It’s been a great summer. Lots of fun. Lots of friends.
And even though it’s gone by so quickly…at the same time it’s been a long summer.
My health has kinda sucked.
And as the summer winds down, I’m dealing with some guilt about having celiac disease. I know, I didn’t pick this disease it picked me, blah, blah, blah, but still.
Mrs. Dude and I celebrated 20 years of marriage this past week. I know what you’re saying…”How can you be married 20 years when you are in your early 30’s?” Pretty simple…I married when I was 11. Nuff said.
Anyway, we had a great day at the beach on Saturday with one of the Dudettes. Not a cloud in the sky. Just a perfect day. The only thing missing was the second dudette, who had to work. I know what you’re saying…”How can you have a daughter who works when you…” Oh, never mind.
We had plans for Saturday night to be with good friends of ours. Sushi and drinks at their house around the fire pit. It was gonna be awesome, as nights with this couple usually last past midnight with lots of laughs and great conversation.
But something happened between the beach and the sushi. I got tired. Not just tired, but celiac tired.
We arrived at our friends house at 7:00 ready for a full night of festivities. By 9:00, I was in bed.
Everybody was totally cool about it, but still, it just sucked. And not for me. As much as I hate it, I accept the fact that I will have some days and nights that I just won’t have it. But it sucked for everybody else.
What should have been a great night was cut down in its prime.
So to my Saturday night friends, I say “I’ll make up for it next time…I promise.”
And to Mrs. Dude, I say “For better or worse…remember? I’ll give you my best as much as I can. Sorry you have to deal with the worst much more than I do. I love you more than words can say.”
Anybody out there deal with the celiac guilt??
The only time I feel “guilty” is when we cannot spontaneously eat out or drive someplace without a plan to take photographs like we used to.
I felt really bad about being sick when we lost 3 years of our lives while I was desperately ill before I got a DX and I went GF.
I apologized profusely to my husband for this repeatedly, saying I wish I had figured it out sooner… until he said stop it. It’s not your fault, babe.
But I do not feel guilty about having a disease that I did not ask for.
We didn’t get a choice, after all.
And neither should you.
What concerns me MORE is that you have this flagging fatigue after 5 years of being GF.
Something is not right.
You should feel better than this and if you are sure you are not getting glutened somehow on a low-level basis, then I think you need to have your thyroid checked as well as your vitamin levels (B-12, folate and D, especially) These can be tanked as a result of malabsorption. The low folate really had me dragging my arse around and no doc thought of it. I asked for the test to be run and it was very low. Once supplemented, I stopped feeling that way.
And take probiotics to help turn your gut around, A health gut = no inflammation and fatigue.
Quit drinking for a month. sorry, but it may not be helping things right now.
At least take a B complex.
I keep nagging you to do all these things, don’t I? 🙂
but you never say if you follow through or not.
Not nagging you now, just suggesting because I think something is going on.
No celiacs I know who are 5-6 years post-DX say they are “celiac tired” and the ones who still have fatigue–also have OTHER health issues that cause the fatigue.. And they address them and get well.
Honest opinion? You need a physical and some lab work done, GD.
Just my 4 cents. (inflation rate)
It your advice was the inflation rate of health care and college tuition, it would have been your 83 cents, but I digress.
I so appreciate the advice and concern. I have gotten full blood work and physicals over the years thinking it must be something else. But it all comes back ok. I am starting to take some nutrients and probiotics daily now so hopefully that will help.
No way I’m getting glutened. Besides the occasional bagel and slice of pizza, I’m as careful as they some 😉
And yes…I think I’m doing the Whole 30 starting September 9. And Mrs. Dude may even join me.
Anybody else in?
We are in! Planning starts today.
math is not my strong suit 🙂
No,not just any lab tests “done through the years”….I want you to ask for FOLATE
and B-12
and TSH specifically.
No doc orders those “just because” on a regular CBC or CMP hon–and I am feeling like you’re not getting the right follow up testing.
Please, just humor me??.
This is what I do–advise celiacs about testing and follow up care. Please?
thank you.
I want to hear you saying “I feel great” someday soon.
I got tested for everything under the sun last year. Heck…she even tested my for syphilis. I will check my records and see I they included the tests you mentioned. As always…thanks.
Look into SIBO.
If ANYONE reads this…
Spread the word about SIBO.
Small Intestinal Bacterial Overgrowth
I went gf. Two years later discovered I still had lactose intolerance.
But I’d still get random serious debilitating fatigue. I had a hunch one day and gave up fructose. It worked. If I will eat an apple I’ll get super drowsy. I once had a chocolate bar with sugar (which is half fructose) and I fell asleep and crashed. It takes at least 24 hours to get out of my system. When I’ve looked up fructose intolerance or malabsorption I don’t fit in with either. I’m kind of just in between. Dropping fructose for me was huge.– An extremely further inconvenience but also an extremely great improvement in the quality of my life otherwise.
What she said. (And not just because I wouldn’t argue with Irish).
Sounds like something else going on. I am going whole30 for September if you fancy company. Irish and I both used it to find extra intolerances in January. You said before you felt great on it (and it could cover a month off the alcohol too).
Get some tests done.
Hang out with good friends.
Shout if we can help
Mw x
Thanks tons Mindwarp. Yes…may join you on the Whole 30.
Ugh yes. My health issues wear on those closest to me, and it leaves me with tremendous guilt. My family and friends are SO understanding and loving. They would (and do) do anything for me. Sometimes it’s all too much for all of us.
Thankfully…we’re both in good marriages with a good support system. We’re the lucky ones.
I’m NCGI but was just beating myself up about how we never travel. because travel just wears me out so much. I feel like my spouse has missed out on the carefree, adventure-sort of life he could have had. And, I feel like my kids are missing out because we can’t just spontaneously head out for the weekend like their friends do. Everything requires so much planning and twice the work. The thing is, if I try to be that person – that carefree person – I end up sick and exhausted and we don’t have fun anyway. So, it’s a bind.
