Dear Gluten Dude: My Family Members Call Celiac a Fad Disease. Oh…and They're Doctors.

celiac disease is a fad

Did you know that today is Celiac Awareness Day?

That’s right…our disease is so big that we get our own special day to try to spread awareness. Heck, we even get our own month, which happens to be the month of May. (And yes…there is a reason why our DAY is not in our MONTH, but I totally forget what it is.)

And yet we still need to shout to the heavens at times to be taken seriously.

So…in response to this paradox, the question becomes “how should I spread awareness?”

Do a giveaway?

Share my favorite recipe?

Wear green??

Nah…I should stick to what I do best; calling out people who don’t give celiac disease any credibility whatsoever. It’s a tough job, but someone’s gotta do it.

This story is something special folks.

We’ve all read the stories of family members who make a celiac’s life a living hell. We’ve all read the doctor horror stories from those whose doctors refuse to acknowledge celiac as a real disease.

But what if the person was both a family member AND an MD? Well, then you’ve got the latest Dear Gluten Dude.

Yay Celiac Awareness.

—————————————————————————————

Dear Gluten Dude,

If you decide to “publish” my letter, please don’t include my name as I have enough family drama to deal with as it is.

I wanted to thank you for sharing letters of Celiacs who contend with troubling family issues surrounding their diagnoses and dietary needs. I am among the ranks of those who live with Celiac, and who hail from generally unsupportive – alas, often downright cruel – families. I dread family get-togethers and holidays because “my diet” generally manages to become a focal point of verbal abuse – despite my pleas for people to just cook and eat whatever they damn well please. I never expect anyone to accommodate me.

With Thanksgiving and Christmas on the horizon, I am already bracing for this year’s barrage of attacks and guilt trips.

Did I mention that two members of my immediate family are MDs? You read that right. One of those MDs is especially caustic with her “anti-Celiac” comments. Her choice to be downright ignorant and insulting in the context of my diagnosed medical condition is beyond hurtful.

They both have used terms such as “paranoid,” “OCD,” “unnecessary,” and “misguided” in reference to my efforts to avoid gluten. One of them cited some opinion piece in the NY Times (um, that’s not peer-reviewed professional literature) about gluten intolerance and Celiac disease being “fad diagnoses” – implying, of course, that I jumped on the GF bandwagon without a legitimate medical reason to do so.

One of them literally rolls her eyes and sighs almost every time I decline to eat something, or suggest that we could modify a recipe (or that I could make a GF version to bring to the event). The eye-rolling gets especially pronounced when I express concerns about really obvious cross-contamination hazards.

The spouse of one of these MDs recently referred to Celiac as “a convenient excuse” to not participate in family events. That wasn’t a ridiculously hurtful/insulting or anything.

At any rate, I am fortunate to have found a handful of good doctors who take my diagnosis seriously, who respect my need to stay strictly GF, and who fight my insurance company to pay for brand-name meds when the generic forms have gluten in them. I only wish the doctors in my own family were so reasonably well-educated on the topic, and espoused such a humane “bedside manner” with their own kin.

I thank you for supporting those of us who are dealing with downright hostile families. This condition is difficult enough to live with as it is. Thank God my in-laws are actually quite kind, and even accommodate my diet with gluten-free offerings at family events. I keep praying my own family will catch on. Perhaps they will read some of the peer-reviewed literature in their medical journals, and realize I am indeed adhering to the only treatment option I have.

God bless you and your readers, Gluten Dude. You make my struggle a little brighter.

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44 thoughts on “Dear Gluten Dude: My Family Members Call Celiac a Fad Disease. Oh…and They're Doctors.”

  1. So sorry you have to deal with these idiots.

    Part of me wants to suggest that you get them a nice set of peer reviewed medical articles so you could have an informed debate. But the major part of me wants to say stuff them, there is no reason for you to put up with being treated like that.

    It does rather sound as if if it wasn’t celiac disease they were having a go about it would be something else.

    You sound as if you are keeping a level head, and are able to articulate clearly. Perhaps you could approach whoever is the person in your family with influence and camly explain that sadly your condition is not recognized by all doctors, which is odd as insurance companies do and you have read lots about it. You could explain that you are happy to join in and can bring your own food, but that you would like to have an event where your food is not the focus.

