Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: Anyone in a relationship with someone who doesn’t believe in your disease.
Yeah, yeah…I know…I missed a blog post yesterday. So much for my 30 posts in 30 days. Actually, let’s just say yesterday’s [missing] blog post was aimed at helping me since I’m on work overload right now. Phew…back on track.
Anyway, there are lots of things I don’t believe in.
– I don’t believe in Santa Clause (anymore).
– I don’t believe in the tooth fairy.
– I don’t believe in heaven and hell. Well…at least not hell.
– I don’t believe a word Donald Trump says.
– I don’t believe Eli Manning is a Hall of Fame quarterback (and that comes from a huge Giant fan).
– I don’t believe there is a greater performer than Bruce Springsteen.
– I don’t believe you should be able to charge $6 for a loaf of gluten-free bread that looks like swiss cheese.
But I do believe in celiac disease.
And I do believe in NCGS.
But alas…not everyone does. And that my friends is the topic of today’s email.
This is kind of a long story but I’ll make it as short as I can. My sister has been diagnosed with Celiac Disease. My mother, although no official diagnosis, likely has Celiac Disease. My mother had unexplained seizures for about 10 years before my sister was diagnosed. My mother has went gluten free after she discovered seizures was a reaction.
I strongly feel I am either gluten sensitive or Celiac. My gluten free adventure began after I was involved in an auto accident leaving me without a car and stuck at my mom’s until repairs were made. I have always taken care of my health but when I was stuck at mom’s with no car, my only choice was to eat what she had. It has now been about 10 months and I could give you a list of things that have improved but this is getting long as it is.
The reason I am contacting you is I need advice. About 3 months ago, my boyfriend and I finally got our own place. Having a shared kitchen has proven to be a real nightmare. My boyfriend insists that he doesn’t see anything changing or getting better. He can’t ‘see’ what is going on inside me. He insists that I need to be tested but that is not possible due to lack of finances.
I also do not feel I need to be tested as I do not need a doctor to tell me how I feel.
He is pushing me to the point of going off gluten free just to prove to him what happens. However, I really do not want to do this but this is tearing the relationship apart. Everything he uses he contaminates with gluten.
Do I really have to be tested? How do get him to truly understand? I think the hardest part is that we have been together for seven years and my going gluten free is only now a problem for the relationship.
I want to stay healthy and feeling happy. How can I if I live with a glutenous demon (my boyfriend)?
I could make a joke how the seven year itch is not a celiac symptom, but I won’t go there.
I remember moving in with Mrs. Dude after we were married and it’s absolutely a big adjustment. So many things that I was used to doing…she did differently. And vice versa. Perhaps that’s a part of what he is dealing with.
At the end of the day, it’s all about compromise and balance.
Now with gluten, there’s only so much compromise you can tolerate. So if you believe you must be gluten-free for your health, he’s gotta get on board or hop off the train. And if he won’t do either, you need to decide if the relationship is more important than your health and if it’s not, I suggest you depart at the next station and find somebody who “believes”.
“I thought love was more or less a given thing; Seems the more I gave the less I got.”
Oh…and for the record, I also believe in everything Crash Davis believes in (note…some naughty words.)
Oh, can I relate to that. I was diagnosed with celiac disease in October 2012 and have been gluten-free ever since. Like today’s letter writer, I strongly believe my mother has undiagnosed celiac. She’s had bouts of unexplained anemia over the years, is hunched over nearly in half due to osteoporosis and developed extreme shakes in her hands and legs about 20 years ago. She tested negative for Parkinsons and MS, so I believe it’s gluten ataxia. Now 87, her legs shake so hard she can’t even walk and her voice is so shaky I have a hard time understanding her.
But my stubborn father doesn’t believe that CD is real. He thinks my G.I. made it up to make money off me and sees no reason to have my mother tested. He says the shakes are due to her age. She’s been like this since her early 60’s and he’s 93 and doesn’t have the shakes so the age hypothesis goes right out the window. He was actually offended when I told him that CD has a genetic component, as if it was an insult to say I likely inherited it from one of them.