I have a different kind of celiac guilt…my 23 year old daughter was diagnosed with celiac two years ago. The signs were all there, from the time she was 2…the rashes that had no explanation, the chronic anemia, the exhaustion, the stomach pain (especially when I told her to eat her whole wheat pasta, in spite of how badly it made her stomach hurt) and a plethora of others. She’s doing pretty well now, after being gluten free for 2 years. But I can’t get past the fact that I wasn’t able to connect the dots…or just ask her doctor if all of these symptoms could be related to one disease. Since she went GF I have supported her thoroughly and will continue to do so. Ironically, although I don’t have celiac (I’ve been tested), my doctors have suggested that I go on a dairy free/gluten free diet to try to reduce inflammation in my body since I have several autoimmune issues. My biggest supporter and the person I go to for advice? Yep, my daughter.
Thanks for what you do for the celiac community!
The doctor should be the one feeling guilty for missing it all those years.
Oh Dude, I feel this guilt ALL the time! Every time we go somewhere and we can’t just randomly pick a place to go eat I feel it. Every time I am too tired to go out with friends at night I feel it, and now they hardly ever invite me anymore. I went on vacation with my family a few weeks ago and we only went out to eat as a group once because I found a restaurant with a big gluten free menu. We rented a beach house so we could cook our meals at home, and even doing that I still got glutened twice. I feel like I ruin everyone’s fun.
Here is something that makes me feel guilty…when friends or family make me something that think will be GF and then I don’t eat it or eat it and wish I hadn’t. Does that make sense? I have even lied–GASP-and either not eaten said “treat”….or hid out in bathrooms after eating said “treat” and said I was fine.
I am in on Whole30 when you start! I already have the book.
Sue
Oh! I so understand that! But, even if they try, you just never know. Been there, not eaten that.
I hate the guilt that comes when people try to accommodate me and I have to tell them I can’t eat whatever it is they bought or made especially for me. This happens with my SIL a lot. She wants to make sure there is food for me, but I can’t trust her kitchen unless I am keeping an eagle eye on the situation, and even then there’s some concern for CC. Just a few weeks ago I went to her house for a picnic. She’d bought gluten free crab cakes. I’d neither seen nor heard of the brand before, so I spent at least twenty minutes researching (on my phone) the gluten free status of them. With there being no real gluten free label laws in place I had to waste her time, and the time of others, while I ensured my safety. I know my safety is important, but I still felt bad for putting everyone out like that.
I am blessed with an amazing family – my son and hubby’s idea of a great day out now is the movies. When my son was little before I was dx’d, he loved nothing more than sitting at the pond and throwing rocks into the water. The path to the dx’d was tough on hubby, as he wanted someone to figure out what was wrong. But the person I apologize most to is myself – that I’m not the hiker/rock climber I was in my younger days. And, some days it really hurts. I am in hopes things will get better as far as the fatigue goes – as my doctor recently found me to be severely anemic with extremely low vit D levels, and we will begin working on that.
But, my hubby’s motto is “if you can’t keep up, I’m getting you a scooter.” Disney, here we come!
I’m sorry about the guilt. I am not celiac, but half of my family is, so I read your blog as a way to educate myself. We have other food allergies (nuts & peanuts) in our house — which bring on their own set of guilt. Don’t feel guilty though. We all have our issues and I would hope that all family and friends would understand regardless if it’s celiac fatigue, diabetes, or something else. Take care and keep pressing on. And make sure they check your thyroid levels — always check the thyroid.
Thanks Atomic.
Well geeze I wasn’t feeling guilty till ya’ll chimed in!! Damn baptist guilt. Celiac sucks I didn’t ask for this & I’m giving all I’ve got…so bite me! 😛
I just feel tired. Tired of feeling sick, tired of “my best” being about 50% of what it should be. Tired of feeling like crap for no good reason. Yes irish I take my thyroid, apple pectin & vitamins!
Have 2 funerals to attend today, food & mourning all that & I’m exhausted before I’ve made it out of bed. Well at least for once the black baggies under my eyes will match my outfit!
This is interesting. I’m not GF, but my 7-year-old and was diagnosed when he was 4. I haven’t seen that fatigue in him since he went GF (unless he’s been gluttoned, but it makes me worry too that maybe it’s just something I don’t understand.
I can relate to Carolyn’s comments about the guilt. I feel very luck that our son was diagnosed quickly and yet I still feel guilt about the 6 months- year that we didn’t know. I also eat primarily GF around him. If we’re at a restaurant I order GF if I can in case he wants to try my food. I won’t eat from the non-GF bread basket and at home, even though the other four of us have (so far) tested negative for Celiac we still eat GF at home.
I have both Celiac Disease and Fibromyalgia – I only have so many marbles in the jar each day and there are days/weeks all I can do is get myself up, go to work, come home & go to bed.
It’s certainly caused me a tremendous amount of guilt with not spending time with family/friends and don’t get me started on the havoc it creates for ones dating life.
I’m still learning how to slow down, take better care of myself and not use up all my marbles in one day! I had a therapist actually give me this glass jar of marbles and told me to start off with a full jar each day and take out a marble each time I got tired. Seems silly but it works.
The disease in many ways can be very isolating – very frustrating for sure.
As an ultra runner with Celiac, I just don’t get the fatigue you speak of…unless I just ran. A. LOT. However, I do have hypothyroidism. Maybe that’s the problem? Also, I was diagnosed 12 years ago and ate the standard GF diet (GF break, pizza, pasta, rice, corn, etc) until I started to get major celiac-like symptoms (fatigue, swelling) from GF grains. I have evolved to a grain free and starchy carb free diet over the years and the symptoms are gone. I have been told there are many of us that go through the same experiences and end up grain free as well as gluten free. Something to think about?
I have had to cut way way back on my exercise levels (which I hate) because my body can’t seem to handle it. I’m going to go grain-free (and maybe corn-free too) and see if it helps. I need my energy back!
I NEVER feel guilty, but I think other people should. We have a rule in our household, no gluten. As a favour to my father to help him get a car he spent Fri night here when I was VERY clear not to bring any gluten into the house. He’s been so careful in the past he doesn’t even hug me in fear of crumbs getting on me or residue. So, I thought we had an understanding. My husband forgot groceries off of a grocery list in his hand, so we had to go back to the grocery store with my father where he kept grabbing gluten and throwing it into my grocery cart. Then he gave me attitude and a hard time about me being nervous about it. Needless to say I left the grocery store in tears. Who should feel guilty?
Of course this is just ONE incident of daily crap someone with celiac disease has to deal with.
