Dear Gluten Dude: People Don't Understand How Devastating Celiac Disease Is

celiac disease devastating

I’m getting frustrated. Frustrated for me that I’ve come to the realization that I will never feel totally healthy again and frustrated for my fellow celiacs who are in the same boat. While I feel much better on a mostly paleo diet, I still struggle. I’ve come to accept it and it’s become the new normal.

But what I’m frustrated mostly about is the misconception of what celiac disease truly is. The focus is always on the damn food and not nearly enough on the disease itself. The media and the food companies are winning my friends and celiacs are losing. WE ARE NOT HEALING FOLKS. A recent study showed that 90% of celiacs on a gluten-free diet still have symptoms. Why is that??

I’ll be digging into this topic much deeper another day this week, but today I wanted to focus on an email I received from an extremely frustrated celiac who is desperate for help. As always, any words of support you can offer her would be so appreciated.


Dear Gluten Dude,

My celiac story is a little different. I had a biopsy confirming celiac, at least by the doctor who did the procedure and the pathology lab, but my own doctor said, “just wait and see what happens; stay on the gluten”.

Fast forward two years, and I’m in an abusive marriage and share a daughter with my new husband. I had shared custody of my two sons with my ex, so I traveled back and forth across the country to get them. Meanwhile, my current husband tired of the fact that I had two sons and wanted me to “let them go.” But what’s really bad is my youngest son became very ill from Type 1 diabetes, and nearly didn’t make it. During his time at children’s hospital, he was screened for celiac and was found to have it. I left my abusive husband permanently, even when he liquidated our accounts and took all of my money away from me. Now all my kids and I owned was an old van and some clothes.

At this point, my abuser was still threatening and harassing me pretty badly. He tried to get custody of our daughter, but the Violence Against Women and Children Act protected me, to a point. But I was still ordered to pay for plane tickets to fly back to my husband’s town 1700 miles away. Every six weeks. Without child support.

During this custody trial, my oldest son and my young daughter were showing more and more signs of illness. My oldest was also diagnosed with celiac disease. Then, my daughter was found to have thyroid disease severe enough to put the celiac testing on hold.

I am a single mother of three beautiful, but chronically ill children. We rent a two room apartment and share a kitchen with another family and I work 40 hours a week for the owners of the home as a ranch manager. I cannot work any more hours, because my other full time job is a caregiver. We go to specialists all over the state every week. Our old van leaks transmission fluid, so I’m limping it along as much as I can. We have very little to live on.

There is no money for new Nike’s, or a Nook. We can barely put food on the table, as expensive as gluten free food is.

I have to take extreme measures trying to make sure my kids don’t get glutened. If we’re lucky we can afford some school clothes from the goodwill. I’m up at all hours of the night checking blood sugars, giving insulin injections. I’m tired.

Where is the understanding? The courts don’t care at all. My own attorney didn’t care. My now ex-husband doesn’t care. He doesn’t even care about his own daughter’s health problems, refusing to give her the thyroid medication she needs. He makes very good money, just bought a new SUV and lives in a 3500sq ft home.

I tell myself, at least I have my children, and we’re safe. But sometimes I just get tired. Sometimes I just wish for a break. I find myself fantasizing about stupid things. Like maybe if I played the lottery I would win enough money to pay for the plane tickets for the next year. Or maybe someone will help me fix my van. Day by day, we make it through.

People don’t understand how devastating celiac disease is. Then we have Type 1 diabetes and Thyroid disease to worry about as well. I find myself trying to conceal these issues from most people just to avoid stupid questions like, “You can eat a little of this right?” or, “Your son ate too much sugar and he got diabetes? That’s so sad…couldn’t you have seen the signs?”

If you want to blame me for something, blame me for having super crappy genetics. I’m so sorry for that; every day, I wish I could take it back, give them new ones.

What can I do to make it? How can I ever climb out of this dark hole we are in?

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33 thoughts on “Dear Gluten Dude: People Don't Understand How Devastating Celiac Disease Is”

  1. First off, I’m so sorry that you’re all having to deal with this – each one of those issues would be rough enough to deal with on its own, never mind having to deal with all of them together.