    Whatever happens, know that we hear you and we get it

    Mw

    1. Print copies of this and pass it around the dinner table. It should make for good conversation. And if they are so ignorant they do not know how to code for a disease, I would not take my cat to them. Oh and ICD stands for INTERNATIONAL classification of diseases. Then salute them with an ice cold gluten free beer.

      2013 ICD-9-CM Diagnosis Code 579.0

      Celiac disease

      •disease occurring in children and adults characterized by sensitivity to gluten, with chronic inflammation and atrophy of the mucosa of the upper small intestine; manifestations include diarrhea, malabsorption, steatorrhea, and nutritional and vitamin deficiencies.
      •ICD-9-CM 579.0 is a billable medical code that can be used to specify a diagnosis on a reimbursement claim.

    2. Im so sorry you are not getting support from your family. I know it can be exhausting and frustrating defending and explaining the gluten beast to those that are lucky enough to not understand. The hell with them, you cant chose your family, but you can choose who you surround yourself with. Also, The next time you are glutened, invite them all over, so they can watch as you are forced to make the unenviable decision of which major body orifice to face into the toilet. Make sure you invite them to spend the night, lest they Miss out on watching you wake up (assuming, if course, you manage to get comfortable enough to sleep), shaking and drenched with sweat. Encourage them to ask you simple questions, such as “what is your name?”, so they can witness your mind as it turns into mush. Hopefully, at that point, one if them will have the decency to run down to the kitchen and grab you
      some water, because by then your joints will be
      aching so badly, you will be wishing you felt half as good as your 100 year old grandfather. Then let them look you square in the face, and tell you you are making it all up.

      some water, because lord knows

  2. I’m so sorry. My disabled child and I both have celiac. I need desserts and things my DD child can eat. My family doesn’t care. I’ve decided not to go to these events. If you have such little respect for me and my child, that you belittle me, why would I want to come? So I quit. If they cared they wouldn’t do it. Why do I want to spend a holiday with people who don’t have any respect for me?

    You are super lucky to have supportive in-laws. They love you!

  3. Are you their patient? They don’t have a right to offer medical opinions about you if you’re not.

    The other alternative is to actually do something like fax them your medical records. If they’re going to be that offensive, you can be offensive right back.

    Biopsy pictures being passed out around the Thanksgiving table are the way to go!

    1. I love that idea. If they are going to be tacky enough to roll their eyes, whip our your biopsy photos, lab results, and doctor’s conclusion of celiac disease. Maybe a stack of medical articles too. Tell them until they look through that, you don’t want them to discuss this issue with you ever again. I just can’t imagine this kind of antagonism. I wouldn’t tolerate it!

  4. I have been in the exact same situation – two of my immediate family members are MDs and protested for years – and a third (my Mon) is a Physio and basically believed what they told her. It was hard, really hard, but in the end they realised I was serious about it and they NOTICED the health changes in me.

    Stick to your guns. The only person you are accountable to is yourself – I promise, at some point, a little niggling of doubt will slip into them when they see how much healthier an happier you are!

    The only thing I have to deal with now is then telling me how to deal with being gluten free an dairy free – as if I am not the one living it!!!! Oh and one is now specialising in immunology – and telling me all types of book crap re:allergies and food allergies.

    It never ends in that way I think – they are trained and conditioned to believe the written word. I can’t wait for the day when they realise that medical people make mistakes and publish them too.

  5. I’m truly sorry that your family is behaving this way. I’m mean… and I would drop my biopsy results along with a stack of peer reviewed literature on their plates at the next gathering.

    But then, I did say I’m mean.

    That being said, I no longer attend events where I am going to be uncomfortable. My family is great about not minding that I bring my own food, but I still avoid the big groups of strangers that attend some of their parties. Just not worth it to me.

    Perhaps you could go to the gatherings either before or after dinner, with the excuse that you need to see your in-laws?