I don’t have Celiac, I have Chronic Fatigue Syndrome, and I TOTALLY get you on the frustration of not knowing when the wretched fatigue is going to hit you. I’ve been doing a lot better since my new doc started me on Vit B injections and daily supplements, but then yesterday, out of the blue, I had a totally off day and the accompanying brain fog left me unable to even pack my family’s picnic for our annual family reunion. It totally sucks! I’ve had this disease since my teens and have learned to pace myself pretty well, but having 4 young boys (2 with ADHD, 1 with Celiac, and 1 with Anxiety Disorder) doesn’t always allow me the luxury of resting when I need to (which, let’s face it, is every day). The guilt associated with feeling like my kids are missing out on a “normal” childhood because I can hardly get of the couch, is tremendous :(. I feel for you, Dude, I really do.
I’m not sure “celiac guilt” is the right phrase… as much as it is “celiac shame.” Celiac guilt implies that you did something wrong related to your celiac disease. Celiac shame implies that you are somehow “less than” because of celiac. That, I think, we all go through because of this lovely disorder we have that so intimately affects so many aspects of our lives – as well as the lives of others. I think that fuels a lot of the psychological damage that celiac can cause, and as much head work as it takes for us to to get from the point where we miss the gluten-laden foods to not wanting anything to do with them because we know what they do to us, it takes more head work to get to a point where we can say, “I don’t need to be ashamed of this – the people who matter don’t mind and the people who mind don’t matter.” Is this lifestyle a pain in the @$$? Absolutely. But the last thing we should do is be ashamed of it…
It must have been in the air because I was so tired this weekend too. I took a nap Fri night, Saturday and Sunday… not just a little catch me up quick snooze, a passed out cold hard sleep for 3-4 hours.
I hate to feel bad about myself, but I do nothing with anyone. I keep secluded, don’t really get invited anywhere unless it’s in the middle of the night to pick someone up from the bar, if I try to do something with someone they do the” feel sorry for me” thing because I can’t eat anywhere, and I don’t like to date because no one truly gets why I can’t eat out. I had felt really bad about all this until I found out a woman I know has a fructose intolerance. She can hardly eat a thing. Pretty much some gross health bars and meat. She can tolerate a potato a week and a little rice here and there.
I feel guilty too. I feel guilty that my kids and I can’t do much, that we try to plan something and then I get tired and let them down. Stupid Celiac.
Ok, where do I start??
I bet if anything happened to your wife you would be there in a heartbeat, right? Yep, I know it! That is what marriage is all about, be there when you need each other, I guess that’s why your relationship has lasted this long, and started when you were 11, cough, cough.
My husband of 33 years, has some allergies, severe, and to bees, anaphylactic shock once, and he and I both have been very lucky I have been here to help him through them and get him to the ER…did he ask for that, nope, but I am still here. Can he help it, nope!! When you truly love someone it doesn’t matter what diseases, or issues you deal with, — for example, if your significant other snacks like they are munching on rocks while your watching your favorite tv show, or snoring loudly at 2 am while you’re tossing and turnning… UMM, by the way, those were just made up, cough, cough.
I will admit I have the guilt, such as with both my daughters that suffered so from when they were little and me not knowing, but that is just it, we didn’t know! I comfort myself by saying, I took them to the doctors reguarly with the same issues, and I did my very, very best, and ecstatic that they were dx before they were my age!!
For the record, I do get that celiac fatigue every now and then too. You feel it, and just have to lay down, and your body is just exhausted. Sometimes I even sound confused when I speak, or when I write nothing makes sense, but then I know that it is my time of the month – (2 more days left to go in this month)… for a shot of Vit B12. I have to give it to myself every month, but my body needs it every 3 weeks. I feel especially good the day after I have LIVER – lots of B12 in that, and I am not a liver fan at all, yuck! Now I’m really off track….
BUT, UNtighten the noose, give yourself a break, on the days the guilt might be setting in, don’t give into it, that is where I am at right now, and it seems to make of a more happier life. Give yourself permission to be happy!
Btw, you’re way to cool for guilt – except when your wife deserves flowers… then if you don’t get them for her, permission to feel guilty. 🙂
Great advice Denise. Much appreciated.
GD-
I get you. Sometimes I just want to roll back the tape and be that 20 y.o. chick that ate nachos and drank beer until closing time. I want to pick up and roll to the shore without fear, drink ice cold Vice’s at Dutcmann’s after a long day at the beach. Maybe I feel guilty because it sounds so self centered. Guilty as charged.
xx
Jersey Girl
_______________________________________________
“Hello, how low?”
Nirvana
I totally wanna be that 20 year old chick again 😉
I am still haunted by the Britney pics….
So is Mrs. Dude 🙂
🙂
me too, I’m afraid. 🙂
I know I have additional health issues that I am still working with a doctor to figure out. It is a complicated mess right now. Even so, I feel better than I did a few years ago. There are still days that I barely do anything and end up back in bed sleeping most of the day, but I set an alarm to get up and make my husband dinner when he gets home from work. I make that the one thing that I never, ever, not do unless I am sick like flu sick. There are days I don’t have the strength to carry laundry up the stairs and make him do it for me. I carefully plan my days and chores out, do this, rest, do that, rest, so that I can get the most done in a day without crapping out.
Sometimes the house looks like crap. Sometimes the dishes don’t get done for three days. Sometimes laundry piles up a little. Sometimes I’ll sleep all day while my husband goes to work and busts his butt at a physically demanding job. Know how much guilt I have about it? None. Celiac picked me, I didn’t pick it. We’re still madly in love and will do anything for each other. Next month we’re going to the city to tour a taffy factory for his birthday because, why not? There is a pizza place up there that has a separate sealed room gluten free kitchen that I told him about and pizza is his favorite food so maybe we’ll eat there. (I’m pretty excited about trying it.) Maybe I’ll pack dinner. Maybe I’ll stop at Eleanor’s gluten free bakery on the way up and get a chicken salad arepa for dinner…. *drool* I’ll probably end up beat and sleeping for 2 days after but he’ll have his fun day so I have no reason to feel guilty.
I also agree though, that if you don’t feel well there is SOMETHING wrong. There is no reason we can’t feel good like everyone else. Figure out what is making you feel bad and get rid of it out of your life. And if you have to live your life a little more whole30 all the time, do so. So what if companies send you samples? You can politely respond that if they even read your blog they’d know you don’t eat that stuff. Or feed it to your wife or kids, I certainly value my gluten eating husband’s opinion about my gluten free foods so I know I’m not crazy when I think something is especially awesome.
