Friends and Family of Celiacs
marriedtoGFParticipantmarriedtoGF August 21, 2015 at 12:23 pm #12745
My husband has attempted to be gluten free for a year due to celiac disease. He is doing an amazing job but occasionally we get caught by things we did not expect (i.e. my lipstick, medications, our kittens licking my husbands face). Of course, he gets sick; worn out, in pain, throwing up, shaking, ataxia, sweating but cold…However, we are having more trouble managing the emotional/mental issues that come along with this. He will forget full conversations, he becomes argumentative, easily upset, falls asleep like a narcoleptic and develops unbelievably intense depression. If I can be his full time nurse, I would be but one of us has to be able to maintain the house, finances and other life demands. However, I feel like I am failing miserably and he is not being seen too as well as he deserves. I figured I am not the only family member who deals with this so I wanted to touch base with others and see how you are handling this.
We have found a few tricks with these things encase we can help anyone with this:
1. Write down all important conversations such as dates and plans
2. He does not have access to the credit card while glutened
3. Recognize the tell-tell signs of an oncoming glutening (in our case he becomes drowsiness, distracted easily and can not follow complex conversation) and prepare for the storm by ensuring the bathroom is ready, he has enough snacks, meds are ready and our schedule is cleared.
If anyone else has any advice for anyone else, I’m sure it is appreciated. I do not have celiac disease but I see how awful it is for him and I try to help where I can; there just is not much information in handling these issues.
gilmoredebbiejParticipantgilmoredebbiej December 28, 2015 at 11:53 am #13898
My son is 13, he gets very moody, argumentative and depressed too! I really appreciate your tricks, that helps a lot! My son sees a counselor regularly, it helps. We let him sleep as much as possible when he has been glutened. I make more balanced meals, stop all dairy and junk food, and make him eat tons of veggies and fruit, take a probiotic and vitamin D regularly. It’s not a cure all, but it seems to help regulate his mood back to normal more quickly. I also give him activated charcoal tabs to help with stomach issues.
jac222382Participantjac222382 March 13, 2016 at 8:12 pm #14291
Hi my daughter is 16 , has coeliac disease and been two years fully gluten free, she is still unwell, she can’t go out to socialise as she keeps being sick, headaches, stomach cramps and generally aches all over, we are at our wits end. She’s currently attending college and is having a lot of time off, I’m so worried how she will ever be able to hold down a job or have a normal life, we are just banging our heads in a brick wall, she has had 4 endoscopes ,biopsies, been to g.ps and consultants, we just don’t know what to do she is constantly, sick, dizzy, tired, very pale and losing weight, please can someone help us
- This reply was modified 4 years, 4 months ago by jac222382.
wheatfreeeeeParticipantwheatfreeeee April 8, 2016 at 3:23 pm #14408
Hi Jac, if your daughter is still having such symptoms clearly something is going on, do the endoscopies show intestinal healing?
Is she reacting to other foods in addition?
Has she been checked broadly for nutrient deficiencies, particularly b12 and iron?
Has her thyroid been checked? Celiac and autoimmune thyroid conditions are linked, and make you feel awful and can mess up digestion.
Speaking for myself I had allover body pain due to prediabetes. I ached so much! My fasting blood sugar was perfectly normal, so it wasn’t caught for a long time.
I would just say, don’t stop looking, there must be reasons.
pippy longstocking November 6, 2017 at 7:14 pm #16932
Did you ever figure out your daughter’s continuing issues?
I did better on the GF diet by far and I was fine for 4 years. But when my symptoms (as bad a s CD) came back when I introduced dairy. Was she or could she be eating something else that may be causing the continued symptoms?
NewMeParticipantNewMe March 30, 2016 at 12:47 pm #14368
Gilmored — I think the activated charcoal can absorb/lock up some medicines. Not sure if it will do that with probiotics and Vitamin D, but you would want to take the charcoal separate to be sure.
Marriedto and Jac, just because someone has celiac doesn’t mean they don’t also have something else which may or may not be related. Jac, I am concerned there could be eating disorder issues or maybe she is not absorbing enough of something in her diet. Or perhaps even something like Lyme disease, if that is even in your area –?
