neesee

Too much stomach acid gives me a metallic taste in my mouth. When I was first diagnosed, I was on a heavy dose of zantac (300 mg) twice a day. It helped a lot!

I hope you figure it out and feel better soon.

neesee

I love Glutino bagels. Go ahead and buy them. You won't be sorry. I like mine toasted with cream cheese and chives.

neesee

I didn't have any trouble at all. The dietary department sent someone out to buy gluten-free products just for me so they would be fresh. They don't see a lot of celiac patients, so they have to stock up when they get one. Everything they served me was perfect. They also took measures to protect me from cross contamination. I was very pleased.

neesee

I'm sorry Shay. I'm adding my prayers for your brother too!

neesee

All Enfamil forumlas are gluten-free. Open Original Shared Link

neesee

(hes O negative and Im O postive).

If that's the case, you don't need a RhoGam shot. If you are o neg then you need the shot. It doesn't matter what his blood type is.

neesee

Could you possibly be HLA-DR5/DR7? In other words, could you have inheritited half a gene from each parent? Open Original Shared Link

neesee

I got very thin. 78 lbs. My total cholesterol was 96.

neesee

Hi,

I am not diagnosed but I have a question about this eye thing that I just read a thread on. For the past 2-3 years I have been getting this itchy, red, puffy, almost cartoon-like eyelids. I thought that it was just allergies (even though I have NEVER had allergies before). My mom gave me some steroid cream and I went on my way. So for the past few days my eyes have been getting progressively more itchy, swollen, scaley etc. I use the same makeup that I have for years(everyday the same stuff) and this only comes randomly. When I first got it, it was spring time so I thought of course it was allergies. It is now End of November and cold and its happening again. Does anyone think this could be related to celiac and if so would it come randomly even if I use the same makeup daily? Along with that, my eyes always seem to be red and bloodshot. It never fails. My eye doctor said that they were prob just dry and to use some artificial tears. Does this sound familiar to anybody?

Thanks alot!

I had chronic blepheritis as a child. My Dr. prescribed an antibiotic ointment and good old vitamin A. It cleared right up. My eyes are still sensative and I still need extra beta carotene.

neesee

Great picture! What a handsome man, your dad

Thank you Patti. He was a sweet, kind, wonderful dad too.

That's great that you were able to find your dad in that picture. Every time there is a book or TV show about D-Day, I scour the pics to see my dad ended up in one of them. No luck so far.

My brother actually has this picture. When my dad died, my brother got dad's navy pictures and I got their wedding pictures. I was surprised to see this online however.

That is so cool you found him. They all look like little boys to me.

They were young Shay! Dad was drafted before he finished high school.

Thanks for looking ladies. I loved him very much.

neesee

http://www.ussfletcher.org/afteng1.webp

Couldn't sleep so I thought I'd do a little online searching. I found this picture of my dad on the uss Fletcher in 1945. He is the one kneeling on the right hand side.

neesee

I would amend this to say "all women who are, or may become pregnant". And still, it would be true whether or not you know you have Celiac or gluten intolerance or if you smoke or whatever.

Frankly, I think you're splitting hairs. You knew what I meant. Besides, if you're already pregnant it might already be too late to correct a folic acid deficiency.

Open Original Shared Link

neesee

There is no reason to test for things that are not suggestive of a problem. It's unnecessary time and expense and overuse of the medical system. If you have reason to believe you have a medical issue, you should go to your doctor, regardless of the underlying conditions.

All women of childbearing age should be aware of their vitamin and mineral levels. Folic acid in particular.

My son has a posterior fossa sub arachnoid cyst. He had 3 neurosugeries in 2001. It was drained then shunted and then he needed a shunt revision. Did my poor health cause this? I don't know. But I do know when I was diagnosed, I had a megaloblastic anemia with extermely low folic acid.