I do live my life about 85% Whole 30. Perhaps it’s the 15% that is doing me in.
I was diagnosed with Celiac 5 years ago. I felt great for the first 4 years after going GF. The last school year, not so much. Lots of intestinal issues I had never had before. My road back to better health started with this blog post from the Celiac Diva.
http://www.theceliacdiva.com/im-gluten-free-and-still-sick/
I knew cross contamination was not an issue for me, so I started taking Rainbow Light All- Zyme Double Strength, just in case the issue was low pancreatic enzymes.
My dad, an endocrinologist, read the Celiac Diva’s post, did some research, and found me this great article. It’s worth reading and showing it to your doctors.
http://www.celiac.org/images/stories/PDF/rubio.pdf
Worried about copper deficiency, I started taking a multivitamin again after not taking one for a year. Maybe that lack of a multivitamin for the past year was part of the issue.
I’ve always taken Align or Culturelle as my probiotic, but now I also take Nexabiotic, which has 20 probiotic strains.
I have no idea what did the trick, but I am feeling back to normal.
I hope you can figure out what’s going on and that you’re feeling better soon!
Constantly…I feel this all the time. I feel like I’m such a burden on my husband and the family at large. We can’t go to the same places we used to enjoy, do the same things as we always did “before.” Heck, we were huge craft beer fans and would go to tastings, festivals, etc. 90% of our social life has just gone completely out the window. My daughter is crushed because this will be our first fall & Christmas where I’m totally gluten free, and I can’t make the cookies or other recipes that I’ve made her whole life…family traditions right out the window. 2 months in to my total un-glutenyness, my husband actually blew up one night and told me I was a burden, and he was tired of our life being ruled by the fear of gluten. He felt terrible about it almost the moment he said it, and he’s really a very loving and understanding person. But those words have never left me…I constantly feel like he and the rest of the family feel that way about me, and it really makes me sad sometimes 🙁
You can still make cookies & other things you used to. Just swap the flour for gluten free flour or look for new recipes you could make together.
TCT You have to make this “the new normal”, hon.
Christmas and all the trimmings–the same, but GF. You are looking at this the wrong way, I am afraid. Subscribe to Living Without Magazine and start baking with your daughter.
It is simply untrue that celiacs cannot have a “normal life”!
I do.
I bake, I socialize, I travel and I live my life.
Get a Koolatron cooler for the car, pack a lunch and go.
The main thing is to stop emphasizing what “used to be”
Mourn it, then get past it. Forgive your hub’s outburst–callous and insensitive as it was–and move forward.
Your daughter may need to be GF herself someday as this is hereditary and your example is what she will look to.
Don’t let anyone impose guilt on you. Best wishes.
That magazine made such a difference in my life. The biggest blow to me was that I was a baker. I grew up baking with my Grammy in her kitchen. I cried and cried and cried some more about what I lost. I felt like I lost a piece of my soul, the part of me that stood on my tippy toes when I was 2 to reach onto the counter to snatch pieces of uncooked dough thinking I was getting away with something. The part of me that spent nearly every Saturday of my childhood in that kitchen baking everything I could imagine. I cried because it felt like my heart was being ripped out.
Then just before Christmas last year I was walking by the magazines at the grocery store and stopped to look at the gluten free ones like always. When I picked up the copy of Living Without the front cover had a picture of Christmas cookies with one of them looking exactly like the ginger molasses cookies I had grown up making. I’m not ashamed to say I cried again, right there in the store. I realized that what I was originally mourning wasn’t cookies, it was the traditions and memories. I still have those, they just have to be gluten free now. I made the cookies and sent some to my Grammy who lives 2000 miles away. She said she liked them. 😀 I didn’t lose the memories, I still have all those. And I can still bake as much as my pants can handle. (Probably more but I try to be reasonable.) I still go out to eat, it just takes more effort than it used to. And if we go somewhere I can’t eat, I just bring my own or eat before.
Celiac is only part of who I am, it is not who I am and it does not define or control me.
“The main thing is to stop emphasizing what “used to be”
Mourn it, then get past it.”
The best advice a celiac could get.
Well said, Irish. I have no idea what Celiac guilt is because I never felt anything but pure joy at being diagnosed. I was an almost dead one 8 years ago and that is no exaggeration. I dove in and learned all I could and then some. I got my life back. I do like to cook so that was no problem. But when doctors miss a disease so obvious (I presented as a classic Celiac) and nearly killed me, there was no way to go but up. I have 4 autoimmune diseases in total and do not let that get me down. I work full time and exercise at the gym twice a week with a trainer. Do I get tired sometimes? Sure, but I do not let it win. I go for a walk to clear my head.
There is simply no reason to feel guilt of any sort just because you have Celiac. It is a conquerable problem and if you are still having issues after 5 years, there is another problem to be discovered and dealt with. I found it much more tiring to go to dopey doctors who told me I was fine when I wasn’t. There is work involved with living a healthy lifestyle but look around and see all the screwed up people, stuffing themselves with crappy fast food and feel sorry for them!
OK…I will admit to some sorrow…….the Greek Festival is this week-end in my city and I can no longer go and eat all that wonderful food the little old Greek ladies make with such love.
That is a tragedy but I have learned to deal with it. It still sucks big lemons but I will treat myself to my favorite, upscale restaurant that does outstanding gf gourmet food. You find other things to make you happy!
I have a partner like your husband, we have been together for 12 years and for 8 of them I was very sick with a list of mis dx before finaly being diagnosed with celiac in May. We have long been planning a vaction across the EU and I had wanted to eat my way through it. I was upset that this would no longer be possible and he snapped at me “well you still could, if you hadnt gotten this dx you would still be eating gluten”. I was devastated he could be so harsh especialy since my health had been so poor and I had not been able to carry out normal taskes for years. It had gotten to the point I could barley leave the house and even before the dx I was concerned the trip would not be possible because of my health. He said he should not have said it (never realy appoligized) but once something like that is said it cant be forgotten. I understand it is a change and it is a burden on him/them but we are the ones that have to deak with the full spectrum of this disease, we cant sneak away from celiac and eat gluten like they can. Shoot my bf wont even go gluten free in the house. I could go on forever and I dont mean to be negative but I am still adjsting to all this and the guilt is just an added burden I dont need, none of us need and it does nt benifit anyone.