I took my own food to a family dinner last year because there was nothing I could safely eat. Later I overheard my husband’s cousin, who never liked me to begin with, tell my sister-in-law that there was nothing wrong with me and I was “just doing it for attention.”
Thankfully both my husband and 14-year-old daughter (who has so far tested negative for CD) were completely on board with my gluten-free lifestyle right from the beginning. They bought me new cookware, a colander and dedicated toaster and use the old stuff for their gluten bombs. They eat my gluten-free meals so that I don’t have to cook two separate meals (interestingly, my husband said he likes the gluten-free mac & cheese better than the regular stuff). They still eat gluten and take great pains to avoid cross-contamination. I couldn’t ask for a more supportive family.
I agree that the LW needs to weigh whether her health is more important than her BF and decide from there. I strongly suspect that she’ll eventually choose in favor of her health.
I have a thought: you don’t have to stop being gluten-free. If everything in your kitchen has gluten, it’s likely you would test positive, anyway.
If you can’t afford health insurance, it’s likely the Obamacare exchanges can give you insurance that will let you get tested. I’d see what you can get for health insurance on the healthcare.gov site, and just go get tested.
Personally, I got a biopsy celiac diagnosis, while trying to be actively gluten-free for ten years, because I was eating things made in shared facilities. It sounds like you live in a shared facility.
And, “Yes, if you test positive, and he’s still being a jerk, dump him.”
Ditto
Sounds to me he doesn’t want to believe you because he doesn’t want to change his way of living. I would dump his butt. He has proven himself to just be rude and inconsiderate. You deserve better than that. Somebody that acts like that is not worth staying with. Find somebody that is supportive. Support is one of the most important things in a relationship. Not tearing you down. In the long run you will be much happier and healthier.
I’m going to be a bit harsher than most of the comments so far: Dump him now.
Regardless of whether or not you actually have Celiac or NCGS, he’s being a donkey’s rear end. You know what my husband says when I say I think I found something that MIGHT help? “Cool, go for it.”
Yes, I agree! If he really loved you, he would want the best for you to matter what. You want someone that you are going to marry to be more understanding of your problems than this. If he loved you, he would take time to educate himself instead of spending his energy trying to sabotage you. You deserve better!
Dear Writer,
If you were my daughter, this is what I would say to you.
You said: “We have been together for seven years and my going gluten free is only now a problem for the relationship.
I want to stay healthy and feeling happy”
You also say there’s a “list of all the things that have improved”–
The question is: why doesn’t he see this good health you are enjoying as the most important factor in you staying off gluten?
Isn’t your good health and happiness his primary concern right now?
(It should be, kiddo)
If he doubts you about your need to be healthy off gluten, then he will doubt you about other things too.
If you really examine your relationship, ask yourself this: what else have I had to “bend on” to accommodate him?
If the list is long, you’ve been doing all the “compromising”, honey.
Relationships require compromise–a word that means “meeting each other halfway for the mutual happiness of both parties”.
Just some food for thought. Good luck.
Very well said!! 🙂
Right on Irish. If the writer was my daughter I would say the same thing and I would apply it to myself as well.
Another voice to say that he should be prioritizing your health. If he can’t, he doesn’t deserve you!
