Mailbag Time

celiac mailbag

It’s six in the morning and I’ve been up for 4 hours already. Yeah…sleep has not been my friend lately. Before I go grab my 13th cup of coffee, let’s do a quick mailbag.

Hey Dude! (You ROCK!!) I am your redheaded Celiac sister in Indiana. I love the work you are doing for us all, and your humor and great attitude and support. I have learned to much from you during my GF journey. I was diagnosed in 2011 and have been completely and faithfully GF. Something has been wrong this past month. I have wanted to stop eating all together. When I don’t eat, have nothing in the system, I feel pretty darn good. But as soon as I eat (doesn’t seem to matter what), most days not until after 1pm, bam! Cramps double me up and I am miserable for hours, making me mad that I ate at all. Any input, O Wise Dude?

Growing up with 3 older brothers, I always wanted a sister, so welcome to the family. I’ve been thru stretches just like you describe where no matter what I eat, I feel like poop. That is usually my body telling me to clean up my act a bit. At that point, I recommend doing the Whole30 or following the AIP diet for a while. It’s kinds like hitting the reset button and it’s worked wonders for me.

I travel as part of my job, and I’m frequently “set up” with team meetings/etc… that of course revolve around dinner. I’m notified of the restaurant, and then get to spend my time figuring out whether I can actually enjoy the meal or not. As I’ve been contacting these restaurants, it struck me that it would be nice to have a “standard question” list that would help make sure we don’t forget things.

Not sure about a standard question list as every restaurant is a bit different. I once wrote about my experience going to a brand new restaurant and the steps I took to hopefully ensure a safe meal. Here ya go:

Step 1: A few hours before we left, I called the restaurant and asked to speak with the manager (who sounded about 12…first bit of trepidation.) I explained my situation and I was told they actually had a gluten-free menu. That’s a good sign, but not a guarantee they have their sh*t together.

Step 2: As we entered the restaurant, I again asked to speak with the manager just to say “Hey…I’m the guy who called. Please be my friend tonight.” We went over the menu a bit and I took my seat.

Step 3: While everyone else looks at the menu to see what they want, I study the menu to see what I cannot have (which is usually about 95% of the menu). It’s a process of elimination that can take some time. If it’s a large menu, sometimes I don’t even bother and I just wait until the waitress comes along.

Step 4: The waitress comes over to the table and I stand up and quietly explain my situation to her. Note that I said quietly. I hate the attention that my situation brings and I also don’t want to put the waitress on the spot in front of the whole table. We go over the do’s and don’ts and the can’s and can’ts of making gluten free food.

Step 5: It’s time to order. The moment of truth. I usually have at least three items that I will ask questions about and will always go with the safest choice, even if it’s not my first choice.

I have (list of symptoms goes here). Do you think I have celiac disease?

I get these types of emails a lot. I don’t answer them or any medical questions unless I am absolutely sure of the answer. Please, please, please, if you suspect celiac, go to the doctor. The gold standard is still the blood test, followed by an endoscopy. Here are the symptoms of celiac disease. If you’ve got some of these, call your doc and make that appointment.

Like most people dealing with gluten related issues, I’m feeling frustrated and confused. I have been sick most of my life with multiple issues, but things really began escalating in the past year. Finally after not being able to deal with the pain and exhaustion by myself anymore I went to my family doctor. She ran a slew of tests and my gamma globulins and anti-gliadin IgA were very elevated. She then informed me that I most likely had Celiac’s (stab of fear!) and sent me off to a gastroenterologist (who had a horrible bed side manner, I felt like a specimen on a dissecting tray) for a biopsy. The results came back showing intentional blunting and lower stomach inflammation. This was told to me by the secretary after my third phone call to check for results. She said the doctor said there was no evidence supporting a celiac diagnosis, he had no recommendations and didn’t need to see me for a follow up. What?!? I am so confused! Celiacs or not??

Ugh. I hate hearing stories like this. When I began showing signs of bladder cancer 8 years ago, I had surgery done to remove the polyp from my bladder. The doctor then proceeded to go on vacation without telling anyone the results. Last time I used that doctor. My point? Demand the test results from both your family doc and your gastro and then find another gastro to please give you an accurate diagnosis. You may indeed NOT have celiac, but you want to be absolutely sure.