    Since you asked for advice, have you looked into any groups in your area for GF folks? Or if the JDRF has any diabetes support groups for parents? Getting to take a break from your kids (when they’re with people whom you can trust to take care of them well) can make a huge difference. Connecting to a local organization that deals with domestic violence might also help provide referrals to better lawyers, if you’re looking for a new one.

    I hope that you find some relief, and that you + your kids continue to feel better. You sound like a really strong person to have pushed through these things, but I also really hope that you get some space to breathe and rest, too!

  2. For starters, and I cannot stress this enough, DO NOT LOSE HOPE… that is what keeps you going.

    From the practical side, ditch as many of the convenience type gluten free foods as you can, that may not be doing any of you any good at all. Try to keep the diet you and the kids are on as balanced as possible. Might mean thinking outside of the box, but if you can manage sticking to fresh simple meals as much as possible that may improve everyone’s health. Sounds intimidating and more work? Do not let it intimidate you, and when you think about it the workload is roughly equal.

    Get a new lawyer, and go after any child support you can get from both fathers…. you need to build a future, and this might be the way to go about it. You need a lawyer that will present your argument correctly in court – no sympathy there, but will pay attention to facts as presented. From the sounds of it you may not have been treated fairly at the outset, and only by fighting back do you have a chance at getting things straightened out.

    Get help anywhere you possibly can – church, social agencies. legal aid clinics, accept any and all assistance you can get. Sometimes you have to dig for it, but it may be out there, you just don’t know yet.

    You will get through this, believe it.

    Good luck and hugs to you.


  3. Oof. My heart hurts for this woman. There has got to be a way, with the disparity in income, for her to get some kind of child support. For food? If someone she knows has a warehouse club membership, she can get bulk rice, etc that is gluten-free. I’ve found some varieties of dried beans that are safe (not processed with wheat) at Target (of all places). Flatbreads/crepes with buckwheat flour or chickpea flour. Ethnic markets are also good places to find things. I’ve found gluten-free Bob’s Red Mill at Ocean State Job lots.

    Soups. The problem with gluten-free prepared food is that they often replace the gluten with sugar or fat. Make your own crackers/cookies. Snacks and baked goods tend to be the most expensive part of gluten-free. What about popping your own popcorn? (not microwave, on the stove). You will have to do a little comparison shopping, but there are more and more options out there. What stores do you have near you? If you have a crockpot, you can make something with rice and veggies and maybe a little chicken… if you think ingredients, as opposed to prepared, it will be healthier. And single-servings tend to cost more.

    I hope this helps, a little.

  4. It is very difficult to start over again. I applaud you for leaving a horrible situation. I hope you are able to tap into resources around your city/state. There are organizations that help and I hope you can find some in your area. Also search for churches that may help you.

    There is light at the end of the tunnel…we just have to fight for it. You can do it. I know you can. You’re a survivor.

  5. Wow, I just don’t even know how to organize my thoughts after reading this. First, I am glad you have your children is a safe environment. I think it is hard on the body physically when you are dealing with emotional issues on top of everything else. I am guessing you feel like you do not have a good support system in place, but my short experience has been that people in this community are AMAZING. Just know you are not alone.

    I will try to write more later- dealing with a loss of a family member right now so my thoughts are scattered, but I wanted to reach out to you and let you know there are people thinking about you and praying for your family!

  6. I am so sorry that this has happened to you and your family! My only advice to anyone and I know this is going to sound so silly but do not give up and ask the universe for help. It’s hard to explain but I believe that we go through things in life to get us to where we need to be in the future. I am in no way saying that you or your family should be having such a difficult time but what I am saying is that sometime, you will understand why it all happened the way it did. Ask for help- every single day, every single night, every single time that something goes wrong, ask the universe but be very specific (don’t ask for one million dollars, maybe ask that some money come your way to help pay a bill that’s due or to get some extra food). Do not give up because you are a very strong person and you will get even stronger. And you are not alone- we are ALL here to help, even if it’s just being able to listen when you need to talk. Please let meknow if I can help you at all.