I’m not sure how to explain what it’s been like since I went GF 7 months ago. I saw enough red flags from the results of various tests that were run plus my physical symptoms to convince me to get serious about going GF. The breaking point was when I started getting blisters on my arms that were very likely DH – I looked at photos on the internet and they looked exactly like what I had. I had one test for celiac that was negative – not sure if it was an accurate test or not. GI doc wanted to run an endoscopy but it would’ve cost too much. Although I felt much better for the first several weeks, I have constantly dealt with setbacks, most of my own doing. I eat simply and carefully when I am home but I do several business lunches/dinners a month and regardless of what I do, I invariably end up getting “glutened” and suffering for days afterward. So my fiancee, who lives with me, looks at the situation and feels that going GF has made me worse, not better. Can’t say I blame her. I have discussed making our kitchen completely GF and exclusively eating at home but she wants no part of it. She already feels deprived because she can’t make the kind of meals she likes (unless I’m out for the night) and we rarely go out anymore. Plus we both enjoyed drinking craft beers and many of our friends are into craft beer so it has drastically changed our social life, which really sucks. I feel that she thinks I am “experimenting” and without an actual dx she will not accept that I need to be GF. I’m afraid that even if I do get a dx she will resent the changes and it will continue to hang like a dark cloud over our relationship. I’m not feeling very optimistic about our future.
I think you explained it perfectly Steve. First, I will point above to what the always insightful Irish Heart wrote. Listen to that lady, for she is wise.
Second, I will add that you need support. This disease sucks. It may not be so bad if it were only figuring out what you can or can’t eat. The effects are terrible and unpredictable. If you love her, and it looks like you do, you have to let her know that this isn’t a lifestyle choice. There are things you have to give up. Craft beer? Yes. Socializing with friends who drink it? No!
You will learn to adjust and adapt. If she wants to be with you, she will have to as well.
I hope it works out!
On another note, it pisses me off that people who need an endoscopy can’t get it done because of the expense.
Hi Ken,
Thanks for your comments. I agree, I need support but the options are pretty limited where I live. This group, by far, has been the most helpful for me (thanks GD!). You are pretty perceptive, I do love my fiancee, very much. This disease kind of hit out of the blue. I never imagined that wheat/gluten could be causing all of the symptoms I have lived with my entire life (I’m in my mid 50’s). I went corn free, then dairy free about 6 years ago and that helped quite a bit with asthma and various skin issues but I still didn’t feel great. Then the big D erupted last spring and I saw several docs trying to figure out what was causing it. GI doc tested for celiac – no idea what the test was – came back negative, so that was that. My allergist was the one that alerted me to the possibility that gluten was the culprit because I had so many symptoms. It took me 3 months to decide to go GF (or at least attempt it) and I was amazed at the changes in just 3 days. Joint pain – gone, sinus congestion – gone, D – gone (sort of), energy level – way up. But, I keep poisoning myself because I don’t want to be the “whiner” (as Catharine Sims noted) so I’m not careful when I’m out with friends, business associates, etc. I really hate this disease but I have to embrace it, deal with it and learn to live with it.
The IgA test only comes back positive if you have not already removed gluten from your diet. My physician explained that I would have to eat the equivalent of 4 slices of bread for 2 months to have the test come back positive. I looked at him in horror (as I sat there with my back completely a mess from DH). He quickly acquiesced and said that DH was ONLY a symptom of celiac so that in itself was my positive confirmation (he said there was no way he was going to have me go back on gluten just so the stupid test came back positive). Currently I’ve been living with DH for 2 1/2 months and have been completely gluten, grain, sugar, and dairy free for that time, but still no relief. There’s a reason they call this the “suicide rash”.
hey Steve!
You said this: “getting “glutened” and suffering for days afterward. So my fiancee, who lives with me, looks at the situation and feels that going GF has made me worse, not better”
But this is not a accurate deduction, though. Going GF is not making you worse. People do not “get worse off gluten” if they have celiac or NCGS. But they will keep having symptoms reappearing if they are not really GF . You’re not GF—not if you keep getting glutened and you have DH eruptions, hon.
DH is the skin form of celiac. You could easily have a biopsy done of the area next to the lesions. No endo needed.
You need a dermatologist who is knowledgeable about celiac and DH to do it properl, but please, hear me out…If you have DH, you’ve got celiac, kiddo. And you and your fiance will have to
learn to live with this idea: you will need to be GF for life.
