I Feel So Foolish

[sandsurfgirl]

I ventured out to Vons for the first time since my diagnosis a week and a half ago. I did pretty well but was overwhelmed. Forgot my list of bad ingredients and was unsure about a lot of things. In retrospect I should have just hit the meat and produce sections but I had to be curious to see what was out there. I needed rice milk so I had to go to Sprouts.

Sprouts was really crowded and I got a bit overwhelmed there too with the rice milks. I remembere something about one of them might have gluten but not which one it was. I had gotten a few thing into my cart and the lines were really long.

I finally posted about this on Facebook. My beautiful sister meant so well when she posted "This is a blessing. You will be symptom free soon." I checked it on my blackberry in line and it just sent me over the edge for some reason. I started panicking and thought I would pass out. I had to leave my cart to the side and run to my care to get a paper bag.

I broke down crying hysterically. I just can't see this as a blessing. I'm in curse stage and I'm not sure I'll ever see it as anything but a curse. She meant well, but I'm so tired of people not letting me express my feelings and trying to convince me that this is no big deal. That it's a blessing. That it's just like a food allergy. It is NOT. With a good allergy, you can outgrow it. You can often tolerate some of the food you are allergic to and you can get allergy shots. Food allergies don't cause long term damage unless you have anphylaxis but not all food allergies cause that.

My husband is off work this week and I am so glad I had him to come home to. I feel like an idiot fot having to leave the store to freak out. I'm such a strong person normally. I'm always the one people come to for strength. But this one is a lot for me to handle. I'm just not strong right now and I don't know when I will be.

I'm sorry I keep blathering on here and posting about this here too. I don't want to wear out my welcome with my complaining. But you guys get it. You understand and I feel like this is the one place where people really do understand. I know I will come out strong eventually but I'm not sure when and I'm not sure how.

[Jestgar]

Yep, this is the place to blather. Pretty much everyone goes through some degree of this. I've been doing it for three years or so and still sometimes have to yell "I F***ing HATE this!!" (like, this last weekend :ph34r: )

But it does get better.

[sandsurfgirl]

Yep, this is the place to blather. Pretty much everyone goes through some degree of this. I've been doing it for three years or so and still sometimes have to yell "I F***ing HATE this!!" (like, this last weekend :ph34r: )

But it does get better.

Thank you!! I need to know I'm not the only one. I followed a video link from a thread yesterday with a woman who said you go through the stages of grief like when someone dies. It feels like that. I'm a nutcase all over the place.

I was driving home screaming "It's not a blessing it's a F-in curse!" It felt so good to yell in the car and get it out. I generally don't even curse, but right now it's just the most appropriate word. LOL

[Wolicki]

Thank you!! I need to know I'm not the only one. I followed a video link from a thread yesterday with a woman who said you go through the stages of grief like when someone dies. It feels like that. I'm a nutcase all over the place.

I was driving home screaming "It's not a blessing it's a F-in curse!" It felt so good to yell in the car and get it out. I generally don't even curse, but right now it's just the most appropriate word. LOL

Vent away. We've all been there and done that. It does get easier! I haven't had a meltdown in like 3 weeks

[jenngolightly]

What helped me most in the beginning is... we have quite a few stores that I could shop from (whole foods, sprouts, vitamin cottage), but I picked just one in the beginning. I went there when it was least busy and learned the layout. Where's the gluten-free stuff? Learn a route so you can quickly get through the isles and don't have to search through the "vegan" "organic" and other special-diet food just to find the "gluten-free" variety. I still use that tip when I'm in a rush to get food and get home. I've got that route embedded in my brain so I can zip through the store and get some essentials or just a few ingredients for a quick dinner.

The other day my husband and I went to a regular grocery store near our house. I wasn't familiar with the layout and I started to panic. We wanted to make gluten-free pizza, but I didn't know where the ingredients were and the store bombarded me with gluten. I was starting to have an anxiety attack, so he sent me to the car. :-) I guess I better go there and learn the layout for the next time we go shopping.

