zero

I started having constipation after diagnosis and going gluten free.  After 2 years I discovered that a probiotic (3 billion) with yogurt put me (thankfully) back to normal.

Eating out is the worst part of celiac for me as I don't really want to discuss my health history with strangers.  I try to look at a menu online before going to the restaurant so I am prepared to discuss a particular dish. I try to pick a chair which will be accessible to the server so I am not yelling across a table.  As others have mentioned, I also say I have a "gluten allergy" so the "peanut/shellfish/... allergy" reaction gets triggered in the server. 

I never, ever reacted to gluten before my diagnosis but will now react to a crouton.  Not severely but it is noticeable.  Eating out is always a risk but I have only had a couple of problems in the 6 years since my diagnosis.  Once at a resort where the server was a college student summer hire.  Another time when the restaurant was noisy so I couldn't talk to the server and chose what I thought was a safe dish -- live and learn.

I don't claim to be a vegetarian, I simply don't eat meat unless I have to.  Which means I only eat meat if I am at a restaurant or visiting.  I don't cook so my preferred easy to prepare meal is brown rice from my rice cooker with cannellini beans topped with spaghetti sauce.  For some reason, I never tire of it.

With regards to oats, this link my be useful,

  Open Original Shared Link

The wikipedia page on oat sensitivity says this,

  "There is no evidence that oats can trigger GSE (gluten sensitive enteropathy), only that in a small number of celiacs disease can be sustained or reinitiated by oats once triggered by wheat."

but there is no citation so not sure if it is accurate.

I would probably also periodically get a blood test to see if my body is reacting to gluten. As I understand it, the flour in pizza has a higher gluten content.

I have fond memories of eating the Donatos Founder's Favorite at the High Street restaurant some 25 years ago.

I suggest you read the book "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green. I found it invaluable for helping to distinguish the facts from the myths. It is particularly important for you since you mention not having any symptoms which might tempt you (as it did me) to not bother with going gluten free. I never had a digestive reaction to gluten before my diagnosis but after a few weeks being gluten free I was reacting at about the crouton level. It does get easier though you may find yourself going through the various stages of loss.

FYI, this was from part of the email I sent to family members,

...

However, as this is related to genetics, I am taking the advice of my doctor and informing you of your slightly increased risk. The probability of your also having or getting celiac is,

1 in 133: for general population (inlaws)

1 in 40: for second degree relative (niece,nephew)

1 in 22: for primary relative (parents,sibilings)

10%: for my long lost twin sister (which I don't have)

70%: for my long lost identical twin brother (which I don't have)

Actually the surprising thing is how high it is in the general population. Diagnosis consists of a blood test and if positive it is confirmed by a biopsy of the small intestine.

This was a while ago. I can't say if those statistics are still correct.

My philosophy is that if it is visibly clean then it is safe as long as it is dedicated to gluten free usage. If I go by the max recommended allowable gluten per day, then that can be easily seen. And if some how gluten is hiding in some type of crevice, it is not going to multiply like a bacteria so will only end up being safer with usage. I cleaned my bread maker thoroughly when I made the transition and have had no problem. As always, it is a personal decision.

I like pure fit protein bars as a filling snack and protein supplement. I also like the food for life frozen rice almond bread typically found at whole foods and the larger grocery stores for use with peanut butter and jelly (jif and smuckers). For extended trips, I pack a loaf and jar in my (checked) suitcase. It is also hard to beat cereal when you want something quick. Finding an affordable and tasty gluten free cereal can be somewhat challenging. I currently like nature's path mesa sunrise from wegmen's. There are several worthwhile amy's soups. For snacking, I like mother's salted butter popped corn and rice cakes. Can you tell I don't cook? Well except for my rice cooker which is my most valued kitchen appliance. Load it up in the morning and it is ready at night.

As a newbie, I would suggest reading "Celiac Disease: A Hidden Epidemic" by peter green. It gets easier after a while but until then you will make mistakes. It is a process of finding what works for you. Good luck.

I stick to the simple and plain foods at a buffet and have not had a problem in my limited experience. At a thanksgiving dinner buffet that meant raw veggies and fruit for appetizers, plain turkey, potatoes, asparagus, no gravy ... I had to give up my normal vegetarian diet but it was a filling meal. The tough part is looking at all the deserts I couldn't eat. My sensitivity is at about the crouton level so I don't have to worry about trace gluten at these types of infrequent functions. My criteria for food I eat daily is more strict.

What you are suggesting sounds a lot like Open Original Shared Link. At least for someone with celiac, this sounds like an exceptionally bad idea since gauging the damage is difficult. I am not gluten free because of the symptoms but rather because of the other consequences which come from the disease. At diagnosis, I suggested to the doctor that because I was mostly symptom free that perhaps I did not need to follow the diet. He suggested I read up on the subject and as a result I am gluten free. Ironically, I am now sensitive at about the crouton level.

Sharpy,

I am catholic and I have chosen to not take communion. I came to that decision after taking communion after 2 weeks of being gluten free and was surprised to have a reaction. I never liked the idea of doing the shared wine cup and didn't like the idea of approaching the priest about low gluten hosts. That was two and a half years ago. I am comfortable with that decision but if I were a better catholic I probably wouldn't be. But what I also noticed is that I have felt a loss in the sense of community through the shared experience of taking communion. That may be what your girlfriend is going through. The suggestion of talking to the priest is a good one. As others have mentioned, taking the wine or a low gluten (but not a no gluten) host is equivalent to the regular host. And maybe there are other ministries within the church which she could participate in so as not to feel separated. If the church has it, maybe as a eucharistic minister which handles the wine. Good luck.