  6. Adrianne Gentleman

    Isn’t is strange how we persevere with family, even when they are cruel and nasty to us. If it was someone who wasn’t related, we would remove them from our lives, Ignore them, tell them where to go, and forget about them. But with family we put up with Stick with your inlaws, don’t even bother to attend family gatherings. My husband and I moved away from his family, we still have contact, but not every day, and never on holidays, life is so much happier for all of us. Family is more about love, and less about blood, stick with the people who love you.

  7. The real problem here is that the relatives are jerks, and since the type of physicians they are isn’t mentioned I can only assume they don’t practice in fields related to gastroenterology. Furthermore, they are using their medical “expertise” to justify their jerkiness. Their mentality is the same as doctors who hand out out antibiotic prescriptions for colds — they can’t be bothered.

    I do think that doctors who don’t know the most up-to-date information about a medical condition — any condition, not just celiac disease and related conditions — are unfairly criticized for that lack of knowledge. Medical specialities are very specific in their training, and there is so much that goes into specializing that other areas of practice are put aside. I would expect a pediatrician, an internal medicine physician, a family practitioner, and a gastroenterologist to be up to date on this particular condition, but I wouldn’t expect them to know about the latest information on gyn-oncology, for example, and a good doctor will acknowledge those deficiencies. My husband is a physician, and was very skeptical for a long time about my need to stop eating gluten. Because his specialty is far removed from my medical condition, he had to take the time to research it in order to come around, but he is on board with it now and is always very vocal when we go out to dinner about how food is prepared — frequently more than I am.

    1. Just an FYI my GYN was the one that diagnosed me! Granted her specialty is fertility (so its on her radar) but learning about things that can impact patients is part of remaining relevant. Being aware makes one a better doctor, research makes a better doctor. Sticking ones head in the sand & showing everyone what an asshole they can be…is what’s wrong with the health care system in general.

      1. It was my rheumatologist who dx’ed me! Also a somewhat removed field, but I agree that keeping up with new information is critical. Sometimes people expect an MD to have all the answers, though, with no real thought about whom they are asking. For example, my husband is a pediatric cardiac anesthesiologist, so his focus is on the best ways to keep those critically sick kids alive, not what the best medications are for his 75yo stepfather’s obesity-induced type 2 diabetes. “But you’re a doctor!” Yeah, but come on, ask the doctor prescribing it, not your son who lives 3000 miles away and who takes care of babies.

  8. I guess I’m just a little evil & can’t ever remember a happy family holiday. I suggest having loving doc fax a letter to the offices of these relatives reminding them not only of patient confidentiality, but that if they honestly believe “its a mental disorder” they are actually violating their hipocratic oath by tormenting you.
    Then take in your bag peer review articles with a prescription from your doc for an XL bottle of shutthehellup they can fill for themselves 🙂

    If these people can’t manage to be civil…LEAVE!! Family is supposed to be loving, nurturing & supportive. Sometimes the people that actually do that aren’t blood. Spend holidays where you are loved, supported & nurtured…even if its at home with some red box & the cat.

    1. I totally agree with this recommendation. Why spend time with these people? If there are a few family members who support you whom you wish to stay in contact with, make arrangements to see them separately some other time. Or host your own gathering at a different holiday with only those you wish to see. Family isn’t always blood, as you’ve seen by your in-laws’ support and caring.

  9. GD-

    Another great post. My take on it is this. You can’t change the people around you but you can change the way you react to them. You have a choice-either put up with their condescending outrageous behavior or spend your holidays elsewhere. I would choose the latter, you should be happy during the holidays.

    Cheers-
    Jersey Girl

    1. Yeah, I agree with you Jersey Girl. My thoughts exactly. It’s better to spend the holidays elsewhere, because it’s not worth the hassle to deal with family who are constant assholes. Even if you gave them a peer-reviewed stack of articles, with a signed report with your medical diagnosis from a physician, it probably wouldn’t change their behavior, because they’d find something else to deride you about. It’s definitely not you; it’s them.

      I’ve already experienced this first-hand with my own family, who claimed I was a hypochondriac who was exaggerating about my symptoms, because I wanted attention from them.

      Even when I had a medical diagnosis, they’d belittle it, and ask me if the doctors knew what they was talking about. If I listened to them, I wouldn’t have had the surgery I needed to reattach my lacrimal gland that popped out of my socket a few years back, and I’d still be suffering from intense migraines to this day.

