20 Emails in 4 Days: Part III

do i need to take celiac seriously

Dude note: Five emails per day for four days. Here’s part 3.

——-

Soooooooooooooooooooo, I was diagnosed with celiac in late October 2016. I spent the next 6 months receiving treatment from a naturopath. I went and had my colonoscopy/endoscopy and the internist didn’t think I had celiac. But I continued to do as I was instructed and did a complete cleanse then started adding foods to see what was causing the symptoms of a histamine disorder. Doing well. Then I check in with my GP and he tested me again to later tell me that I don’t have celiac and all my labs came back great! Wow, so happy to hear that! I was so exasperated in spending $$$$$ on supplements, spending hours in the grocery store reading every label, the Drs visits buying every book on celiac & autoimmune diseases that when the GP said I didn’t have celiac I went back to my old way of eating. Not as bad, but glutened. Now it’s been 10 months and I’m right back to where I was in October of 2016.

So I guess my question is HOW do I stress to my husband’s family to stop trying to feed us. It’s annoying to me when I repeat myself over & over to them please don’t include us in meals for awhile until we get this figured out. These people are obsessed with food. They have to eat 3 meals a day and snack throughout the day. They’re all over weight but seem to be concerned that because I can’t keep weight on I’m failing my husband because I’m not taking care of myself. Side note, we’re 60, he just had a heart attack. His lifestyle has to change as well. I thought (even though it’s awful to have a heart attack to get your head out of your ass) we could finally do this whole new lifestyle change together. Apparently not.

[Scratching my head trying to figure this one out. Have now drawn blood from my scalp so will stop scratching and start typing.]

If I am reading this correctly, you were diagnosed with celiac disease. And then went to a naturopath for treatment. Then got retested and was told you do not have celiac disease. So you started eating gluten again and now feel like doo doo. Now you’d like your husband’s family to stop feeding you. Did I get that right?

First…sorry about hour hubby. Hope he is on the mend. Second…once a celiac, always a celiac. You cannot get rid of the disease. Three…while I am all for natural treatment over medication when possible, the only treatment for celiac disease is a gluten-free diet, so I’m not sure what the naturopath was trying to offer/sell to you. Fourth…I won’t comment on the issue of your husband’s family feeding you. I will just assume there’s more to the story than I’m getting out of it. Can you not feed yourselves? I just don’t get it.

Have you seen the article on Celiac.com about “hyper vigilant” celiacs having a lower quality of life? Interested on your take on it. I find it rather annoying that they say we have a lower quality of life when being hyper vigilant when they don’t address the fact that without being hyper vigilant we would probably still be suffering symptoms. I would rather be hyper vigilant and symptom free than less vigilant and sick every day!

You mean the same celiac.com that pushes garbage products? The same celiac.com that defends Cheerios? The same celiac.com that says gluten-removed beer is ok? The same celiac.com that dishes on celebrities going gluten-free? That celiac.com? I did read the article (it was in other publications as well.) Here’s a link. It was a horseshit headline that was totally misleading. And the quality of my life is just fine, thank you.

I am a 75 year old M S lady GF 40 years, terrified about going into an institution in a state unable to control what is on my plate or in my food. Please address the need to connect us elderly GF’ers on line and create a protocol to alert nursing homes, hospitals, retirement homes that our lives are in danger from their kitchen practices. (I studied to become a dietitian too) YOU TOO WILL SOMEDAY BE FORCED TO RELY ON OTHERS TO FEED YOU SAFELY. We all need to start working on it now or we all are in mortal danger in our age. Thanks for reading. A loyal follower with MS. Please include us.

This is something that TOTALLY needs attention and I’ll see what I can do. If anybody else out there could take on this cause, it’s desperately needed.

Is it normal to get really sick if I am accidentally glutened even though I never ever used to get sick prior to knowing I had celiac? I had “silent celiac” so it was really hard to go gluten free because eating gluten never bothered me. But I did what I had to do and gave up gluten. Now, even the smallest amount of gluten bothers me. HOW COULD THAT BE? If giving up gluten heals you inside, why would accidental exposure bother me so much? Do doctors really know what they are doing? How can doing the right thing bother me when doing the wrong thing never did?