Hi. I am 12 years old and have had celiac for about 3 years. I am doing a blogging project for school and was wondering if I could interview you over email. Thanks so much for blogging! It has really helped me and my family cope with this disease and keep a light, (mostly) positive attitude about it.

I absolutely love it. And yes, we had a nice email conversation back and forth and I helped her with her project.

Does the medication gluten assist really work? It claims to assist in the digestion of gluten and minimize symptoms.

I guess it really depends on what you mean by “does it work?” It’s just a digestive enzyme and I suppose they can assist in some ways. But products like these are certainly not a license to cheat on your diet and get lazy about cross-contamination, etc. And at least I’ll give the company credit, as they are very clear that “Gluten Assist Dietary Enzyme Supplement is not intended to treat or prevent celiac disease.”

Hey Dude. So I’ve been celiac for about 3 years now (blood test and endoscopic biopsies confirmed) and I guess I’m just wondering if you ever got retested or have heard of people I guess growing out of it. I’ve heard rumors it can happen so I’m just curious. I guess I still just have an ounce of denial left in me (even though since being GF ive never felt better). My parents don’t have it. My grandparents didn’t have it. All 4 of my siblings are beer drinking bread eaters.

Sorry to be the bearer of bad news, but no…you don’t grow out of celiac. Once a celiac…always a celiac. It’s your pal for life.

I’m 31 years old, and I have Celiac. I found out on the hard way too many times that the so-called “gluten-free” dishes I ate at restaurants weren’t actually gluten free, and restaurants which claimed to pay attention to cross-contamination are not always doing so… so eventually I gave up on eating out almost entirely, spending more and more time cooking at home. My husband encouraged me to stop whining and take action – and so I did. We developed an app that can perform as an actual gluten-free dishes collection from restaurants, where all the dishes are uploaded by us – people with celiac disease! Unfortunately, we don’t have the budget for advertising (since the app is 100% free, with no commercials or monetization mechanism – it was truly created to help us all) so it is hard to tell Celiacs all over the world about this solution (and actually encourage them to contribute). Due to your huge influence among the Celiac community, I hope to get your support and assistance. I would greatly appreciate if you could tell your readers about this app and encourage them to get aboard.

Sure thing. Folks, the app is called CeliHack. It’s available for both Apple and Android. I downloaded the app and it’s very well done. It just needs more people using it. So please consider giving it a go.

Hi Dude. Here in the UK we have the same problem as you have over there: Why is ‘gluten free’ stuff NOT ACTUALLY GLUTEN FREE?? I contacted Coeliac UK to ask this and got a fairly standard slightly blunt (they couldn’t care less) kind of reply; ‘it’s impossible to be totally GF & it’s tolerated by most people so you don’t have to eat it if you don’t want to’) I feel better than I did when eating gluten BUT keep getting ill again. 2 years since diagnosis I really just want to feel WELL! Any ideas please??????

It took me WAY TOO LONG after my diagnosis to begin to feel better. And it only happened after I made serious changes to my diet. Please read this post: Stop Eating Gluten-Free Foods.

Hope all is well. Just wanted to touch base and say thanks for this site. I am a father of a little girl (5) with Celiac 🙁 I’m tired and it’s a lot of work to make sure she thrives and is feeling loved and not an outcast in school cause she cannot have everything the other kids do… true story, when talking to her teacher, I explained the devastating consequences and long term effects of Gluten to my child… the teachers response when I asked about modifying the amount of food that travels in and out of the classroom for projects and celebrations… “It’s not fair to the other children”. We have a 504, but zero empathy!! SUCKS!! Anyway… I plan on beginning a website/blog for awareness from the perspective of a father and the sadness/effects it is having on my daughter. BUT also the choices we make and the life we live… it’s all good.

Not fair to the other kids?? Ugh…don’t get me started on attitudes like this. Just keep advocating for her. It seems to me she’s in good hands with you as her dad. And when you start your blog, send me the link. Would LOVE to read it.

Hey Dude! Looking for support. I’m feeling frustrated and defeated. Just came back from the doctor and I was told my ALP levels are very low and that “your digestive system isn’t working and I don’t know why, there’s nothing more I can do for you”. I’ve been gluten free for 4 years now, I’ve cut out dairy. My Stomach always feels crappy and I feel like celiac is defeating me. Now I have Hasimoto’s Thyroiditis too, another autoimmune disease. Not looking for pity just reaching out to the community to see if anyone else has been here and what they have done.