      I also would be suffering from intense diarrhea, gas, eczema, ataxia and panic attacks because I’d still be eating wheat (Although I have NCGI, not celiac disease).

      My family constantly told me that I was crazy and needed psychological help. I actually sought it, only to find out from my own therapist that I wasn’t the one who was crazy, it was my family.

      My advice to the letter writer: stop spending the holidays with your family and celebrate the holidays with friends, and gluten free.

  10. Gosh, this is so unbelievable. It’s unconscionable to me that some of these people are trained MDs, but then again, beliefs get in the way of scientific facts at times, don’t they?

    I am very lucky to be living the flip side of the equation, as my spouse is a medical specialist, who has embraced the gluten-free lifestyle, cooks gluten-free, and gets as informed as me, if not more, attending medical conferences on the subject even though it is not her field of specialty.

    So hang in there, not all MDs are misguided. DO make other plans for the holidays, however, as your happiness and health are more important than their opinions.

  11. Sometimes I find being celiac really depressing. If we only had to manage the diet it wouldn’t be so bad, but having to deal with other people and their opinions can be so frustrating and demoralizing. No one should have to fight for their right to safe food. Hang in there!

  12. Lovely family! And I can relate much!!! Realize that not all doctors are created equally, not all went into the profession because of the need to be caring and compassionate. The fact of the matter is, even gastroenterologist only “sort of” understand celiac disease. My latest GI even tells Celiac patients its okay to sneak a piece of pizza once in a while, grrrrrr. From above posts, I agree that it sounds like you are the family “whipping post” and if it weren’t for CD it would be something else. Most importantly realize that someone being an MD does not make them omnipotent, and obviously doesn’t preclude them being gigantic assholes!

  13. I thought it was interesting that your relative quoted a newspaper article to you. I’ll bet they read one of the many articles where our celiac experts have indicated that the gf diet is a fad that is bad for you, such as these quotes:

    “It is not a healthier diet for those who don’t need it,” Dr. Guandalini said. These people “are following a fad, essentially.” He added, “And that’s my biased opinion.”

    Athletes, in particular, have taken to the diet. Some claim to have more energy when they cut out gluten, a belief that intrigues some experts and riles others. Guandalini dismisses the idea as “totally bogus.”

    Personally, I’m willing to let people decide for themselves whether they feel better on a gluten-free diet.

  14. I just want to give her a big hug and kick some ignorant asses. I don’t expect doctors to be very human or kind. I am so angry right now that its hard to comment. But the upshot is I hope this lady continues her fight to keep eating right. I am sending good vibes as well as some nurturing mother earth spirit her way. Gluten Dude please tell her that WE care.

  15. I might make the comment about not being a good physician if celiac is not on the radar given that they likely have at least some with celiac. I would then give a list of issues related to celiac and a copy of Scientific American’s article by Alex Fasano on the subject. And finally, I would challenge them to get tested and/or do a gluten challenge on themselves. My husband thought I was nuts when I suggested he go GF and I had to challenge him./ When my daughter had issues, he insisted I try a GF diet less than a year later although I did not have typical celiac symptoms. Turns out I’m the one with a family history of celiac disease (aunt got diagnosed a couple of years later) and I am extremely sensitive to it. So many issues cleared up for me, I have verry little desire to ever try gluten again.

  16. Wow. Even veterinarians are pretty much on board with celiac sprue. But then again… veterinarians rule in my book. One person who is able to practise multiple specialties across several very different species is beyond amazing.

    Maybe you should suggest to your relatives that they visit their vet for some information and education?

    1. I’ve found overall that vets are far quicker to arrive at a correct diagnosis than MD’s even when the diseases have the same symptoms. I’ve had a dog with Addison’s Disease and a horse with Cushings Disease that were diagnosed quickly according to symptoms and then confirmed with laboratory tests. The only reason my Yorkie lived was because the vet began treating him for Addison’s before the actual confirmation arrived. How many humans suffer years before finding these things out?