Yeah, I completely understand what you are feeling. My husband gets it, but doesn’t really. He has no idea what I go through and feel every day. He can only see the outward signs of how much I struggle, mostly because I don’t complain much. I too, like you, am very careful about what I eat, but there is still something going on. I do have Hashi’s and fibromyalgia, but I can’t ever seem to get to a place where I feel good, even with treatment of everything. I eat a mostly Paleo diet, which, like most other things, seemed to ‘work’ at first. I started feeling better, which is why I try to still stick to it as best as I can, but then it all just came crashing down. Don’t know what happened or why, but the cruddy feeling just started creeping back in….and hasn’t left.
Suffice it to say, my husband is such a blessing in my life. I don’t know what I’d do without out him, but every single day of my life I have guilt for what I put him through. He’s been through the thick and the thin with me and it’s still not getting better. THAT’S the crappiest part. He loves me unconditionally and I’m not sure why I deserve that, since I feel like I’m always on the winning end of things with him. He does everything I can’t and more, and never complains.
It’s a tough life to live, and I certainly wish those of us who still feel cruddy without the gluten could find a solution. Most of the time I feel like I’m just existing and not thriving. 🙁
Boy oh boy, does this resonate with me! I was dx’ed with MS twenty four years back & though I handle it extremely well through a really low fat diet (no meds at all) -still, the fatigue factor is an everyday fact of life.
NO social life whatsoever…and top it off with more diet limitations than can be COUNTED, between that, and This. omg…but, as I got older, I just -adjusted, as to do otherwise only brought on more stress & fatigue. I’m fortunate to have a most understanding husband! They told me way back to never assume that EVERYTHING- is because of the MS…true enough. Sucks…cause you think that if you’ve got such this monster to deal with, you’re done…no more right? HUH UH!! The hits just keep on comin sometimes…then I’ll go a very long time…being ok. It’s life…just real life. A lil ways down the road, it gets easier!
Once again I wake up to a post from you GD, that touches closely to how I feel, just in a slightly different way. A few days ago my husband was craving home made biscuits, (he is not GF), and I was feeling guilty, b/c of me, he could not make them. He goes to Costco a few times a month and likes to go without me so he can eat their pizza without feeling guilty. I’ve never given him any reason to feel guilty, I’ve never complained about what he eats. He can eat that pizza in front of me, I really don’t care, but he cares.
This also brings up a topic I recently had with a friend. She wanted to take us out to dinner, and asked, where can you eat? (There are not too many choices, and the ones I would trust are mega bucks expensive at a resort.) I told her not to worry about where I can eat, you pick the rest. and if I don’t feel comfortable eating there, then I’ll have a cocktail or two and enjoy the company. She could not handle that, she said she would feel guilty eating and me not. See how this goes, around and around. For the life of me I could not convince her it was ok…I can still enjoy the company and not get sick. What is more important? The guilty thing is affecting my life all for different reasons.
So, I’m at the grocery store and see that Bob’s Red Mill makes a gluten free biscuit and baking mix. I think a-ha, we can have home made biscuits. Well, we made them yesterday. I ate one, and within 2 hours, I was on the toilet with CD gut wrenching horrible pain and the big “D.” So, I am now convinced I cannot tolerate 20ppm. You touched on this subject a few months back. I had a feeling I should not try this biscuit mix, I did not trust my gut feeling, and so I felt guilty that I was sick all day, and my husband was upset b/c the package says, GLUTEN FREE. He didn’t even like them, he thought they were horrible.
I went to BRM’s website and read that they test at 19ppm, so they are within the legal parameters. The question arises again, if they are using naturally GF ingredients and this mix is being processed in a dedicated facility why is it not tested to the lowest level possible <5ppm scientifically? So, maybe you too cannot tolerate the legal guidelines? I don't particularly feel guilty that I have this disease, but it certainly effects a lot of people in my life, (of feeling guilty.)
FYI, I buy Kinnikinnick products and have never had a problem. On their website the owner blogged about their testing procedures which I found very interesting, and why I do not react. Not sure the link will take you directly there but you can find the article on their website. However, I do NOT think they claim, "NO GMO."
< 5ppm gluten: Labeling and Science vs the Real World
Hope you start feeling better and don't beat yourself up for something you have no control over. We have an auto-immune disease and it is complicated.
Thanks Aloha. And I agree…it’s not always about the food when we go out. I’m cool with the company.
Yes, I do feel guilty. Because even though I accepted Celiac (I can’t change it, so accepting it is better then being mad all the time), I do feel like a burden to people. I feel guilty if we have to walk an extra few meters to a lunchroom where I can eat, I do feel guilty when the only place to lunch is Mc Donalds, I do feel guilty when people have to organize something for me.
I’m really saying sorry for who Celiac made me. I hate it.
And yes, ofcourse they tell me it’s fine! It doesn’t matter if we can’t eat everywhere, it’s a good thing we can eat somewere. But still. I wish we could just go to some place that is their first pick, instead of going somewere just because of me.
And I always tell people not to buy me special food, I do it myself. Just because I don’t want to cause them trouble. I don’t want them to have to go to a different store, just because of me.
I know, it’s crazy, cause the other way around, I would do it without blinking. But I just can not ask them from people in my case.
So yeah, I do feel guilly. A lot. Even when they offer to buy me something, I keep telling them it’s okay, don’t spent to much money, blablabla.
Wow. Writing this down makes me realize I might need to change the way I think.
Glutendude; do you mind if I use the idea of this topic (Feeling guilty because being a Celiac) on my blog? I promise you I will add your website to the blog and I promise you it’s going to be a complete different blog.
(Ofcourse, I could just do it, but thats not playing fair).
Of course Chantal…blog away.
ugh, I have been dealing with this for the last week. I have been barely able to get out of bed and so snippy when I finally do, couldn’t figure out what it was. The only thing it can be is the big pot of chicken veggie soup I made using a rotisserie chicken I bought at the grocery store. The ingredients said nothing about wheat but there has to be something in the rub they use that is not being labeled. I will be having a discussion with the store’s manager. I feel so bad when I lash out or grumble when my loved ones are being nice and quick to apologize. Some days it seems that is all I am doing… apologizing.
I’ve learned to lock my office door when I’m feeling that way.
