Fustrated

[robertwilburn35]

I am so fustrated. I am still a bit new to the gluten free diet, and still learning what has gluten or casin or soy or possibly contaminated oats or whey. Fillers, "natural flavors" which are not, blah blah blah. Today I walked into the store for dinner and spent 45 min looking for something I wanted and was allowed to have. I am seriously afraid to get gluted because along with a boatload of other symptoms we all seem to share on some level, I also get heart palpitations and if its serious I get short of breath. I have looked at the recipies and all but get overwhelmed and pissy just thinking about looking for all the incredients and leaving the store with a bank account left. I guess I am just venting but it gets old. I am afraid to go out with the family to eat or potlucks at the church for not knowing what they put in their food. I could eat only what I bring but what fun is that. I just feel trapped with the same old food and the same old fustration picking it out. ahhhhhhhhhhhhhhhhhhhhh

[squirmingitch]

Robert, you will need to remind us what foods you can not have besides gluten of course.

And it's totally allowed to vent here! We get it. We've all been there.

It's hard in the beginning. You're unsure about everything food wise that you see. I know it's frustrating. It's confusing. And sometimes you feel like it's just plain unfair & it stinks!!!!!!!

I still stick a stack of papers in my purse every time I go grocery shopping. It's a THICK stack. My lists. Lists I have printed out of safe ingredients & unsafe ingredients. Lists of gluten-free foods from diff. manufacturers sites. But these days I find I seldom have to refer to those lists. It gets better I promise you!

As to needing to take your own food to potlucks at the church, well, I'm sorry but that's what we must do. You can go out with the family to eat. It helps to eat something before you go & then just order a baked potato, not sliced open (do that yourself) & a salad. Someone was giving a tips today on eating out :

https://www.celiac.com/forums/topic/93779-when-they-make-a-mistake/page__p__801729__fromsearch__1#entry801729

some pretty nifty tricks there eh?

[Marilyn R]

Hi Robert, and welcome to the club!

I

[dani nero]

I share your frustration too. I take my own food with me even when I visit friends. It's completely stinky since I'm the type of person who loves sharing food and trying other people's cooking, but I just don't want to bother them with all the demands my diet requires and I don't want to blame anything on them in case I do get sick.

Think about the alternative of all this however. Is this so bad compared to suffering from pain, fatigue, fog, D or C, and your other unpleasant symptoms. I used to walk through the bread isl looking at all the bread and pastries missing them, but now.. I am so pissed at wheat for making me feel bad that I don't want to even look at it anymore. Eventually taking our own food with us will also become something that is second nature to us and our friends/ family.

It'll be ok eventually, and it'll be easier. You'll start knowing your way around your foods not far from now and you won't even feel how you've changed until the next person posts a message complaining about how hard it is to find food :-)

[bartfull]

I remember several times having a meltdown in the grocery store. But after a while I got to the point where I knew which things I could buy without worrying, and now I go in without even a list. I WILL remind you and myself and everyone else, that it's a good idea to read the ingredients EACH TIME, because companies change ingredients frequently and you never know when something that was safe last week might now contain gluten. But generally speaking, it has become second nature now, and it will for you too. Allow yourself to feel all of the emotions, let yourself cry or get angry. And pretty soon it just won't bother you anymore.

It gets better. It truly does.

[mamaw]

It all takes time & understanding learning all about being gluten-free for life. in a way it sounds to me like you may be feeling food deprived besides the normal feeling angry & mad because of celiac...again this is a normal feeling --- feeling deprived......

I think after ten years I still at times get this feeling. As you & everyone else I want to go along with the mainstream but I know I will NEVER be able to do that ever again in this life ...Also I know I'm so much better off than regular wheat eaters as far as health goes..I do miss the convience of stopping & running in for a quick bite..

But we all manage to get through it because deep in our minds we know & understand what could happen if we stray ......

With all that being said I suggest you think of all the things you want to eat or miss & we can tell you where to buy it or make it ..that way you will not feel like you are missing out so much.. It's will never be the olden days but it does help to live in a celiac world...

I would think I won the lottery if someone just once cooked for me...or surprised me with safe food...

I always carry gluten-free foods & snacks in my car , purse,pocket... when I know I'm going out to eat I take a bun, breadsticks, english muffin to match where I'm dining so I too can have bread...the other day hubby wanted to have lunch at Wendy's so I know he always gets a wrap so I made my wrap & took it with me& joined him for lunch. We had a coffee, & a frosty together...simple& a nice lunch....together(most important)

I always have a wide variety of gluten-free foods so I don't get to feeling blah about food...

hth

[love2travel]

You're right - it downright sucks at times. Especially at the beginning. It took me several months before I could walk past the bakery section without feeling sorry for myself. Now I truly do not notice it. It honestly can get to that point for you as well. Initially I panicked and bought a whole bunch of gluten-free snacks that in retrospect were unnecessary. But at the time they were!!