“Celiac is defeating me.” I think we’ve all been there. It is indeed a constant unwanted companion. All I can say is to keep searching for the answers. Go to a different doctor. Try the Whole30 or AIP. I know it’s maddening, but you gotta keep at it until you find something that works for YOU.

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12 thoughts on “Mailbag Time”

  1. Hashimoto’s can throw a wrench in things because it can lower stomach acid production and intestinal motility. So food just sits like a brick.

    I’ve found with Hashi’s that I have next to no tolerance for packaged foods or overeating. Also nothing spicy. Soups are good. Just plain vegetables and meat are good. Leafy greens are my friend.

    I know there are a lot of supplements out there aimed at stomach acid, but I know about the validity.

    1. I have used a naturopathic doctor in the past with success. They tend to look at the holistic view instead of just western medicine. I have three auto immune diseases including thyroid. I do alot of natural stuff such as acupuncture and massage to help!

  2. To the dad with the 5 year old with Celiac…I feel your pain! My now 9 almost 10 year old was diagnosed at 5. We were lucky in that he was diagnosed rather quickly without being constantly ill or in the hospital. And by rather quickly, I mean it only took a year after he started with pain in his stomach that had him dropping to his knees on the walk to school, which the doc wanted to blame on constipation.

    Anyway, he goes to a charter school and from the start there we lucked out with 2 teachers that fully understand if not Celiac, at least food allergies and how debilitating they can be. One teacher (who was his 1st & 2nd grade teacher) has a relative with Celiac. The other teacher, his current teacher, spent the first 2 years of college sick and thinking she was dying until she figured out her food allergies. They are beyond helpful and understanding. I kind of fear his next teacher though as I know nothing at all about him.

    We did pull him out for a short time this year and homeschooled him. His anxiety levels were through the roof and adding to his stomach issues. He’s been getting sick, last year he missed 45 days of school. Having the extra time out of school seems to have helped and I hope going forward that we nipped that in the bud.
    All that to say, you’re not alone…and definitely get a link to your blog here..it helps to read other’s experiences.

  3. Definitely get the Coeliac UK frustration!

    Basically, they permit anything under 20ppm to be listed, even if it has a gluten containing ingredient in the final product. My personal pet hate is barley malt extract which (a) makes me ill at low concentrations and (b) is in everything: breakfast cereal, concentrated stock, chocolate, vinegar… Others struggle with gluten free oats, or codex wheat starch. I’ve even seen normal wheat flour declared as an ingredient, but the quantity was apparently small enough that the end product was classed as gluten free!
    Thanks to the 20ppm rule, a gluten free label on the front doesn’t mean there is no necessity to read the ingredients.
    Now try explaining that one to someone who has kindly offered to cook for you, doesn’t have the disease themselves, and has headed to the shops to source suitable ingredients.

  4. Theresa Henriksen

    To the person whos doctor never called back. Go there get your biopsy results and find another gastroenterologist ! Hopefully someone who specializes in Celiac. Any doctor who can’t
    call or see you to explain your test results is irrresponsible. Please get another opinion

  5. To the last letter writer whose ALP is low and “digestive system is not working”:
    1 – If feasible – GET A NEW DOCTOR
    2 – Ask about prescription pancreatic enzymes (pancrelipase — brand names Creon and Zenpep). When I was first diagnosed my doc immediately prescribed Creon for 6 months. She said that when the small intestine is damaged, it doesn’t always communicate properly with the pancreas resulting in an insufficiency that makes it harder to digest protein, fat and carbs (basically everything). (Due to insurance considerations I had her change the prescription to Zenpep before I filled it – definitely check prices)
    3 – Consider asking for followup Celiac blood tests – with how long you have been gluten free the numbers should be normal or close to it. If they are elevated than you are probably getting significant cross contamination somewhere.
    4 – If you never had a repeat endoscopy, consider asking for one to evaluate how you are healing. My doc, a little old school wanted to do a repeat endoscopy at 6 – 12 months, but I put her off as my research shows that 2 – 3 years is now the recommended time frame. She says I keep her on her toes.
    5 – Finally, I agree with the Dude that you should try some form of a whole foods diet. Both Whole 30 and AIP are good options. But personally, I keep trying to work up the will power to do Dr. Fasano’s Gluten Contamination Elimination Diet. A few years ago Dr. Fasano did an admittedly small study of people who were not responding to a gluten free diet. He put them on a strictly whole foods diet with no grains except rice. The diet allows some foods that the above diets forbid, but it includes even single ingredient frozen fruits/veggies as processed. 82% of the people in the study that stuck with it for 4 – 6 months finally showed intestinal healing and were able to avoid the steroid treatments that are used with refractory celiac disease. Below is a link to the report. If you don’t want to read the whole thing, at least scroll down to Table-1 and the paragraph before it for a description of the diet so you can compare it to others.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/?report=classic