  7. Glad to hear that you and your children are safe. I understand the frustration of having celiac, type 1 diabetes and thyroid issues, I have all three. It’s so frustrating to talk with people who don’t understand celiac, they think you just can’t eat bread, but it is so much more than that. People have no understanding about type 1 diabetes, you get the “stop eating sugar” statement all the time, again that isn’t the issue. With celiac and type 1 you honestly have to watch and carb count everything that goes into your mouth. There are days I just want to scream with frustration at the ignorance of people.
    With your child with diabetes, could they be put on the insulin pump? Talk to your insurance co and see if that can be covered. They also have a continuous glucose monitor which helps to see where ones blood sugars are, if you go low an alarm goes off on the pump.
    Please know that you and your wonderful kids will be in my thoughts.

  8. There just are no words that cover how unfair this all is, but as a now adult kid of what you describe there are worse alternatives. My parents never fought FOR me, just ABOUT me. Keeping focus on what is needed for kids to be better means documenting, sacrificing & laser focus. Get a notebook for each kid, document appointments, meds, how they are feeling each & every day. This is what is needed to prove in court “dad” is harming with his treatment during visitation. FYI I have celiac, thyroid AND insulin resistance there are 8 major issues that can all go hand in hand with celiac. Knowledge is key!!
    Get a better lawyer, therapy for yourself & better food all sound good on paper. Thing is what i hear from you is a lack of hope that makes things appear worse than they are (don’t get me wrong things for you suck). Again this is where lists come in handy, baby steps. Depression is one of the major “side effects” of celiac. Yes this way of eating totally sucks, but taking care of you is key. Gut healing, depression care & one foot in front of the other.
    Local domestic violence center will have the referrals you need (lawyer,mechanic, social services etc). Not getting child support is in many states illegal since the idea is its for the benefit of the children so one parent (or other) can’t give it up. Money follows the kids.
    Also don’t fall into the trap of “well he gets, he has, his life is better than mine”. This kind of stuff runs down your immune system. Run down leads to depression, depression then leads down the distructive rabbit hole.
    Trust me on this one thing, kids will realize at some point in the future that you sacrificed, scraped & fought for them…while dad played with new girlfriend after girlfriend. Care for yourself as much as you care for them, the energy absolutely will pay off.

  9. I don’t even know what to say other than that my heart goes out to you. I can’t even imagine how you must feel, but just know that we are all here to support you. I do understand how expensive constant medical care and supplies and food, for that matter, can be. Although my circumstances are different, we too live on a really tight budget and it’s not easy to stretch your dollars to make things work. It’s horribly unfair. My only advice that I can suggest is that you maybe try to get a different lawyer. And good for you that you had enough wherewithal to get you and your kids away from your husband. That alone must have been very difficult. Just try to remember the good things you do have and that you have a roof over your head for you and your kids. You WILL get through this.

  10. As for you, GD, I don’t think we should have to have a “new normal” of living our lives not in good health, but I too don’t know what else to do. I am in the very same boat where I have been eating Paleo for 9+ months, and while my stomach seems to feel better, the rest of me does not. I don’t think this is fair, but I am also not sure where to turn. I feel stuck in a rut while spinning my wheels, and I’m certainly too young to feel this old and sickly!! 🙁

    1. I know…there are a lot of us frustrated celiacs out there. And perhaps if we can get the focus on celiac disease and not the amazing gluten-free processed crap that is on the market, we can make some progress.

    2. Rhiannon you aren’t alone. I was GF 2 years & still didn’t feel “normal”. Slowly (& very expensively) with help of functional medicine doc discovered my insulin resistance, then source of celiac brain fog, wicked case of fibromialgia as my candida was dealt with, finally getting mad & finding suppliment for thyroid issue has helped tremendously!! I still nap especially when under stress but I am able to accomplish so much more then I have in years. I am now able to do in one day what it used to take a week to accomplish.