In fact for several years I took 50,000ius of aquasol A, 50,000ius of drisdol, a b vitamin supplement, folic acid and from time to time I needed shots of b12. Last I knew, my D level was 15. Dr said that was low, but I don't know the signifigance of the number. My original dr retired and I've had a difficult time finding a new one who knows what to do for a celiac.

Peace,

neesee

I wish there was a forum for people who have gluten intolerance without the celiac genetics, because I feel as if there is a definite prejudice against those who do not have celiac here. Is there one?

Should I leave? I wouldn't dare say a thing like that

I've never taken a survey, but I think I'm in the minority here as it is. I have a feeling it's the ones who are diagnosed that are looked down upon. I say very little for fear I'll offend someone as it is.

neesee

I know you said you didn't want to use a liquid, but I use Johnson's baby wash for personal areas. I've become very sensitive this past summer. I was on a lot of anitbiotics and they messed me up. For everything else, I like unscented Dove.

neesee

I guess I'm lucky. My most favorite dinner in the whole world has always been roast beef with oven roasted potatoes, carrots and onions. I always chose this for my birthday dinner from the time I was just a little kid. Mom always cooked our favorite dinner for our birthdays. Now I have Namaste chocolate cake instead of gluten cake. That's the only difference. That and my mom has been gone for 24 years now

neesee

I think both of the candidates have good characters. I voted on the issues. Especially health care. It's shameful that a country like ours lets people go without proper medical care. We can spend billions killing innocent children and people in Iraq, but we won't take care of our own citizens medical needs. That needs to change. Unfortunately, I think health care is already dead in the water due to the bailout of the economy.

neesee

Again, let me point out, he has no reason to publish. None. He has a product, and people buy it. For him to choose not to publish at this point says nothing about his character, good, or bad. He's just a guy with something to sell.

Many people on this site have said that just feeling better without gluten isn't enough for them; they want a test. Well, he provides a test. Everyone is happy.

Then maybe it's time for people to stop endorsing his test. If we manage to shut down his business, he might just be forced to publish. That is... if he really has a valid test.

neesee

neesee, your approach to Dr. Fine sounds as though you have an ax to grind, which doesn't make you sound unbiased and fair. What if he can't publish because of corruption in the industry? Knowing what I do, that's my first assumption.

And I'd like to remind you that the"gold standard" of diagnosis by endoscopy is deeply flawed, as it only diagnoses late-stage celiac; under current medical practice, if your villi aren't visibly damaged (or if the doctor just happens to hit an undamaged patch), you are told not only that you don't have celiac but that gluten is not a problem.

It seems to me that Enterolab does a huge service to those who either have celiac or gluten intolerance but have negative biopsies.

Also, the figure of 1/133 having celiac is incorrect. The 2006 University of Chicago stated that 1/133 have already been diagnosed with celiac--after an average of 11 years of seeking a diagnosis. That implies that far more people actually have it--they just have not yet been diagnosed. And both the U of C study and several publications (including Against the Grain and Celiac Disease: a Hidden Epidemic say that the 1/133 figure is just the tip of the iceberg.

It just seems to me, if Dr. Fine is such a great and caring doctor he would want to share his information with the rest of the medical community. That way his testing could be more widely available to the public through their own personal physicians. Instead, he chooses to keep it in some obscure little lab in Texas where he is the only one who uses the test,and the only one who makes a profit. That makes me extremely suspicous of him and his motives. I don't get it. It can't be on the level.

neesee

mftnchn, I am not bashing you in any way. I will however bash Dr. Fine if I feel so inclined. I think he's a charlaton. He is making his money off the pain and misfortune of others. He needs to publish his findings to have any credibility.

neesee

I suppose what I should have said was:

If you have gone through traditional medicine channels and undergone a bunch of inconclusive tests, and then opt for Enterolab, and find out that you have the genes and have the symptoms, wouldn't it be reasonable to assume that you have Celiac Disease?

(Wow, that was a run-on sentence!)

