32 replies to this topic

[kalo]

My doctor ordered a couple of blood tests. I just got the results. The first test was negative so they didn't even run the second. I can post what they were if anyone is interested. anyways, there was an immediate let down. But then I knew about the stool test so I will wait till that gets done. Thought I'd let everyone know. Hugs, Carol B

[kalo]

My doctor ordered to blood tests. The first one was negative so they didn't even bother to do the second one. Don't think he ordered this TTG or whatever that is. I experienced a let down at first being as how I was really hoping I'd found something at last. But I know that negative doesn't mean I don't have it so I'll wait. Still waiting for the stool test to come from enterolabs. I ordered it Sunday night and it's Friday. If it's not here today I'll e-mail them. Does it come mail or UPS? Thanks. Hugs, Carol B (we all need a hug now and then. :-))

[gf4life]

Mine came in the mail, and then you send it back in the pre-paid Airbourne Express pack. It can take up to a week to get the kit, but it is usually about 3-4 days.

Just curious what test was negative? All my bloodtests were negative, but positives on the stool and gene tests through Enterolab. Was it the TTG, EMA, the IgA Gliadin or the IgG Gliadin?

God bless,
Mariann

[kalo]

Hi Mariann. Enterolabs told me that they had an influx of requests for their tests. More than usual I guess so it will be a week and a half probably before I get it. That's from the time I ordered it which was last Sunday night. As to the blood work this is what the paper says.

Reticulin Antibody, IgA with Reflex to Titer/Reticulin Ab, IgA Screen. This test was negative. The one they didn't run was Reticulin Ab, IgA Titer (NOT DONE) and then it says "client Comments": include anti gliadin IGG IGA IGM other info: Includes Antigliadin IGG

I've read here about the TTG test and I'm suprised my doctor didn't order it. I will have to ask him about that. Guess it doesn't matter as the stool test is more accurate. Right? Thanks so much. Hugs, Carol B

[gf4life]

From what I've read, the reticulin test is almost never used anymore. Either the TTG or the EMA (Anti-Endomysial Antibody) is used, and in combination with the IgA & IgG Gliadin tests it gives them a good idea of whether or not to test further with the endoscopy and or gene tests. The reticulin is sometimes included in a Celiac panel of tests, but I am pretty sure it is pointless to use it as the only test when checking for Celiac Disease. You may want to ask your doctor why they only did that test.

God bless,
Mariann

[kalo]

Thanks Mariann. I think I will print this out and take it to him. Hugs, Carol B

[kalo]

Hi Nita. Again I want to mention enterolabs. Do a search. They have a lot of info on their site. The test does not need a doctors prescription so you pay out of pocket but maybe you could submit it to your insurance afterward. I ordered their most comprehensive test which is about 4 tests in one. They are including a milk test. Cost including shipping was $368. In my case it will be SO WORTH IT if it comes back positive (which I'm hoping it does). Hugs, Carol B

[kalo]

Hi Nita. I'm just learning all this myself and haven't been formally diagnosed yet. I do understand the cross contamination though. If you toast something in your familys toaster it will pick up the crumbs left behind. Even the SMALLEST amount of gluten can cause problems. Even if you don't notice it your intestines are still being damaged. Amazing I know. My husband and I went for breakfast last week to spend time together. I ordered a side of ham ans a fruit bowl. I mentioned that the ham may not be on my to eat list (it was grilled) and he really looked at me like I had rocks in my head. The thing is, if they cooked something with gluten and didn't clean it off before they cooked the ham. Whenever you handle anything such as your dog/cat food just wash your hands. I have a problem in that I've been so sick for so long (chronic fatigue/fibro etc) that my kitchen is a mess. I really need to get it cleaned up. Yesterday we had communion at church (I'm a Christian) and I ate the little cracker (it has a special meaning for me). When I come back positive I will ask Pastor Pat about bringing my own rice cracker. I relly don't think there will be a problem. This is a good group for helping us figure things out. Keep us posted. I'm interested in how you do. Hoping you can get that blood test reimbursed so you can do the stool test. Hugs, Carol B

[tarnalberry]

Nita,

As far as cooking for the rest of the family - depending on the cooking you do, and how much practice you've had at cooking, cooking gluten-free for the whole family really isn't very hard - nor does it have to be more expensive. There are a LOT of foods that are normally gluten-free; ones that people are used to and like. In all the entertaining and dinner parties I do, I keep everything gluten-free.

