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Need advice and sympathy......please.... Need advice and sympathy......please....

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Unread 06-21-2003, 02:57 PM
Need advice and sympathy......please....

Hi LaurLaur--I am glad you found this info interesting. Remember though that my doctor told me that most doctors, even gastroenterologists, are not aware of this test yet. You might check out that website, print out the lecture info (geared to the medical field) and give it to him, AND you and your daughter take the test on your own. Once you take the test, then you could give him the results, particularly if the test is positive for gluten sensitivity. It's my understanding that this test is only available through the Internet. Other blood tests may not show the gluten sensitivity even if you have it. The website explains all that. If you should have celiac, you could have gotten a lot of answers to the causes in the past and the accepted treatments wouldn't have worked because they would have been wrong. I have ordered the test for my whole family like I said. Then we'll go from there. For me, the treatment will take some time to have effect. My doctor explained that it was like peeling the layers of an onion, I'll see progress in a week, then more progress in 3 weeks, and so on. I read just today that the first week I could lose 8 or 10 lbs just from fluid retention/inflammation going away the first week of being gluten free. I'll keep you all posted.

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Unread 06-27-2003, 02:15 PM
Need advice and sympathy......please....

shirley, how is it going for you? I read about the disease more and they say a symptom is losing weight...but of course that is just one of the the symptoms. I will let you know what my blood work shows............if they let me know that is!
Unread 06-27-2003, 02:35 PM
Need advice and sympathy......please....

Hi LaurLaur,

I am having a couple of rough days going through gluten detoxification--sounds weird, but it's true. Very fatigued, nauseous, etc. Started Tuesday after I went off gluten on Saturday. Today is my best day since then, but I'm ready to go take a nap for a while. I am still planning to go on vacation on Sunday--on a motorcycle trip. We've been planning it for months. I am determined.

Actually weight loss from celiac was one of the older symptoms--it's more common for normal sized or overweight people to have celiac now. Like you said though, I still see weight loss listed, but not weight gain.

If your bloodwork says you do not have celiac, take the stool test on your own at, because the bloodwork is not always accurate whereas the stool test is.

I hope you get the answers you need soon. It's very hard to be in pain and not have the support of the people you need.

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Unread 06-30-2003, 06:40 AM
Need Advise and Sympathy.... Please

Hi UpAllNight,

Hope you are feeling better. It hasn't been too long since your surgery. Have you had your urine or kidneys checked? I was having the under the rib pain that was spasming to my back and ended up in the ER (6/22), because I've had so many complications since my complete hysterectomy 4/14. Ends up my white blood count was up, my temperature was .99 and I had a bad kidney infection (even though I had just had my urine checked the previous Wednesday by my PCP!). Infections can occur out of nowhere; you can be feeling o.k. the night or day before.

I also noticed that someone mentioned ulcers and Pepcid I think. I have used these a couple of times for this type of pain. I think both peptid ulcers and kidney type infections can feel similar. If you aren't have a kidney/urinary infection, you may want to be checked for peptid (sp?) ulcers if you haven't already.

Hope this helps. You may want to go to the ER if you suspect it's kidney related. They will assign you a doctor, run some tests and prescribe medications including pain if necessary. I've been to the ER 3 times in the past 2 months.

Good luck...
Unread 07-01-2003, 11:29 AM

Ok my blood work came out CD - but will prescribe something for bad pain/diarreah. Only prob is I have glaucoma and you are not suppose to take it with that. I don't know. Maybe I will go for the on line test...but then again maybe it's just IBS - my daughter has that and it can get pretty rough at times.

Either way, on Thurs I see the uro/gyno for my results from the urodynamic bladder testing. Maybe he can contribute something. In the meantime my lower back pain is resurfacing. My pain mgmt doctor responded to the letter I sent him. (I had been waiting 6 wks to hear back from him and left messages) He left long apology on my machine - but not calling him back till uro/gyno test results. I know I have an enterocele and that may be my back pain not the herniated discs I have....ugh - I just don't know where to go anymore.

Today I see eye dr for glaucoma check. I need to get another shot of cortisone in my foot (4 heel spurs and torn ligament) and then thurs Uro/gyno.............what a way to spend a summer. But I suppose it could be much worse.
Unread 07-07-2003, 08:17 PM
Need advice and sympathy......please....

Hi LaurLaur--Please take the online test. Both you and your daughter could have celiac--it is genetic. As I told you, the bloodwork and biopsies can often show negative, but you can still have gluten sensitivity. The new test, Gluten Stool Sensitivity Test, (6th one on the test list page on is 100% accurate according to my doctor. It's so easy, noninvasive, and for $99 a bargain I think. When you order it, you can request that they email you the insurance code info so you can submit it to insurance--just note that it in the comment part. Also, they give you a 10% discount if you order more than one test--the idea is that family members will want to be tested. You note that in the comment section also. If you want me to email me with questions, feel free. I had that diagnosis of IBS all my life and it was soooo wrong. I am already feeling much better on my gluten-free diet. I haven't had a headache since I started it and my BMs have returned to normal, just to name a few improvements in a little over two weeks.

Unread 07-08-2003, 02:43 PM
Need advice and sympathy......please....

Actually, I think I will take the online test....will order for me and my daughter. My question is do you think I will be able to then get treatment after I explain that I took this on my own? Another words, would the results get the same repect as if a "facility - doc ordered test" would?
Unread 07-08-2003, 04:56 PM
Need advice and sympathy......please....

Hi LaurLaur--I am so glad you are going to take the new test :. I do think your doctor will see the validity of it, but you will have to educate him. You can print out all the information from the website, especially the lecture info geared to doctors, and provide it to your doctor either before or with your lab results. I would suggest you provide all to him before you would actually meet with him to discuss the results. That would allow him to review the information beforehand and do any further research on his own if he would like, even contacting Dr. Fine who developed this test and set up the website. He is very accessible--he even emailed me back. (This all assumes that your test would be positive. If your test is negative, you really wouldn't need to share the info with your doctor at all since he's already tested you for celiac and knows that test was negative.) It does take 3 weeks after you submit the tests to get the results--just wanted to forewarn you about that. That time will pass quickly though. With the results of this test, you will know for sure if gluten is a factor. If it isn't, you'll keep going down the path your doctor has prescribed. If gluten is a factor, you can embark on a new road to recovery Remember that the results even with a gluten-free diet will not be instant. My doctor said it's like peeling the layers of an onion, feeling better at a week, then even better at three weeks, three months and so on. Also, ideally your current doctor or another doctor if he recommends someone else if you're diagnosed with celiac/gluten sensitivity will need to put you on a regimen of vitamins and supplements to build you back up. s Good luck, sweetie--keep us posted.


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