[Welda Johnson]

I feel for you. That anxiety feels like it's going to get the best of you sometimes. I have a theory that the gluten is what causes the anxiety, because, thank God, I seldom have anxiety attacks now, and I used to have them frequently. My ulcers are also gone. I know it's hard to take this in when you're in the midst of recovery, but whoever posted that you are in the midst of the "grief process," I think was right on.

Sometimes, I just take a couple of hours and go to Jimbo's to read labels and see what is new. I can remember standing in the aisle of a foodstore once, with tears just running down my face. Everything seemed so overwhelming. When you schedule the time, you know you can leave whenever you want, and whatever you find is an added bonus. Fortunately, there are lots of new products coming out now, as compared with when I first started a healthy diet (I'm 65 and have had symptoms since age 8, but, of course, no doctors or specialists ever mentioned Celiac--I took all those food allergy shots and nothing worked, so finally, years later, I started eliminating foods, and, eventually, a nurse mentioned Celiac when she saw my list of food allergies--that was like a new beginning for me).

I've been on this diet strictly for about 8 years, and it does get easier. Our eyes & senses become sharper about watching for any ingredient that might be harmful, and we become more aware of what our bodies are telling us. No grains, milk or dairy, egg whites, yeast, casein, whey, msg, etc. for me! I'm the one responsible for staying well and keeping my body in good enough shape to be here, and to help care for others, so now I have a new purpose in life. Creating new recipes becomes important, because each day someone else learns they have Celiac. We are the pioneers. I wish you many blessings as you travel your new road. Let me know if I can help in any way. Welda@att.net

[jerseyangel]

Oh honey, no need to feel foolish. Like everyone has said, this sort of thing happens to so many of us. I can remember having my eyes fill with tears and feeling the panic set in on several occasions--sometimes you just get so frustrated, tired, confused, afraid and sad that something has to give.

We all understand--and it really does get easier. After a while, it becomes almost second nature and you will find that you are able to take things more in stride.

In the meantime, don't hesitate to come here for support or just to vent a little.

[momtopa]

I ventured out to Vons for the first time since my diagnosis a week and a half ago. I did pretty well but was overwhelmed. Forgot my list of bad ingredients and was unsure about a lot of things. In retrospect I should have just hit the meat and produce sections but I had to be curious to see what was out there. I needed rice milk so I had to go to Sprouts.

Sprouts was really crowded and I got a bit overwhelmed there too with the rice milks. I remembere something about one of them might have gluten but not which one it was. I had gotten a few thing into my cart and the lines were really long.

I finally posted about this on Facebook. My beautiful sister meant so well when she posted "This is a blessing. You will be symptom free soon." I checked it on my blackberry in line and it just sent me over the edge for some reason. I started panicking and thought I would pass out. I had to leave my cart to the side and run to my care to get a paper bag.

I broke down crying hysterically. I just can't see this as a blessing. I'm in curse stage and I'm not sure I'll ever see it as anything but a curse. She meant well, but I'm so tired of people not letting me express my feelings and trying to convince me that this is no big deal. That it's a blessing. That it's just like a food allergy. It is NOT. With a good allergy, you can outgrow it. You can often tolerate some of the food you are allergic to and you can get allergy shots. Food allergies don't cause long term damage unless you have anphylaxis but not all food allergies cause that.

My husband is off work this week and I am so glad I had him to come home to. I feel like an idiot fot having to leave the store to freak out. I'm such a strong person normally. I'm always the one people come to for strength. But this one is a lot for me to handle. I'm just not strong right now and I don't know when I will be.

I'm sorry I keep blathering on here and posting about this here too. I don't want to wear out my welcome with my complaining. But you guys get it. You understand and I feel like this is the one place where people really do understand. I know I will come out strong eventually but I'm not sure when and I'm not sure how.

Yep, I get it! It's only been a few months for me. When I tried to explain this to some very close friends, they say exactly that "oh, it's just like being a diabetic!" I just wanted to scream! It is absolutely NOTHING like being a diabetic. I tried explaining, and now one of those friends and I just don't talk much. The others tell me that they think of me when they see "gluten-free". lol It's nice to be thought of so much, I guess. ;-)

So many people try to understand genuinely and joke around with me about it and I can get that. But I absolutely CAN'T get that this is like being a diabetic or having high cholesterol. UGH! These people!

