Nutrition & Diet Anyone else have celiac/gluten intolerance?

[Raven815]

About the beginning of March, I started getting a rash that itched terribly and constantly. I went to my MD and she put me on steroids and other stuff. It cleared up a little and came back w/ a vengeance right after. I then went to a dermatologist and she didn't have a clue. She thought I might have hives, but did a biopsy and referred me to the University of Illinois.

I did a lot of research on my symptoms and discovered a form of celiac called Dermatitis Herpetiformis. I could be a walking textbook case. They can only diagnosis me if I go back on gluten for about 2 months (I've been off gluten almost 4 weeks). I haven't gotten the results back from the biopsy yet, but seeing that the rash is clearing up after going off of gluten, I don't need any more proof. Besides, my Mother is a diagnosed celiac and it is genetic. You couldn't pay me to go back on gluten.

So, I was hoping to hook up w/ other veggies who don't eat gluten. It's been hard. I can't eat any of the fake meats anymore and I've been staying away from soy and corn, also. Celiacs are known to have sensitivities to more than just wheat and gluten. Right now I'm at a loss for protein sources besides beans. I was hoping someone out there could relate to my struggle and give me some support and advice.

Laura

 

[AlmandineSky]

I don't have celiac disease as I was tested a few years ago when I was diagnosed with IBS after being tested for everything. But a new doctor suggested eating gluten free anyway because I had a lot of symptoms that can be caused by gluten intolerance. I did it for a while and everything went away, my joint pain, my menstrual cycles became regular, I had more energy, stomach bloating went away, etc. I haven't been sticking to it the last couple of months though. I've had some pretty bad food aversions and morning sickness so I've pretty much have just eaten whatever does sound good whether it's gluten free or not as long as it's vegan. My aversions and sickness are getting better so I've been eating more gluten free meals again but I'm not back to it 100% and I may not go back for a while. The only thing that has come back so far is the joint pain. So I've been trying to cut back and at home I'm eating mostly gluten free but when I go out I'll eat whatever sounds good as long as it's vegan.

For protein sources I was (and still am) eating a lot of beans, lentils, tempeh and tofu. For recipes I found that I relied a lot on Appetite for Reduction and Vegan Fire and Spice because both are very gluten-free friendly. There are some recipes for foods with gluten that can easily be made gluten free but I think there's a couple that I just haven't bothered with because it seems like the seitan or whatever is called for really seems to be a big part of the dish. I still avoid barley and rye. I tried making a barley stew a few weeks ago and got really sick from it.

Soy curls is something else I started using and still use for when I really wanted a mock meat. They are great if marinated and then pan fried for fajitas, I use them in stir fries, the other night we had quesadillas with daiya shredded cheese and I marinated the soy curls with some spices and then pan fried them with peppers and onions and did like fajita quesadillas. I used brown rice tortillas for it so it was all gluten-free. I don't care for brown rice tortillas for wraps but for something flat like a quesadilla I find that they are okay. For wraps I finally started using a big collard green after I tried a raw burrito at a local raw restaurant and I found that I liked the collard greens raw. I do lasagne with gluten free noodles and then for the fillings I'll do like diced eggplant, mushrooms and spinach and then make a tofu ricotta. If I'm doing it for guests I'll also put daiya mozzarella on top at the end of baking to melt over. My friend who has been vegan for about a decade said it was the best lasagne he's ever had and was surprised that it was gluten free. You can also use soy TVP or lentils for a meaty like sauce for lasagna or spaghetti or whatever.

 

[Raven815]

Thank you so much. From doing a ton of research, I have found that you can be asymptomatic and still have celiac. You can also test negative and still have it. Also, hardly any doctors know anything about it (so sad). It sounds to me like you have celiac or at least an intolerance. But, from what I understand, an intolerance is still celiac.

Thanks for the great suggestions. I have BOTH of those cookbooks. I'll have to pull them out. For the time being, I'm also off of corn and soy until I can get to an allergist and find out what I might also be sensitive to. I have been wondering about the TVP. I have a bag and I know it is a great "meat" substitute. I've also always wanted to try the soy curls. You make them sound delish. I have used collard greens for wraps and I want to try to find rice tortillas. Where do you get them?

You might want to look at www.celiac.com. I was blown away by what I didn't know about this disease and my Mother has had it for about 30 years, so I am somewhat educated. They also have a forum on there and it has really warm, caring people on it (like here at VV).

Laura

 

[Scorpius]

you can be asymptomatic and still have celiac. You can also test negative and still have it.

Why would somebody care if they were totally a symptomatic? And how could someone decide they are gluten intolerant if they test negative for it?

I have a hugre problem with the "gluten free" fad. Because that's what it is nowadays - a total fad. If there wasn't such a market for specialty "gluten free/wheat free" products (sold at exorbitant prices), maybe not as many people would be "gluten free". It just seems odd that ten years ago nobody knew what the hell gluten was, and nowadays its a household term, and chances are you know somebody who is "gluten free" because it cures this that and the other thing for him or her.

