Lisa

Somehow you always seem to miss the point. And when you reply you hardly ever make sense. Write in whole sentences explaining what the heck you are trying to say please.

I'm sorry that you find it a difficulty understanding my posts. But..to address my point....

Celiac Disease is found, often as secondary diagnosis with over 300 symptoms. No one is the same. There are no consistencies. The methods of diagnoses can vary immensely. I am not the exception.

Hopefully, the testing process can be refined in the years to come.

... we here know that with all but a few exceptions; testing in the real, every day world, for celiac BEGINS with the celiac panel NOT an endoscopy.

So, we need to be specific as to the type of gluten challenge we are asking for them to agree upon.

My diagnosis, in my real, everyday world, began with an endoscopy exam. No need to be specific, when nothing is specific.

What about BBQ's?

You mean going to BBQ's?

It takes a while to learn what may have gluten or not. And you have to know your environment. Generally, I would eat before you go, bring a dish to share (gluten free) or bring your own food.

Hi Tom,

Thanks for bringing up the testing / challenge issue. Scott (admin) posted a research link recently about interferon increasing in a short time, something like 10 days on a gluten challenge. It is a new study though, not an established process for doctors to follow. Probably most doctors won't even hear about the research for a year or more, and that's if we push them to read it. It seems to me the celiac advocacy groups could make some impact on this. If they could bring out the new information and research to more doctors testing might change. But it seems like the research is ahead of the actual practice at this point.

Sounds like Tom is a step a head of the PR Department.

At celiac conferences, mothers have often stated that their babies and toddlers with celiac disease were moody and clingy before going gluten free....and the staring "thing" has also been described. With celiac--and particularly in babies and children--the frontal lobes can be deprived of oxygen, causing neurological problems.

You're a bright mom to have caught this so early!

Rose, I'd be interested to learning more about the Celiac connection. If you can find any research or lectures from the conferences, it would be great. Thanks

I wonder if there is something in those other than lactose that would be causing this?

Yes, it's possible. But, first make sure you are 100% gluten free (as much as humanly possible) for some time, before you start to suspect other issues. Revisit your meds, lotions, lipstick, scratched pots and pans, shared toaster, cooking non-gluten free foods, kisses... etc. Gluten can be very sneaky!

Hello and Welcome! I have witnessed an absence seizure in a little one in my life when she was around the same age as your son. It's pretty concerning.

You may be on to something. Some days she's calm and content, other days she's hyper. She's not always gluten free at my house, but I'm thinking that will change.

You sound like a great mom. I wish you continued success.

Until full healing can take place, any kind of food may be problematic gluten free or not. And you may find that your reaction time may vary, which always make it hard to pin point an issue.

Keeping a food diary might be helpful. Have you eliminated dairy? Immodium works for me when I'm in a situation with no rest room. It's also, relieves some of the worry, which makes everything worse.

Start her on the gluten free diet and relieve her of her pain. If she is uncomfortable, there is no need to continue on a full gluten diet just to be tests by an endoscopy. She's five And testing is not as reliable with children under the age of five.

A positive result on the diet is an additional confirmation of Celiac Disease or a gluten intolerance.

Either way, please ease her distress. And, I wish you great success.

I'm about a hour and a half away, but we go to Norfolk/Chesapeake about once a week.

If I can help you in any way, I'd be glad too...and Welcome!

I spent an hour in Panera two days ago for a work meeting. I didn't consume anything, not even water. I was very careful not to touch my face and watched my hands as soon as we left. I still got glutened.

I called the Panera and confirmed that they don't make their bread from scratch in that location, but they do bake bread that arrives as pre-formed dough.

I would really like to figure out why I sometimes get glutened if I'm in a highly gluteny area. Is it inhalation of gluten particles in the air, or skin contact? I know there's controversy around both, but I'm 100% certain that I was glutened just by being in the Panera and I've read enough comments from other highly sensitive posters to know it happens to others as well.

If I could get a handle on whether the problem is skin absorption or inhalation, it would help to know what to avoid.

Just a few weeks ago I successfully ate gluten-free flatbread at a flatbread restaurant (first attempt in 8 months) so I know I don't always react to being around gluten.

For those of you who are sensitive around gluten, what do you believe is the trigger?

The gluten molecule cannot penetrate the skin. But, then, some may have a gluten allergy and can have a histamine reaction. I'm not too sure there would be enough gluten floating around at Panera to get into your nasal passages, but who knows.

Disclaimer: I'm not ultra sensitive.

I reacted to bread by touching the bag. I reacted to mini donuts by smelling them. I think it could be both or either one for some of us.

Wow...that's pretty extreme. How do you "react"? BTW, I HATE the smell of donuts. Always have, even before my dx.

