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Blood Tests
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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

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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. :-))

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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

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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

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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

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

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Hi,

I had the Celiaplus test, sent to Prometeus labs in SF, Ca. It came back negative, and the Dr. wasn't sure what I have. But through an upper endoscopy it showed celiac type lesions, with flattened villi. He still couldn't tell what I have, and has suggested trying the gluten-free diet. I also had a neg. blood test 8 years ago. I have been suffering from IBS for over 20 years! Well, maybe! I know nothing about the stool test, and the Dr. hadn't recommended it. Shoud I have it? The recent blood test cost $730.00!!!!!! He said it was kind of expensive, and I had no idea, and to come back neg. so that the two tests were inconclusive! I hope my insurance pays!!!!

Any other ideas, or just try the gluten-free diet, as he said?

Thanks for any help!

Nita

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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

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kalo,

Thank you so much for taking the time to reply! I may try the test. But, first I need to see if my insurance will pay for that expensive blood test! I'm just getting it submitted, and hope I hadn't needed to have it approved beforehand! So, not sure I want to spend more, just yet. I'm trying to get the hang of this very restrictive diet, in the meantime!

I have so much trouble understanding cross contamination, especially using the same toaster, for instance! I also feed cats, and a litter of kittens, and I'm handling their food, with wheat in it. Can that give me problems, also??? How would you ever cook for the rest of the family, without touching gluten foods?

Much appreciate the help!

Nita

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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

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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.

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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.

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Thank you so much Kalo, Tiffany, and Sara!

You here, are wonderful! It's so hard to try something new, and as restrictive as this! Also, family can't believe how restrictive it is, due to cross contaminants! I'm having a hard time with it, so can understand their reticence!

Tiffany, I appreciate the ideas for meals. It's just hubby and I. He will either eat what I fix, or have a tv dinner!!!!! One problem I thought I may encounter, is cooking once a week for two granddaughters. They love my spaghetti. I can try the gluten-free corn spaghetti, and hope it tastes okay to all. I also can make other things they like, for the most part, naturally gluten-free, as you say. And no, not too pushy! I do so need the help!

Sara, thanks for thinking the biopsy was enough for me to go on, for results. The Dr. has a hard time believing what it is, due to the current blood test coming back negative, from Prometheus. It is SUPPOSED to be accurate! So, now we have a positive looking biopsy, and a neg. blood test, with a reliable lab! Hmmmmm! I'm still trying the gluten-free diet, feel better part of the time, and don't want to spend more money, until I see if the blood test is covered by insurance. Maybe I'll have my answer, with the gluten-free diet before then!

Thanks to you all! I'd welcome any other tips!

Nita

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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

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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

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Hi Chantelle. If it's not a gluten free cookie you are eating then it may not be the dairy you are reacting to. Please DO the test from enterolabs. I found out in my search that only 10% of the worlds celiacs have the classic symptoms. Most doctors are not educated in this disease as they don't know how prevelent it is. You are right in that you can self diagnos and self treat. The other thing to do is to try the diet for 3 months and see what happens. If you feel better you have yo ur answer. The stool test would prevent you from doing that uneccessarily. Hugs, Carol B

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Carol,

First of all, thanks for your support and good wishes! Yes, it's a bit easier knowing others who are in your shoes.

Chantalle,

I feel so for you! :( It's worse when you have no one who understands, and Dr.'s who seem to not agree! I go to my reg. Dr. on the 8th, and I'll be very curious to see what she says! The GI Dr. seemed sympathetic to my pain, but truly couldn't tell me anything, other than to try a gluten-free diet. Dr.'s just hate to not believe their tests! Medicine to them, should be more accurate, so they think it is! Mine thought the lesions were celiac, but the blood was neg., from the best lab! So, he just can't figure out what it is! At least he suggested the gluten-free diet, so was amenable to the trial. If I figure out for sure it's celaic, due to diet, I will be sure to talk to both Dr.s to help them diagnose other patients in the future! I can be pretty agressive about something I'm passionate about!

So, if I were you, I'd just stick to gluten-free, dairy, and egg free, and hope you feel better! Everyone here seems to think it may only take 2 or 3 weeks or so, to feel better. I'm trying very hard to do gluten-free, with no more mistakes! I also just gave up dairy, but had egg today! If I suffer tonight or tomorrow, will give up egg, too! I intended to give up egg, with the others, but had devilled eggs, and potato salad at a barbecue today. I brought my gluten-free mayo and just put what I wanted in a portion saved for me to finish. So far, I don't feel too bad, after this meal! It was nice to have the family support for helping with food for me. Besides the eggs and salad, I had fruit, jello, and a plain hamburger patty. Was plenty for me, and I felt like a part of the group. One daughter even bought and made gluten-free brownies for me! She was in charge of dessert, and made other brownies, too. But, how nice to have both daughters plan ahead, just for me!

You and I are new to this, so have a lot in common! Keep your chin up, and let's keep posting, to keep track of our successes!