Hello Gluten Dude, I’ve been following your blog ever since I was diagnosed with celiac disease about a year ago. Today’s blog really hit home for me. At first when I was diagnosed, I thought that if I followed a gluten-free diet, I could go back to being the energetic girl I was before I became sick. However, after following a strict gluten-free diet for a year, I am still dealing with days where I barely have enough energy to get out of bed. I feel guilty when I can’t eat the food my friends make for me or when my family have to walk a few blocks further to get to a restaurant that I feel comfortable eating at. I think this disease can be very isolating at times, but when I read your blog I feel less discouraged because I know that I am not the only one experiencing the frustrations that accompany this disease.
That’s what community is all about…less isolation.
We suffer together usually. He has Celiac’s too.
When we have been glutened we usually go to our own corner of the house, veg, etc. And we have had times where we know our food issues have caused fights, angry discussions, and frustrations (because both of us did not feel like housework so things piled up.)
But, I am kind of thankful we both have it. I dont’ think it would be fun trying to cook two separate meals, and trying to keep from being contaminated in the process. He would have to eat the way I do. And if he wanted something else he would have to wait until we went out to eat. Ha… But we both got it and that helps….I guess that sounds bad to say I am glad he has it too. But I believe the big man upstairs knew what he was doing when he brought us together.
I have read stories on other blogs of people dealing with spouses, children who almost sound like they do not even care about the mom, dad, or other kids who do have to eat gluten free. I have read stories of a husband who seemed bent on making life hell for his wife. I think for her, it was time to move out and hand him some legal papers. My first husband resented me my entire marriage when he found out I was a type 1 diabetic. I thought really, we are married a month and you have already broken our vows! And not with another woman but over my health?
So, I guess we should be extra kind to those who show us kindness in our lives inspite of our disease. And to the others who don’t care… in my opinion, Adios. I heard a Church sermon yesterday that talked about not letting people pull you out of the deep (going for your dreams, goals) and in to the shallow water through getting into petty fights. Just ignore them and keep pressing on!
Something I don’t understand. The guilt from people trying and failing at accommodating us. Once we have simply said to please not try, why should we feel bad when they refuse to listen to us? I have explained to people to please not purchase or prepare foods for me, and if there will be a get together that involves food I remind them. If they decide to waste their time and money, that’s fine I guess but I won’t let it spoil my ability to have a good time, guilt free.
If someone bought a diabetic cake and they refused to eat it, no one would expect them to feel guilt about that. As a matter of fact, people would kind think it was a dick move to just go out and buy them cake and expect them to eat it after being told not to. So why the hell aren’t we calling out people’s dick moves to us rather than wallowing in guilt because we got crap genes?
Maybe its just me. There are two kinds of guilt. The first is the one that everyone here is discussing, which is the kind that is simply a bad feeling that you can’t do anything with. You just feel bad, and it isn’t even your fault. The second kind is the type where you actually did something wrong. With this type, you can allow it to push you into action and it can serve a purpose. The first kind though? Screw it. If something isn’t my fault I won’t feel guilt for it.
Oh the guilt!!! Catholic guilt + Maternal guilt + Celiac guilt!!!!! It’s all too much! We’re two years in and I still feel tremendously guilty that I passed this disease to my girls. I don’t verbalize it and I try to set a positive tone every day but the lack of spontaneity, the school absences that are already adding up, the symptoms that still linger, and my insomnia that seems to love my gluten free lifestyle….just simply kick my butt. As I drag through the day, I know full well that if I’m dragging, my kids are paying a price. I feel guilty asking my kids schools to follow a 504 plan….WHY? Don’t know, I just do. Today I had a 504 meeting for my freshman in high school daughter and I didn’t feel guilty. The reason? The people assembled totally understood. An assistant principal with Crohn’s disease and a football coach with a thyroid issue….both gluten free and all at once I exhaled and smiled. No weird looks or judgments. I think my problem is that I care way too much what other people think. I’m getting better about it. When it comes to my family, I will always feel guilty.
Hi Gluten Dude,
I am sorry to hear that you are going through a rough patch right now and I hope that you feel better soon. There was a recent study published in Sweden in which adult women with Celiac Disease were asked questions about their experiences being Celiac patients and common themes included fatigue, still feeling ill despite being strictly GF, social isolation, sadness, etc. As far as I know, there has not been a comparable study regarding males with Celiac Disease, but I have a feeling that if the study were replicated with men, similar themes would emerge…
Like you, it took a long time for me to be diagnosed with Celiac Disease. Although I initially felt great on the GF diet, I continued to have persistent fatigue and intermittent “IBS” symptoms, which I at first blamed on gluten cross-contamination and being a “super sensitive” Celiac. But, with time I realized that I was strange symptoms from totally GF foods, like soy and heavily sulfited foods.
Through reading, research, and some chance Internet encounters I learned of a relatively new diagnosis called “mast cell activation syndrome,” which can cause a myriad of problems, including fatigue, “brain fog,” and IBS type symptoms that can replicate “glutenings.” In this syndrome, mast cells release too much histamine, which can affect almost any organ system of the body. The first case reports were published about 5 years ago, so most doctors are unaware of it, but I have been fortunate to be in touch with Dr. Afrin at the University of South Carolina, who is one of the U.S. experts in mast cell activation disorders. Through personal communication with him, it is very under-diagnosed and increasing in frequency (up to 14% of Germans are affected in some pilot data). Although people with mastocytosis, the most severe mast cell disorder (and the one which most physicians learn about during medical school), have recurrent hives and other rashes, patients with mast cell activation disorders can have no skin problems at all.
I am putting this out as an idea not only for you but for others with Celiac Disease or NCGS who may be experiencing abnormal symptoms despite being strictly gluten free, having appropriate thyroid function, and appropriate vitamin supplementation.
Here are some helpful links to (to cut and paste) about mast cell activation disorders:
1. http://mastocytosis.ca/MSC%20Information%20Pamphlet.pdf
2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
I’ll be writing more about this soon, but am trying to slowly get the word out about it as it seems to be linked to other autoimmune disorders, like Celiac Disease.
Jess
Thanks to be beaten over the head until I let it sink in, I finally was able to accept that I have a histamine problem this spring. I actually have gone from not tolerating heat well, to sort of allergic to it isn’t safe to leave my house in hot weather without ice packs allergic. Fun times. Fortunately, a lot of control can be had through diet and environment control. I know people really want to hear “restrict more foods” but it can make a huge difference in quality of life. Since the enzyme that breaks down the histamine in foods is produced in the small intestine I think that celiacs and especially doctors should be more aware of this when they have continuing symptoms.
