JMG - I didn't understand it either. I can't remember the exact wording he used, but it was to the effect of "you have Celiac, but a mild case so eating gluten probably isn't causing the symptoms you describe. It isn't necessary to eat a gluten-free diet and if you do, you probably won't notice a difference in those symptoms". That didn't sound right to me so I opted to go gluten-free. The heartburn went away, but the rest of the symptoms remained so he was partially correct. I guess I'm one of the ones who has the minor or symptomless form of coeliac from your quote above. I do know the dangers of eating gluten, but like I said, it's hard to resist sometimes knowing that there is really no immediate pain. Think of it like smoking. We all know smoking can cause cancer, but even a smoker has a hard time giving it up.
Cycling Lady - thank you for that information. I was not aware that I was supposed to be having follow-up care. I literally saw him once for the diagnosis and never again after that (save for my follow-up colonoscopy, but I was under sedation so it's not like we talked).
TexasJen - Thank you for the information. I do eat some of the foods you describe, but up until Christmas they have never caused me any pain. Is it normal for it to pop-up so suddenly and severely?
I was diagnosed with Celiac and I have been gluten-free for about 4 years. I didn't have a very strong reaction to gluten so my GI told me I didn't have to go gluten-free, but I did anyway. He was convinced that all I have is IBS (which might be true, but I'll get to that in a minute). I'll admit to occasionally "cheating" and eating things with gluten knowingly. Sometimes I'd feel bad and sometimes I wouldn't. I only cheat about 3-4 times a year so it's not like I do it a lot. I know that this is bad, but when you don't feel bad after eating gluten it can be really hard to stay gluten-free even with a definitive diagnosis of Celiac.
Even eating completely gluten-free I still have loose stools almost all the time. I'm not in pain and doesn't come with cramps so I've just ignored it and thought it was my lot in life. That's why I think I probably have IBS. I know there's nothing to do for it so I haven't thought that much about it.
Fast forward to around Christmas time. I think I may have accidentally eaten something with gluten in it because I had my typical reaction (bad heartburn). Since then I have gone above and beyond to make sure that I am not even getting CC. I only eat at home and I only cook with things that haven't come in contact with gluten, but I have had heartburn non-stop since then. I gobble Tums at night and take Prevacid every day. The prevacid helps a little, but by dinner I'm back to being miserable. My stools have gotten even worse and I constantly feel bloated.
I know that sometimes people with Celiac can develop sensitivity to other foods. Does it sound like that is what is happening to me? If so, should I try to do the elimination diet (please say No!) or should I go to a doctor to get a diagnosis? Are there other options?
Pre-Celiac I usually only baked on holidays, but lately I've been wanting to give it a try. I went to the store and bought some all purpose gluten-free Flour (Bob's Red Mill) and some Xanthan Gum. Can I just sub these items in for regular All purpose flour on other recipes? I've seen some of the discussions on here about a mix of flours, but this one looks like it's already a mix (Garbanzo bean flour, potato starch, tapioca flour, white sorghum flour, and fava bean flour). There's actually a recommendation on the side of the package (1:1 flour + varying amounts of xanthan gum depending on what you're baking). I'm just scared to try something and have it be a giant waste.
Can someone point me to some tried and true recipes that don't require any other specialty ingrediants (flaxseed, multiple types of flours, special starchs, tapioca, etc)? I don't want to run thither and yon to find a bunch of unusual ingredients. I'd like to start out with what is just in my pantry.
Thanks! I appreciate any and all help.
Thanks everyone! I'm starting to feel less crabby about it. I think I was just having a really crabby day for some reason. Per suggestion, I did go out and get all new measuring spoons, cups, mixing bowls, etc. I bought them in bright colors so we can differentiate which ones are "mine" and which ones are for everyone else. Maybe I did get CC'd at home. I didn't feel bad, just irritable. I must be over the hump because I wasn't even annoyed when I saw that my husband was marinating steaks in something I can't have. I guess he's going to have to get used to looking at labels too if he wants to cook for the family. LOL!