Nita

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HI Nita. My doctor already forwarned me that a negative blood test doesn't mean I don't have it. He doesn't know about enterolabs or he would have told me I'm sure (although he tries to save his patients money). He will hear it from me though. :-)I've never been able to notice symptoms from what I eat. Unless of course it's nuts/corn (whole) which have a tendancy to cramp my stomache and go right through me. Soaking nuts according to westonaprice.org do better with me. I've been very sick for to long but was never able to identify food as a culpret. That's why the mention of gluten-free suprised me. Not any more now that I've read about it. Some symptoms are delayed so you might not beable to tell that that egg you just ate caused problems. I asked my doctor how long on the diet before I knew I was on the right track. He told me 3 weeks which is when my next appointment is. However, a gal on one of my other groups told me she knows people that took 3 months before they noticed any improvement. This is why this gal advocates testing. I'm sure with your damaged villi it's celiac. With me, I'm awaiting the stool test from enterolabs. Might be a month or more till I have results. Allthough the wait is TERRIBLE, I will REJOICE if it comes back positive. I just want to get well. Good luck on your new diet. Hugs, Carol B P.S. With my IBS (if that's really what it is) when it's acting up it doesn't matter what I eat I'm in agony. When it's not acting up it doesn't matter what I eat. That's why I never linked it to food)

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Carol,

So, no rejoicing about the egss yet, eh??? :D Of course, if I feel well after this evening, I will eat the rest of the potato salad! :) If not, it won't be hard to give up, at least temporarily! That ice cream that hurt bad, doesn't even look good in the freezer! Funny how that works! And I'm not even sure what has bothered me, but those things that I ate most recently, causing pain, don't appeal to me at all!

I too, have avoided whole corn and nuts for years, being told it was IBS. Will try them again someday! I don't really remember whether they cramped, or just went through me. Could've went through me, due to damaged intestines, regardless.

I hope you get your resutls back and can get on with some treatment! Good luck!

Nita

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Thank you NitaB and Kalo for all your help...this site sure helps me feel like I'm not crazy! IBS and it's symptoms have a tendency to make those who suffer feel as though they are hypochondriacs. That's sure how I felt (feel) when I have ever talked about it to my doctor(s). Which is why I have only mentioned it twice since I've been an adult on my own (my mom may have talked to doctors about it when I was young, I don't know).

I'm not too sure what I'll do. I could wait to see the specialist (in 14 mos.!), or e-mail Enterolabs and see if they will test samples from Canada.

One thing I have to note - which really became apparent to me just today - I've been must worse for the past 6 weeks than I've ever really been. I've always suffered but this time around it is so bad for SO LONG. It seems like this just leapt out of nowhere in a way. Other than the bowel disorders and gas, I could feel pretty much o.k. before. I get these really sick feelings now that last a long time, and the gas and diarrhea is worse than ever.

Is it possible that I have had IBS all along and lactose intolerance, but both have gotten worse? I guess the only way to really answer all this is to get that test done through Enterolabs. I'll check their site tomorrow.

Once again, thank you - and I'll be watching for those results of yours!

Chantalle

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Good morning gals. My health history goes back to birth and I'll be 55 in a few weeks. Chronic fatigue/fibromyalgia/low thyroid/low adrenal/sinus and allergies. Turns out that the constipation I had from birth severely up until 20 years ago when the IBS took over may have been from gluten intolerance. Also, the 3 week bout of the stomache flue comming out both ends 24/7 probably wasn't the flue. It doesn't last that long. I missed at least a month of school every year and lived on penicillan shots etc. If I remember correctly (don't count on it LOL) Enterolabs will test anywhere. I'm sure it's listed on their sight. Look them up. I've been real sick this past week. I'm hoping I feel well enough today to get some work done around here before DH comes home tonight. He works out of town. Hugs, Carol B

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My enterolab test came today. YEA! I already did the swab test for the genes. Will do the other in the morning and get it out the same day. Hugs, Carol B

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Chantalle and Carol,

I think it helps here, just having someone who understands what you're going through! The support makes a whole lot of difference.

Chantalle, I still would be willing to try the dairy, egg, and gluten-free diet. If you would just feel better, it will be worth the effort! I don't feel quite as good today, something wasn't perfect that I ate, but I don't feel bad. Just some rumblies! I seem to be having trouble eating fruits, as I guess they're harder to digest. I hadn't been eating enough before, so will take time to digest more easily. Also, I think that milk protein is hard to digest, not just the milk sugar. So, you may need to give up milk anyway, for now. Mind you, I'm not sure if and how it's different! Do the test, if you can!

Carol,

Yaaaay, get that test in and get those results back! It is amazing how long you have suffered! It's odd though, that on my bill for the blood test, it says they did the gene thing. It indicates to me I don't have it in my genes, if it was negative. I just can't believe it! But, I also have the itchy sores on my elbows and knees sometimes, have for over 8 months. The GI DR. said I'd need to see a dermatologist to get results for those. You'd think he would've been a bit interested, as there could be a correlation. Now I need another flare-up to see yet another DR.! :)

So ladies, keep me posted!

Nita

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I just spoke to my sons GI doctor today and now feel sick to my stomach.

Last summer my son was tested for celiac, his Tissue Transglutaminase

was over 100. He has now been gluten-free for about six months.

We re- tested to see if his numbers had dropped, so I know if he truly is gluten-free.

Here is the kicker, his numbers now are over 200. How can this be? Could they

have screwed up the test? Even if he was getting Cross contamination from somewhere, would his numbers atleast have dropped a bit, not doubled?

Any help or opinions

would be greatly appreciated.

Thanks Tracy

:angry::o

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Tracy,

I'm so sorry! I don't know the answer to your question, as I'm way too new to this. But, I feel bad for your dilemma. What did the Dr. say??? Are you supposed to keep him on a gluten-free diet?

Hugs to you and your son. I hope someone here has an answer for you, as I'd be interested to know, also.

Nita

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