having this. My question is do you have any advice I can say to my 18 year old to convince him to go gluten free?

This is a tough one. The only thing I can recommend is education and a good support system. Make sure he knows the long-term effects of eating gluten, even if he does not show symptoms. I only know that when I was that age, anything my mom said to try to help me came across as “badgering”. It was only until years later until I realized I should have listened more. But to my defense, it wasn’t her message I was ignoring. It was the way it came across. Although I’m sure it came from a place of love, she said it with anger so I turned her off. Love can do magical things. Support him. Guide him. But he’s got to find his own way eventually (but a lot sooner than later).

4. Hello. I have a seven year old daughter that has celiac and we live a very strict life when it comes to food. I have probably a thousand questions for you, however I’ll just start with one.

You mentioned a blue sponge. Do you hand wash only your dishes? I have struggled for years about washing her plates (she has separate everything, except silverware, which makes no sense as I type this, but again, that’s probably question number 546 out of the thousand – anyways) and other cookware in the family dishwasher (not a completely gluten free kitchen – 92%) . Do you as a precaution keep ALL of your kitchenware separate and wash them by hand?

I’ll admit now that for the first two years (she was diagnosed at age 3) I literally made myself crazy about cross contamination and totally made myself sick over her lab results (which have NEVER been normal), so in order to find some sense or normalcy I had to pull back some on the craziness, so hence the silverware comment.

Thank you for your time, it’s nice to reach out to someone who understands. I look forward to your response.

For those of you unaware, we have a blue sponge at the Dude Ranch that is only used on dishes that had gfree food on it. All other dishes get the red sponge. Now in response to your question…it’s not clear if you have a dishwasher or not. If so, than I would not worry so much about separate silverware and dishes. For anything that is hand-washed, I do have my own. Examples include pots, pans, colanders, etc. And one piece of personal advice: don’t make yourself crazy. Trust yourself that you’ll do the right thing. Take extra precaution. Be 100% diligent. But breathe. You got this.

5. I’m calling to get the blood test for Celiac from my kinesiologist. Should I also call my primary care physician? Should I request a biopsy? Can they even be done? I’m nervous the blood test will come back negative, and everyone will tell me to go on my merry way when I know it’s an issue. Feeling kind of lost, and just want solid answers.

A few thoughts here. 1) Not sure about the kinesiologist, but I’d say you are better off with someone who specializes in celiac, like a qualified GI. 2) The gold standard testing is still a blood test, followed by an endoscopy. 3) Screw what everyone else has to say about the way you take care of your body. It’s YOUR body.

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17 thoughts on “5 Questions. 5 Answers. (Part One)”

  1. At 18, frontal brain development and executive functioning have a long way to go, and the social pressure to eat ‘normal food’ in order to fit in to make friends may be very tough. Campus resources like true GF snacks at the bookstore will be really important. Maybe send a care package once a month with dorm-friendly, non-refrigerated items to ease the burden of hunting for the right foods when all that seems important is getting food into the face hole? I know how hungry I was all the time when I dropped weight! I was soooo hangry all the time, not matter how much I ate.

  2. If everything seems strict but there are occasional symptoms, can you try eliminating xanthan gum? Shauna James Ahern went through this testing holiday cookie recipes, and now her books are gum free. Most of Gluten Free Small Bites looks gum free, too. I’ve had better luck with finding gum free sandwich bread lately (CA, USA)

    1. I second that! A quick Google search will tell you that loads of people struggle with gum, especially xanthan gum and guar gum. I don’t think it’s meant to be eaten by humans really.

  3. Celiac disease and associated food toxicity. Some estimates place gluten sensitivity rates at 30% of the US population is gluten sensitive. A gastroenterologist publicized the relationship between celiac and its cross-mediators/cross-reactors: yeast, dairy, egg and coffee. Additionally, symptomology can occur with: preservatives and artificial flavoring. Through trial & error, I discovered other foodstuffs that create a toxic effect: flower and seed oils. Research of the oil extraction processed revealed that extreme heat and chemicals creates toxins. This too contributed to the GI effect. Corn is one of the most commonly hybridized foods. It can be found in free-flowing agents, and cellulose. Corn has been added to my gluten cross-reactor list as it causes abdominal pain. The box of ingredients shown contains canola oil (heat extracted from a poisonous plant) and corn. Please Note: Modern wheat is an assault on the health of many thousands of people. 1. Celiac enteritis 2. Celiac encephalopathy 3. Celiac steatorrhea 4. Gluten-sensitive enteropathy 5. Celiac related dermatitis hepetiformis and 6. Gluten ataxia are a few of the modern wheat era diseases captured by the World Health Organization (W.H.O.) Most of the above disease listing are NEW disease occurrences that have been added to the disease reporting statistics.