Let us know what happens.
Sorry for any typos I may have made today… I am typing on the hub’s tiny little
tablet screen and I feel as if I have just hit all the wrong buttons
😉
STEVE
read this!
http://celiac.org/celiac-disease/dermatitis-herpetiformis/
Hi Irish,
First I want to say that I have read many of your comments and appreciate the time and energy that you (and the awesome GD and others) put into helping all of us that are suffering with this disease. Yes, I have read that if you have DH, you are celiac. Maybe I just needed to hear it from you to really believe it because there is no doubt in my mind that what I had was DH. Fortunately, it has pretty much cleared up but there are still residual scabs that itch like mad whenever I get glutened (I call them my “canary in the coalmine” ;-)). My biggest problem is finding someone that I trust to help me manage food, supplements, etc. The local options aren’t very good.
While knowing if you are a celiac might make your life easier (and help your doctor) you could easily be a NCGS. There is no test for NCGS. It’s a diagnosis of exclusion. You’ve already done that and you feel better. Therefore you are at the very least NCGS.
Nobody needs to eat gluten to be healthy. It won’t kill him to eat gluten free in your home. However, eating gluten WILL kill YOU. It kills you slowly, but make no mistake about this. It’s killing you little by little.
If he wants to eat gluten, have him do that outside of your home. It’s a good excuse to eat out. It makes eating out as special for him as it is hazardous for us.
You need this. If he loves you he’ll understand. If you’re important to him he’ll do the right thing.
My boyfriend is not gluten-free, however he is paleo. Which I guess is GF.
When someone asks me what has changed since I’ve gone GF, since I was not compliant for years, my BF is quick to answer for me. He’s see things even I didn’t notice, like not complaining of joint pain, or having to rush to the bathroom after eating or being in a mental fog or feeling the need for a nap after eating. It’s great to have his support. If you aren’t getting that, look for someone else! Life is too short to be in a miserable relationship.
First and foremost I am sorry for your despair. NO ONE and I mean NO ONE is worth compromising your health…I have yet to understand why anyone who loves us wouldn’t be incredibly supportive in our attempts to be healthier and ultimately happier.
With that said the unfortunate truth is that there are more selfish, unsupportive, narrow minded people out there than the opposite when it comes to gluten free…Sadly even parents (in my case).
I would suggest giving yourself a timeline..as hard as it may be my dear, when changes become so drastic the people in your life may have to go…along with the gluten..A proverbial “cleaning of the house”.
Nothing can be more detrimental to your return to health than the stress of “other peoples issues”….
Although 7yrs is a very long time you might need to ask yourself
“Does he really love me”…
Best of luck,.. I can’t imagine how difficult this is for you.. you definitely have a lot of support here.
J
This Mr. Rogers image macro came up in my Facebook news feed today from a friend. What great timing.
http://media-cache-ak0.pinimg.com/236x/82/e8/a6/82e8a689fe8ad62b670f8a6517e210d3.jpg
I have tested negative for Celiac twice and negative for an allergy to gluten/wheat. But when I took the gluten out, as per my doctor’s recommendations, it was apparent that I was indeed sensitive. My husband was 100% supportive and became just as good at reading labels as I was. When our 4 year old son, after 4 years of negative Celiac tests finally got IgG testing and tested off the charts for gluten and all the wheat grains, my wheat loving husband didn’t think twice about the added expense of gluten free for the family instead of just for me. Plus we have also discovered that neither our children can have dairy and nor can I. Is that a problem for my husband who drinks milk at every meal? Nope. He is 100% supportive. He has seen the changes in my health and the health of our children. We may not have the official Celiac diagnosis but it doesn’t matter. I think when you truly love someone, it isn’t a sacrifice to make the change to see their quality of life improve.