      Last summer the spouse and I adopted a 7-year-old dog. We had already decided on him when the agency representative sheepishly informed us that their vet recommended that he stay on a gluten-free diet due to digestion issues including bloody diarrhea and vomiting. How many MD’s ever recommend that to their patients? That sealed the deal for us! We knew that little gluten-free guy was meant for us.

  17. Just because someone graduated from medical school does not make them an expert on the human body! I am so weary of going to new doctors due to so many bad experiences with them not believing gluten and other foods can actually be the cause of so many awful symptoms.

    Not sure if I can post this one here but has anyone seen this highly offensive video titled “Are you really allergic to gluten”? It basically feeds into the fact that some Celiacs and those with gluten intolerance might just be “being dramatic” or choosing to be gluten free because its a “trend”. Oh and that all of us suffer from the big D…

    http://www.youtube.com/watch?v=iHZWBrPMKXo

  18. I think it is horrible that the people we should be able to rely on most are sometimes the most hurtful. I can only assume that your family consists of more than just these two individuals so I would never advise you to avoid family functions as many seem to do. Family is so important in life and yes sometimes the most hurtful. Maybe you could try a more direct approach and talk to them about the specifics and details of your diagnosis and the side effects, ask them what they would diagnose you with based on your labs and offer them the appropriate literatur, and then yes possibly, politely, question their profesional competency (not that I know of a polite way to do this). I am starting to accept that these people will always be out there, but I know what is best for my health and I can not change everyones mind anymore than I can bring peace to Syria. A divided family hurts more people than the people with the diffrences. FInd comfort in the large online community of support and hopefully you have found a local network of supporters as well (such as your inlaws). So stay strong, vent to your spouse on the car ride home or host the holidays at your house, and dont let these people get to you. Easier said than done, hang in there. Damn the holidays they used to be so much fun mixed in with all the stree and then celiac disease manages to take away more of the fun and add to the stress, fast forward to Feb. please.

  19. Join the ever increasing club. I so don’t understand why some families embrace the one diagnosed and do everything they can to help…and then there are families like yours and mine who even sometimes deliberately poison you just to see if you exhibit a reaction. A lot of us take a day or two before we’re sick as dogs and rolling from the pain. By that time, the family event is gone and they don’t see the aftermath of their carelessness or cruelty.

    It seems like there are stupid people in everyone’s family, some of us just have more than our fair share. I got a genetics test and I tested positive from one of my parents but neither will get tested. No one wants to believe that the crappy genes came from them. My mothers doctor even told her that celiac isn’t hereditary and this is coming from an oncologist (who treats her for ITP no less). My family doesn’t even bother inviting me to any family events now and has completely ostracized me. I have no contact with anyone anymore and truth be told, I’m beginning to like not being drug into all the drama and bs. If it sounds like I’ve hardened myself, you’re right, I have.

    1. That is so sad and heartbreaking. I hope you have good friends in your life, or as I refer to them, the family we get to choose.

  20. I have to say that there comes a time when you have to walk away from toxic family and it sounds like this is your situation. I agree totally with Jersey Girl. Enjoy your holidays with those who care to understand. If your family cares enough for your company on these occasions, they will acknowledge and accommodate your health needs. If they don’t, then you are justified to stay away with no guilt. Your family MD’s should come with warning labels so patients can avoid them. Their treatment of you is blatant malpractice. There is simply no excuse for any MD not to understand Celiac or gluten sensitivity with as much attention brought to it in recent years through medical peer-reviewed studies and publications.

  21. An elimination diet…for people as well as food. It seems as though this is what we (as celiacs particularly) do. The elimination of a relationship isn’t necessarily 100% by choice, as sometimes we do the discounting, sometimes we’re the discounted. But what of the testing phase? We’re eager to reintroduce the foods we loved that didn’t love us back, hoping for improved tolerance after some healing over time. Retesting difficult relationships with family or friends, on the other hand…it’s often, “why bother”. I guess because we have a confidence that we can directly affect healing in our own body; whereas “healing” someone’s determined disrespect, ignorance, or just plain apathy can seem like a lost cause, or a relationship not worth saving.