For instance, for breakfast:
* veggie omlette (or any other kind of omlette)
* smoothie
* fresh fruit and yogurt
* rice cakes w/ peanut butter
* (if you want to buy any gluten-free flours) muffins or quick breads

For lunch (I'm thinking packable in a small cooler, since I take my lunch to work):
* veggies with dip (bean dip, hummus, guacamole, salsa, etc.)
* cheese
* salads (bean salad, green salad, tuna salad, chicken salad, marinated vegetable salad, tomato salad, etc.)
* chicken/beef/pork/beans/etc wrapped in corn tortillas (soft tacos)
* fresh fruit
* nuts
* leftovers (my personal favorite)

For dinner (I usually do something fairly simple myself, and healthy, that my husband will also eat (he's picky)):
* chinese style stir fries (mostly vegetables, sometimes some chicken/pork/beef/fish) served over rice
* baked chicken with onions, carrots and potatoes and italian spices
* grilled meat (my husband's favorite - baby back pork ribs, chicken (breast or leg), salmon, trout, shrimp, tri tip, pork chops, pork tenderloin, etc.)
* sauteed vegetables (usually three or four vegetables sauteed together)
* roasted rosemary potatoes
* mashed potatoes
* sweet potato fries (baked)
* green salad
* vegetable appetizers (usually bell pepper, carrots, and zucchini)
* salad nicoise (takes more time, but yummy)
* barbecued corn
* stew
* bean soup
* spinach salad
* fuit salad

All of those things are pretty much automatically gluten-free (assuming you've got gluten-free soy sauce - and I plan to use that gluten-free teriyaki recipe I posted more on those meats). I've served that, and other things (like millet - which isn't too pricey and is gluten-free - and gluten-free pasta and gluten-free cookies) at dinner parties as well. But sticking to dishes that are naturally gluten-free, it's not that hard for you to not have to cook a dish with gluten.

Another thing to consider is that, if it's that much trouble cooking something with gluten in it, perhaps the people eating the gluten should be cooking the gluten. If my husband wants wheat pancakes, he has to make them himself. (I know, this won't work if you're a single mom with kids too young to cook.) And our kitchen isn't completely gluten-free - my husband has a spot for his cereal and crackers, and one cutting board for bread (and one section of the counter for bread), but none of the actual cooking gets any gluten.

I'm not trying to push anyone to convert their families; I'm sorry if I sound pushy in my post (I tend to do that too often :-( ). I'm just often surprised by how many people here seem to not want to serve their family gluten-free foods or think other people won't like any of it, particularly when I find it fairly easy to accomodate in most of my cooking.

[GFdoc]

Nita B. - if you had an endoscopy done that showed flattened villi - that is the definition of Celiac Disease! Please ask your doctor to contact the University of Chicago Celiac Program at (773)702-7593, or the University of Maryland program to get more information about celiac disease. It's best for the doctor to get information from the top sources- not from websites and chat rooms. I would not do further testing of any sort at this time - you have celiac disease based on the most accurate test - the biopsy. Your years of IBS may in fact have been celiac disease, and the blood tests you had done 8 yrs ago were probably not very accurate --- the blood tests done now (if your doctor orders the correct ones) are much more accurate, but only if you already have significant intestinal damage.

[kalo]

I think Sarah is right about your biospy. I just never thought of that as I'm still new to all this. There is no other way for your villi to get damaged like that so you are on the right track. BEST WISHES on your road to good health. Hugs, Carol B

[Chantalle]

Well, I feel a bit sad right now! Reading all this helps me a lot. My blood test was negative too (I'd like to ask her for a copy of it). It is nice to read that others feel as I did. I felt like she was angry at me for being so down that the test was negative! I began to feel like I was nuts myself. Now at least I know that there are others that feel this way. To me, it would have been an answer to all this awful pain, diarrhea, gas, etc. I really hate it.

She tested me for lactose intolerance and I'm positive for that. I'm struggling with that. If I even have a cookie with whey powder in it I suffer. I took 2 Lactaid pills to see if that would be enough and it wasn't maybe. I don't know - I'm suffering right now as a matter of fact. Thing is, I took 2 Lactaid pills and only had one small cookie and still feel awful. Thought it would take more than that to make me sick.

Anyway, she referred me to a gastroenterologist and the wait is 14 months! That's because they have ruled it as "routine" based on the fact my bloodwork for celiac came back negative (she really didn't believe I have it and said so - told me I don't have the classic symptoms! My feeling on that is that she would obviously need to suffer all this since 3 yrs. old, as I have, to really know how I feel! She signed it off, meaning she agrees there is no hurry to get me in to see the gastro.

I felt really dejected...

I will have to think about getting this test done at Enterolabs, however I'm in Canada and don't know if my doctor would believe the results if they were positive anyway. Doesn't really matter I guess, if she does or not, as I could still go gluten-free. The advantage to having a firm diagnosis of celiac is that in Canada we can get a tax right-off for all gluten-free food bought under the disability act. It would certainly make things easier economically if that were so!

Well - guess I really wanted to comment on the posts here that show similar results as mine. Maybe once I get the dairy thing under control, I'll feel better and it won't be gluten afterall!

Chantalle