Three years ago I was at my wits end. I had had chronic diarrhea for at least 10 years, bone and muscle pains, gas, bloating, and toward the end I was throwing up, covered in a rash, and my hair was falling out in clumps. I didn’t have insurance in March of 2011, but for the previous 16 years when I did, I had been diagnosed with RA, and had had my gall bladder removed. Long story short, my daughter recommended first that I go lactose free, it helped some with the diarrhea, but the other problems persisted. She then recommended I go gluten free, so we looked it up and I had so many of the symptoms of Celiac that I knew that had to be my problem. With no insurance, my only choice was to go gf and see if I felt better. The transformation was amazing, my rash disappeared, my hair stopped falling out, my mouth sores went away, and best of all no more bathroom issues. My husband and daughter were both supportive of me, but I hit a wall when it came to my sister and mother. When I told my husband that I was going to eat gluten for two months so I could be tested, he asked why would I put myself through that to make them happy. He was right, so when they went out of town in the fall of 2012, I told them that I was eating gluten in order to be tested, I said I was tested while they were away, and that it came back positive. I still get some flak from my sister on occasion, but I’m trying to learn to just let it go.
I put my story up without making a point for the original story. I think it’s easy to deal with an illness like CD when your partner, husband or wife is supportive. I couldn’t imagine trying to live gf if the person I live with daily gave me hard time about it. I can handle other family members not accepting my illness, because I don’t live with them and don’t have to interact with them daily. A spouse or life partner should be supportive of you regardless.
Here’s the thing and bear with me on this Celuacs are pains in the butt. They go on and on about gluten endlessly and moan that the world doesn’t suit them. They expect everyone to turn their lives upside down for them. I know this because I am the mother of two Celiac’s. It’s a nightmare and quite frankly a pain in the butt. Having a child with multiple disabilities I already knew about the world not accommodating people who don’t fit the norm very well. It’s not helped by people who claim they can’t eat this or that or the other when they clearly do but as really just attention seeking. Celiac disease is an actual disease but most won’t or can’t see the difference between the celiac and the attention seeking whiner. So you have two choices you can crawl away and capitulate to everyone or you can just be the best pain in the butt you can be till those around you get it, would we have disabled access in buildings as a right if there weren’t pain in the butt wheelchair users? Nope. Your home should be your safe zone. Your partner should support you even if you wanted to do Tibetan throat singing. He doesn’t have to like it but he should support or at the very least not sabotage you. If he doesn’t believe in you after 7 years enough to support you then you will really never prove anything to him as he won’t really care enough to see the truth. Now this is not throat singing we are on about here it’s your health. So you either lay down the law in your best pain in butt manner and demand support you are due or you leave. You will deal with many non believers in this life those that profess to love you the most should not be among them. I live with Celiac’s it’s not that big of a change . It’s not much to ask of a partner.
Well, I had a nice comment abut my supportive Italian man and thenI watched my favorite clip from Bull Durham and I forgot~~Oh My! LOL
As my life is currently in an ungodly busy stretch, I just want to say a huge thanks to everyone who keeps the conversation going here. It does NOT go unnoticed and it does NOT go unappreciated.
I heart you all 😉
When I played with the idea of going gluten-free (was fed up with going to doctors and being told everything was normal) my husband wasn’t the most supportive. I probably talked about it …a lot, but I was trying to figure things out. I ignored his less than supportive looks, and continued to figure out if food was my problem. It was! I only figured that out after eating totally (seriously, no cheating) gluten free. It was a long and bumpy road to get there, but now he sees the light. He has noticed that I feel better…especially since I am not going to the doctor for various ailments or gone to the emergency room having a full-blown panic attack. Be serious about your health, regardless of his opinion and maybe he will see the light too. If not, he’s not worth it.
Agree with pretty much all of this. If he doesn’t see how this is benefitting you and wants you to prove your need to eat this way, then he’s not worth your time. A pretty sad commentary on him seven years into your relationship. Continue healing and don’t look back!