I guess I should just be thankful that I haven't fallen for the gluten free trap.

 

[Raven815]

Wow. If you have celiac and are asymptomatic, there is still a lot of damage being done inside of your body. Looking back at some of my medical issues and situations over the years, it looks like I have probably always had it. It finally reared its ugly head this March. I had a biopsy done and it was positive. Like other diseases (high blood pressure, etc), celiac can be a silent killer.

I understand about this gluten-free fad. The only good thing about it, is it is bringing much needed attention to a disease that is not well known. Also, now there are more GF food and product options out there. My Mother has had celiac for about 30 years and she is now dying from cirrhosis (caused by celiac). This is not a minor disease and can cause major health issues in your body. You are more prone to all kinds of cancers and auto-immune diseases, too.

Please educate yourself a little about this and you might be a little more sympathetic. Yes, some people are just choosing to go off of gluten for health reasons, but I also tend to agree that our bodies were not meant to ingest wheat or gluten and it really can improve health issues.

Finally, Scorpius, why does this anger you so? Being a vegetarian, I would think you would be a little more understanding to people who choose a different lifestyle than you. And especially be more sympathetic towards people who have no choice in this matter.

Laura

 

[Lord Snot]

Honestly, I'm surprised to hear it described as a fad. I wasn't aware it was fashionable to be gluten intolerant or that many people were doing it for health. But like Laura, I'm glad about that if it means there are gluten-free options for people who really need them

 

[Raven815]

Honestly, I'm surprised to hear it described as a fad. I wasn't aware it was fashionable to be gluten intolerant or that many people were doing it for health. But like Laura, I'm glad about that if it means there are gluten-free options for people who really need them

Thank you, friend.

Laura

 

[Scorpius]

Sorry I voiced my opinion on the internet. I'll try never to do that again.

Please educate yourself a little about this and you might be a little more sympathetic. Yes, some people are just choosing to go off of gluten for health reasons, but I also tend to agree that our bodies were not meant to ingest wheat or gluten and it really can improve health issues.

I have educated myself enough and I respectfully disagree with you about this. I do not think GF foods are any healthier than food with gluten (i.e. steak and mashed potatoes are gluten free, but still pretty shitty for you in other ways) , if you're not a celiac person.

Finally, Scorpius, why does this anger you so? Being a vegetarian, I would think you would be a little more understanding to people who choose a different lifestyle than you. And especially be more sympathetic towards people who have no choice in this matter.

Laura

Well, now you seem a bit angry. Sorry about your mother and your problems. I'm not doubting that Celiac disease is a real illness and it can cause serious issues. I just think that it has recently reached an over-blown 'fad' status that would make anyone who actually suffers from celiac sprue feel a bit undermined.

 

[Raven815]

No, I'm not mad at all. I do agree that this "fad" does undermine the people who have real issues with gluten. I found that out when I went to a dermatologist who literally told me that I did not have Dermatitis Herpetiformis (a form of celiac where your immune system attacks your skin instead of your gut). I got her to do the biopsy anyway and, lo and behold, it came back positive. I thought maybe she would admit she was wrong, but she didn't. Doctors know very little about this disease, so being that it is a little more out there hopefully may make a difference.

I actually thought that I was very educated about celiac (since my Mother has it), until I was diagnosed. I can't believe how much I didn't know and am continuing to learn.

There are a lot of GF products out there that are just junk food. When I talk about eating GF, I mean a "healthy" diet, such as fruit, vegetables, other grains, legumes, etc. I totally agree that people are misinformed when they think that just because they are eating GF, they are eating healthy. My Mother has a terrible diet. I would consider her a GF "junk food junkie". Thank goodness my sister (a vegetarian also), cooks for her so she does get some nutrition in her body. I don't ever want to go that route. I want to only put healthy food in my body, with a GF "treat" once in awhile.

Laura

 

[Freesia]

My ex has gluten intolerance, and he only has to have a few mouthfuls of wheat and he is bloated and sick for days. He burps constantly and cant eat. He is fine if he doesnt have any.

I think some people do have gluten processing problems with varying symptoms. I dont seem to have it tho and noone in my family does.

 

[Freesia]

My advice with GF is to eat things like quinoa, polenta, rice, lentils and beans, all GF... also learn to make kick *** cookies out of potato/rice/chickpea flour. Learn to bake GF foods and cook everything from scratch. And of course you can have all the vegetables and fruits.

