Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

About To Have A Panic Attack


terriH

Recommended Posts

terriH Newbie

I was just diagnosed with celiac disease last month - still not completely convinced i have it. (My biopsy was normal and only my Iga was elevated; but I've had diarrhea for a little over a year) Please forgive me if I make this too long, but I've been reading posts here and decided I need your support. I wasn't going to start this diet until after the holidays, but I've been feeling really awful this past week (bone pain, and now a "buzzing" in my leg muscles), so I thought I would try the diet now and see if I feel a difference. Has anyone had that kind of symptom? I'm worried it's something else and my doc missed it.

Anyway, I don't know how you all can live like this - I might sound like a real wimp, but this is SO hard. I cook for 7 people in my family and I don't know if I can do this. Today I am so hungry - whatever I eat I don't feel satisfied. I've been trying to snack on nuts and popcorn, fruit. I can't even think about supper tonight or the next night. Help!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest nini

Take a deep breath and relax... YOU CAN DO THIS... it may seem difficult, but after you get used to it, it's actually pretty easy most of the time.

When cooking for your family stick with foods that are naturally gluten free, meats, vegetables, fruits, nuts, cheeses... Don't go out and spend a lot on substitute gluten free products. You only need a few standby items (like pasta and sandwich bread) and we can help you find the best ones. After a while you can get adventurous and try one or two new gluten free things here or there (like cookies or bagels or pretzels)

First rule is DON'T PANIC

RiceGuy Collaborator
...I've been feeling really awful this past week (bone pain, and now a "buzzing" in my leg muscles), so I thought I would try the diet now and see if I feel a difference. Has anyone had that kind of symptom?

Yes, absolutely!!

For me the "buzzing" as you call it got so bad, I couldn't walk. I thought of it as a kind of spazm - the muscles would suddenly tense up and it would feel like I was being electricuted at the same time. At its worst, even the slightest move could set it off. This lasted nearly a month in total, though not all the same intensity.

This is actually AFTER I had been gluten-free for a few months too! I could tell I was on a downward slide, but didn't know what else to try. Thankfully, it seems like I have begun to rebound. I know I have a lot of intestinal damage to deal with yet, so it's gonna take time.

My two cents: If you have not yet done so, go completely gluten-free asap. That includes hair and skin care products. I can tell you it has made a world of difference for me, and many others will echo the same sentiment. It's only hard until you start seeing results. Then you look forward to your new-found health, and all the new foods and flavors you never thought about before.

Rusla Enthusiast

It really isn't that difficult. I have no problem sticking to the the diet. My added bonus is I have lost my insane attraction to sweet things. Remember stir frys are your friend. Gravy's made with cornstarch are just as good and gluten free pizza's and pies are good too. There are tons of great recipes that lots of us have posted, take advantage of them.

You can still have pasta and lasagne, you just use rice pasta and once you get the hang of cooking it, it's a breeze. You can make some gluten free cookies that no one will know are gluten free. I have had some bread that is excellent too.

So have no fear, we are here.

tarnalberry Community Regular
Anyway, I don't know how you all can live like this - I might sound like a real wimp, but this is SO hard. I cook for 7 people in my family and I don't know if I can do this. Today I am so hungry - whatever I eat I don't feel satisfied. I've been trying to snack on nuts and popcorn, fruit. I can't even think about supper tonight or the next night. Help!

It doesn't have to be that hard, but it depends on how you cook, how much you're willing to cook from scratch, and how much you're willing to adjust what other people are eating. Eating gluten-free is actually fairly easy if you cook from scratch and are willing to venture out into different types of food - if you rely heavily on bread/pasta/wheat.

Satiety is not dependent on gluten - but it is dependent on getting enough calories, and enough fat, protein, and complex carbohydrates. Popcorn and fruit won't satisfy you as much as combining that with something else. And don't underestimate your need for more food at the moment, until you heal and absorb the nutrients you eat.

As for what to cook for seven people... Here are a few items that are naturally gluten-free (assuming you use gluten-free spices/broth - almost all are, but it's a caveat, of course), easy to make for 7, and tasty:

* beef stew (beef, carrots, onions, potatoes, broth, sage, cumin, salt)

* chicken soup (chicken, rice, carrots, onions, green beans, bell pepper, italian spices, broth)

* chili (ground turkey (or beef or chicken or whatever), beans, canned tomatoes, tomato paste, chili powder, cayanne pepper, cumin, salt)

* tacos (ground meat, onion, taco seasoning (that's the trickiest one, I use fajita seasoning from Spice Hunter), lettuce, tomato, cheese, corn tortillas, avocado, salsa, etc.)