    But just as our safe food list can shrink beyond comfort level, so too can relationships with those that know us well. Isolation…is not healthy. Mounting significant loss, with no counter-balance can seem paralyzing. Some people have no family left, and few friends, after the life-altering elimination of irritants runs it’s course. I know this first hand to be true. It’s another one of the celiac logistic struggles. Should I just walk away from this stress for peace of mind and so on, or are the long-term consequences kind of scary as well.

    Does this mean those with large support systems filled with many loving, respectful fellow human beings can afford to eliminate (disassociate with) the unsupportive, not nearly so loving ones in the spirit of overall wellness, because they’re winning the numbers game? Maybe, maybe not, but these so-called personal decisions are toughies…maybe not as intimately personal and self-affecting as seems at first glance…and, may at times be made for us.

    It’s just absurd that some of us (need to), “…keep praying [our] own family will catch on”. Unfortunately, this method is far from surefire, and in no hurry when time is of the essence. Take the fight or move on to another, but keep fighting, in the face of absurdity. Celiac Awareness Day (& Months) must not become an awareness daze because of some (apparently) lost causes. We all need to bring our bowel pics to dinner, if that’s what it takes.

  22. So sorry for this poor person! It may be time to eat before you go to a family party and then say “I ate already, because I really want to just relax and enjoy spending time with everyone.” If the doctors want to bring up celiac, I’d try to shut them down with “who wants to talk about medical stuff? let’s just have fun!”, making them look like the freaks that they are for making you uncomfortable. Relentless cheer often works to shut down horrible people like this–and they are horrible, because even if they truly believe you are misinformed, why keep bringing it up?

    It’s funny, my in-laws have been great about GF food at family gatherings, but then they’ve only known me as a GF person. I suspect family sometimes thinks, “well, she ate gluten for all those years, why is it suddenly a problem?” My mom is finally coming around to cooking some of her traditional dishes GF after I took her with me to a GF cooking class and she heard all the other nice, normal people there talking about how much it bothered them not to be able to eat what others do at parties, etc. It made her see that it’s not just me and it is a real issue.

    1. Relentless cheer is one of my favorite tactics 🙂

      I just don’t give anyone a chance to do anything other than go along with my choices. Cheerfully of course.

      I learned a lot of this the hard way. I used to have neck back and arm problems, but would arrive at work in agony because I was too embarrassed to ask for a seat on the train. I hated how everyone stared, looking to see what was ‘wrong’ with me. When I realized I had a new medical condition which would make me stand out I took a decision to take charge, and not care what people thought, and take very practical steps to be in control.

      You might even get away with making a joke of it, like laying a bnt how long it will take them to mention it and giving $5 to whoever you go in with as they ‘won’ the bet….

  23. This is very sad. Often we put up with all sorts of abuse from family members. I had family members who picked on me about my GF diet, but then again they picked on me about many things before that. It wasn’t until one of my children were diagnosed too that I stopped going to most of the family functions. And I actually started having happy holidays! If I were you I would not explain or discuss celiac with them. Why beat your head against the wall? Do like one lady suggested, eat before you go, then have a glass of wine and socialize.

  24. I like the “relentless cheer” tactics above. I take my own food, even when I’m told I won’t need to. Then I grill whoever made the food. Then I decide what I will eat. My family doesn’t make any accommodation so I take and eat my own always.

    My in-laws and my extended step-family have been coming around. It really helped having the, all over for some family dinners. When they found out how good “my” food (free of wheat/gluten, soy, dairy, eggs, yeast, bananas, etc.) can taste, they started converting or at least being more understanding and less condescending. The first time, I had friends there to support me and back me up and watch everything to keep me safe. The one mean comment made was addressed and nothing else has been said since.

    I find that family gets a little more contrite when a friend knows how to sweetly put them in their place. Things like “I admire your daughter so much. She really advocates for her health and took the time to understand what makes her sick so she can feel better. You must be so proud.” With a big smile, of course! 🙂

    Oh, the other thing to note is that family is sometimes the worst because they recognize what you are saying in themselves and they are scared. Scared it could be them, that they will have to change, do the hard work, that they will be judged. Try not to come off as “right” but just that you are doing what is best for you. <3

  25. Three of the most respected medical schools in the US (Chicago, Columbia, Maryland) have entire centers dedicated to research on celiac sprue disease and gluten intolerance. Research institutes like that don’t get funded if there isn’t legitimate data available – and since most of that funding comes from the NIHs, which (contrary to popular belief) have insane standards for peer review, then your family members are operating more from belief than from science.

