neesee

Brian,

I truely apologize. I've actually been very concerned about your condition. I really hope your drs. haven't settled on refractory sprue because I'm not sure all the facts fit. You don't have the genes and you have not responded to the diet. I'm not at all sure what kind of tests you have really had. I know if I were in your situation, I'd keep pushing the drs. for answers.

Unfortunately, we are all victims of our drs. incompetence from time to time. To diagnose you with refractory sprue without investigating further is incompetence. Please don't accept this diagnosis. Keep searching for answers.

neesee

happygirl

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Post #26

This message was posted: Jan 26 2007, 06:20 PM

Brian,

Thanks for sharing the information.

So you had positive bloodwork (including tTG?), a positive biopsy will villous atrophy, but you don't have either DQ2 or DQ8? You ARE special, then!!!!!!!

I think at some point, there was another non-gene person on the board. I dont think they are around that often.

Malabsorption is not solely caused by Celiac, so it in itself does not diagnose Celiac.

(Do not think at all that I am questioning your diagnosis, I don't really care why someone decides -or has it decided for them by test results!-that gluten is bad for them, I am happy they have found the answer. I'm just interested in the path that people have gone on to figure it out!)

Laura

I know you saw this because you continued to post in this thread. Why didn't you respond to this?

neesee, What the hell does that mean? Are you calling me a liar? Did it ever occur to you that I haven't checked the post in a few days? I live off of IV nutrition because I have so much inflammation from what the doctor calls "severe continuous celiac disease". So considering that my physical condition was life-threatening a few months back, I don't see this as a joke. I was thoroughly tested, and the answer to Laura's question is yes. So I'd appreciate it if you would get off your high horse and mind your own business before you criticize.

GlutenWrangler

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Post #1

This message was posted: Jan 7 2007, 02:35 AM

Hey Everyone,

I was just wondering if you think positive Enterolab results count as an official diagnosis. Those of us diagnosed through Enterolab can't really say that our doctor diagnosed us. Just wondering what you think. Thanks,

-Brian

What am I to think when I find statements like this?

Brian, Did you have an endoscopy and repeat endoscopy that showed flattened villi?

Now that is the 100,000 dollar question. I doubt you will receive an answer. It seems to me, the 2 of you have been there and done this before. Maybe the fact that you don't get an answer is your answer.

It doesn't sound like your dr is too awfully concerned at this point. However, dropping a few lbs as well as cutting back on refined carbs and sugar will do a whole lot to drop your blood sugar back to normal. Walking is also excellent for blood sugar control.

neesee

I don't sleep well at all. I've been gluten free for 20 years. Oh well.

Actually, when I was diagnosed I was very deficient in vitamin A. When it improved, I did start to sleep somewhat better. I took 20,000 ius of aquasol A for a long time.

My problem now is stress and menopause.

neesee

Brian,

If I recall this correctly aren't you Enterolab diagnosed, and aren't you the one who does not have celiac genes?

I don't understand your drs. letting you run down like this. Hopefully they are checking for other things as well as celiac.

I'm very concerned for you.

Denise

I'm 4'10" and a size 1. It's great because I can share clothes with my 7 year old!

Be careful when you pick your child up at school. When my dd was 7, I went to the school to bring her home and a teacher hollered at me and tried to stick me in line for the bus The school only had grades 1-4.

neesee

Hi Joyous

I'm 4' 10 1/2 inches tall. I wear size 2 1/2 sneakers and casual shoes. I wear size 4B in heels. The dress shoes are difficult to find. When I get desperate, I drive to Bay City to Allans shoes. They can surround me with any kind of shoe I could possibly want in my size. I could lose my mind over so much to chose from. Last time I bought 3 pairs. LOL!

By the way, I think you are the second from the left. Is that right?

I suppose it's fun to be small, but it can be a pain too. It least I'm unique. Oh well, it's best to be happy with what we are.

neesee

Lactose

Tomatoes

Nutrasweet

Splenda

I'm sure the kids will have fun with this stuff. My grandson is 8,will be 9 in January. I know he'd get a kick outta all those things.

Happy Birthday to Sean!

Today is dd's birthday too. She is 32 I feel old! lol

neesee

Dh worked with a man whose dr. told him the same thing about pot. He had miserable stomach and intestinal problems. His dr. explained that because pot is not regulated by the government, the growers spary it with all sorts of pesticides and insecticedes.When it is smoked, it is injested and poisons the digestive system.

neesee

Maybe I just don't understand gene tests, But from what I have read a person needs both an alpha allele and a beta allele to make a celiac gene. According to Dr. Greene's book these are the celiac genes.

DQ A1 *0501 and DQ B1 *0201 make up DQ 2

DQ A1 *0301 and DQ B1 * 0302 make up DQ 8

Enteolab only seems to list DQ B . Why is that? what am I missing?

neesee

I was running a fever of about 101 degrees every day starting at midafternoon into the evening until I was hospitalized. From what I understand, I was pretty far gone at that point. I was sick for several yrs. before I started running fevers. A random glutening does not cause a fever now that I am healed.

neesee

sorry double post

Walter

Didn't you say you were diagnosed with crohns as well as celiac? Maybe its the crohns that is the problem. What is your dr doing about. Did he give you any medication for it?

My dr. tells me a healthy cholesterol is over 120 and under 200. Mine is 151 after 20 yrs of being gluten-free. At diagnosis it was 96.

That said, I failed my stress test last summer. I have ischemia. My large arteries are clear, but my cardiologist feels I have small artery disease. He wanted to take me to the cath lab. I am scared to

death of that ,so I told him no. So I'll be having another stress test in six months.

Half the people who suffer heart attacks do have normal cholesterol.

neesee

****

Hi Melmelsmom,

It plain takes time to heal when you are as sick as your daughter is. I'm sure you are doing nothing wrong. It took me a little over a year to stat to gain any weight and to feel like I was going to live afterall.

Denise

Maybe it's time for you to see your Dr. again.

My son has hypertrophic cardiomyopathy. He also has a posterior fossa sub arachnoid brain cyst. I have no idea if my celiac was to blame for this or not. His neurosurgeon assures me I didn't cause this.

What kind of cardiomyopathy do you have? From what I understand it's dialated cardiomyopathy that is associated with celiac

neesee

HI Ali,

When I was diagnosed, back in the dark ages, I was given information to never drink beverages that come out of a machine. You know the ones, where the cup comes down and then the liquid follows. I was taught what comes out of a bottle is safe if the ingredients are gluten-free.

I don't know if the machine blends aren't gluten-free or just contaminated.

neesee

Well, curiosity got the best of me, so I checked out the Sephora website. Bare escentuals does have a new lipstick, and it does have barley listed as an ingredient. Wow, I'm sure glad you posted about this. I probably wouldn't have checked. I've been gluten-free for so long now I sometimes get over confidante about things. Thank you for the warning.

neesee

Bare escentuals has a lipgloss called big buxom lips. It does tend to make your lips feel tingly or slightly burned. It's supposed to make your lips appear fuller. I have no idea what the ingredients are in that one. I do know all the rest of their lip products seem to be gluten-free.

B.E. is my favorite makeup, so I feel confidante in saying the only products that I have encountered that have gluten are the Rare minerals nighttime treatment and the Big Tease mascara. The Big Buxom lipgloss is the only one I don't have and ingredient list for.

For what it's worth, I don't like that lipgloss at all!

neesee

I found this in Dr Green's book.

HLA-DQ2 is encoded by alleles DQA1*05 and DQB*02.

DQ8 is encoded by alleles DQB1*0302 and DQA1*03.

I hope this helps.

neesee