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Family Members Who Just Don't "get It"..


gancan

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gancan Apprentice

I have been eating gluten free since 10/2012 and feeling better.. (I have had some slip ups that have made me very sick - especially over the holidays since that was a completely new experience). I have been loving the feeling of eating and knowing I won't get sick. I have read a new book which gave me SO much information on how to read ingredient labels and cross contamination. I recently went shopping at a local health food store and had a basket full of foods that proudly stamped their products as "gluten-free"! The feeling when I left the store was so uplifting, I couldn't wait to get home and try some of the new foods and fill my newly designated cupboard with my goodies! But even after having these moments of motivation that I am on the right track to feeling healthy, today I am struggling with a feeling of sadness. I have a battle going on with my emotions when I am in social situations. I have been trying to NOT be the topic of conversation at the dinner table because I don't want to feel like the outcast.. but I also feel like people can be insensitive by expecting me to be a part of social dinner gatherings and just NOT eat certain foods without providing an option of something gluten free I can have to replace what I am missing out on. We went out to dinner to a favorite restaurant we have gone to for YEARS which is a family style all you can eat restaurant where they bring bowls of pasta, rolls, fries, chicken and salad with their signature dressing untill you are stuffed. We called ahead and asked how the foods were prepared and which items were safe for me to eat.. so my choices were to bring my own dressing and ask for dry salad, and also the fries and chicken are safe. No big deal I thought... but watching our large group (15 of us) enjoy ALL the items that I USED to also enjoy started to bring me down a bit.. and at the end of the meal the fact that my father-in-law kept INSISTING that we take the extra rolls home for my girls (who are 3 and 1 and a half) to eat really bothered me. I said no thank you - we are all set.. and when we were walking out he handed me a bag with the rolls in it that he had packaged up even after I had said no. I try not to make my family feel like they have to go without gluten just like I do, and I try to make it not such a big deal when we all eat together.. but I just found the gesture completely insensitive.

I have only been eating gluten free for a few months as I said before.. and my family has in some cases gone out of the way to get gluten free items or even cook completely gluten free for me (my mother even made me my own turkey at thanksgiving with gluten free stuffing) and I feel SO happy when they do these things for me. But more often it does not happen that way and I find myself feeling like the outcast, and I also don't want to bring up the fact that I can't eat certain things and make anyone feel bad for not making something that I could've eaten.. The worst is when someone offers me an item full of gluten (like a stuffed mushroom) and when I say "no thank you, I can't eat that" and my husband says "why would you even offer her that?" the response is "I was trying to be nice"... I know most people don't understand about gluten and what foods contain it... but how is that "being nice"??! I know I will need to just be patient and over time people will probably understand better.. I just needed to get this off my chest and hopefully someone out there can give me some motivation/inspiration to be happy my diet! I keep reminding myself of great I feel physically - but I am in need of some emotional support!

Thanks for listening to my rant!


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mushroom Proficient

Don't be so hard on yourself. You are still going through the grieving process for the things you have lost. Yes, it is a real grieving process. It takes a wile to work through all the stages of denial, anger, etc., until you come out the other side into acceptance. During grief it is harder to cope when others don't understand what you are going through and seem insensitive, thoughtless, even mean! (when they don't 'mean' to be - they are just not thinking of things in the same way you are.) It sounds like they are trying to be helpful and just need a little more training. So long as you are consistent in your refusals they will eventually get the message and life will be easier. But it usually takes longer than three months for everyone to get to this point. Try not to make a big deal out of it, no histrionics :D - just a simple no thank you and, if necessary, I can't eat that.

Stay strong, and here are some {{{{hugs}}}} to keep you going, because we do understand :)

gancan Apprentice
:D Thank you so much! This site is so helpful and it is great to be able to come here for info and support.. I spent so long being sick with no one who could really understand what I was going through and now I have a cure - while amazing - is also a (whole new) challenge!
LauraB0927 Apprentice

You're doing whats right for you body, which is the most important. I remember having so many conflicted feelings (I still have them!!!). On one hand, we get mad when people are insensitive and don't understand what its like to have this lifestyle, but on the other hand it feels weird and more isolating when people attempt to go out of their way for you which ends up making us feel like outcasts. For example, my future mother in law has been extremely supportive of me since my diagnosis last year which I am incredibly thankful for, but when we are at a party on my fiance's side of the family and she whips out a bad of homemade gluten-free cookies and yells out, "Dont worry Laura, I have some gluten-free cookies for you right here!" I want to run and hide in a corner - all I want to do is slip by unnoticed to avoid all the questions. Normally, I try to take the time to educate people, but sometimes I'd rather just blend in.