I pray that you have some good people in your life who really do try to "get" our situation. Those are the ones who are worth the time. I know it's hard to see and it took me a while too, but I AM thankful that this disease IS one that I can control, as opposed to cancer or something else life shortening like that. It IS hard and we do have to deal with it every day, and it's not at all easy.

I hate say that I have my husband stop after work for groceries most of the time because it's so overwhelming and frustrating for me. I never liked grocery shopping in the first place :-( and, to boot, I am not the cook in the house when my dear husband is home...

I hope things get better for you and I'm not sure, but I suspect your sister might have meant well by saying that's a blessing meaning that you finally have an answer to your problem?

Oh, and I have to say that I don't eat a lot of specialty gluten free foods all the time...I like to cook things that would be naturally gluten free and avoid breads when i can and dare i say it, I haven't found a good gluten-free pizza out there yet :-(

Good luck to you and feel free to vent. I think that's what this place is for...to find some solace in a world of chaos.

[sandsurfgirl]

My poor sister. We are sure she has it too. She's working on getting tested now. I think that she is probably dreading her own diagnosis and wants to think of it as a blessing. I didn't tell her any of this because it would hurt her feelings. It would explain fibromyalgia and congestive heart failure that she got in her early 30's. She will have her own grieving process and her own times of screaming in the car soon too I fear. She has had wheat intolerance for years but we all know that it's not just the obvious wheat that gets you.

I have explained to a few people the dangers of cross contamination and the way that you can have all sorts of other health problems from it. They were shocked because they had no idea.

I LOVE the advice to just get to know one store at a time. I have Sprouts up the street and I think I will just get to know them first. I want some different flours and maybe I will order them online. Sprouts only seems to have bulk and I do not trust that. Too scary!

This forum has been a lifeline for me. Seriously.

[Wolicki]

It's gonna be ok. I should have mentioned the time I burst into tears at The Island Hotel in NPB at a luncheon because after everyone was finished with their meal I was served 2 spears of asparagus, 2 baby carrots, and a couple sprigs each of cauliflower and broccoli (which I am intolerant of). Everyone has their breaking point, and it's ok. You pick yourself up, dust yourself off and start over again. Wishing you lots of easy shopping trips!

[jackay]

I'm not having anxiety attacks but am just plain frustrated. Besides gluten, there are so many more foods I'm suppose to avoid due to food intolerance blood tests. There just isn't a lot left for me to eat and what I do eat, I am suppose to rotate every four days. Today I ate rice and preservative free bacon, which has some sugar in it. I am not suppose to eat rice or any type of sweetener. There are a lot of fruits and vegetables I'm supppose to avoid but supposably most meats (not beef) are O.K. I don't know if I trust the test results. According to them, I can now have dairy. Tomorrow I'm going to try that and I'll see what happens.

There are not many gluten free foods available in my area, except for meat, veggies and fruit. I was shocked to find quinoa but who knows if there will be any available next time I shop. The expense of this diet is really a financial burden. I haven't worked for four years because of my health problems. My husband lost his job this past summer because of the economy. Yup, money is tight. Right now he is collecting unemployment, but that will come to an end. He figures his age (60) is a hindrance in finding a new job.

I am frustrated, frustrated, frustrated:(

If I saw more changes in my health, I'm sure it would all be worth it.

[Wolicki]

I'm not having anxiety attacks but am just plain frustrated. Besides gluten, there are so many more foods I'm suppose to avoid due to food intolerance blood tests. There just isn't a lot left for me to eat and what I do eat, I am suppose to rotate every four days. Today I ate rice and preservative free bacon, which has some sugar in it. I am not suppose to eat rice or any type of sweetener. There are a lot of fruits and vegetables I'm supppose to avoid but supposably most meats (not beef) are O.K. I don't know if I trust the test results. According to them, I can now have dairy. Tomorrow I'm going to try that and I'll see what happens.