Interesting. Will look into Jess. Thanks.
I admit it.
I was the one who helped beat Adalaide over the head with this histamine intolerance issue because I have it. 🙂
I am sure I mentioned this before on here, but having Jess say it may shed more light on the subject.
One of the main high- histamine foods is….alcohol.
Doctors in the UK have discovered this histamine intolerance, but as usual, the medical community here is slow to embrace it. The primary symptoms of histamine intolerance are:
low blood pressure (fainting, dizziness ; hypotension)
diarrhea,
headache which aggravates when moving (in contrast with tension-type headache),
heart rhythm problems (cardiac arrhythmia),
acid reflux from stomach,
running nose (rhinitis),
asthma, chronic cough
hives (urticaria),
flushing,
itch (pruritis),
painful periods (dysmenorrhoea)
painful joints, muscles,
tiredness.
Symptoms often occur with some delay to the trigger. After the primary symptoms of histamine intolerance have subsided, there may be secondary symptoms which include:
sleep disturbance (being awake, insomnia)
anxiety and panic attacks
Your body reacts to high histamine levels by producing adrenaline to increase the blood pressure. Adrenaline is causing these secondary symptoms of histamine intolerance.
Aside from the medical sources Jess has posted, here is an excellent summary (in layman’s terms) of what happens when the gut lacks the enzyme DAO that controls this histamine response (especially lacking in guts that are compromised, like a celiac’s gut)
http://thatpaleoguy.com/2011/04/11/histamine-intolerance/
By reducing the number of foods and beverages that release histamine, you can knock down this inflammatory response and reduce these symptoms.
It has worked well for me.
It is amazing that after more than a decade of persistent and year round allergies, I am now off my allergy meds and completely symptom free! (At least most of the time… the grass cutting still gets me a little.) I’m not constantly sitting because I’m about to pass out because my blood pressure is wildly out of control dropping. Although I still do have to be careful with too hot showers, hot tubs and extreme temperature drops. I don’t itch so much, I’m less tired, I’m less moody, no more constant heartburn. Then, I’ll wake up one day feeling like I got hit by a bus, I’ll be stuffy and feel icky and I’ll wonder if I’m getting sick. Then I’ll remember I went on a cheese bender yesterday and swear it’ll never happen again.
In short, if you have a histamine problem, following an appropriate diet will change your life the way being gluten free changed your life.
yup, wine or gin, chocolate, and cheese are my triggers
The key is moderation.
Take them out, put back one at a time and find your level.
These is the HH food list and foods that release histamine
http://www.allergyuk.org/common-food-intolerances/histamine-intolerance
Maybe it will help you, GD and any other readers.
I found out I had it–ironically–when I did the Whole 30 diet with my buddy, celiac mindwarp back in January and I ate too many shrimp, too many strawberries, tomatoes and other vegetables/fruits with histamine in them! Seemingly healthy foods kept making me feel sick.
almost all those symptoms I had (which resemble celiac/gluten symptoms as you can see! ) are gone, unless I take in too many HH foods at once.
Ok, Adalaide and IH you’ve got my attention. Did you get tested for mastocytosis? Is this something celiac’s should be looking at, when we are not feeling well no matter what we do? Or just eliminate the foods that are high histamine’s and see what happens? I am still getting DH lesions and yes I am strict as anyone can be….
from what I have read, the DH lesions can still be active up to 2 years post GF, even when strict. Sorry, Jules 🙁
Hi Aloha Julie,
I did opt to go through the formal testing for mast cell activation. As of now, the medical diagnosis is based on symptoms, response to treatment, and having at least 2 abnormal lab tests (there are several blood and urine tests sent). My tryptase level, one of my blood tests, was elevated, high enough to be abnormal and indicate a mast cell problem, but not high enough to need to be evaluated for mastocytosis. I also had abnormal urine markers. That beng said, looking back, I am not sure why I opted for the testing, because the end result is the same (avoid high histamine foods and use anti histamine therapies as needed). Like Irish Heart, I start to get symptoms from too much red wine and cheese, also from soy based foods and foods with sulfites (sulfites are a huge trigger for mast cells to release histamine). I can drink and eat these things in moderation, sometimes, depending on how clean the rest of my diet has been. It has made a huge difference for me. At 1st I was angry to have to “give up” more foods, but now I am grateful to no longer feel like I am getting symptoms from gluten cross contamination all of the time (looking back, I am pretty sure that a lot of my brain fog and fatigue were from too much histamine).
For those of you doing the Whole 30 next month, count me in!
Jess
P.S. For those of you who may be interested, Yasmina, The Low Histamine Chef has a wealth of information on her website, as does Dr. Janice Joneja.
Yes, the Low Histamine Chef is a very good resource!.
Oh yes…those sulfites are a bugger. I love wine and cheese and chocolate (who doesn’t?) , but it does not always like me.Same thing with shellfish. My face and scalp develop little sores, I am awake half the night, heart pounding out of my chest, my gut hurts and every joint and muscle screams at me. I puff up like the Michelin Man. All those tomatoes in our garden? can’t eat them. Tomatoes are a histamine-releaser.
Not worth it.
This is also possibly why some people like Jules will ask ” Why do I still have DH?” when it could very well be a histamine response.
We have tried to spread the word about it on c.com. too but most people are understandably, reluctant to take out more foods after a diagnosis..
My friend Lisa and I figured this all out while reading tons of research
and when I brought it back to my GI doc, he said “THAT MAKES PERFECT SENSE because histamine response comes from the lack of two key enzymes in the gut…. so, good for you!”.
I said “yeah, ok, so,what can I do about? is there something I can take for it?”
He looked at me and said: “Don’t eat those foods for 6 months…. that’s it. Try one at a time.” (dang, thought there was a miracle cure)
Non-gluten grains and some dairy are NOT high histamine foods, however, those are not allowed on the Whole 30 program.
Most “amines” and MSG, deli meats, pickled foods, vinegars, preservatives like BHT, red dye (like in M and Ms)–all of those can be problematic as well.
Whole 30 works, but you will have to remove the HH foods as well — and then, it gets very limited. (see the chart I linked to)
“How bad do you wanna feel good?”…. is what it all comes down to. 🙂
I am about due for another Whole 30 round, so yes, count me in, too.
