nettiebeads

My son got a little chalk board for his birthday this past weekend. I have no idea what chalk is made out of. Is it safe for celiacs??

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It is usually made up of gypsum, a mineral so it is safe.

Or did some of you just do the diet to see if it helped.

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I am in the very very small minority in that I had been sick 6 WEEKS (!) before going to my dr. re: my D. He took me off of gluten immediately, and I improved w/in a week. He told me it was indeed celiac, not wheat sensitivity or anything. I mentioned this to my current gp as my former has since retired. He wasn't surprised because he knew my former dr was an excellent diagnostician (small community).

He says he is feeling better. He hasn't had any belly aches and it looks like he gained 2 pounds already! He hasn't been very gassy either. My younger boys were diagnosed the same time as Kevin.  There belly aches are getting better too. They didn't go as long as my oldest with celiac so I believe there damage isn't as bad.

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Very glad to hear that! But I would try to leave some questions for your GI; if she's a good dr. she would understand your concerns and worries and address them w/o waiting for your next appt by having her nurse call you back or leave a written recommendation with the receiptionist for you to pick up later.

Am having trouble getting gluten-free food and have lost a lot of weight...about 3 clothes sizes.

I have gone from mega pain to mega depression and Im sure for my family it must be hell on wheels.

anyway just wanted to say hi and any help would be appreciated (sick of the dr.....mad at him...had my bloods with posotive celiac disease for eight weeks and did not let me know...and me eating tons of gluten the whole time and literally screaming in pain duriing bad attacks)

Tis great to find a place where I know people will understand.

Must go gotta go to the loo b4 i leave for work.

Have a great day

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I agree it is great to find a forum where everyone can say "Been there, I totally understand" And to know that you could have started healing a whole lot sooner (two months) but didn't because someone didn't have a simple human courtesy to say you have a sever autoimmune disorder is criminal, in my mind. Hello, they are in the HEALTH profession!!!!!

Anyhow, you can simply tweak a lot of your favorite foods to be gluten-free. Like chicken pot pie - use cornstarch for thickening instead of flour. Use mashed potatoes for the topping instead of crust. You just have to look at things and add more thought, but after awhile it will become second nature. Beware of hidden gluten as in glues, cosmetics and shampoos. But you will start to feel better, keep us posted!

Oh dear... sorry you are feeling so badly, but I honestly do think you have your answer. Yes you are  gluten intolerant. Your body tells you so everytime you test yourself... Honestly you don't need a medical dr. to tell you this.  Listen to your body, you know more about your own body than any medical dr. is going to know.

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I agree also. By the way, why is everyone so hung up with a test for dx? Remember, these tests are relatively new to medicine, Celiac has been around for much much longer than the medical tests. The diet challenge is a proven diagnostic tool and you have what is termed a positive diet challenge. That was how I was diagnosed 9 years ago. I know I could do the bloodwork and DNA and all that happy stuff still, but so long as I'm gluten-free, I'm healthy and that's all that matters. And as far "testing" yourself, don't sweat it. It's part of being a newbie to celiac disease and denial. After awhile, you will come to associate ALL of the negative side effects whenever you see some food from your former life that you will gladly forego it. Trust me, I've (we've) been there. Don't beat yourself up about it; you are human.

Since Kevin's colonoscopy and scope the Dr. said to start the gluten free diet. I did that but is there more I should do to help him heal? He is anemic, I'm assuming from his ulcerated intestine's. I wonder if he should have a suppliment or probiotic. I have a multi vitamin w/flouride but they are so brightly colored and I'm not sure if they have gluten. I don't give them to him. I feel like he needs something but the GI didn't say. I go back to her in 3 weeks.

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I'm sure you can call your GI and leave a message with her nurse with all of these questions. It does take time to heal, youth is on his side. Just make sure his calories are high protein/high iron to help his anemia, with vita C to help his body absorb the iron. And because of his malabsorption, you may want to ask about a multi vitamin/multi MINERAL supplement. Minerals are often overlooked, but very important too. Is he starting to feel better, I hope?