  6. Christine Walters

    My husband and two of my three children are endoscopy confirmed celiac. I have NCGS and our home is gf and we eat out rarely. My husband and I are grain free with the kids occasionally consuming rice in gf products or corn. Recently read Dr Peter Green’s book “Gluten Exposed”. I would not say I am a fan of the book, but one part of it really struck home. “Mercury is a naturally occurring heavy metal that appears to be increasing /accumulating in the food chain… Mercury can damage the nervous system, kidney, and lungs and remains in the body for a long time, where it affects inflammation and the immune system. A recent study showed a fourfold increase in mercury blood levels of celiac patients following a gluten-free diet… Another study found elevated blood levels of mercury, lead, and cadmium and urinary levels of tin and arsenic in people eating a gluten-free diet, some with and some without celiac disease…. Rice, a common substitute in a gluten-free diet, may contain high levels of arsenic as well as cadmium and mercury. Other heavy metals (e. g., tin, lead, and mercury) have also been found both in gluten-free food and fours and the people ingesting them… A greater number of patients with celiac disease develop neurological symptoms over the ensuing years after starting a gluten-free diet. While this has been attributed to the development of a new autoimmune disease, the recent concern about the occurrence of metals such as lead, mercury, and arsenic in people on a gluten-free diet may I fact be manifestation of heavy metal toxicity. ” Wait, it gets even better, let’s say you already avoid all rice, he mentions corn next. ” Corn Fungi… The other staple of a gluten-free diet is corn. A recent study comparing the gluten-free diet of people with celiac disease versus those on a regular diet found a mycotoxin (a chemical produced by fungi/mold that is harmful to humans and domestic animals) in a number of corn products. The levels of this particular mycotoxin – a fumonism associated with nervous-system and cancer-causing damage in animals – – where high, raising concern regarding the long-term safety of various corn-based products. ” This book is written by the director of the Celiac Disease Center at Columbia University and published May 2016. Our family feels best eating organic fruits and vegetables, grass fed meats, pasture raised eggs, and basically a whole 30 diet with red wine for the adults.

  7. Greetings from gluten freelandia,

    DX last summer and GF for almost 6 months now. I thought my father passed away from cancer of the esophagus that spread to his stomach and beyond. Found out 2 weeks ago he actually had a rare type of cancer of the small intestines that spread. My father had been struggling with stomach issues and been told to modify his diet different ways, but continued to get worse until the cancer DX. They removed lots of his insides and he died a few moths later. It seems obvious to me he had CD which led to the cancer and it helps me to understand why. Unfortunately I don’t think that’s good news for me. Does anyone know how cancer of the small intestine is DX? Are there blood tests for markers?

    I also, …shit, had another question and forgot it while I was typing. Argh! Oh yeah, I remember now. I used to have high cholesterol (around 250) a bad ratio and extremely high triglycerides (over 400). My last blood work shows my cholesterol and triglycerides are all in the normal range now, but my blood sugar levels are now pre-diabetic and they used to always be fine. Anybody else experience this after going GF?

    Frankly, CD has taken the joy out of eating and made it a big pain in the ass. Tried a new lower sugar yogurt (Dannon)-had gut pain, massive gas and diarrhea all day. Looks like some occult blood again too (is occult blood a typical symptom of CD?).

    Lastly, is there any short term treatment for the neurological symptoms (depression, anxiety)? Divorced last year after 31 years of marriage, I’m alone and although I have some nice friends I have nobody to turn to when struggling who really understands, so you here are my support group.