* baked chicken (chicken, spices, carrots, potatoes)

* roasted vegetables (zucchini, bell peppers, onions, carrots, balsamic vinegar, italian spices, olive oil)

* roasted rosemary potoatoes (waxy potatoes, olive oil, salt, rosemary)

* green salads (lettuces, tomatoes, cucumber, bell pepper, red onion, carrots, etc.)

* grilled meat

* stir fries (meat, vegetables, rice, seasonings (this is a tricky bit, but there are lots of gluten-free options here))

* bean salads

* curries (I like cauliflower, garbanzo beans, potatoes, curry, and olive oil)

Clearly, however, you currently have a style of eating that is heavily wheat based, and that's giving you trouble. Besides the obvious suggestions of replacing things like couscous with millet, wheat pasta with rice pasta, wheat bread with gluten-free bread (if you use bread), and the like, there may be more that you're having trouble trying to work around.

What is your diet normally like? What are the challenges that you are facing? Most of us have been doing this for a while and have gotten the hang of it (more or less ;-), we all make mistakes :-) ), and can probably help you work around those problems.

Jnkmnky Collaborator

I don't even have celiac disease and I'm gluten free and I am fine. Not hungry, not deprived. You can manage. You need to find your foods and replacements. Have you found bread that you like yet?

Open Original Shared Link

We get all of our bread from Kinnikinnick. Donuts are great, pizza crusts are great, bagels are great. Chocolate chip cookies are great.

What foods are you missing that you want? Post to me what you're missing and I'll tell you what to replace it with. You can eat plenty. You should not be hungry and you DON'T have to become a health food nut in order to live a Celiac lifestyle. I don't.

terriH Newbie

thank you for your replies - it's just so overwhelming - there's so much to learn - I didn't even think of substituting flour with corn starch for my sauces. I have so many family recipes - do you find you can substitute ingrediants to make them work? My family loves chicken soup - are Swansons or Collage Inn broth gluten-free?

What do you use to substitue bread crumb toppings or flour coated meats?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



terriH Newbie

more thanks - (I wrote my last reply before a bunch of your replies showed up) You have given my lots of ideas to start with. I did go to a health food store yesterday and I couldn't believe how expensive the products were. You gave me lots of beginning ideas. I didn't realize how wheat based my diet is. Most of my recipes come from my mom - who was Italian. You know what I'm really going to miss - maybe you can help - dipping a wonderful 7-grain bread in seasoned extra virgin olive oil. Do you actually have gluten-free bread that can compare??

tarnalberry Community Regular
thank you for your replies - it's just so overwhelming - there's so much to learn - I didn't even think of substituting flour with corn starch for my sauces. I have so many family recipes - do you find you can substitute ingrediants to make them work? My family loves chicken soup - are Swansons or Collage Inn broth gluten-free?

What do you use to substitue bread crumb toppings or flour coated meats?

Most recipes can be made gluten-free, and either taste the same, or nearly the same. Many, many recipes are already naturally gluten-free, including plenty of Italian ones.

I believe there is a version of Swanson's broth that is *not* ok, and I don't know about Collage Inn (you may have to call the company on that one). Many bouillons are gluten-free (do check, of course, you can't take anything for granted), and Imagine's broths are gluten-free and tasty.

Bread crumbs or flour coated meats can just use gluten-free alternatives. You can use rice bread or other gluten-free breads and make bread crumbs out of them, and you can use corn flour or rice flour for flour coated meats. (I tend to marinate or spice my meat, instead of coatings, so I'm not as familiar with this from a "practice it myself" perspective.)

As for bread for dipping... I haven't seen/heard of something that comes close - certianly nothing that you can buy. But do try experimenting in your own kitchen to see what you can try to make.

As for the expense, yes, if you buy specialty gluten-free produced items, it can get expensive, so sticking to things naturally gluten-free is often easier on the budget, but it will take some time as you adjust. It's really easy to get impatient with the changes, but as changes go, it can be a pretty big one, and so it takes some time.

What sort of recipes are you looking at trying to adapt? We've got a lot of experienced folks who've done a lot of adapting!

terriH Newbie

I've been going through some of my recipes as we speak, and I do see many will be fine. Some, though, like chicken pie, some of my chinese recipes (ie. hoisen sauce, oyster sauce - are these ok?) and what do I do about my spinach pie recipe - that one looks like a tough one. Is there a good dough for that?

a question about dining out- I have read how difficult this is. Since there are so many home recipes that work, why can't eating at a good restaurant work? Is it because you don't know about the seasonings?

Guest nini

Whole Foods Gluten Free Bakehouse makes a multigrained bread that would work for dipping in olive oil, me personally, I prefer Chebe Bread Balls for my bread with Spagetti or Lasagna...

tarnalberry Community Regular
I've been going through some of my recipes as we speak, and I do see many will be fine. Some, though, like chicken pie, some of my chinese recipes (ie. hoisen sauce, oyster sauce - are these ok?) and what do I do about my spinach pie recipe - that one looks like a tough one. Is there a good dough for that?

a question about dining out- I have read how difficult this is. Since there are so many home recipes that work, why can't eating at a good restaurant work? Is it because you don't know about the seasonings?