I guess my point is this: if you've gone through a battery of testing and found no answers (negative blood tests, negative biopsy, 'normal' everything), but Enterolab tells you that you have the genes and are sensitive to gluten, it would make sense (to me) to go on the gluten free diet. I guess I don't really care what it's called, as long as I know how to treat it.

FWIW, I haven't used Enterolab, but I am curious about the gene testing, so I might go that route at some point.

If you've gone through all the tests and you know it isn't something more serious, why bother with enterolab. just go gluten-free. I think the gene aspect is very interesting too. but I'm a fussbudget and would prefer to be tested by a lab that tests for both the alpha and beta alleles. After all, it isn't impossible to have celiac with just the alpha allele alone. Rare, but not impossible.

neesee

Neesee, I am well aware of the limitations of Enterolab testing and do not speak of it as "gold standard" diagnosis to anyone. I say I have a clinical diagnosis of celiac. I have non-classic symptoms.

In my case, I did Enterolab testing on a whim, I was looking for an answer to chronic constipation. My results were starkly positive. Malabsorption over 1300, high levels on the gluten tests. I have two DQ2 genes which carries the highest possible risk for celiac. Had I been in the USA or a country where I could have gotten a blood test and reliable biopsy I would have done that next.

However, I was overseas for 10 months. Phone consults with two of my doctors. Both did NOT want me to wait that long to go gluten-free.

Since then the malabsorption has been confirmed by other testing, which showed it to be profound even after 9 months gluten-free. I have long term thyroid issues and other autoimmune conditions.

I have had a dietary response to gluten-free however, it isn't by itself clear cut due to other issues like lyme disease. After going gluten-free I had as many negative as positive changes, and started wide swings of being better then worse. Also I recently discovered that I cannot digest carbs, likely due to villa damage that has not been able to heal while I was still eating carbs. My response to the SCD diet has been huge and I have greatly stabilized since starting this in July.

My new GP looked over all of the testing and evidence and she said it was the most distinctively positive she had ever seen. None of my doctors want me to challenge with gluten to get further diagnosis. She ordered a bone scan (which was fine) and a routine colonoscopy, but saw no need to do an endoscopy or biopsy at this point. After a recent gluten exposure with a hidden source, I would agree that doing a gluten challenge for further diagnosis is not an option.

My point is that Enterolab testing can be a valid piece of the puzzle as we search out answers when used wisely and thoughtfully. There is no need in my opinion to bash someone/something that is helpful.

If you have never had an endoscopy, how do you know you have villi damage? It would have been cheaper just to give the gluten-free diet a try in you situation. Don't they have drs. overseas?

Well if you are feeling better I don't suppose it matters whether you have the gold standard diagnosis or not. I just wouldn't have spent the money on enterolab,but that's just me.

neesee

Just posing an honest question...........

If you have the genes, and you have the symptoms, wouldn't it be reasonable to assume that you actually have Celiac Disease?

Honestly? I suppose you could assume that. But that isn't necessarily your wisest option. A lot of diseases have very similar symptoms to celiac. A person's best bet is to seek out a medical doctor and get checked out properly. It could just save your life.

I thought I had a pretty bad glutening this past summer. Guess what? It was diverticulitis. Bad too!! I had my sigmoid colon and part of my descending colon removed. It was twisted, full of bleeding ulcers and infected diverticuli.

neesee

[quote name='mftnchn' date='Nov 7 2008, 08:09 PM' post='482625'

I would have not found out I was celiac without it.

D'you know what's really been bothering me? MLK said his dream was of a day when his children would be judged by the content of their character and not the color of their skin. And yet ALLLLL the freakin media coverage I see of Obama is about the color of his skin. I'd like to hear more about the content of his character, I don't care what color his skin is. I just feel like this presidency should be about more than race relations.

Somehow, I think he was elected because of the content of his character. As far as I know, african-americans are still a minority race in this country. That means people of all kinds of races voted for him. I did and I'm white.

It is historic because he has opened up the political world to all of us, not just white men. We are all Americans.

I hope the media cools it too.

neesee