      1. While I do appreciate your thoughts and feedback, I’ve been gluten free (Dx’d Celiac) 8 years ago and a fibromyalgia Dx 6 years ago. Somewhere between 4 and 5 years ago I found out about the Hashimoto’s. The entire time I’ve been on a quest for better health, but that’s tough to do when you never feel well. I’ve had to quit my job because of my health, so then living on one income and still trying to figure out how to pay for my health care needs is ridiculous. I’ve sought a lot of ‘alternative’ care, which is the only thing that has helped me, but I still feel lousy every day. I’ve never eaten so well in my life and it seemed at first it helped (which is always the case for me when I try something new), but now I’m back to feeling like garbage. 🙁

  11. You are doing the best you can under terrible circumstances. Most have already said this, you need to hire a new lawyer. You should be getting child support, plus alimony. I have heard this argument in a divorce case, “the spouse is entitled to live the life style that they were accustomed to.” That could be a good argument for your new attorney.

    If you do not have the money to travel then don’t, the kids are too sick anyway. That would be my second argument with whomever ordered you to buy plane tickets and travel every 6 weeks. Get written notes from the kids doctor’s saying they can’t travel, and for yourself as well.

    All that has happened to you is just awful. I am very concerned about your children. They may need counseling to help them with all the stress.

    Please heed the advice to go to a church, social services, legal aid clinics to get the help you need. Is there a friend or family member you can lean on? I hope so.

  12. I can definitely understand what you are going through, having 2.5 of the 3 conditions you mentioned (thyroid nodules that I have to do something about eventually, but they are ok for now…).

    1. Talk to your local American Diabetes Association chapter about getting help for diabetes supplies. You can also talk to the manufacturers and get free supplies, especially with three kids and a limited income!

    2. I don’t know where you are, but around Chicago, there’s super discounted food centers run by the churches called Fiat marts that carry gluten free products much less expensively than other places if you need to get a prepared product, flour mix, etc.

    3. I think Jersey Girl mentioned the tax deductions above for gf products. If you aren’t already keeping track of your expenses for this, start NOW.

    4. In regards to your ex not giving the medicine your daughter needs to survive, that is child abuse. Don’t tolerate it. Call the police on him. Get a different lawyer. Its exhausting, but you have to be the advocate here since your ex isn’t acting like a parent but more like an immature child.

    5. People say stupid shit all the time to celiacs and type I diabetes people, because all they know is the 15 second soundbites they heard on the news about diabetes and assumed all diabetics are the same, and they heard celiacs are all a bunch of whiny fad dieters, so they think the same of us too. Its tough, but you have to get through it too. And show a good example for your kids so they can learn to deal with it. You have my utmost sympathies there – sometimes people still get to me and I’ve been type I for 22 years. I’ve learned to whip back “do anyone ever tell you to stop eating twinkies because you’re overweight? Now you know how I feel.” or something snarky like that.

    6. Regarding the kids and the insulin and blood tests, I don’t know how old they are, but I was doing my own tests at age 10 and doing my own shots by 11. It didn’t take much education to help me get their. If your endo isn’t helping you educate your kids on how to do this on their own, you need to talk to them about this. You shouldn’t be up all night with them, but you can set up a little area where they can get what they need and go back to bed on their own. ADA has a great resource on how to help your kids through this if you haven’t already read it:

    I know we all have lots of ideas for you, and how exhausting it can be to take on all of this with such external forces working against you, but I have faith – if you’ve made it through everything you’ve already made it through, you can tackle each of these issues one at a time and things will eventually get better for you. Talk to everyone you can – churches, doctors, police, lawyers.

    Hang in there, friend. We’re all rooting for your success.

  13. You are clearly stronger than you think you are for getting out of the abusive relationship. That is difficult and scary and you did it! You can survive and nourish and love your children. Don’t be afraid to ask for help from everyone you encounter. Your children will learn from your courage when you do this and they will learn gracious acceptance and gratitude when you receive help.

  14. I find it shocking that people don’t know the difference between type 1 and type 2 diabetes. Somehow I just thought that was common knowledge at this point. I’m sorry you have to deal with so much ignorance and hardship! You’ve got a supportive community here with what seems like lots of good advice, so I hope it is helpful. Best of luck to you and your kids, who sound lucky to have a mom like you.