You can get mixes for a dough recipe, or you can combine flours yourself to make one. It can be tricky and take some practice, but what in life doesn't. :-)

For the chinese recipes, you can find gluten-free sauces, but you have to look around. San-J makes a wheat free tamari that's gluten-free, and tasty. (La Choy soy sauce is gluten-free, but it's not tasty. At all.) I haven't specifically looked at oyster sauce, but most chinese sauces *that don't contain soy sauce* are often gluten-free (always read the label), and Thai Kitchen makes a number of items that are gluten-free as well. (I use their chili paste frequently.) Most chili sauce is also gluten-free. You can also make your own sauces - like teriyaki sauce - at home using gluten-free soy sauce. (I like homemade better than store bought, and there are only a few, sometimes hard to find, brands of gluten-free teriyaki sauce.)

The biggest problem in restaurants is cross contamination. Let's say they're grilling your naturally gluten-free steak, sprinkled with what is investigated to be gluten-free spices, on a specially cleaned part of the grill that doesn't have any gluten residue from breads or marinades on it... And then they pass a plate of bread over your steak, and drop crumbs onto it. You'll get glutened by that steak. (One restaurant, at least, stores the greens for the salad *below* the bowl for the croutons... very real chance of contamination there. I think someone mentioned it was Olive Garden that does this, but it may have been just the one that the person worked for.) Additionally, no one in a restaurant, who doesn't have celiac, is going to be as careful as you would about checking ingredients and avoiding cross contamination. Heck, sometimes they can't even be bothered to use a well scrubbed pan. (That's why I tend to go for grilled or steamed items.)

happygirl Collaborator

The bone pain was one of my worst, most painful symptoms....and it comes back anytime I have any gluten. Sorry to hear about your pain. I hope that the diet will help.

Here are some things that are gluten-free and that I like (and I remember feeling like you....How can I do this diet? I was married for 2 months and in grad school when I was diagnosed....my cooking skills were MINIMAL! Now I've got the hang of it and my food is YUMMY!)

Tinkyada rice pasta is the only pasta I'll eat-its great. I used to to make spaghetti, macaroni and cheese (I use Bob's Red Mill gluten-free flour as a substitute when making the sauce), pasta salads (spirals, veggies, italian dressing), anything you would normally use pasta for.

I use a lot of McCormick's packaged seasoning packages. Not all are gluten free, but many are, and they seem to be really good about listing ingredients. In particular, I use their taco, fajitas, and enchilada mixes (and used them before I was sick, also). Use corn tortillas or lettuce leaves....or sometimes I just eat the goodies!

I substitute a gluten-free flour, or combo of flours, for anything that calls for "flour." Either Bob's Red Mill (pre-packaged, you can buy at a health food store or some grocery stores) or the combo that Bette Hagman's cookbooks have (you can do a search and find it on this site, I'm sure....or I can post it.) I even made a gluten-free gravy for Thanksgiving that everyone ate (5 non-Celiacs and me) with turkey drippings, gluten-free flour, pepper, Swanson broth.

For lunches, I eat lunchmeat (gluten-free---make sure to check----i've been "glutened" by not checking and it will have wheat or modified food starch...which I guess meant it was modified wheat starch since it was the only suspicious ingredient) cheese, and mayo wrapped up. Chips (many chips are gluten-free....Regular doritos are NOT gluten-free but other types of doritos, lays, etc are.) Dairy bothers me when I have been glutened, but when I am healthy, I eat a lot of cheese as snacks.

There are a lot of gluten-free salad dressings but you always have to check. I love Newman's Own Ranch Dressing....and I take along a little bottle of it when I go out to eat and put it on my salads if I don't know if the restaurants dressings are safe.

I eat rice a lot now, also. I got a rice cooker and love it!

I ate a very carb-heavy diet and my husband loves bread as well. He has his "own" items (breads, buns, cookies, snacks) and is always very careful to clean up crumbs and not leave any chance of cross-contamination. We have two butters, mayos, etc....one that is gluten-free (which I use for my foods and for any foods that we are making together) and then one that is not gluten-free (he uses for sandwiches, or things that could cause cross-contamination).

I personally eat a lot of "normally" gluten-free items.....a lot of it has to do with finding the right brand. I have very few 'specialty' gluten-free items....gluten-free flours, pretzels, pasta, .... oh, and Amy's Frozen Foods!!! They are the only gluten-free frozen food that I know of/can get in my area. Not all of her items are gluten-free but many are (Rice noodles-macaroni and cheese, as well as different mexican and thai dishes).