I’m not doctor (nor have I played one on TV) and I steer clear of medical advice. That being said, I believe what you are experiencing is quite common as I have heard it from many others. My take? Your intestines, though you didn’t have symptoms, were pretty effed up. Once you went gluten-free, they eventually healed. Now when the foreign body enters your system, it’s like “What the heck is this? Uh-uh…ain’t gonna happen.”

I just re-read the above paragraph and it looks like I have no idea what I’m talking about. I know what I want to say, but not quite sure how to verbalize it. I’m using my lifeline. Anybody??

Hey! Read your book first, over all of the others available. I like your cut the shit style by getting straight to the point. Refreshing. Sorry you have this disease, but selfishly glad you are in our corner.

So, my 10 year old daughter was diagnosed with celiac disease a week ago. Yes, I am in the “clear everything out and heal her gut and educate myself, so I can educate her” stage. It’s either controlled chaos or like herding cats, not sure which.

First, a disclaimer. This is not a husband bashing email, more one coming out of frustration. My husband likes scientific data, studies, experts. His last statement to me about celiac is he didn’t believe exposure to gluten was binary. He believes there is a threshold. And there very well may be, I think in Esposito’s book she said an 1/8 tsp could trigger a response. He took issue with the 20 ppm FDA labeling. (It’s not like the man walks around with a damned digital scale or a triple beam balance to check what amount is safe.) And those amounts are minuscule. I keep trying the microbiology cross contamination or the it only takes 3 E. coli of a certain strain to cause illness examples. Nada.

I handed him your book. He said he wanted to read scientific studies. Insert your expletive of choice. I did. Several.

What I need advice on or direction to, is data. He just needs to read and read what will educate him in a way he feels confident in. Are you aware of any studies or med professionals you trust that you can recommend for him? Things like how are these thresholds calculated? What is optimal functioning capacity for the small intestine? Like I said, data.

You know, at the heart of it, I think he is scared for his little girl. Scared for what this diagnosis means for her. I mentioned cancer and infertility and I could tell he wasn’t ready for that. So, arming himself with data and studies is what he needs.

Ok…let me get the niceties out of the way. So glad the book helped and happy to be in your corner.

Now…for some tough love. Sorry, but I call BS on your husband. Celiac is not some new disease that needs to be scientifically validated still. All of the data is out there. He’s just gotta look for it (if he wants to…perhaps he’s in denial a bit.) If he takes issue with the data that is out there, that’s on him to find data that disputes it. I wish you luck.

(Phew…one more day!)

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25 thoughts on “20 Emails in 4 Days: Part III”

  1. No 1: agree with Mr Dude, once a coeliac, always a coeliac. But if you are eating gluten free, the tests come back negative (you are well because you are doing it right).
    No 2: in early middle age I am already starting to worry about this. I was in hospital about a year ago (UK NHS hospital – they are very good, whatever you hear your side of the pond. Just bear in mind that “hospital treats patients correctly” is not an exciting headline) and was issued a special red wristband and had a sticker on the board above my bed, and was fed gluten free food for the 8 days I was there.
    No 3: I’ve heard the same, so it’s probably a thing.
    No 4: 20ppm is (literally) a drop in a bucket. I’m an accountant, so my maths is good enough to work that one out. If your body can detect it, it will react. Has your husband ever caught a cold? Has he ever questioned how many flu virus cells he needs to have before he feels ill? Or does he just accept that however little it is, it makes him poorly?

  2. I know what it’s like to have relatives who want to have you over for meals all the time. We went through it with my son and still go through it to a certain extent, so I get where the original poster is coming from. My in-laws have since stopped asking us to go out to eat, they’ve stopped having us over for pizza, and whenever they are providing a meal, it’s always approved by me first. They’ve seen firsthand what happens to my son when he gets glutened (headaches, vomiting) so I feel like they now know how careful they have to be. Before that though, I was the weird mother who restricted my child’s diet for no good reason. Do they understand everything about the disease? No. They still think he’s going to grow out of it. But they’re trying and the only thing I would suggest is to be firm and don’t let them get to you. They’re not going to change their ways. Instead of stressing over mealtimes, if the family is getting together, just tell them you’ll be over to visit after the meal. If that’s not okay with your husband, then drive separately or just don’t go with him.