 

[Raven815]

It's weird, but celiac and gluten intolerance (also celiac) can be underlying and show up in very unusual ways. For example, in 1991 I was diagnosed with MS. After my initial problem (double vision) went away, I never had any other problems with it. Many years later I saw the same neurologist and he said he wondered if I ever even had MS. Now I find out there is a brain issue related to celiac called ataxia. I wonder if i might have had that. Celiac is inter-connected with many other auto-immune diseases. I have had many signs over the years, but because I did not have stomach issues, I did not believe I had it (my Mom tried telling me for many years that I did.) But, I have Hashimoto's, diabetes, heart disease, depression, anxiety and more. i'm now finding out that all of these issues can be from celiac and not being gluten free. I have always had a weight problem, and since going off of gluten (4 weeks now), I am losing weight w/o even trying. Who knew that gluten can also make you gain weight or make you malnourished and too thin. I'm hoping that once I'm off of gluten for awhile (takes a long time to get out of your system-up to 2 years), I will be healthier than I have ever been. Hopefully, I will be able to get off all of my meds.

I'm trying to turn all of this into a positive thing because it's my life now. I'll really be happy when all of this itching goes away (it's worse at night) and I can get a full nights sleep. But, it's a little better every day, so I have to just hang in there.

Laura

 

[Raven815]

My advice with GF is to eat things like quinoa, polenta, rice, lentils and beans, all GF... also learn to make kick *** cookies out of potato/rice/chickpea flour. Learn to bake GF foods and cook everything from scratch. And of course you can have all the vegetables and fruits.

Thanks so much. Like I said, Mom has had this for many years, so we all have been cooking for her the whole time. Last night I made a Vegetable Paella that was out of this world. I got it from my "Gluten Free Vegan" cookbook. Yeah, I realize about cooking from scratch. Saturday night we got food from a Thai restaurant and I ordered Pineapple Fried Rice. They know about my issues there, but I think there was some cross contamination, because right after I ate it my rash flared on my legs. Needless to say, no more restaurant food for me unless i know they are a dedicated GF establishment. It's been difficult, but hopefully it will get easier as time goes by and I get used to things.

Laura

 

[Penny79]

gluten and grain free here. love it. get my protein from fruits and vegetables, sometimes nuts and seeds.

 

[Raven815]

Thanks, Penny. I love eating raw as much as possible. It always makes me feel the best. Right now I am on a little bit of a pity party, so I could be eating much healthier. But, I am finally pulling myself out of it and getting back to some good, healthy food. I remember you always talking about being raw and still getting enough protein. You are such a role model to me, so I trust any advice from you.

Laura

 

[Freesia]

It's weird, but celiac and gluten intolerance (also celiac) can be underlying and show up in very unusual ways. For example, in 1991 I was diagnosed with MS. After my initial problem (double vision) went away, I never had any other problems with it. Many years later I saw the same neurologist and he said he wondered if I ever even had MS. Now I find out there is a brain issue related to celiac called ataxia. I wonder if i might have had that. Celiac is inter-connected with many other auto-immune diseases. I have had many signs over the years, but because I did not have stomach issues, I did not believe I had it (my Mom tried telling me for many years that I did.) But, I have Hashimoto's, diabetes, heart disease, depression, anxiety and more. i'm now finding out that all of these issues can be from celiac and not being gluten free. I have always had a weight problem, and since going off of gluten (4 weeks now), I am losing weight w/o even trying. Who knew that gluten can also make you gain weight or make you malnourished and too thin. I'm hoping that once I'm off of gluten for awhile (takes a long time to get out of your system-up to 2 years), I will be healthier than I have ever been. Hopefully, I will be able to get off all of my meds.

I'm trying to turn all of this into a positive thing because it's my life now. I'll really be happy when all of this itching goes away (it's worse at night) and I can get a full nights sleep. But, it's a little better every day, so I have to just hang in there.

Laura

From what I know my ex went through, he had some weird neurological symptoms too. He was diagnosed when he was 23. By that stage he was really sick and in hospital and because his coeliac test had come back negative it took a while for the doctors to figure out it was in fact coeliac at all.

When he was at university he once won a toast eating competition. I cant imagine what effect that must have had on his stomach...... he didnt realise at the time that it was wheat/gluten that was making him ill.

 

[Scorpius]

From what I know my ex went through, he had some weird neurological symptoms too. He was diagnosed when he was 23. By that stage he was really sick and in hospital and because his coeliac test had come back negative it took a while for the doctors to figure out it was in fact coeliac at all.

How did they diagnose him if he tested negative? (Just curious)

 

[Freesia]

How did they diagnose him if he tested negative? (Just curious)

I dont remember. I could ask him. But he said that he was tested and it came back negative. Up until he was diagnosed he was painfully thin but with a swollen belly and serious gut issues which made him really sick. I dont know how the doctors could have missed it, but he was finally diagnosed 10 years ago and I guess noone knew much about it then.

I know he has it because I have been with him when he has accidentally eaten wheat, he has a pretty bad stomach reaction which lasts days.

But if he stays away from gluten he is absolutely fine with no stomach probs.