There are not many gluten free foods available in my area, except for meat, veggies and fruit. I was shocked to find quinoa but who knows if there will be any available next time I shop. The expense of this diet is really a financial burden. I haven't worked for four years because of my health problems. My husband lost his job this past summer because of the economy. Yup, money is tight. Right now he is collecting unemployment, but that will come to an end. He figures his age (60) is a hindrance in finding a new job.

I am frustrated, frustrated, frustrated:(

If I saw more changes in my health, I'm sure it would all be worth it.

Sorry to thread jack, but jackay, what type of testing did you do? Through your doctor, an online lab? I am looking for an accurate intolerance test. Thanks

[PatrickNew47]

I can relate so much to the frustration you're going through. I started out a few months ago having a seizure and fracturing bones all over the place. I found out only recently that my healthcare provider has determined that gluten has been the cluprit (not of the seizure but the osteoporosis and vitamin deficiency issues that led to the illness). I had a long history building up to where I am today with this particular "disease" "allergy" (depending on who you are talking to). Not only do I have to relearn eating, cooking, blah blah, but I also have to live with physical limitations too. There are very few that you can talk to about it because like you said, most people just call it a "food allergy" and advise to "get over it". Well wouldn't that be nice if you could but there is no "getting over it" from what I have read. It's nice to have a forum to vent your feelings though with others who are more experienced or who are wandering down this road for the first time.

[sandsurfgirl]

I can relate so much to the frustration you're going through. I started out a few months ago having a seizure and fracturing bones all over the place. I found out only recently that my healthcare provider has determined that gluten has been the cluprit (not of the seizure but the osteoporosis and vitamin deficiency issues that led to the illness). I had a long history building up to where I am today with this particular "disease" "allergy" (depending on who you are talking to). Not only do I have to relearn eating, cooking, blah blah, but I also have to live with physical limitations too. There are very few that you can talk to about it because like you said, most people just call it a "food allergy" and advise to "get over it". Well wouldn't that be nice if you could but there is no "getting over it" from what I have read. It's nice to have a forum to vent your feelings though with others who are more experienced or who are wandering down this road for the first time.

That's terrible. I'm so sorry you had a seizure. I haven't had a bone density screening yet. I also have hypothyroidism and that can cause bone loss too so I'm not looking forward to that test.

Kids who get diagnosed are so blessed that they can head off all this damage early.

[PatrickNew47]

That's terrible. I'm so sorry you had a seizure. I haven't had a bone density screening yet. I also have hypothyroidism and that can cause bone loss too so I'm not looking forward to that test.

Kids who get diagnosed are so blessed that they can head off all this damage early.

I can totally agree with your response too. Kids who can have this identified early have a much better chance of preventing some of the long term complications many of us are now dealing with. Going through my health history from infancy, teenager, young adult and so on there were many clues along the way. Healthcare providers are becoming much more in tune with Celiac/Sprue in the United States so that shows tremendous progress. I am glad that I am not the only one though going through the frustrations and "anxiety" of this major change. You literally have to learn how to cook all over again and there is no end to learning what ingredients you can eat or not!

[ciavyn]

Don't feel bad at all - we've all been there! I spent the last week at a residency for grad school, at a school that worked very hard to have things available to me that were gluten free...but that meant a lot of rice, meat, and vegetables. It got tiresome day after day, and people kept making comments about how hard it must be. I felt like smacking them. It's not that hard if you stop commenting on it!! Grrrr...

I guess I might have dug into this a bit differently than some. I cook everything, use natural foods, and avoid the gluten-free zone altogether most shopping trips. I shop a lot in produce, the meat section, and the organic area. I don't feel deprived most of the time, because I shop in areas where everyone shops, and I look up very EASY recipes that my family can enjoy. I don't know if that helps, but here is the other caveat that made this a bit easier on me: I had decided my New Years "resolution" of sorts would be that I would eat healthier. I was determined to stop eating so much junk food: subs, pizza, dessert, etc. Figuring out that gluten makes me sick jumpstarted that plan. And let's face it, it can be a lot healthier to eat this way.

