nettiebeads

I got the testing done with enterolab.com. I had been gluten free for nearly 3 months. All my cramping and weird diarrhea went away my second day gluten free. That kind of confirmed my suspicion but I figured I'd get the testing done to see for sure. I have the antigens and a small bit of antigens to casein too. :\

But I can't quite figure out what the DNA testing is telling me other than, "Yup, I have the gene(s?)".

Is this one gene or two? Is it possible to tell if I have one copy or two of the bad boys?

HLA-DQ Gene Molecular analysis: HLA-DQB1*0302, 0501

I'm feeling a bit of relief and a bit of angst right now. Relief because my family thought I was being weird. Angst because I hope I'm not too late in getting this diagnosed. I've had some weird symptoms in the abdominal area and I'm hoping I don't have cancer or something awful.

Don't worry about the weird feelings. It takes quite awhile for all of the damage to be healed. Have you laid off of the dairy? If not, you might try that for awhile. YOu didn't state how long you had been sick before going gluten-free. The chances of cancer or other awful things rises the longer your body is reacting to gluten, and it takes a long time of accumulated damage before something bad cand take hold. As soon as you go gluten-free, the body starts healing itself, as you no doubt learned since the D stopped. Just keep on going gluten-free and regaining your health!

If a biopsy is the "Gold Standard" for celiac disease results, what happens when your biopsy is positive but,

your bloodwork is negative? Nurse said I could still have celiac disease and to meet w/GI next week.

gluten-free for 3 days.

It was said that you were early stage celiac. It means that you probably hadn't had enough gluten to trigger the immune responses to show up, but the dr. doing the biopsy found proof of villi damage caused by celiac. You have it. How are you feeling now?

Annette

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Hi. I am brand-spanking new here and this is my first post. I am suspicious that I have celiac, so I am gluten-free. This is day 2. I don't really want to go thru all the testing to see if I officially have it. Last night was the first night I didnt have awful heartburn and acid reflux. In the past few years twice I was rushed to the emergency room (colitis attack)and have had emergency surgery on my stomach (a burst abcess) and the docs said they didnt know what was my problem or why. Never did they say anything about or test for celiac, and I wonder why? I have a lot of other symptoms associated with celiac disease and some of my relatives have gone wheat free or gluten free. I have a son that has schizophrenia and the only way to control it before there were medications developed that would work for him was by eliminating gluten for his diet! Thank you all.

Hi janep and welcome to the board! It's a shame that the dr's didn't want to know why you were having problems. A good thing about celiac is that it doesn't need expensive meds to control it. Just eating more natural foods (ie eliminating overprocessed junk) that are high in protein content should help quite a bit. Even when I'm 100% gluten-free, if I don't keep my protein above 50 grams a day, I get really tired and sluggish. My dr. dx'd me with the diet challenge only, and that was good enough for me. Keep us posted with your progress!

Thanks, guys. My SIL claims that the drs ignore Reliv because they are not nutritionists. That was her arguement when I said I'd try Reliv when I've seen the studies written up in the JAMA or New England Journal of Medical Science. I looked over the ingredient list on another of their products and it contained brewer's yeast. And of course, it doesn't mention being on dedicated lines so I don't know if cross-contamination is another issue. So I bite my tongue a lot for the sake of their kids (10, 11, 13).

I had two holiday dinners (both families live in the same town) Eve was at MIL's house because it was also her b'day. The turkey was cooked sans stuffing, the gravy was gluten-free, everything else was veggies w/o flour or additives. Yummie!!! And of course, I couldn't eat the desserts others brought, but I had made a cherry cheesecake for my MIL's b'day cake and made the faux chocalate graham cracker crust out of gluten-free chocalte crunch cereal (Always Save brand) which everyone raved about. And I had made an apple pie with gluten-free crust - no one could tell the difference. Very good experience.

Then my brothers on Christmas day - totally different. The gluten stuffing was cooked IN the turkey, the gravy, though made with cornstarch for my sake, was from the drippings. Two salads - one had the ramen noodles in it, the other had the croutons already added. I didn't eat very much at all. Then towards the end of the day as I was reaching for a piece of fudge, my brother tells me it has gluten in it. Which I know it doesn't, he's just harassing me about my celiac. Like it's my choice to have it. He and his wife are convinced that if I go on Reliv (they are distributers, natch) then gluten won't be an issue for me anymore. SO WRONG! Before the Reliv they were both quite conscientious about what I could and couldn't have. But I did bring pumpkin pies that I made so I could have some. Everyone couldn't believe that it was a gluten-free pie crust.