  15. Many have given good advice. I however would like to help in a different way. When I was diagnosed Celiac I failed to get better. I had blood allergy testing done next, I am allergic to most of the favorite subs in GF foods. Before learning of my allergy I bought tons of GF flours and have an abundance I cannot use. They are all sealed and unopened. If you are willing to provide an address I would be more than happy to mail you out a care package. Your family is in my prayers.

    1. That’s an awesome idea!!! I have some stuff I need to get rid of too, like a 5-lb bag of unopened Jules flour I can’t use anymore since eating Paleo. I have some other stuff too. I’ve been trying to figure out what to do with it because, as we all know, that stuff isn’t cheap. I can give it away to someone else in need. 🙂

  16. My heart goes out to you and your children. As the daughter of a single mother who also received no child-support (or anything but grief and turmoil from my father), I want you to know that your kids will one day understand the sacrifices you make for them and they will cherish you all the more for your love and dedication. I am constantly thankful that my mother made the sacrifices she did for us. Even when we didn’t have power and were in 2nd (or 3rd or 4th) hand clothes, she never complained, she always found a way to still look at the positive and have fun, although it had to have been so incredibly difficult for her, as it must be for you. Please know that it sounds like you are doing everything possible for your kids, which makes you a wonderful mother. Take care, dear. My prayers go out to you.

  17. I received a few amazing responses on my Facebook page, which I will post here. Here is the first one:

    The social worker that I am tells me you should qualify for SSDI for the kids.. stamps, etc. It will help….The mom that I am just wants to give you a huge hug. MY heart really does go out to you. My words of support and encouragement are as follows, he is an abusive jerk… save text messages, emails and anything you can.. you should be getting half of everything real soon. If not, switch lawyers. Your children are so so lucky to have you. Love you give them is much more than the possessions we all desire. It is medical neglect for the dads not to give meds, or a special diet if medically necessary. Write everything down. Much love being sent your way.. If you ever need a friend, inbox me. Please.

  18. Another from Facebook…

    I agree with Laura, as a social worker, you guys should qualify for SSDI and welfare aid. take it! don’t be too proud for that! That’s what it’s there for. Also, Volunteers of America help people with vehicles. Also, through your local Welfare office there should be a program called PRC (it stands for Protection, Retention, Contingency)….and they offer funds ( used to be up to $1,500 a year) to people with kids who need help to remain as independent as possible. They’ll help with car repairs, appliances, work clothes etc. Look into that. Also Diabetes foundation or Volunteer of diabetes (something like that, sorry can’t remember exactly) offers help to people with diabetes. Call them. I commend you for doing all that you do and encourage you to hang on to your hope and have faith. God is good and loves you and your kids. Prayers going up for you and your kids. Peace!

  19. And one more Facebook response…

    I read this entire blog on GD’s website and all the comments there. I will respond here. Call Child Protective Services (or whatever they are called) in your area. That’s what they are there for. You need a social worker as your ally.

    You already know you are NOT neglectful, but you need help. It is Child Protective Service’s JOB to help you. They don’t just respond to complaints. It is their job to connect you with all the services in your area that you need, including legal consultation, and to oversee the situation and help you to do all that a mother needs to do.

    The system is under-funded and the social workers are overworked. But you need one, on an ongoing basis. Yours is not a case that will be quickly or easily closed, and it will be up to you to keep it open. If they “close” your case after “attending to it,” and you continue to not get the services or the legal help you need, then call them again, and again, and again. You need to fight for assistance. They will be required to help you each time. No judge will separate a dedicated mother like you from her children.

    Along the way, you may surprised when you finally get the right attorney, and the right judge to help you. Do NOT try to “do it all,” you CANNOT. My response is to say there is no way you can continue like this on your own, without tangible support, and that’s what social workers are supposed to do. You and your children all have serious medical conditions, and celiac disease is at the root of it. Request copies of all your children’s medical records if you haven’t already done so, be sure to ask for “progress notes” in addition to all test results, and reports. Always ask for additional on-going records to keep your file current. You will need these records on an ongoing basis.