IH, Adalaide, Jess, thanks for all the info. I am definitely experiencing some of the symptoms mentioned. Sometimes I feel like my whole body is buzzing. I do find it difficult to think I need to give up some of the foods listed, though. Avacados for one, they grow like weeds here. I love tomatoes, ….I quit drinking wine, it really effects me. Unexplained weight gain too. Haven’t changed anything and I’ve gained 5 lbs since April. Once again, thanks for the info. I am going to give this a try.
Everyone will react differently to different foods on the list. For me it was actually a mild allergic reaction to avocado that was the last thing that got me beat over the head with info and made me open my eyes. They’re top of my list for things I’d never consider eating again. It took doing an elimination diet though and removing all high histamine foods for a while, then adding back small amounts of one at a time to understand what would be triggers no matter what, and what I could tolerate in moderation. Without doing that, there is simply no way to know if symptoms persist if it is because you never entertained the idea of giving up that one food or because this just isn’t your problem.
I didn’t see the point in wasting time and money on tests that would tell me what was already painfully obvious. I needed to change my diet. I responded well so it was just confirmation of what I already knew. I was already avoiding a whole bunch of high histamine foods for another condition so it wasn’t as painful to change my diet (again) as it could have been… except the cheese. Since the treatment is diet, I personally don’t see the point in involving some completely moronic medical “professional” who will just tell you that you’re talking out your ass, making crap up, or otherwise nuts.
Hey Dude,
I was checked by Entero Lab 15 months ago and was malabsorbing severely, with a gluten sensitivity. Am I celiac? Maybe. But I will never know because I didn’t want to start eating gluten again so that they could do a doctor office test on me. Anyway, I know that I must never again ear the G word. And yes, sometimes I feel the guilt that goes along with people catering to me….
Anyway, I a few months ago, I started feeling very tired again. Just like my life with gluten. (Not low on any vitamins, I see a nutritionist)
I went through Entero Lab again and had them test me for other foods. Turns out that I am Very intolerant to Oats and Walnuts, and less so to rice, corn, tuna, beef, and dairy. I was eating a lot of nuts since going GF. They were my treat. But, I quit eating Walnuts and Oats and overnight, I lost 5 pounds and I woke up again. No more tired girl! It was an expensive test, about 500, but it was worth it’s weight in gold to me!
Just saying, it might be other food causing your tiredness.
Good Luck Dude,
Thanks for being out there for everyone,
Kathy
I went to 2 doctors before the doctor that is helping me get my gut healed. One wouldnt do test so things that needed checked never got checked. One wouldnt listen to me and what I thought might be the problem. Its my body and I take on being knowledgable and knowing what is going on and asking questions. If you are still not feeling good or you get to feel good and go totally backwards for no reason (this is what kept happening to me for 2 yrs) I found gluten free society website. Gives you information you dont find other places and things that other doctors (functional or western-wont tell you) He goes outside the box. I would say he knows the most of any doctor that I have spoken to. He gets people well. I know that I am finally getting well. He did a ELSA test, heavy metals, vitamins and minerals test, a stool test. It takes more than taking out a food and you could have other foods bothering you too. Its a slow process but this is the best I have felt ever and people tell me I look healthy so I know that I am on the right track and I can tell with my body which is the biggest thing. Dr. Osborne is my doctor in Sugarland, tx and he trains others too.
Hmmm.
I recognize that histamine list of symptoms. Could be an interesting whole30.
Are we all on for 9 September? (Well, you know, wthose of us who are up for it…)
That’s the date I’m starting for sure. I’ll blog about it and see how many people we can get to join us.
Excellent
I think I am going to get going on my aims for this one, it will be my 3rd, and I learn loads every time. And try not to spend the time from now having ‘just one last…..’
I am the queen of “just one last”…I am having just one last cookie right now….sigh….my pants are tight….and certain carbs make me “fluffy” and my visit to NYC was not exactly “low hista or low carb”… whoops! 🙂
I have to do the modified Whole 30.
These very gracious, sharing people assembled a
shopping list that is Whole 30 AND low histamine. (I had to figure that one out myself a few months ago, so it so cool to see it in a handy shopping list. Mine is just scratchy handwritten notes LOL )
Check it out! 🙂
http://whole9life.com/2013/06/expanded-iswf-shopping-lists/
Oh I could fight you for that crown. I remember eating more than 10 pounds of cheese in a week when I knew I had to go low histamine. Don’t look at me like that, it had to get eaten… it was already in the house! I indulged in a lot of other things that week too. I’m fixin to do a true elimination diet after my husband’s birthday. (Cause there is a pizza place up in SLC that has a separate, as in closed off with a door, gluten free kitchen that we’re going to go to while we’re in the city.) I could totally modify that shopping list to be low-myotherstuff too. And add milk. I’ve said it before but that is my line in the sand. Don’t care. Don’t wanna hear it. Line. In. The. Sand.
Oh, no need to explain. I hear the cheese calling me at night from the fridge….eat me eat me
You could try seeing a homeopathic doctor. A couple of months ago some of my symptoms from before I went GF came back. Or sometimes I’d feel semi-glutened after eating. Usually when I am glutened, there is no question. There are no ands-ifs-or-buts, I have been glutened. (As I’m sure is similar for everyone else here). I always feel it right away and it hits me pretty hard. That being said, I started feeling….sooorta glutened after eating a meal. And I’d be so confused. Was it cross-contamination? No, I’d be dying. I emailed my homeopathic doctor and I said, “look, I feel like I’m a billion times more sensitive than I was. It feels like my body is finding bits of gluten in RICE, for crying out loud. I know that’s not the case, but that’s what it feels like. Can you help?” and he fixed me up with some all-natural meds (and got me to take super enzymes, vitamin b12, and probiotics for 30 days). Now I’m back to normal. Not perfect, but I’m not going around semi-glutened all the time!
Celiac is more than just a gluten intolerance, it is an autoimmune disorder that can lead to many other food allergies or intolerances that cause the same response. For me sometimes it is corn products (But only sometimes, and sometimes anything non organic) Additionally, Celiac itself and the additional allergies/intolerance issues can cause irritation to the nerve endings through out your body and this, in my experience causes the kind of anxiety that manifests as idiopathic guilt response in which I have the feeling you get as a kid when being sent to the principals office. I have found that antihistamines can help when this is bad. I am told that leaky gut diet can help but I haven’t tried it yet.