It DOES get better, and it DOES begin to feel more normal. People do catch on, but there will always be some time when you just want to reach out and choke somebody - I wonder, if the "twinkie defense" was able to work, can't a "gluten defense" work too?? :P

giggleburger Rookie

I think a lot of people just don't really realize how hard it is to be the only one who can't eat gluten (or anything). So even if they do something that seems blatantly insensitive, and even if they're trying to be supportive, they really just don't know how you're feeling.

notme Experienced

i fend for myself and nowadays i just make everybody aware of it. i had a lovely woman (my friend's friend) who was trying to cook a meal that everyone could eat (me) so she showed me every ingredient in the marinade - safe - steak (told them make sure to put tinfoil down on the grill surface for my steak) - safe - potatoes, olive oil, italian herbs - safe - broccoli - safe. i turned away for one moment and the next she has the veggies in a non-stick (contaminated) pan, the men have gotten hold of the steaks and put them (directly) onto the grill......... NOT SAFE! and, after all that effort it pained me to tell her i would just make myself a ham sammich..... but less painful than getting sick. my new motto is: if you love me, don't try to cook for me!! :)

gancan Apprentice

Thanks for everyones responses! I know most people have good intentions and my body feels so much better which I just need to keep reminding myself. I think the hardest part is feeling so different than everyone else around you.. everytime I even put my hand in a box of cheerios to give to my daughters I feel like I need to clean my hands! Hearing your stories most definitely helps me feel like i'm not alone :)


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mushroom Proficient

I know that different feeling (and I do try hard not to feel different). I am five years in, and two separate things happened to me yesterday. I ordered a cappuchino and a gluten free snack for myself at a coffee shop, then I sat outside and waited for them to bring them to me. The barista brought me my coffee and on the spoon was a small (very small :) ) cookie. I actually had it in my mouth, bitten in half, before I realized that the barista had not brought me my snack and didn't know what I had ordered and that therefore the little cookie was not gluten free (he just knew about the decaf coffee). Fortunately I had not begun to chew and was able to remove it from my mouth along with all the crumbs in a not-too-noticeable panicky fashion :D and suffered no consequences. I had to go back to the counter to remind them about bringing my food :rolleyes:

The second moment was at my book club meeting last night, the first of the year. We had three new members; one of them was very observant! She noticed that I just passed on the pizza bread plate which was circulated and that I did not partake of the small supper offered but instead produced something from my purse, and on the way out she asked if I had special dietary restrictions (for when she was hosting) and said that her household caters for all food restrictions, which I thought was especially sweet of her :wub:

cavernio Enthusiast

i fend for myself and nowadays i just make everybody aware of it. i had a lovely woman (my friend's friend) who was trying to cook a meal that everyone could eat (me) so she showed me every ingredient in the marinade - safe - steak (told them make sure to put tinfoil down on the grill surface for my steak) - safe - potatoes, olive oil, italian herbs - safe - broccoli - safe. i turned away for one moment and the next she has the veggies in a non-stick (contaminated) pan, the men have gotten hold of the steaks and put them (directly) onto the grill......... NOT SAFE! and, after all that effort it pained me to tell her i would just make myself a ham sammich..... but less painful than getting sick. my new motto is: if you love me, don't try to cook for me!! :)

Yep, it's the helpful people who mess up unintentionally that's terrible. I'd rather be offered food I can't eat most of the time and just say no than have to explain that what they did wasn't good enough. The worst is when someone takes a 'risk' with an ingredient that I wouldn't use myself but that's probably safe.

Like the book club and someone making you gluten free food, I wouldn't like that. Not one bit.

My mom made 'gluten free food' before we knew I was a celiac and would label it as such and bring it to potlucks etc trying to be nice, and let me tell you that cross contamination would have happened in that dish, guaranteed.

  • 2 weeks later...
Welda Johnson Newbie

Having struggled with these issues since the late 1970s, let me tell you, I have had to become numb to being called "weird," "eccentric," and who knows what else? But by rigidly sticking to my diet, I am no longer frequently in the hospital, as I used to be. No grains, milk & dairy, egg whites, yeast, maltodextrin, msg, casein, whey, and now no meats either. I am officially vegan because of food intolerances, but I am able to breathe, walk every day, work, and sleep well. Oh yes, digestion is often a dilemma, and a few other things, but I can live with those. You'll never know how many years it took me to become immune to what other people were saying and doing because of my food intolerances. Now, however, they don't even have to be concerned with what I am eating, because I've taken the complete responsibility for my well-being onto my own shoulders, and I always take my own food, my own containers, my own plastic-lined purse in case of spills, and my own cheerful attitude, knowing that I have chosen foods which will benefit my health, which are allowed on my regimen, and which are guaranteed to taste great and leave me better off than before I ate.

At Christmas, while the whole family was having prime rib and cheesy potatoes, I was eating chinese vegetables and a yam, which I had prepared at home and brought along. No problem! I still think of how good that prime rib looked and smelled, and how luscious those cheesy potatoes appeared, but my mind is now in tune with my body, and I enjoyed my dinner to the fullest. Oh, "...to the fullest!" Ha. That's for sure, because I was so full I wasn't even tempted to look longingly at the cheesecake they served for dessert, just took a glance and walked away.

The way to solve the problems we've discussed is to make sure they are not a problem at all. You have the power to do just that! Make the best, most mouth-watering foods you can imagine, and, soon, those issues will seem to have just dissolved. I'll be waiting to hear how you're doing.

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    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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