I never felt any better when I went off gluten, I have only gotten worse for the past three years. And honestly I don't see any difference eating gluten now. I was diagnosed by a blood test and endoscopy, but I just now found out that there was no damage to my vill, but the biopsies showed inflammation in my small intestine so they diagnosed me with celiac. I might just have celiac and something else, but not eating gluten has never helped me to feel better. So, I'm having my endoscopy redone and having a colonoscopy, eating gluten again is just kind of a trial for me.

Even though you had a positive blood work and endo it might be a good thing to be retested. Anytime anyone has digestive issues, it's good to re-visit from time to time.

The gluten free diet is very complicated. Many people feel that just removing bread, pasta and beer from their diet is adequate. And many seem to be surprised that gluten is in lip products, lotions, medicines and many other hiding places.

And, ummmm.....have a really good piece of fried chicken for me. I haven't mastered the gluten free version, as of yet. OH and Angle Food Cake!

If you haven't already done this...I would recommend a full metabolic panel to check your mineral and vitamin levels. Often times, many can be deficient in B-12 and Folic Acid as well as other things due to lack of absorbing.

After my diagnosis, I had B-12 shots once a week for six weeks. My improvement was extraordinary.I could walk a straight line again and I could speak a whole sentence with success.

Hey everyone,

I went to the GI on Thursday and told him i had never actually felt better after being diagnosed celiac three years ago and he went through my tests and told me that it really didn't look like I had Celiac. So I'm getting my gets redone and I'm back on gluten for a few weeks. I know we all dream of gluten filled bread and pasta, so this was pretty exciting news to me. I think my tastes have changed though, while everything I've tried has been good, it really hasn't been impressive or anything like what I'd built it up to be in my head. I just thought this might be interesting to share with everyone!

May I ask how you were diagnosed three years ago?

I started the gluten-free diet Tuesday of last week. So I haven't been on it for long. But for the past 2 mornings after breakfast Ive had to make a dash for the bathroom. And unfortunately this afternoon Im not feeling any better. Yesterday morning I had cantaloupe, almond milk, and toast (gluten-free rice bread). Everything was safe, made by me, no possibility of CC. I thought it was the cantaloupe yesterday, because Ive had an iffy relationship with cantaloupe in the past. Well today I ate some toast again with some yoplait greek yogurt. Again, I made everything so CC shouldn't have been an issue. For lunch I ate some celery with earth balance PB, which Ive been eating off and on all week for a snack, and now I just feel like I could throw up. Ive checked all my medications that I take and from what Ive read, they are all safe. Maybe Im just having a bad day and a half in general? Or could I be intolerant to more than just gluten?

I noticed your signature...if you do in fact have Celiac, it will take some time to heal. It's often recommended that people go dairy free until some healing can take place. Most times, it can be reintroduced successfully.

As well, all foods can be problematic until there is healing, gluten or otherwise.

Give yourself some time and avoid dairy for two to three weeks and see how you feel.

THANK YOU SO MUCH! I will pass that on.

And look further.

My brother has an ongoing issue with Interstitual Cystitus. I'm not too familiar with this. And, I was hoping that I could find someone who is knowledgeable.

Can it be associated with Celaic?

I haven't been to Carrabas, but have heard it is good for gluten-free.

When I last looked at Appleby's gluten-free menu, it wasn't really very gluten-free. For example, it listed fries as gluten-free. If you read the small print in another part of the menu, it mentioned that the fries are cooked with all the gluten coated chicken nuggets, onion rings, etc. That means, the fries are gluten-free if you eat them before they are cooked (fried).

Carrabas is gluten free familiar and they are very good about your meal. It's a great treat for me. But, an hour and a half away..thus the treat.

I would not recommend Appleby's as being safe.

Hello! Bear with me...I posted a topic under Diagnosis, but since I have to wait for it to be approved, I couldn't find it!

Thanks so much for any advise...hopefully i can find this post too

Here it is:

This is the collective test that you should have your doctor order, if you would like to be tested for Celaic:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

It's important that you should be eating a full gluten diet, before testing for optimum accuracy.

Many people here are self diagnosed and they feel quite comfortable with that. Walk around this site and read others experiences. To test or not to test is a personal decision that only you can make. Some people want an official diagnosis, some people just feel better off gluten.

And Welcome!

Random stuff from the early days.

Funny stuff! I think we need a current picture of Vincent to check on that mullet comb.

How crazy! Can I assume this is our public school system? And I wonder where the effort has gone for our teacher to motivate our children.

Uh, please turn the page so I can read the posts. Oooh, much better.

Wow Peter! LOVE the update. You should take some of those LP's and frame the covers if they're vintage 60's and 70's (like us).