If I had a dollar from every person who didn't know that "white flour" had wheat in it..............

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This thread makes me laugh at all the times I've had to educate people about what has flour/gluten in it. My office is right off of the kitchen. Several ladies will go next door to the grocery store (we're in a strip mall) and come back with lots of goodies (?) Like cookie dough ice cream AND cookies! They'll offer me one, and I'll say no I can't have that, then they'll offer me the other! Hello!! cookie dough and cookies have exactly the same ingredients! or offer crackers or something else and always surprised that they contain wheat. I can't get mad or anything, they are being generous, even if I can't eat what's being offered.

Doesn't a celiac need a haz-mat suit to enter a dunkin donuts??

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Good one!!!

I do know that when I've been glutened my perceptions are radically skewed. My only saving grace is that I'm already on zoloft and I know that the new depression is temporary.

My toddler tested positive for DQ2 ,negative for DQ8 and the Celiac Panel was negative. He responded right away to the gluten-free diet. I dont want him biopsied. Is this considered Celiac? Im treating it as such. Thanks for any input..

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Why put him through a procedure when he's already responding to the gluten-free diet. It's considered a positive diet challenge.

It does take a long time to heal. There are many variables as to length of time to heal. How much total damage was done to your villi? What is phsiological makeup? Do you normally heal slowly or fast? Remember, when you slip-up, you are redamaging your villi so it's a step backwards (or three). But 6 weeks into the gluten-free diet and you feel improvements so you are on the right track. Patience, dear, patience. If you read some other posts, many people didn't feel near normal until a year after going gluten-free. I still slip up occasionally and each reaction seems a little different. Sometimes just the D and not much else. Other times no D, but painful gas. Still other times very little physical symptoms, but the anger, depression and fatigue. It's a fun little disease (or disorder as some prefer to call it) isn't it?

I am using rice flour for my breakfast breads.I want to know if you absolutely have to use rice flour or can you use another flour in its place.For instance,if a recipe calls for x amount of rice flour and x amount of tapioca flour,can I use  a different flour in place of the rice flour?I just cannot get accustomed to the "sandy" feel of rice flour.Are there any recipes for bread that do not call for rice flour?

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I used to bake a lot before celiac disease. Now I have fun experimenting with different flours and binders and such. Soy flour makes a very tender bread product. I use some rice as an extender - it's much cheaper than some of the others. Potato flour is very dry. Since most experiments are edible, write down what you do as you go along so if it's a success you can repeat it or if you want to tweak it some more you have a good starting point. Have fun!!

Does anyone have a celiac in their family with mental illness?  I have read that schizophrenia may be associated.  Anyone experienced this?  Curious b.c we may be dealing with this situation in our family.....  Thanks for any insight.

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No one else in my immediate family has celiac disease, but my mother's brother was definitly schizophrenic and one of her aunts was "sent away" (Remember, way back when mental illness was hushed up". I suspect my celiac disease came from my mother's side. No conclusive evidence, other than she's 100% Swedish.

I'm not Spanish and I have celiac disease. I believe most of the medical community thinks it's those with NORTHERN European heritage that have the problem. Like Swedes (me - 50% swedish).

A (good) dr. should never laugh at a patient's desire to see a specialist. I don't understand your dr at all. There is no logic in his thinking - okay, celiac disease is a known autoimmune disorder that can be dx through many ways (blood, biopsy and diet challenge) but where is the proof that all of your symptoms are caused by reading the internet? You went to the internet to look for answers to your symptoms. You didn't say "ooh that looks like a fun symptom - I think I'll have very painful gas and a distended tummy tonight" Forgive my rant.

We believe you. What is your insurance like? Can you go to a GI w/o a referral?

