Lisa

Lisa,

Most of the doctors who had graduated or done their residencies before the landmark study in 2002 from the European doctors have no clue this is also an adult disease. That is probably 90%+ of all practicing physicians. When I was diagnosed, I was incredulous that I had sprue. Having initially trained in Pediatrics, I was familiar with celiac sprue but as a diagnosis for failure to thrive in infants. I thought my GI guy was playing a practical joke on me(he had done the biopsy on April Fool's Day), and I quickly got the idea. That first night before work, I was online until 2 AM trying to get a grasp of what I was up against. He told me to educate myself, that there wasn't much available in our area ;and it was much more than avoiding bread and pasta. Since April of 2003, I considered sprue in my patients, but in the same context as my presenting symptoms( weight loss, diarrhea,iron deficiency). As you well know, we are all different in our condition, and when I couldn't find any positive serologies in my patient base, I knew something was missing. When I was found to have autoimmune thyroiditis, I cross searched it with celiac sprue on the National Library of Medicine website, and there were over 300 hits. I then started searching for patients with autoimmune conditions and asking about related gut symptoms,charleyhorses,easy bruising,cracks in the corner of mouths,mouth ulcers. But the big tip was figuring out when you ask a patient how their bowel movements are....many celiacs(pre-diagnosis!) say "fine...the same". That 's because we've always been that way!! Now I ask them to DEFINE what they mean by "fine"....I do get some odd looks at times from my patients, but frequently when I've pieced it together, it's like a light bulb goes on . This a long response as to WHY doctors don't know about us....also there is virtually no money in research because going glutenfree does not involve pharmaceuticals! At least, not yet. It takes knowledge, TIME to ask all these nosey questions and a desire to solve a problem....not just patch something up.And we all know how frustrating it is to not have everything gel at once...positive serologies and biopsies. So many combinations....+blood work with neg biosy does NOT necessarily mean it's not there!! And vice versa,etc.....it's a frustrating condition for the docs to understand,too. So I hope to continue to spread the word and be an active member of his board. Hope this gave a little insight .

Ann

Ann:

I appreciate you posting me back in your "freetime". I think that you put the pin on the head......there is no money in research, because gluten intolerance can be controlled by diet, and no money to feed the phar.industry.

Thank you so much for passing the word with patience as well as professionals in your field. You truely are a ground breaker in the field of Celiac Disease.

Our Thanks, Lisa and everyone here.

I went on to their site that the old "Ann Landers -the new Annie's Mailbox" because she had a question about and 18 year old with IBS and they posted the above website for an IBS group and chat line.

I visited that site and it was "de-ja-vue"

It was totally sad for me and I wanted to bring everyone on that site back to ours. They had problems with beer, oat, wheat.........well, you know the whole list.

I did not register as a member, but it makes me so sad that there are soooo many, as we were out there, that haven't a clue about what is making them sick.

I know that Celiac is not the answer to all issues, but with IBS, it can be for a lot.

Others may find it interesting to check out their site. If you do, grab a few and bring them home.

Yup

I don't know nor have heard nothing about smoking and celiac (small intestines), but I do know that is true that smoking helps people with Crohn's Disease (large intestines).........it help stimulate the system, much the same way coffee will do.

After two weeks, they returned my e-mail. They will not guarantee 100% due to lack of information from suppliers of their ingredients.

Bla, I hate that.

Getting tired of Dove Shampoo and Conditioner. Any other grocery store shampoos and conditioners that have a confirmed no gluten response?

The New Delfi List for 2006 is mighty sparse.

Progresso Cream of Mushroom is gluten free and very good "for canned soup".

I usually make my one and it is very easy.

I've had two posts deleted. Nothing obsene - just one was to get rid of flour and one was to contact another member about autism (which is why I'm on this board - thank you to everyone for the help that I've received about the gluten-free/CF diet).

Is there a way to send a personal message to someone on the message board?

I do not know why your post should have been deleted . To PM a member, just click on their name and their personal page will come up. You can send a personal message or e-mail if that person has agreed to list that information.

To find a member go to the top of you screen and choose Members and find them by alpha order.

The oatmeal may be causing some problems. There is a high risk in cross contamination is the growing and processing process. (oats and wheat in the same fields)

We are past the roll-up stages around here, so no help from me.

Caramel color should not be a problem, but I know nothing about the food color.

Go figure

Thanks for the clarification.

Heidi Collins has agreed to serve at their official spokesperson.

Hip-hip-horrah!!!!!

My name is ...................Freckles Snow Bunny

My husbands name is .....Floppy Stuffing Stuffer

Hummmm

LOL mine is grumpy eggnog breath.

LOL, I am sorry

As you count the days, take a deep breath every morning. Jess, don't get sooo caught up in the plans that you don't enjoy the count down.