    1. Dear Cali Celiac,
      Sorry to hear about your dad. I don’t have answers to some of your important medical questions, but I want you to know you are not alone and I pray things get easier for you.
      When my husband and 2 of my 3 children were first diagnosed back in 2014, it was a sad, stressful, overwhelming time. Now, we are striving and loving life and for us it got a lot easier. When first diagnosed, I went out and bought GF everything–bread, doughnuts, sugar cones for ice cream. Spent tons of money on terrible tasting cookies, etc. I felt happy everytime I found a new, edible replacement product–basically, my kids won’t go without. Then I started reading–alot. My husband was undiagnosed for over 20 years. At time of diagnosis, he was obese, irritable, and very depressed (esp in winter), suffering from severe stomach pain and gi problems that would often prevent him from sleeping. His family members already had diabetes. With all that reading, I learned that many people following a typical GF diet after a year are at increased risk of metabolic syndrome (includes diabetes, high blood pressure, and obesity). Many GF replacement foods “contain excessive amounts of sugar, carbohydrates, sodium, and calories.” I decided to try a drastically different approach to eating GF using more of a whole food, grain free, lower carb, higher healthy fats from sources like avocados,and coconut oil. We use coconut flour on occasion with some nut flours sparingly. My husband lost over 70 lbs. His stomach problems are much less severe and rarely bother him. He is actually working out as I type this. He still has another 30 pounds to go, but we are both confident he will get there. He is a changed man. He has a new zest for life and energy. He has been promoted at work after years of being passed over.
      Our whole family recently watched “That Sugar Film” free on Amazon prime right now. We are all further improving our diets after watching the movie. My teen boys are actually drinking mostly water, or tea (unsweetened– hot or iced)–no juices or sweetened drinks . What is interesting is the movie has nothing to do with celiac and doesn’t mention gluten, but if you look at his recipes online they are GF, many grain free, just real healthy food without added refined sugar. We sometimes have awesome products grain free but made with tapioca starch (which will definitely spike blood sugar) but make delicious pao de queijo (Brazilian cheese bread) or yummy Against the Grain bagels. But we use these treats sparingly.
      As for the medical issues, especially with your family history, personally I believe in getting a second, even a third medical opinion, perhaps from a well regarded medical center, or better yet from one that specializes in celiac disease.

      1. C W from MI

        Thanks for the kind reply. It sounds like your family is coping well with CD and the lifestyle changes that come with it. I have done a lot of online research and continue to do so, enough to find a lot of conflicting information. I’ve only been GF for almost 6 months and realize my intestines haven’t had time to heal yet, but I’m concerned, but I’m concerned about the other issues. I’m 5’9″ and my weight has dropped from a normal range for me of 180-185 to 157 in the last year. Doesn’t make sense to me that I’d be losing weight while having a higher blood sugar level. The main GF replacement foods I eat are bread substitutes and the Udi’s bread is only 1 gram per slice and occasional pasta substitutes which are not too high in sugar either. I suppose the complex carbs in these items could produce higher sugar levels than the wheat based products, I’m not sure. I have never drank sugary drinks like soda or sweetened tea, only cream in my coffee and limit sweets to 2 cookies or 2 chocolates per day. I work 12 hour days and am having a hard time finding whole food meals that I can prepare and eat in a 30 minute meal break.

        Honestly, I’m concerned that I might be in early stages of small intestine cancer and fear it will be diagnosed too late like my father’s was. Unfortunately, I’m struggling with a lot of brain fog, depression and anxiety which makes me question my own reasoning.

        Interesting thing I noticed, just like you noticed the diet similarities, I’ve noticed that the symptoms of Myotonic Dystrophy, which runs in my father’s family (I’ve lost 2 uncles, an aunt and 2 cousins to the disease) symptoms match some of the symptoms for CD, like Ataxia, Peripheral Neuropathy and fatigue. Sorry for rambling on and thank you for the suggestions. Pao de queijo sounds yum.

        Cheers

        1. Blood sugar is affected by all carbohydrates, not just the grams of sugar on nutrition facts. Udis products are actually simple carbs, generally speaking, so is pasta. A typical slice of gf bread will probably be in the 15-18g range. Carbs in fruit, vegetables, etc, will also affect blood sugar.

          Prediabetes usually does well with limiting carbs to keep blood sugar from getting too high, so it doesn’t progress to diabetes. Ideally a doctor should help you with this, but it’s hard to get care for prediabetes, and most doctors are still pretty generous about carbs.

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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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