  3. To the person who can’t get the family to stop feeding them: If it makes you feel Ill, refuse to eat it!

    I’m not trying to be harsh and it is no dig at you or your family, but sometimes the only way to get it through other people’s heads is to continually refuse what is offered and respond “____ makes me sick”. Be consistent and hopefully it will stick in their minds that you won’t eat specific things.

    Do you really need a diagnosis to convince family that you don’t want to eat something regardless of the reason? If they get offended, let them get offended. That’s their issue and should not effect your choices. It is your body, it is your husband’s body.

    Do you need a diagnosis to know you feel better GF? Make your own decisions to be or not be GF based on your own experience and commit to it. If others can’t respect your needs and choices, do it anyway.

    Please don’t rely on a diagnosis to change your eating habits and improve your health.

  4. Go to TheDr.com – plenty of articles, studies & straight-forward facts from Tom O’Bryan MD. Also pubmed.com as mentioned above.

  5. Q1. Families like to be “helpful” even when they are not. If their life is centered around food, they want to be inclusive with everyone, and disregard what is safe and best for you. Let them be offended if that is what happens when you decline food at their house or going out to eat. Be firm, but polite. And maybe your diagnosis was or was not celiac (not sure what the diagnosis was based on), maybe you are gluten intolerant, which can also be very severe. Celiac can have an official diagnosis with proper testing…

    Q2. The “hyper vigilant” term was meant to get a reaction… Look… we all need to be hyper vigilant… we all need to be careful for us and/or our loved ones… but one of GD’s main points is to NEVER LET CELIAC DISEASE STOP YOU FROM LIVING! Yes, be careful. Yes, be vigilant when you go out to eat or at a friends house. Yes, Yes, Yes. But don’t be living in constant fear or declining social situations because you can’t trust the food. Go out. Drink Responsibly. Hang out with Friends. Ask to go to establishments that you trust. And find supportive friends and significant others.

    Q3. The nursing home and hospital industry is HUGE… and especially the nursing home industry. Big Big Bucks. And they take their dining options seriously, hiring good nutritionists and dietitians. I will say that this is a big focus coming out of the dietetics and nutrition college classes, so good news for us in the future. But for you now… you need to stay vocal when in the hospital. Make complaints when necessary. And definitely do your research when choosing retirement and assisted living options.

    Q4. Yes… this is very common. While having gluten constantly causing an attack on your body (whether you knew it or not – being a silent celiac), now that it has been cleared from your system, your body is capable of going into “full on battle” when it sees gluten. It can be seen almost as severe food poisoning – and it can be quick and violent. My daughter when from being bloated and constipated, moody as a toddler, to now violently throwing up for about 4 hours, every 15 minutes, to the point where she passes out from pure exhaustion from the dry-heaving.

    Q5. Your husband is just trying to wrap his head around this to protect himself from his real emotions about his child. Normal reaction. You do what you do best as a momma. You got this. There is plenty of scientific data, but no one is out there calculating and measuring every meal. Even Nima Sensors (if you buy into that idea) have their limitations. But really… does it matter if she is getting exposed to 1 crumb, 20 ppm, 10 ppm, 1/8 tsp? Those are for the most part arbitrary. The 20ppm standard was from original data that they have shown to be the limit of ingestion without causing damage to the intestine villi. That does NOT mean that less than 20ppm will not cause a reaction. Many celiacs will state that they get sick by products that claim to meet those standards. Further research is needed, but the scientists/MDs/PhDs had to come up with a standard in which the FDA could act and enforce (try to enforce), and this is currently the standard. We all wish it was better.