When, after you are married and you turn to face your family and friends.............look around and SEE those family and friends. It will be imbedded in your mind.

And remember to eat something before your wedding. There will be soooo many people comming up to you with good wishes, that you may not even get to the food table. (Yeah, who wants to eat before you put on your wedding dress). Make sure that you maid of honor, brings food to you. Important.!!

Best wished to you and you new hubby

Happy wishes, Lisa

I have fine, thin hair. It has not always been that way.

I would suggest that you check you folic acid and b-12, and perhaps take supplements and perhaps some iron.

It is an ongoing process for me as I have been loosing my thin hair and noticed a lot of breakage.

I am hoping that my suppliments will help.

Also struggling with this as well.

Lisa

That seems to be a common thread among husbands!!!!! Can't wait til mine hears MY elf name!

No kidding, he also loves the 6 maidens dancing.

They would probally let you return it if you tell them you are allergic, I had the same problem with some lip sugar thing from supora and they took it back, I would think mac would be as customer friendly....

Well..................I came home and tried it on and it looked soooo good. Thought, hum, maybe I should just confirm the ingredients. Said something like crap and got the tissue out and scrubbed. Back to Burts for now until my gut settles down. (which will kick in sometime tomorrow).

We drove an hour and a half to take someone Christmas shopping and got excited about the MAC counter. Some people here have said that SOME MAC products are gluten free and in my ecstasy, I got slack.

I should have known better.

Freckles Snow Bunny...........Hubby likes this one. , but then, his thoughts are not as pure as snow.

Fifteen dollars down the tube (pardon the pun).

Mac Amplified Creme Lipstick contains WHEAT GERM EXTRACT.

Just thought I'd pass it on. Dose anyone know what other lipsticks from MAC do not contain gluten.

Not happy with me right now,

Ann:

If I may offer a question? Why is it that many doctors are so ill informed on Celiac when it goes 97% undiagnosed?

Upon dx's by a GI, I was so unhappy with my PM Doctor, after 20 year, and chose another. He ran blood work on me after being gluten free for three months, which of course resulted in a neg. test. (I was confirmed by a biopsy and endoscopy). He told me that he had no clue was was wrong with me, because my blood work was negative........well, duh. He then suggested Lexipro.

Why is it so difficult for doctors to consider Celiac? Millions of people have been told that they have IBS and simple blood work could possibly save a life. I am totally mystified.

I appreciate your listening and grateful for your presence.

Lisa

If, in the US, the product says that it is gluten fee (roll it over and verify for yourself), it should be gluten free.

If it says "Wheat Free", it will not be required to list barley, rye, malt and oats for some.(other gluten ingredients)

Gluten free labels mean that it should be safe to consume.

In other words:

Gluten free - great

Wheat Free- check for other gluten additives.

Hope this helps

Mitch:

I can answer for myself and maybe others have similar issues. I tend to "graze" all day. I nibble here and there constantly all day. I do not eat big meals as it makes me feel uncomfortable. It seems to help me.

Perhaps you have excess stomach acid that causes the nausea and the food intake settles you stomach.

If your son has been dx's, I would consider that you may carry the gene and may be pre-disposed as well.

I would suggest that you do some more research and read more of these posts. It will be extremely informative.

Let me also say, that there are no silly questions on this site. We have newbies, a lot of people searching for answers and lots of folks with a vast amount of knowledge......all willing to be helpful.

Feel free to ask away.

Lisa

True.... an overuse of antacids can cause symptoms similar to being glutened with gas, bloating, cramping, nausea and the big rush to the bathroon with the big "D".

Has anyone heard of Frey's Syndrome? It is the result of damage to the parotid gland (saliva) and the symptoms result in gustatory hyperhidrosis (perspiring while eating or shortly after).

Could this be associated with Celiac or autoimmune diseases?

I don't expect many replies, but I sure would like to hear from anyone who has ever heard of this.

Thanks,

Lisa

Christina:

Welcome to the board and my I say that Anabelle is a lovely name.

I had constipation issues before my Celiac was triggered and I believe it is common among us.

If you intend for Annabelle to go gluten free and dairy free, you have just hit a gold mine of information that can be found no other than here.

We have a lot of extremely knowledge people from all over the world.

To begin your search...Search here under Members and find "nini", and click on her beginners list. She has compiles many files that are invaluable to beginners. When you begin this diet, it is also important to check her lotions, glosses/lipstick (8yrs), shampoo and toothpaste, in that anything that can get into here mouth can be ingested.

It rather overwhelming in the beginning, with lots to learn, but it is very much doable. We are here to answer any question you make have.

Read as much as you can from past post and please stay in touch.

Lisa