Fifteen months later, I realize my shopping list is about 75% the same as it was before my diagnosis. Or even more than 75% because I buy naturally gluten free things, anyway, such as meat of all kinds, fish, chicken, seafood, tons of fresh vegetables (and I grow my own) and fruit. My pantry has many inexpensive things such as dried lentils, chickpeas, all sorts of dried beans and rices. The only things that do change are gluten-free soy sauce, Worcestershire sauce - that type of thing. Thankfully I love cooking so am very creative with ingredients. I make my own bread but have found my new favourite brand - Kinnickinnik which has a new soft bread that you do not have to toast! The slices are as large as regular bread and it costs $4.99. One person said he can get it for $3.99!

Do not feel bad for grieving what you miss. We all go through that. It is perfectly natural. Just think that in a few short little months you may find yourself growing excited about food and eating. When friends ask me out to eat I cook them dinner at my house instead (my house is gluten free - my husband can have his gluten pizza when he wants at work). Dinner or lunch does not need to be elaborate to be enjoyed. Enjoy your friends/family even more.

Where I live there are ZERO places for me to eat out. I have accepted that. If invited to a potluck I take my own fabulous dishes that are naturally gluten free.

For me it was a change in attitude. I like the expression, "Change what you can; for those things you cannot change, change your perspctive". This journey has really been a great thing for me - it has taught me so much about how I see myself and others. My attitude towards life in general has also changed. For example, I have desperate chronic back pain. I used to ask, "What if such and such happens today?" (fear avoidance) to "I want to do all that I can to enjoy this day".

Distraction helps. Do something you enjoy.

[robertwilburn35]

Thank you for the support. I am really "afraid" to try too many new things because as I went to a Paleo diet at first, as strictly as possible, to avoid "mistakes." As I have added things to my diet the mistakes come and I HATE the s&s of it. I am still not sure of which type of gluten is the biggest reactor. I just know when I am having a "little" reaction vs. a "big" one. The last big one I was Short of Breath and my heart rate would go really fast then really slow. Maybe, I have an allergy or intollerance to multiple things, but if I stay away from gluten then no reaction. So I am very cautious of trying new food.

As for potlucks and friends I feel like I hurt their feelings bringing in my own food to their house. So I either eat before I go and pick over what I think is safe, or just deny the invitation.

I try to keep myself in shape and I realize the gluten free diet has helped me in several ways on that goal but I doesn't help the feeling of separation you feel. The family has come on board with me and have been supportive. So, remember, when you see a muscle head, he is not always as confident as he appears. Like an elephant afraid of a mouse, is me afraid of certain food.

[mamaw]

Just a few more thoughts. Are you a dx'd celiac? Have you had routine bloodwork done ? Vit B-12 & Vit D checked? Thyroid screening? all of it TSH, T-3 T-4 Free T3, FreeT4, RT-3. Total T-3, calicum, Glucose, sodium.... Stress test, echo????

Just a few things I suggest you have completed if you haven't already...

[robertwilburn35]

I have had all those tests. Stress, echo, right and left heart cath, chest and abdominal ct, egd, colonoscopy, cmp, cbc, tsh and ciliac panel and everyone has been negative. So stopped taking all of their drugs and started the diet and that seems to be what worked so far. Its only when I add gluten that the symptoms occur. I think its a "sensitivity" more than ciliac but thats just my thought. Please if you have a suggestin on another test I would be happy to get that done as well.

[robertwilburn35]

I think that some of my chemistry panels were on the low side but never technically low. Same with h&h was borderline on the low. and as I think back it has always been that way when I have had physicals. When the docs see "normal" even when they are borderline they blow it off. Now however I collected my tests and the pattern has always been there and the s&s of my intolerence has as well, but never put it together til my big reaction.

[squirmingitch]

Robert, you made a comment above:

"I am still not sure of which type of gluten is the biggest reactor"

Would you clarify what you mean by that? Do you mean wheat gluten or rye gluten or barley gluten? Or are you talking about some other kind of gluten?

As to your comment:

"As for potlucks and friends I feel like I hurt their feelings bringing in my own food to their house. So I either eat before I go and pick over what I think is safe, or just deny the invitation."