Do you have to stay with this dr? Keep us posted.

I think Nini's advice is very good. If you have had some success with the gluten-free diet, then I strongly suspect celiac disease. But there may be someother problems probably caused by celiac disease that have to be addressed.

Off the subject, my 3rd ex was a huge rush fan, now I can't listen to them.

My oldest son has the same fruit allergy (sounds the same), he is allergic to apples, pears, peaches, plums, cherries, apple cider.  The allergist said it is actually the "tree" that he is allergic to and not the fruit, but said why bother eating the fruit since he will still have the bad reactions like you talked about.  The allergist said if he cooked the fruit he would be ok.  He also mentioned that people with this allergy often have trouble with raw carrots and celery.

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I vaguely remember studying the immune system in biology 101 and found it was a most interesting topic. Advanced medicine and research still can't figure out why people get allergic reactions to some things, but not others, and allergies do run in families, but the different members will have different allergies. My instructor said that if the why of allergic responses was ever discovered, that the person probably would get a nobel prize for medicine.

Hi,

I went to the doctor with some gastro-intestingal issues.  I have also been really tired lately.  I also have problems with my thyroid that require Synthroid.  Anyway, she is testing me for Celiac disease.  I have never heard of it before.  I have been reading everything on all the various sites since yesterday.  I certainly don't have any of the extreme symptoms that I see by so many on the site. 

No, you don't have to have any extreme symptoms for it to be celiac disease. Some people can be asymptomatic and still have celiac disease. There are about 200 symptoms and all of them can appear at different levels - very mild to severe. I think you are blessed to have a dr. who went straight to the not-so-mainstream dx of IBS. When will you be tested? and when will you have the results?

[(usually my left one that is most bothersome, kind of weird that it is not symmetrical). Anyway, nice to know that I wasn't the only one with these odder symptoms.

Here's an ignorant question - what is fibromyalgia? Is that related to your celiac disease?

Wandering Hermit, I know what you mean. 

This disease makes me a bit like a freak.

The other side of the coin is when some people do understand and make a big deal out of going somewhere where you CAN eat.  Then I feel really guilty about being such a bother.  It embarrasses me.

So much easier just to stay at home.  I won't go anywhere anymore.

Wonder if we'll ever get used to it?

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I've resigned myself to it. I don't eat out much, not worth the worry and hassle. Decline lunch invites, eat at my desk, don't bother to explain anymore. I like to give people the benefit of the doubt that maybe they're just trying to be helpful and want to understand, but I'm tired of explaining it so I just don't. It's just a fact of my life and has become routine for me that I'm pretty used to it. You can't wish this away, so why dwell on it? Life goes on...

That's great!!! Job well done!

Alright nettiebeads, why on earth would you even want to eat a raw egg yolk??

Well, undercooked as in sunnyside up, and in egg nog.

I've tested positive to egg allergy (both whites and yolks) and I really feel dizzy if I eat anything with egg in it, but I'm fine with chicken meat.  Why is this?  What is going on chemically between the two that makes my body react differently to them?

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I love this forum because now I KNOW I'm not crazy! (had a CT of my head not too long ago. It was normal. My husband wants a 2nd opinion ) Anyhow, I can't eat raw egg yolks, but cooked solid I can. Albumin hasn't ever bothered me, or at least not that I noticed. I absolutely cannot have chicken fat. Period. But white chicken meat is no problem. I know there is a protein I cannot handle, but don't know what it is. I just live with it.

[ Are there other words for 'gluten' that I should be looking for?

Tiffany

Way, way too risky.

This doctor said he hadn't seen celiac in almost 30 years. I was totally, totally stunned. And kind of pissed too, if I'm allowed to say that...

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You're allowed to say anything you want here. ( Except the s**t word which automatically gets transposed to poop) If your doc hasn't seen celiac disease in 30 years I doubt he's been looking very hard. 1 out of 133 is est. to have it now.