    As for “the big D”… is there a relationship? Absolutely. That said, the assumption that gluten intolerance follows depression can no more be confirmed than the assumption that depression follows gluten intolerance. And there might be yet a third problem that causes both. But this points to the power of stigmatization – not only for celiac/NCGS but also to depression. Way to blame the victim, @$$holes… but here’s what I’ve learned about people like that from my time in academia… people who are that cock-sure that they are right usually do the worst science. As a world-famous psychologist once said, “Science is the only way of knowing in which you are ethically obligated to prove yourself wrong.”

    Hang in there. The truth has a way of outing itself. I hope your relatives aren’t too blind to see it.

  26. Dianne in the desert

    I have no less than seven MDs in the family. I have made it a practice NOT to discuss any medical issues with any of them.

    I live with medical problems that are being treated and the medications are working for me; however, I have found that doing my own “due dilligence” and learning all that I can about how lifestyle affects my situation has done as much, if not more, to help me.

    Seriously, before there were MDs, we had “home rememdies” and those included taking steps to avoid the things that make us sick. All preventive care starts with the individual. When I determine that something is not good for me or my family, I make the appropriate changes. If my needs (and those of family members) can be accommodated in my home during family gatherings, then it behooves others to either accommodate them in their homes, too, or simply do not invite me.

    Just because MD follows a name does not mean that this person is “Mighty Deity” as some have come to think of themselves. Often times the MD could simply mean “Mightly Dumb”. Nuff said.

  27. I don’t have any issue eating gluten, but a friend of mine does, and she doesn’t drive anyone nuts. I have seen it the other way around, with somebody who made a huge deal. Some tips for making those of us in the family understand:

    Help us. It came as a huge shock to me that there is gluten in soy sauce. I never would have known! Give the family as much information way beforehand so they’re not caught off guard last minute.

    Help as much as possible with the cooking, instead of showing up and complaining the family did it wrong (not saying any of you do this) and offer suggestions for alternatives that don’t break the bank (ie spaghetti squash for pasta instead of expensive gluten free pasta.)

    Families and friends need to know how serious this is. They need to know that you’re not jumping on the next fadwagon.

    If your family is truly full of pinheads, eat beforehand and avoid the whole thing.

  28. the more they persecute you; the more they have to keep doing it to save face and in self defense against admitting wrong. its a vicious self perpetuating cycle for them.

    if our redneck relatives won’t admit having learned a bit about us then why would an MD.

    i feel your pain!

    it boils down to the same thing. you can’t hang out with your close relatives either. though, not surprisingly, people who accept you will be more open minded about everything and you’ll wonder why you didn’t venture out sooner.

  29. So If you’re a doctor and you think Celiac is anything other a difficult and debilitating disease you must have missed a class or two in medical school. Go back to school or crack open a book! I’ve had one Gastroenterologist forget to tell me to keep eating wheat in the pre-appointment prior to my endoscopy which was a complete waste, since they aren’t conclusive unless you’re still eating wheat. I’ve had another MD, whose granddaughter has Celiac Disease never take it seriously and then misdiagnose Dermatitis herpetiformis, which only a fraction of those with Celiac Disease can get, as some else refusing to prescribe a medicine that is know to reduce the excruciatingly painful symptoms even after I printed him a page from a reputable Web Medical site and told him about the medicine. Without looking at it, he put it on the counter and pushed it aside, to which I left with my medical records in hand!

  30. I’m sorry to say that we may be related…my in-laws are reacting the same way to my diagnosis. My mother-in-law has a medical background. It’s hurtful and unnecessary behavior on their part. I believe at my core that I’m a kind and caring person, but until they can educate themselves to have an informed and intelligent discussion about Celiac, et al., then I do not care to see or deal with their ignorance. I’m detoxing from emotional inflammation and choosing Peace & Health!

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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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