The struggle is that you *can't* have other foods...not just that you won't. But that will get better, and you are allowed to be human and breakdown like the rest of us!

Hang in there! And check around here for some great recipes to try. I try to do a new one every week (I work full-time and I'm grad student with two kids, a husband, and three dogs - it can be done, I swear!), or make a new dessert item for my family. It makes it more of an adventure, instead of a chore. And I try something new at the store each time I'm there, something I wouldn't normally buy, and I'm finding more and more fruits, vegetables, and health food items that I really like, that I never would have tired otherwise.

[mcoffey21]

Hi Sandsurfgirl,

[*]First, I want to tell you that I am so sorry that you had what probably was a panic attack at the market. My first attack was at the market too, and I did the same thing. I ran out of the store and got hysterical. That is the worst feeling, and I would not wish that on my worst enemy. Just remember when you feel that way, breathing is key.. Slow, deep breathes in thru your mouth and out thru your nose... It works well. Oh, and count while you breathe. Takes you mind off the emotions.. Next, I want you to know that it is NOT just a food allergy, but unfortunately, people who aren't directly affected by it just don't get it. I do not have celiac disease, but my daughter does, and I understand how debilitating this can be. It can affect your mood, your social life, and on and on. BUT... It will get easier! You will learn what you can eat, and soon enough, you won't need your list. I promise! I have walked thru this with my daughter (who is 14) for the last couple of years, and we have both come a long way. Hang in there, and seek advice and comfort from sites like this one. There are so many resources out there. A few tips that I hope will help you: The large grocery stores (Ralphs/Alberstons) now carry rice milk, we prefer almond milk. It is usually not in the regular milk section, but on a shelf somewhere (ask a manager to help you), glutenfreeda.com is an awesome place for recipes/ food sources, ENER G has great pizza crust that you can freeze ( you can find their website by googling ENER G), many restaurants have gluten-free menus now. Call some of your local favorites or google them. The large book stores have gluten-free cook books in their cookbook section. Probiotics have helped my daughter with some of the stomach discomfort too. Geez, the list goes on and on, but this is a start. I wish you all the best on this unfortunate journey. Hang in there!!!

[sandsurfgirl]

Hi Sandsurfgirl,

[*]First, I want to tell you that I am so sorry that you had what probably was a panic attack at the market. My first attack was at the market too, and I did the same thing. I ran out of the store and got hysterical. That is the worst feeling, and I would not wish that on my worst enemy. Just remember when you feel that way, breathing is key.. Slow, deep breathes in thru your mouth and out thru your nose... It works well. Oh, and count while you breathe. Takes you mind off the emotions.. Next, I want you to know that it is NOT just a food allergy, but unfortunately, people who aren't directly affected by it just don't get it. I do not have celiac disease, but my daughter does, and I understand how debilitating this can be. It can affect your mood, your social life, and on and on. BUT... It will get easier! You will learn what you can eat, and soon enough, you won't need your list. I promise! I have walked thru this with my daughter (who is 14) for the last couple of years, and we have both come a long way. Hang in there, and seek advice and comfort from sites like this one. There are so many resources out there. A few tips that I hope will help you: The large grocery stores (Ralphs/Alberstons) now carry rice milk, we prefer almond milk. It is usually not in the regular milk section, but on a shelf somewhere (ask a manager to help you), glutenfreeda.com is an awesome place for recipes/ food sources, ENER G has great pizza crust that you can freeze ( you can find their website by googling ENER G), many restaurants have gluten-free menus now. Call some of your local favorites or google them. The large book stores have gluten-free cook books in their cookbook section. Probiotics have helped my daughter with some of the stomach discomfort too. Geez, the list goes on and on, but this is a start. I wish you all the best on this unfortunate journey. Hang in there!!!

Thanks so much for all the info. I never knew about breathing out through the nose when I'm having anxiety. I always try to breathe in and out of my mouth and then I start to hyperventilate which isn't good.

I went back to Sprouts today to force myself not to be scared of the grocery store.

I am usually such an on the go person. I'm in all sorts of groups and activities with my kids.