  6. I am another 75 year old. I live in a retirement home, when I came here they had a “gluten Friendly” option which they have now eliminated. Even then I had to be always aware. There was at least something once a week or more that was gluten . I ask a lot of questions,, watch what I eat out of the given choices and 2 or 3 time a week eat in my room cause nothing on the menu is possible. The other advantages outweigh the hassles. When I need it in WA state assisted living or nursing homes are required to offer special menus for diagnosed people. We’ll see how real that is. Its a real problem for many or us.

    1. I absolutely despise going to the hospital, either as a patient or as a guest of one! For a medical facility to be totally oblivious scares the bejeezus out of me!

  7. Gluten Dude,

    The way you write makes me crack up sometimes. I’ve had such a shitty week and I literally did “laugh out loud” a couple times while reading this post.

    And also…

    One of my fears with this autoimmune disease is when someone else becomes responsible for my meals. Whether it’s a nursing home, assisted living, whatever. (I’m not losing sleep over this currently, this thought has just crossed my mind more than once.) Or if I was to have dementia or become diagnosed with Alzheimer’s. Could you imagine? Finding my way to a grocery store and buying whatever? I’m one of those crazy vigilant peeps. Zero gluten in my home. Totally hoping I somehow steer clear of dementia. But I can’t remember what the heck I had for breakfast for cryin’ out loud. Obviously that’s a little bit of an exaggeration, but you get my drift. Sigh.

    Thanks again for making me laugh. And also thanks for all you do for our celiac community. Love your site.

    1. I am hyper vigilant and still sick most of the time anyway, my quality of life is pretty challenging 98% of the time. I am not liking the idea of going into a care faculty of any kind either. Please, someone just kill me if I am that sick. Life is hard enough.

  8. When I was first diagnosed (I am a silent Celiac), even though I have a fairly good grip on anatomy and physiology, I was in major denial. I can understand the “husband” wanting scientific information, because that’s how I was. I had to see how the mechanics of the whole disease worked. Unfortunately all of the GF fads, stories and extraneous websites it’s hard to weed out the reality. I gleaned most of my information through http://www.cureceliacdisease.org – The University of Chicago Medicine, Celiac Disease Center.

    I don’t know who decided that a GF item had to contain less than 20ppm to be considered gluten free. One thing about it, I believe 20ppm is per serving, SO if you eat a whole box of crackers, or whatever, you need to think that you have just multiplied that 20ppm by how many servings are in that container – upping your actual intake of gluten.

    Eh, it takes awhile to get over mourning what you can’t have and time to stop substituting for something you’ll never eat again.

    1. In Australia it has to be less than 3ppm to be classed as GF, as that is lowest amount that can currently be detected. Food that contains oats can’t be classified as GF either, hate finding so called gf recipes on US websites only to find that many contain oats.

    2. I’ve noticed a lot of the emails in this series are for those with “silent celiac”. I was a so-called silent celiac until I was diagnosed in my early 40s with iron-deficient anemia, osteoporosis, B-12 deficiency, and a host of other problems. (The anemia was the first one found and the one that triggered my celiac testing and diagnosis since that’s pretty unusual in a middle-aged male.) An absence of major GI symptoms does not mean the autoimmune disease is not doing major systemic damage.

      Celiac disease will *kill* you if you do not take it seriously. It kills you slowly and often painfully over a long period of time, but it is an absolutely deadly autoimmune disease. Fortunately, we know exactly what triggers the autoimmune response and how to control it without side effects. My wife has lupus. I know people with type 1 diabetes and rheumatoid arthritis. If I had to have any autoimmune disease, I’m glad it was celiac disease, something I have the ability to mostly keep fully in remission. Yes, it’s hard. Yes, it’s often a royal pain. Yes, it’s next to impossible to avoid the occasional exposure, but great care can definitely keep incidents few and far between. I have a disease over which I have a lot of control and I appreciate that fact tremendously.

      I was diagnosed in 2009. As I did research and discovered the genetic basis for celiac disease, I let family members know and we had our two younger children (still both at home at the time) tested. They both tested positive and biopsies confirmed inflammation and some damage to the villi. (Note that the biopsies can only be performed at the very beginning of the small intestine. The blood tests developed in the early to mid 2000s are both sensitive and specific, but not infallible. Neither test is actually 100%, but if *either* returns positive results, celiac disease should be presumed. I believe that’s the current standard of care last time I checked, though doctors frequently use older standards. It takes time for professional awareness to grow.)