Have you tried to explain to these people what a gluten intolerance is & does to you? To tell them that it's nothing personal against them or their cooking but you have to ensure you are safe when eating? That you would love to enjoy their company if they wouldn't take offense if you bring your own food & ate with them? This is nothing to be ashamed of. It's nothing to hide under the blanket. If they are intelligent, understanding people & truly friends then they will welcome you with open arms & say, "SURE! Bring your own food --- but COME!"

I sense you are a very sensitive person & I'm not speaking of your physical sensitivities. Maybe you're even a little shy? Generally, your type of person tends to attract likewise good hearted people around you. Give them a chance. Open up to them & let them know. If you don't then you risk hurting them b/c they don't know why you keep turning down invitations & they will think it's something they did. And I know you don't want them to feel that way. Think about it.

[robertwilburn35]

what I mean by which type of gluten is that I really dont know what reacts the harshest with my system(not that I am trying different types on purpose). For example I had a chicken and shrimp dish with a burbon sauce and my sypmtoms were present but very mild. I was making a tomato basil soup and didn't have my normal base I use and used one from cambels without thinking and I didn't even eat a serving. I only sampled less than a laddle ( the cook has that right at my house) and in less than 30 minutes I blew up like a baloon. bloated stomach and face, extremely uncomfortable. within an hour I had heart palpitations and short of breath. So, I really don't know the difference?

[squirmingitch]

Have you had any allergy testing? Food allergy testing?

And did you ever post your celiac panel test results on here? Most docs don't know what the FULL celiac panel consists of.

Who made the bourbon sauce? What are the ingredients? Which Campbell's soup did you use? You have to learn to read EVERY label.

[GFinDC]

what I mean by which type of gluten is that I really dont know what reacts the harshest with my system(not that I am trying different types on purpose). For example I had a chicken and shrimp dish with a burbon sauce and my sypmtoms were present but very mild. I was making a tomato basil soup and didn't have my normal base I use and used one from cambels without thinking and I didn't even eat a serving. I only sampled less than a laddle ( the cook has that right at my house) and in less than 30 minutes I blew up like a baloon. bloated stomach and face, extremely uncomfortable. within an hour I had heart palpitations and short of breath. So, I really don't know the difference?

HI Robert,

You could also be reacting to other foods. Nightshades cause reactions in some of us (tomatoes, potatoes, peppers, eggplant), some have problems with corn or eggs, or rice, etc. We can become sensitive to many different foods. Those other sensitivities may go away after a period of time on the gluten-free diet. Sometimes they don't though.

If you do a search on the top 8 allergens that is a good list of foods to consider avoiding for a while as a test. Food intolerances and food allergies are different things, but there is no reason a person can't have both. Food allergies are an IgE immune cell reaction, while food intolerances are IgA or IgG reactions. At least that's my rather uneducated understanding of it. Some of the more medically aware people on the board could probably explain it better.

The typical testing for food allergies is a skin scratch test or a blood test. There aren't many food intolerances tests available though. So an elimination diet is a good way to identify them.

[mamaw]

Hi

You said you have had all the tests done I mentioned but you only mentioned the TSH for ;thyroid -- that is not enough you need all the other ones I mentioned. Plus I agree you could be haviing allergies to other foods or a combo reaction when you pair two foods at one time... Vit C, can cause reactions for many , something simple as that can cause havoc..nightshades also so simple but again havoc for many....

Also I believe in vit& mins as we always don't get what we need from our food but some people either take to much or the wrong one for their bodies ...

The only other thing I can think of is going on a very strict elimination diet for a few moths ie; no grains at all, no nightshades ....no sugar,

[robertwilburn35]

I didn't post the results cuz the dr didn't do them. Wednesday I was at the office and asked for blood work and am on for a bmp, cbc, lipid panel, folic acid, hemo A1C, psa, total tsh, vit d. I took the liberty to check off t3 free and t4 free b12 and Iron before taking the paper to the lab for testing. I may get scolded or charged for those but by that time I will have had the test done. better to ask to be forgiven. I will ask for copies and post when I get them.

[mamaw]

it works best to have all the thyroid stuff done at the same time..And by chance if you are on thyroid meds you should not dose before your blood work..

[robertwilburn35]

thanks for your help and advice. I will update and I keep looking it up on the net. I look forward to your help when I get them.

[robertwilburn35]

one time I pretended to not feel well so I could leave since I didn't feel safe eating there. at first I felt bad but then not so much til about a week later they approached me about some pics I posted on facebook on the day I left their house early. Honesty, from then on.