  4. To the mom with the daughter who still has abnormal blood tests … it took me nearly 16 years to get my blood levels into “normal” … 1 below abnormal. I had to become very, very strict with my food and meds to get that. Cross contamination is always a possibility. I don’t know you or your daughter, but if your daughter is with other children, she “might” not be eating totally gluten free when you are not there. I have grandchildren who just could not resist being “normal” around other kids. They claimed to their parents they never ate regular food, but confessed to grandma they sometimes did. Don’t go crazy. Just do your best to keep her safe and teach her, with lots of love and understanding, about her disease. In the end, only she will be able to keep herself gluten free cause you just can’t be there all the time.

  5. This is for the mother that just found out her son has Celiac. I simply had to respond. My own son is 20 and we found out he has Celiac about 5 months ago. That’s after a year of agony up at college, and the saga continues this summer as we try desperately to get him well. I pray that you find a way to get through to him how important it is that he take this seriously.

    Like your son, mine started losing weight about a year ago. It took us a while to notice, but once he came home for Thanksgiving, it was clear there was something very wrong. The weight loss continued and I won’t even tell you how much. He felt terrible all the time, too tired to function, could not remember where his keys were the moment he put them down, fainted several times on campus, caught every virus that came through, had constant diarrhea, body aches, and to this day the worst part is the severe depression. He has now been home for the summer, and we thought since we knew the diagnosis, we would have him healthy by the end of the summer. We were wrong.

    After countless blood tests, urine tests, stool tests, and reducing his diet to only organic meats and vegetables and 2 oils, now trying to add back in some more foods because he is not gaining weight…. WELL, you’ve probably got the picture. The IBS symptoms he has are the least significant. This disease has caused a cascade of other problems and we are now struggling to figure them out.

    You are SO blessed to have this diagnosis now, before it has taken a toll. If you think it would help for your son to talk to mine, I offer my email address. IamChristyEller at gmail.com

    1. Just a thought … has your son been tested for Grave’s Disease or Hashimoto’s? Also, it can take a very long time for the villi and the gut to heal. Some 6 months … some 2 to 5 years … some even longer. Just saying you may want to wait a bit before adding back too much to his diet. It took me 16 years before I could eat eggs again.

      1. Thank you Deb, I do hear you. Our last battery of blood tests comes back soon and hopefully we will know more. His thyroid profile seems messed up, but doesn’t fit either Hashimoto’s or Graves… of course the MDs say his thyroid all looks fine… but we have a functional med dr. who is digging much deeper of course. I hate to add foods back that may slow healing, but he is dangerously thin, to the point of not being able to function. I hope we find out there are supplements that can help so he can gain some weight without adding foods back that might cause trouble. Right now it has been about 12 months since he has been able to work or do much of anything but sit at home and take a short walk once in a while, because he is so weak. Last few days have been slightly better, hoping that trend continues.

        1. Have you ever read the blog “Casey the College Celiac”? Your son (and maybe you, too) might find some comfort in reading about her problems back when she started college. She, too, was dangerously thin and unable to gain weight. If you go back to the earliest blog posts, you can read how she wound up, early in her freshman year, in a hospital with a feeding tube up her nose, and how she came back from that. The good part is that, while it took her a while, she did get better. She’s entering grad school this fall.

            1. Gluten Dude told a lot of us about her in “Sending a Big Virtual Hug to a Struggling Fellow Celiac” back on September 23, 2013. You might find that post and all it’s comments interesting, too. I had to go full screen on Casey’s blog to see the “Archive” option; that lets you find her original post on July 13, 2013.

    2. Thank you for your honest response. He is starting to come around but still having a hard time. My son doesn’t want to talk about it or be the center of attention so I don’t think he will talk to a stranger. If he changes his mind I will contact you.

  6. Our kitchen is not gluten free. Everything subjected to gluten is gone over with a scouring pad, then run through the dishwasher. Gluten is extremely sticky, hence the scouring pad. So far, this procedure is working for me.

  7. Hi Gluten Dude,

    This is a weird question: Do you know if whether a celiac blood test might be adversely affected if, while loading up on gluten for a couple of weeks in preparation for the test, I take anti-diarrheal pills as needed between now and the test day? I would ask my doctor, but I don’t have one yet for celiac or other gastrointestinal disorders. I’ve ordered the blood tests (two) directly from a test-supply website, and will get the test done at a lab. I emailed the company with this question but got what sounded like an automated answer (“Ask your doctor”). I don’t want to mess up the test results, but neither do I want to be in a dire predicament if I’m not at home. It makes me wonder whether a lot of other people in similar situations have needed to take those pills before their tests.

    Thank you for any advice you can give me! So glad I found this site.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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