Marriedto, it sounds to me like something else is complicating things. Just a shot in the dark, but maybe the depression is a bigger problem than the Celiac. Has he tried counseling?
dukes45Participantdukes45 February 18, 2017 at 8:28 am #15898
My wife is living the gluten free life, due to chronic intractable migraine syndrome. Her going gluten free has had some impact on her migraines but has not completely resolved them. I am fully supportive and do everything possible to maintain a gluten free environment for her, the issue is with friends and family. When we are invited to a dinner or party, it raises issues both physically and emotionally for us, since most people do not consider my wife’s condition when planning meals or snacks. Because of this my wife becomes emotionally distraught and feels completely minimized. It has gotten to the point where she wants to exclude us from family events for special occasions such as Christmas or birthdays. She feels that others should plan entire meals which are gluten free and that providing gluten free options serves only as a means to appease her and merely makes her feel as an outsider. I try to point out that people care enough to give her some options and by doing so they are making an attempt to keep her included. When I do this it only makes it worse and she will take the tact that I am trying to tell her she is wrong in feeling like she does. I try to eat only gluten free options when with her so she doesnt feel left out and do understand her feelings. This is becoming an issue since she is now wanting to stay home and exclude us from family events if not entirely gluten free. She also harbors anger towards those who dont comply and towards me if I try to discuss this. I ALWAYS call ahead when invited to a party to ensure that gluten free items are there for her, but this does not seem to help. Please HELP!!!! I love her and support her, but we are being left out because of this and she will raise a fuss when we do attend functions, which tend to leave early. How do I explain to others the importance of this issue or have meaningful dialog with my wife? She has been gluten free since August of this past year (2016).
pippy longstocking November 6, 2017 at 7:51 pm #16933
Duke 45, Does your wife read this blog?
I’ve had CD for 4 plus years. It is a effing suck-ass disease and I hate it. But it is MY disease, not my spouses or children’s or friends. I know it is not reasonable of me to ask others to change, but OH how I want them too. I want the whole world to go off gluten! I go to pot lucks a lot; this disease leaves me feeling very alone; any disease is hard to accept, it is a death of a life we once knew. Do your best to be compassion, good listening, and have empathy for the both of you.
I hope things are getting better for the both of you,
wheatfreeeeeParticipantwheatfreeeee February 18, 2017 at 8:41 pm #15900
Hey Dukes, it’s amazing that you are supportive of a gf household. That’s so helpful. And if she’s only been gf since August, she may still be in that anxious and watchful phase. Also, if she’s still not feeling well, it may be affecting her mood. And if she’s in that sort of no-man’s-land of diagnosis, that can take a psychological toll. I know I really struggled with feeling validated, and I was very touchy.
That said, maybe something deeper is going on. It’s reasonable to ask others to be careful not to expose her to gluten, and it’s reasonable to expect others to be respectful and not judgmental of dietary requirements, but it’s not reasonable to expect others to change everything when it doesn’t affect her.
Just because she can’t eat gluten doesn’t mean that everyone else must stop in their own separate lives.
Is it just that she’s feeling left out? Or is it that she’s afraid of being exposed? I know that the latter was an issue for me. I didn’t mind bringing my own food, but somehow I never felt well after eating in other people’s floury kitchens. I still feel a bit unsure because I don’t want to hurt feelings.
If it’s the former, she just has to adjust. It’s clear you’re doing all you can to support her, and your friends are trying to be accomodating. No one’s trying to exclude her. It’s tough making a diet change, but it’s important to focus on the benefits.
When transitioning to gf, perspective is important. Health and friends are more important than certain foods.
pippy longstocking November 6, 2017 at 7:08 pm #16931
I know this is a old post; I hope things are better.
BUT OMG, I too have similar symptoms as does your spouse. MANY years ago, I was dx’d with mental illness, had been in the ward and therapy on and off for 30 years, but that whole time, it was un-diagnosed CD. I never knew why sometimes, I couldn’t retain information, why other times I would be so clear in my mind, and other days I was confused as if I’d been drugged. It was not until the bid D hit that I knew I was truly physically ill. It is my thinking that ALL folks with mental illness of any kind should be tested for Celiac.
Recently i realized I had been getting trace amounts of gluten from some candy I thought was gf. It was inherently gf, but was processed on a wheat line (not on label). Over a few months my head had been mildly confused, I was slow to realize it might be gluten, it took a few months. I was tired so I started taking my iron again, but then the big D hit, at that moment I was able to put together the symptoms and take another look at my diet. I let my guard down for a moment. Gluten is some scary sh**!
When I go OFF gluten, it’s like I am detoxing; sometimes going off G is as bad as getting glutened. What helped while detoxing last night, my friend distracted me over and over again while I was getting upset about every little thing and could not stop my mouth from running. She finally tucked me in to bed and stayed with me until I fell asleep. That was the best medicine. Although not fun it’s nice to know there are others like me.
Thank you for your post,
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