  20. I feel bad for the kids. Kids don’t chose thier parents and have very little say in thier lives. Not much we can do on a forum for this woman or these kids, unfortunately.


    This “study” you are referring to doesn’t mean we aren’t healing. It just means people still have gas occasisionally. I bet if they gave that same survey to non-Celiacs, 63% would report they had gas during a month time period. The study was done by a company making a drug to help with small, accidental gluten exposure.

  21. Wow my heart goes out to this mama. I hope she reads this – mama you have your kids but moreso your kids have you – and it sounds like you might be all they have – HOLD ON just hold on to whatever speck of hope you have hold on – THEY need you to, even if you can’t you must not give up, they need you not to, they need you to keep fighting, as hard as it is on you. Reach out to the services, be it churches, violence prevention agencies, welfare, food banks, community gardens, woman’s groups…whatever services are available use them, there is no shame, they are there for you and you need them now – someday you can give back – but today you need to take, and there is ZERO shame in that.

    I left an abusive relationship when my daughter was 2, he was crazy – certifiable phsycopath used to tell me I was lucky he didn’t kill me??? Like it was his right to do that and I should be thankful he didn’t…so we left – slept on the floor for a week – those were hard times, but everyday I told myself “you got away, and you have her that’s all that matters” …

    I can’t tell this story with out a little preaching, I was so lost, so depressed, so messed up I just wanted to die – I cried out to God – like I had never cried out before – and God answered me, in so many ways – one day it was a box of food on my doorstep – I hadn’t eaten in 3 days and my daughter had been eating only pancakes for 3 days (she was happy she loved pancakes) and for the whole last day – I was in 2 schools each part time trying to get out of this hole we were in, the hours were long 6am-6pm, then onto parenting with what little I had left – I just kept say “Lord you are my strength and my salvation” over and over all day cuz I felt like I was going to pass out – got home and there was a box of food on my doorstep – I’m pretty sure it was from my church but I still believe God arranged it. I had people walk up tp me at church and hand me a $50 saying God told me to give you this, sorry He’s been telling me for a week and I couldn’t even sleep last nite because of it (I needed clothing for a job interview and food) .I say I parnented from my knees because every nite after my girl was asleep I would go into her room and fall on my knees and pray for God to help me be the parent she needed, help me to do whatever I needed to do to raise her. I try not to preach because I’m a sad excuse for a Christian, I drink and swear, and the list goes on 😉 ….in no way do I dereve the blessings He has bestowed on me, but I am grateful for them. I don’t your beliefs but this is my story, this is how I made it to a better place.

    I utilized whatever help I could find, I spent days on the phone and had books of notes and numbers – DOCUMENT EVERYTHING, every cough, every word between your ex and yourself – and I love the advice to get Dr notes stating you and your kids can’t travel that is great advice.

    Maybe your boss on the ranch would let you plant a small garden to help with food costs?

    Just hold on mama, you are not alone, even if it feels you are, you aren’t.

  22. sorry for my negg comment but i just wonder sometimes if women have a brain or just a uterus???
    You ve had 2 sons which costs You arm and leg to visit and keep in touch and then You get Yourself pregnant with more kids …where is the logic ….
    and its not even to You but interenet is full of posts like that…we are really bad we have no $$$$ …but why to have 3- 4 kids when You can have 1 or none if You cant afford it…all of a sudden is a government responsibility to provide $$$$ and tax payers …..
    sorry for You being in such a difficult situation but that all could b avoided and You r on a verge of loosing all these kids if You get sick …they have only You ……its not fair…for You and them…..
    if it comes to gluten free You can learn how to make a lot of things from gluten free flour …its very easy ……
    if You live on a farm maybe You can plant a vegg garden and have a lot of fresh produce also half of the wild plants is perfectly eatable and YOu can make huge salads from mixed wild greens like dandelions,wood sorrels,plantains,all grasses are ok ,herbs
    it sounds a littlle weird but it is super healthy …weeds are superfoods actually,,,,,,

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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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