On the other hand, today I have felt bad all day. I can't figure out what might have gone wrong. I went out for sushi and specifically asked for gluten-free sushi . I even asked for gluten-free soy sauce and I asked if the wasabi was gluten-free (it wasn't ) so I avoided it. I did go out for a dessert cocktail after dinner, though, and I'm wondering if that was it. It was ice cream and chocolate vodka. Thoughts? Since I'm supposedly not that sensitive I'm surprised to be feeling so bad. It has me second guessing going out again. So frustrating!
Thank you everyone for making me feel normal and welcome! Most people make me feel like a whiner. For some reason I'm just in a really angry mood lately. I was doing so well for the first two weeks. I don't know why it just hit. Clearly I'm in the anger stage of the grieving process.
I have been playing around with real cooking for the last few weeks. Unfortunately, I have a family that isn't very tolerant of my situation. I sometimes find myself just zapping microwaveable meals for the kids because they aren't digging my risotto or gluten-free pasta dishes They did all love my roast chicken, though, so yea me! So, while I'd love to just put all the gluteny stuff in the trash, I keep it around for my hubby and the kids to eat. I'm just careful about CC when I prepare food. It's not that hard. Maybe I can turn them to the dark side at some point...or at least when they are eating at home.
I think I'm also a little confused because the doctor said that I had a "weak positive" - whatever the heck that means. I thought you either had it or you didn't have it. He said I could just eat normal and then come back in 3 years for my routine colonoscopy to see if it's any worse. He seems to think that all of my pain is due to IBS. I'm not even sure if I need to be doing this, but I have been feeling some better so it seems like I should stick to it. Especially when I read some of the things on these boards. It seems like even doctors don't give a lot of credit to the gluten-free lifestyle.
In any event, thanks for cheering me up a little bit. I'll keep poking around on the other areas of the site to see if I can get more tips and tricks. In the meantime, feel free to keep trying to boost my mood
I'm new to this forum and new to Celiac and hoping you all will make me feel better. I've been gluten-free since Jan. 2nd so it's really new. I was diagnosed with Celiac right after Christmas, but it took me a few days to wrap my head around the diagnosis and make the decision to go gluten-free.
I have so many friends who are encouraging and trying to be nice by sending me links to gluten-free food blogs and gluten-free recipes. I just want to throw myself one big pity party, and I feel like no one understands. I actually feel like I'm going through the grieving process which seems silly, but yet I can't help it.
Prior to diagnosis I probably ate out at least 3-4 times a week. Now I avoid going out like the plague because I hate making a big deal out of this. I wanted to crawl under the table the first time I ate out when I had to ask the waiter how the steak was prepared and stress the fact that I was doing this for health reasons and not because I was on a fad diet. I'm getting better at it, but I'd still rather just eat at home now to save myself the hassle. This is also a problem because I've never been much of a cook. My idea of cooking was taking something out of the freezer and zapping it in the microwave. I'm getting better at cooking and am trying out recipes that are naturally gluten-free so I don't have to futz with expensive ingredients. I don't really miss bread, cakes, or cookies until someone is eating it right in front of me.
My well-meaning friends will say things like "It's so much easier now" or "you should go to xyz blog for recipes". Easier is a relative term. Yes, it's easier than it was, but it's still hard as heck for someone who isn't used to paying attention to every little ingredient on a label. Yes, there are restaurants that serve gluten-free items, but I still have to think about what to order and it's probably NOT the item I'd prefer to order. Yes, I can go to any number of blogs for recipes, but since I'm not much of a cook it requires a big lifestyle change to plan meals well in advance so I make sure to have all of the ingredients in the house. Yes, I can make my own Girl Scout cookies, but it would be a heck of a lot easier to just open the box that's in the pantry, and do we need another couple dozen of the exact same cookie in the house (of which we already have 7 boxes). I know all of the things I'm supposed to do. I know all of the foods that I can eat. I know all of the reasons that I need to do this. I don't need advice.
I just want someone to say "I get it. This is hard. It's a complete lifestyle change." I want someone to tell me that it's normal to be pissed off. I want someone to say that they went through this too. That they too went through a grieving process, but that it got better. I know I'm not dying of cancer, but is it so wrong to expect a little bit of sympathy from my friends and family?