It's over until next family holiday. Maybe I'll be out of town.

Annette

YAAAAYYY!!! I bet you have a very good argument for not going to the hospital. Promise the dr. that if your weight ever goes down just by even one pound, you'll let him know, and keep in contact with his office every day about your weight, maybe you won't have to be admitted. Besides, who ever got healthy on hospital food?

You are 26 and allowed to make decisions for yourself, right? Can't you go 100% gluten-free and just let them know it's a personal decision for your own health? You could use the enterolab gene testing ($150 US, I believe) to help with your arguement. And of course, you don't need to be on gluten to do it. All other tests do need you to eat gluten. But you've already made an argument for no wheat with what is called the diet challenge. Go gluten-free for three weeks, try a day of gluten, then go back to gluten-free and keep a diary every day of your food intake and physical and mental symptoms (brain fog, mood swings, stuff like that). That would give you the empirical evidence you need to back up your argument for a gluten-free lifestyle.

And don't forget to eliminate all sources of gluten - oats, lotions, meds and such; watch out for cross-contamination. You might also want to go diary free for at least two weeks. If it is celiac disease, the part of the villi that gets damaged also makes lactase. So if the villi are damaged you aren't making lactase so you will have problems with diary. What's great is the way the body heals itself and you'll be able to eat more without problems. And the argument against oats is the protein itself doesn't have the gliadin that sets off the symptoms, but it is very closely related so that for some people it does trigger the gluten response. That is if your oats are 100% cross-contamination free. I'd lay off of them for awhile too, until your body is better. Sorry for such a long post, but I do want you to be feeling better as soon as possible.

Annette

My family doctor did IGG and IGA testing after I reported various stomach-related symptoms. One was 74 and the other 123. Stopped gluten 4 days ago. Symptoms are diminishing. What are the chances I have celiac disease?

By the way, if the GI doctor I'm seeing next week tells me I have to resume gluten for further testing and my symptoms come back, I'm kicking him in the knee.

I really don't understand why drs insist on all of the testing. I'm not too up on bloodwork counts, but from what I've read on other posts, your numbers are elevated indicating celiac. That, plus your diet is another diagnostic tool that is indicating celiac. And betcha that if he puts you back on gluten and you follow his orders, your symptoms come back. With a vengence. You didn't mention what stomach related symptoms you have, but if you feel better eliminating gluten, why go for more tests and start healing now? Anyhow, I was dx'd by my good ole' gp by the diet challenge. No stomach problems and no D or C so long as I'm gluten-free.

Annette

Hi and Welcome!! Since you had the positive blood work and have reacted positively to the diet, I wouldn't bother with the biopsy. And now it would probably give you a false negative. The only thing it could do is to tell you how healthy your intestines are. I was dx'd 9 yrs ago just by the diet. If you feel good on the diet and can tell the difference when you get glutened, then it's celiac. The only test I might be interested in is the gene test for myself and my 21 yr old dd. I would just watch your babies for any prolonged tummy troubles or unexplained irritability or lethargy in the future.

Annette

Ive had celiac disease for about 6-7months now and i havent treated it (im starting today) anyways I noticed when Im on my menstraul since having celiac disease that the cramps and mood swings are far worse.. I am however 16years old.. Does this happen to alot of you or is it perhaps my age and puberty as well???

Age, puberty, and gluten are probably all working together. Most of us with celiac disease notice extreme mood swings after ingesting gluten. And being at the time of your cycle probably doesn't help any either. I used to have horrible cramps when I was younger. Much younger. That was before the days of advil. If you take advil (ibuprofen) just as the pain starts in, you may be able to head off the worst of it. The ibuprofen inhibits the formation of (I think) progesterone, which has been tied to cramps. Or one of the hormones that goes up and down with the cycle. But anyhow, it works. That and midol which has a mild diuretic which also helps in relieving the symptoms.

Those days are long gone for me, but I am a mother to one daughter and was step mom to three girls - Talk about hormone city!!!

Annette

I've had migrains nearly all of my life. The first time I noticed them when I was in grade school and connected them to IGA hotdogs (I think it was number 4 red dye that was the culprit). Then they subsided some, came back when I was in my mid-20's. Don't remember if they were hormone related or not (too long ago ) Anyhow, I've isolated most of my triggers - some hair products, some perfumes, too much salt, too much chocolate (that one sucks!) and if I have too much caffeine or alcoholic drinks (my slight handovers invariable turn into migraines). I had a real bad episode that nearly sent me to the emergency room a few months back. Talked to my dr about it - I was on 1.25 mg of premerin (total hysterectomy) and my dr. said that migraines were a side effect of the meds. And he couldn't put me on meds for migraines since they are usually lower blood pressure and mine was around 115/64 at that time. So he cut my premerin in half. That helped tremendously - still have migraines, but they are not nearly as dibilitating as they were. Have you been able to tie your migraines to an envioronmental trigger or a food trigger?