I have learned so much through this board and have found a lot of support and knowledge that I would not have had otherwise. Please continue to ask questions and let us know how you are doing. You CAN do it!!!

The bone pain was one of my worst, most painful symptoms....and it comes back anytime I have any gluten. Sorry to hear about your pain. I hope that the diet will help.

Here are some things that are gluten-free and that I like (and I remember feeling like you....How can I do this diet? I was married for 2 months and in grad school when I was diagnosed....my cooking skills were MINIMAL! Now I've got the hang of it and my food is YUMMY!)

Tinkyada rice pasta is the only pasta I'll eat-its great. I used to to make spaghetti, macaroni and cheese (I use Bob's Red Mill gluten-free flour as a substitute when making the sauce), pasta salads (spirals, veggies, italian dressing), anything you would normally use pasta for.

I use a lot of McCormick's packaged seasoning packages. Not all are gluten free, but many are, and they seem to be really good about listing ingredients. In particular, I use their taco, fajitas, and enchilada mixes (and used them before I was sick, also). Use corn tortillas or lettuce leaves....or sometimes I just eat the goodies!

I substitute a gluten-free flour, or combo of flours, for anything that calls for "flour." Either Bob's Red Mill (pre-packaged, you can buy at a health food store or some grocery stores) or the combo that Bette Hagman's cookbooks have (you can do a search and find it on this site, I'm sure....or I can post it.) I even made a gluten-free gravy for Thanksgiving that everyone ate (5 non-Celiacs and me) with turkey drippings, gluten-free flour, pepper, Swanson broth.

For lunches, I eat lunchmeat (gluten-free---make sure to check----i've been "glutened" by not checking and it will have wheat or modified food starch...which I guess meant it was modified wheat starch since it was the only suspicious ingredient) cheese, and mayo wrapped up. Chips (many chips are gluten-free....Regular doritos are NOT gluten-free but other types of doritos, lays, etc are.) Dairy bothers me when I have been glutened, but when I am healthy, I eat a lot of cheese as snacks.

There are a lot of gluten-free salad dressings but you always have to check. I love Newman's Own Ranch Dressing....and I take along a little bottle of it when I go out to eat and put it on my salads if I don't know if the restaurants dressings are safe.

I eat rice a lot now, also. I got a rice cooker and love it!

I ate a very carb-heavy diet and my husband loves bread as well. He has his "own" items (breads, buns, cookies, snacks) and is always very careful to clean up crumbs and not leave any chance of cross-contamination. We have two butters, mayos, etc....one that is gluten-free (which I use for my foods and for any foods that we are making together) and then one that is not gluten-free (he uses for sandwiches, or things that could cause cross-contamination).

I personally eat a lot of "normally" gluten-free items.....a lot of it has to do with finding the right brand. I have very few 'specialty' gluten-free items....gluten-free flours, pretzels, pasta, .... oh, and Amy's Frozen Foods!!! They are the only gluten-free frozen food that I know of/can get in my area. Not all of her items are gluten-free but many are (Rice noodles-macaroni and cheese, as well as different mexican and thai dishes).

I have learned so much through this board and have found a lot of support and knowledge that I would not have had otherwise. Please continue to ask questions and let us know how you are doing. You CAN do it!!!

terriH Newbie

Wow - everyone's advice has been so helpful - I've actually been taking notes on all of your favorite items and suggestions. A couple of questions - are modified food starch or maltodextrin bad? Is there gluten in Advil? thanks

Rusla Enthusiast

With medications I would consult either the company that makes them or a pharmacist. I would go with the company because they add fillers and some can be glutenesque.

I have many recipes I change the flour and do bean flour, soya flour, rice flour combinations. There are some not bad gluten-free cook books too. You can also do gravy and sauces with tapioca flour.

Jnkmnky Collaborator
Wow - everyone's advice has been so helpful - I've actually been taking notes on all of your favorite items and suggestions. A couple of questions - are modified food starch or maltodextrin bad? Is there gluten in Advil? thanks

Maltodextrin is ok in the U.S. Modified Food Starch needs to be verified as a gluten free source if the product is not from a company that *declares* gluten. Kraft foods will NOT just write "modified food starch" in the ingredient list and leave it at that IF the source is gluten. Kraft will put, in parenthesis, the source of the starch IF it is gluten. Confusing at first... Katie has a list ... the list is everywhere on this site, actually, of companies that do NOT hide gluten behind words like Modified food starch. This is quite a helpful list as you do NOT need to call the 1800#'s of those companies chasing down verification. But you've got to locate the list here at celiac.com. I think there should be a permanent link to it under FAQs. Anyway, as a beginner, you could call all the 1800's and verify for your own peace of mind to begin with. Advil is gluten free.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.