  On 10/24/2010 at 7:52 PM, Kayhere512 said:

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female

2. Age:

3. How long ago were you diagnosed with celiac disease?

4. Does anyone in your family have celiac disease?

5. How severe is your celiac disease?

6. Is it difficult to eat out at restaurants or anywhere outside of your home?

7. Do you believe that there should be more to be done to make this disease more aware to the public?

8. How has this disease impacted your life?

9. What do you think would make celiac disease easier to deal with?

1. Male

2. 50

3. 2 years

4. No

5. Not too bad -- my sensitivity starts at the crouton size.

6. Yes.

7. No -- maybe more aware for doctors.

8. Following the diet is inconvenient but not a burden. No known long term consequences fortunately.

9. More choices at the super market and restaurants but given the percent of the population which has this disease it is not too bad.

This is the data I collected a couple of years ago so it may be out of date,

1 in 133: for general population

1 in 40: for second degree relative (niece, nephew)

1 in 22: for primary relative (parents,siblings)

10%: for a twin sister

70%: for an identical twin brother

I am the only one in my family with celiac which is also likely given the probabilities.

  On 8/15/2010 at 7:42 PM, MarkR555 said:

Do people tend to put on weight as they start to heal up and absorb things better? I go the gym a lot and eat a lot of calories and plenty of protein and noticed I have to eat significantly more than others.

I think tomorrow I will have a burger somewhere as my last ever deliberate gluten meal.

I work out everyday and lost an unusual 6 pounds when symptoms started and gained them back a year later after I was diagnosed. I'm not convinced all of those pounds were fat so your gym results may improve as your gut heals.

My last official gluten meal was a burrito (sigh).

I have also experienced constipation after becoming gluten free though it is more at the annoying level rather than something I am concerned about. And I also don't eat meat but eat lots of rice and beans so maybe there is a connection there. I figured it was because of the removal of the whole grains from my diet. I use some natural laxatives but I can't say that it does much. I think it has gotten a little better over time but mostly I just try to eat enough salad for roughage and to stay away from rice cakes. Sorry I can't be more helpful.

Interesting question. Before my diagnosis, I went through about four years with several strep throats and and a couple of ear infections and a cold or two. In the two years since being gluten free I have had one small cold. Maybe it is a coincidence or maybe my immune system is no longer being stressed. Oddly, the hay fever is worse.

  On 7/11/2010 at 1:36 AM, HeatherCarter said:

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?

I never had a reaction to gluten before my diagnosis so naturally I thought it was wrong. After going gluten free for a few weeks I started having reactions to accidental glutening. I also gained back 6 pounds. It takes time to adjust to a new diet and basically a new life style. Out of curiosity, how were you tested?

For the year of so before I was diagnosed, I had the strangest depression which would come and go. I would do or experience something which should make me happy but it wouldn't. I kept asking myself "why am I not happy?". And it felt like a depression which was imposed on me. After I went gluten free, I still felt a degree of depression but it felt (feels) more like a pattern that I am in which can be broken out of through good experiences. I have only glutened myself a couple of times and fortunately I am not sensitive enough for it to trigger the gluten type depression. The depression really sucks. It was the worst of my symptoms so I wish you the best in managing it.

I am celiac and don't eat meat unless I am at a restaurant and have no choice. My preferred easy meal is brown rice, beans, spaghetti sauce and hot sauce. Rice and quinoa is pretty easy to make in a rice cooker and can often be used as a substitute for pasta. Good luck.

I had a similar question for my doctor and he suggested I study up on the disease since I hadn't heard of it before. I suggest reading "Celiac Disease: A Hidden Epidemic" by Green and Jones which I think provides a pretty good guide on the medical aspects of the diseases. One of the examples they give is that eating gluten is like skinning your knee. In time it heals but continually damaging the knee will have consequences. Unfortunately the consequences are really bad and the tolerable level of gluten is really small. If your like me and a lot of other folks, you will find yourself becoming sensitive to gluten on a gluten free diet even if you weren't sensitive before and will want to avoid it under all circumstances.

  elle said:

Can you provide a reference for these numbers? I would love to share this with my family also, but had never seen those. Thanks.

I can't find the original link where I got this data but you can take a look at this one,

Open Original Shared Link

This is a part of the email I sent out. In the parenthesis I put in the names of some of my relatives and some imaginary relatives (no twin brothers or sisters):

However, as this is related to genetics, I am taking the advice of my doctor and informing you of your slightly increased risk. The probability of your also having or getting celiac is,

1 in 133: for general population (not related)

1 in 40: for second degree relative (nephews,nieces)

1 in 22: for primary relative (brother,sister,parents)

10%: for my long lost twin sister

70%: for my long lost identical twin brother

Actually the surprising thing is how high it is in the general population. Diagnosis consists of a blood test and if positive it is confirmed by a biopsy of the small intestine.

For my endoscopy/colonoscopy the doctor noted inflammation in the stomach. He said that this can be caused by all of the laxatives taken to prep for the colonoscopy. My experience was similar to yours -- it was just about the easiest medical test I have ever had.

Not really a supplement but I like purefit protein bars which have 18g of protein per bar and

are gluten free.