I do feel for you - those things are horrible to endure. Oh, and celiac3270 - that 6-8 glasses of water is a medical myth. The liquid you get from milk, diet sodas and whatever else you drink or fruit that you eat contribute to your total hydration.

Annette

How WONDERFUL!!! Isn't it marvalous to see him grow and learn and develop? Uh, how's his hearing? That along with the gluten probably gave him a double whammy. Merry Christmas!!!

The Jackson County, Oregon "Mail Tribune" has good article regarding gluten sensitivity. You can view it at Open Original Shared Link

It does have a little mis-information (e.g. suggesting spelt is ok), but in general it is otherwise an excellent article.

I emailed the reporter thanking him for the article. We have to keep the awareness momentum building.

George

Great article! I'm sure that the 18% and 9% increase in gluten-free sales will have other producers sit up and take notice. And the author did do a credible job in differentiating between gluten intolerence and celiac disease in the limited space available.

Did anyone see the article today? Chicago AP

"People on popular preseciption heartburn drugs -- Prilosec, Prevacid and Nexum -- seem more prone to getting a potentialy dangerous diarrhea caused by the bug Clostridium Difficile, new research show. C-diff, as it's known, can cause severe dirrhea and crampy intertinal inflammation called colitis.

Something to think about???

Lisa B.

Thank goodness I didn't get those side effects when I had my ulcer and was on Prilosec. See, everything good for you is bad in the long run, I guess.

i have been looking up the things that our ped gi talked to us about---especially the increase in intrepithelial lymphocytes. i found an article that said someone that is predisposed to celiac can prolong the latent phase of celiac by consuming a diet restricted in gluten---thus making the blood tests inconclusive. a prolonged latent phase may raise the risks of complications. that is what i read, basically, in a nut shell. i am thinking that since we are waiting for tianna's esophagus to heal and then redoing the bloodwork to check the antibody levels----that maybe i should try and make sure she has lots of gluten containing foods so that we can see if her body is really having a problem with it. she doesn't have any obvious gi symptoms except for the rashes and hives(which drive her nuts), but i have heard it can take sometimes over a year for the rashes to go away even on a gluten free diet. i just don't want to be left in limbo with inconclusive blood work for a long time. i really want a firm diagnosis if possible, because she has 10 brothers and sisters that probably would need to be tested if she definitely has celiac. i really hate it that money and insurance has to play a factor in the health decisions we make for our children.

christine

Uh, she hasn't been doing well on the gluten diet, so why prolong it? If she's better on the gluten-free diet, then that is a positive reaction to the diet challenge, ergo celiac disease. That's how I was dx'd by my gp 9 yrs ago, and I'm not about to go gluten to get a more "official" dx. I would strongly recommend for her the gluten-free diet. And she may not ever have the typical celiac reactions, but the dh proves that she does have celiac disease. The sooner the gluten-free diet starts, the sooner the rashes and such will go away, and maybe she'll catch up to her twin.

Doc called me this AM. We reivewed my case completely, including the all the silly tests, and she siad its offical, I have celiac disease. Now she wants to do a bone screening so that they have on record to monitor since Osteroprosis is a big concern in her opinion.

I have some bone fractures in my back that she was a bit upset that I did not tell here about. LOL Im a horrible patient.

So thats that!

I"m glad you can start your road to a healthier life now. Be sure to do what the drs says and get those films of your back to her. You are going to have to keep up your health for your son - he'll only get bigger and even more active!! And I think of my mother who used to be 5'10" but now is so bent over from osteoporosis that she has to look up to me (5'7") and is in a wheelchair because of spinal stenosis and hip fractures.

Annette

I feel sick when I see gluten filled foods and I cannot believe I ate so horribly! I went to a staff Xmas party the other night and everyone there was pigging out on cake. I did not miss it at all. I just told myself "They are all going to get really fat with clogged arteries". That made me feel better.

What is curious is how my friends feel "guilty" eating around me. They feel "bad" that I cannot eat what they are eating. I am enjoying them feeling "bad". It makes it easier for me to stick to the gluten-free diet and probably less psychologically painful.