      They understand from how severely it impacted me just how serious the disease is and work hard to manage it. It’s a struggle, but not one they take lightly. They mostly follow my number one rule. When in doubt, don’t eat it. (They are both in their 20s now.) My son’s fiance was just diagnosed with celiac disease after years of misdiagnoses. Her celiac is most definitely *not* the silent sort, but it still took forever to diagnose. That’s frankly inexcusable. We should be screening for celiac disease the same way we screen for diabetes and cholesterol. At roughly a 1% prevalence, most of whom every single study finds are undiagnosed, and with a highly sensitive and specific blood test available, it’s crazy that we don’t screen for it.

      There’s a ton of research out there and scientific conferences focusing on celiac around the world. If someone wants the actual research itself, a lot of that is only available through paid journals, though.

      I will add that after almost a decade gluten free, I’m mostly healed. (My villi recovered within 3 years, but you don’t rebuild bone density quickly.) And I do now recognize effects when there’s an autoimmune response. My biggest one are systemic flu-like body aches and even chills, but no fever. I also have peripheral neuropathy (and brain fog, though I forget the medical term). And if the exposure is severe enough, I can now have major GI issues. My healed intestines will rebel. In reality, I had some of the issues from systemic inflammation (common with autoimmune diseases) before I was diagnosed. Because they built slowly over time, though, I just assumed that’s what people meant when they said growing older was painful and your body tended to feel worse. So I just pushed through it for years.

      And yes, hospitals can be lousy at providing a safe medical diet. It doesn’t surprise me nursing homes and other care facilities are too.

      The specific threshold to trigger an autoimmune response is individual, but it’s very, very small for all of us. Even 20ppm (cumulative in the different things you eat in a day) can be iffy. For most of us it falls below the threshold. If anyone feels like they detect any signs of a response from a given product, though, my advice would be to avoid it. Better safe than sorry. There are also practical limits in what we can detect currently. That threshold is the lowest reliable level for many tests today. The more food made from fresh fruits, vegetables, and meat that you or a family member prepares themselves you can eat, the safer you’ll be. Cross-contamination is a universal concern for every person with celiac disease. It’s the autoimmune response that is killing you, whether or not you notice any acute physical reaction. You have to keep the autoantibodies in abeyance.

      This review article from 2011 not only gives a lot of detail into the autoantibodies effect on the villi, but also some of the extraintestinal manifestations of the disease.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4003135/

      I appreciate GD trying to hammer home over and over just how serious celiac disease is. It’s a deadly autoimmune disease and if ignored and allowed to run its course over time, trust me you will not enjoy the results.

  9. Re #3, the nursing home: OMG. This is my greatest fear. I’m only 44, but I’ve been in enough hospitals to know they cannot and will not feed me properly. Yeah, like the person above, I got a special bracelet. And then I got glutened. After abdominal surgery. Guess how much fun that was! Oh, and would they believe that the problem was their food? Nope. Never mind that I had every single symptom I always get when glutened. Never mind that I’ve been gluten free for 19 years now and rather know how it feels. Nope, their food was gluten-free, and my symptoms were a side-effect of the meds. Bull. Shit. So I got my husband to bring in all my food every subsequent time, got labeled as a pain in the ass, but didn’t get glutened.

  10. I am a nurse in the home setting and frequently visit the elderly in assisted livings; I’ve been told by more than one if someone needs a gluten free diet they have to move to a nursing home. One of our social workers worked at one of the nursing homes in town which operates 3 facilities in our (small) city (out of 4) and they cannot accommodate a gluten free diet. I am petrified to grow old, especially if my husband or daughter aren’t around.

  11. I wonder if that last husband is demanding “data” because he’s in denial that it would be in his child’s best interest to have a gf house? Maybe he’s bargaining that small amounts won’t hurt her, so he doesn’t have to change as much? Why is he demanding studies, demanding that his mind be changed, instead of doing his own research?

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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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