Good ole' negative association. Of course, for us it isn't hard. I look at that over-processed food and see wheat (BAD for me) hydrogenated oil, trans fats, sugar, more sugar and fat. Yum!. NOT! After having to be so careful about what I eat and preparing all of my meals, I'm much more aware of what is in the commercial stuff. I'll stick with this gluten-free lifestyle, thank you very much.

[i think someone should start a workout gym, but put it on the top floor of a tall building, and shut off the elevators.

hello ...i had a great experience at p f changs this weekend...they have a gluten free menu, it was impresive. the waitress took it very seriously, commenting that my dining partners meal was also gluten-free, feel free to share. she explained the dipping sauces as well.

not only did i have a flavorful, healthy meal, i felt that being gluten-free was not so freakish.

it was an epiphany!

I had that experience also! It is now my favorite restaraunt when we go to St. Louis. It makes one feel so mainstream!

It seems like my doctors don't consider the body as a 'whole' at all that is affected by everything, at least in my somewhat uneducated opinion

Anyway, please share! Thanks.

hi all, i am totally new at this--- i didn't realize my daughter, tianna, was sick-----she has probably been sick for over 2 years. she is painfully thin, covered in rashes, and doesn't smile very often. she is an identical twin, and has always been quiter than her sister. in the last couple of years her sister, kassie, has grown considerably more than her. i had read about dermatitis herpetiformis and realized that her rashes were suspicious. i took her to an allergist and pointed out the location of her rashes---he ran a celiac screen and it came out positive. she had a biopsy done 2 days ago---we expect to hear the final results on monday. my other twin has really bad reflux, just had esophageal thrush confirmed by biopsies(which did not show celiac, but they weren't looking for it either)and she has been sick for over 2 months. tianna's blood test was positive for the endomysial antibodies---i have heard that these are specific for celiac, but i have also heard that a few other autoimmune diseases could cause these. is there ANY chance that my daughter might NOT have celiac? i've pretty much resigned myself to the fact that this is going to be a new road in our lives and i am trying to look at it as an adventure instead of a problem---but i do have to admit that when i went to buy some gluten free cookbooks, i got a little choked-up.

christine

How old are your girls? On the whole the treatment for celiac will become second nature and just a fact of life for you and the girls. The rewards of seeing your girls healthy and smiling will make it all worth the effort. There are a whole lot more good substitutes out there than when I started my gluten-free life. Ask any questions you have; there is a lot of experience here.

First of all for those of you who do not have the Delfi List of Gluten Free Product (listed by named brands), you need to have this downloaded onto your computer.

Second, I spend about an hour and half at the grocery store. It has come to one of the things that I enjoy, because it is a challange. I read and read. Only through education, will we get through this. There are actually so many things that we can have that are gluten free. I know that many of you do not have to time to dedicate for shopping. I am fortunate to do so.

I am a firm believer in McCormicks seasonings. I still read the lables because it is too much to inject into this brain fogged mind, to remember many of the items that I have seen on this site. I love seasoned foods and I feel that I cook fairly well.

McCormicks Seasonings

LaChoy Soy Sauce

Tamari (wheat Free) - the best

Emerils (some gluten-free)

Annie's Roasted Pepper Salad Dressing..........are all my staples for good cooking

Tonight's Dinner: Beef Stew with Liptons Onion Dry Mix, beef, carrotts and potatoes. Salad on the side.

I love the grocery store.........it's like a treasure hunt...challenging and a learning experience combined.

Lisa B.

Hey, Lisa!! Remember when you first started the gluten-free diet? Now you're talking like a pro!!!!

Bah!

Got a reply back from Backyard burgers, it has ingredents from EVERYTHING they sell. To give you and idea, the fries are on page 40 and 41!. Fries have WHEAT FLOUR clearly listed. All versions of there fries. If anyone wants the document, pm and I will fwd you the email.

Their Low Carb burger is gluten-free so long as you watch CC and topings.

Ah well.

I've never understood why companies always have to use flour when seasoning their fries.

Hi Gina and Laura!!! And welcome to the board. Healing rates vary with individuals and amount of damage done before going gluten-free. Other foods might be hard to digest for awhile due to damage. As you get better, you may be able to add some more foods back in. But right now, think baby - easy on the tummy types of foods. I've learned more from this forum in the past 4 months than I had in nearly a decade after being dx'd. I urge you to just browse the posts or use the search for specific subjects. It's probably all been discussed. But if you have something you need to ask, don't hesitate! No subject is off limits, we've all been there, read it, asked it. We're here for each other.

It's so sad that sometimes it seems like if there was a medication for celiac, people would take it more seriously.

Nancy