A Million Questions And Observations!

[grannynanny]

I am SO glad to have found this board and have learned SO MUCH from reading various posts. For 6 yrs. I suffered excrutiating bouts of nausea, vomiting cramping, bloating and diarrhea several times a month, occasionally ending up in the ER. I had colonoscopies, barium swallows, endoscopies, gastric emptying studies, etc., etc., etc., with no end diagnosis. I thought I was surely dying (and, at times, wanted to). I decided that perhaps I was lactose intolerant and for awhile I seemed to improve on a dairy-free diet and a medication I ordered online (prolactazyme). But I soon began to have a return of some symptoms, and they seemed to return with a vengeance. Last July, I had a 24-hour bout of severe cramping and bloating (it even hurt to walk!) and went to the hospital by ambulance. The pain was managed by morphine, a gastroenterologist and surgeon were called in and I was readied for surgery to remove the suspected intestinal blockage. But numerous tests later, they were unable to find the blockage!! Meanwhile, my system had emptied and I was now feeling fine. Nonetheless, they kept me in the hospital for 2 more days (with no food!!) for observation.

Back at home, and eating my usual diet, several days later I began to experience the symptoms again. This time, in desperation, I did a Google search on stomach/intestinal disorders. As soon as I read the description for Celiac, I knew I had finally found my diagnosis. (I even have the dental enamel abnormalities (some of my permanent teeth grew in black!), the bone/joint pain, the dermatitis on my scalp, etc.) I strongly suspect that my father, who died last year, had undiagnosed Celiac. He suffered with terrible stomach problems for most of his adult life and was hospitalized with "dangerous" anemia on several occasions. (They found significant internal bleeding, but were unable to find the source.) I immediately went on a gluten free diet and my symptoms disappeared almost as quickly.

By the time I saw the GE doctor, I had been gluten-free for nearly a month. I told him about my research and how much better I was feeling. He insisted we do the blood test, followed by the intestinal biopsy, if the blood work wasn't conclusive. I replied that everything I read said the tests wouldn't be conclusive unless I was eating gluten. Wel-l-l-l, you know how much doctors like being told they may be wrong, so we did the blood work. Of course, 3 of the 4 factors were normal, while the 4th was only slightly elevated (I wish I knew more about the science here). I haven't been back because I know that his next step will be to have me go back on gluten (a fate worse than death) so we can then do a confirmatory biopsy. Now for my first question: I have seen a test mentioned several times on this site and want to find out more about it.

I am still experimenting with diet challenges, spending hours in the grocery reading labels, etc., and negotiating my way through a restaurant menu. Now to my next question. Something I ate during lunch at a lovely French restaurant the other day gave me a reaction (mild nausea for several hours, followed by diarrhea for the next 12 hours). I had a spinach salad with bacon, onions and warm goat cheese. I had Equal in my iced tea (shouldn't be a problem -- I do it all the time) and a cappachino (i sprinkled a little cinnamon and chocolate on top) for dessert. (Lactose is no longer a problem for me.) When I got home, I had a few "Creme Savers" candies (artificial colors and flavorings). Any ideas what caused the worst reaction I have had in months?

My last question is this: I thought Kelloggs Rice Krispies were safe, and eat them frequently for breakfast, but reading the label this morning I found that they have "malt flavoring." Is this a no-no?

Thanks so much for answering the questions of this "newbie."

Sue

[KaitiUSA]

Unless you go to gluten-free restaurants most of the time there is a risk for cross contamination. Different people react differently depending on their sensitivity. Alot of the symptoms you are describing are associated with Celiac some people however do not have symptoms at all. Biopsies are good to have done but if your villi is not damaged much they could miss a diagnosis. Very rarely have I seen blood tests come out positive and the person not have celiac.

The York Lab test has been mentioned on here alot. Is that the test you are talking about?

Rice Krispy treats are a def. no no. I called the company ...their malt flavoring is derived from barley. That can cause reactions

It can take a while for the gluten to get out of your system. How long have you been gluten-free?

If stuff is sneaking in such as Rice Krispy treats that can trigger you having the symptoms

Also do you mainly get these symptoms after you eat? Enzymes work very well for helping your body to absorb and digest your food. I had alot of nausea especially after I ate and when I got on enzymes it was 10 times better. Enzymatic Therapy enzymes are gluten-free and they have everything that they are free of right on the bottle which is nice. I usually take at least 2 with every meal but if I feel bad while I am eating I will take more. Probiotics are also good for you too.

If I can help you at all let me know and I would be glad to help:)

Feel better soon:)

[kactuskandee]

Oh, I so totally agree with Vote4Bush, especially on what to avoid and on the digestive enzymes and probiotics.

I too, tested mildly high in 1 out of 3 tests, the IgA gliadin, and that was after being TOTALLY wheat free for 2 years, but not gluten free (big difference). Always knew I was wheat intolerant from blood test of the past (over 25 years) plus hives/esophageal spasms, but not intolerant of gluten until recently.

I'm also going to add that you may be sensitive to other things. For example, a lot of people are sensitive to high fructose corn syrup. Or, there may have been soy in the salad dressing, and that is the third most predominant food allergen there is, second to dairy, with wheat being the most common.

You may want to consider having York Labs test for all food intolerances. I know I am, as soon as I have the bucks.

Kandee

[pixiegirl]

I hate to say but by your descriptions of what you are eating I think you are still ingesting a lot of gluten. I've had similar symptoms to yours (less the hospital visits) and a doctor that told me to eat gluten because my blood tests came back negative. Well I tried a gluten-free diet and felt wonderful after the first week, so I gave up on the doctor. I paid to have my DNA tested at EntroLabs and I came back with having the two "main" genes for celiac. My mother has suffered from the same symptoms for years and it took me months to talk her into trying totally gluten-free and she did, and she feels great for the first time in years.

For the first few weeks I only ate plain food: fish, meat chicken, rice and veggies, no seasoning, no mistakes. Then I added back regular milk (my doctor had convinced me 8 years ago I was lactose intolerant and guess what... I'm not, what I am is celiac). Now I do belive I have some other food issues and I'm trying to figure them out...

I think for a few weeks you should try to give up the restaurants and eat simply. Now I am using some gluten free subsitiute foods but I have come to learn from these lists and my own experience is that most regular foods, snacks etc. contain gluten or are made on the same assembly lines as gluten foods. So I stick with cereals breads cookies that specifically say gluten free. There are lists out on the internet that will help you find what foods you can eat and what you can't and I think until you really understand the various issues you will still be having reactions. Hopefully someone will post the various lists and you can check company web sites and/or call the companies. May drugs (rx and otc) have gluten as do supplements, you MUST check.

In resturants you can just assume something is ok, they may use the same cutting board as something with gluten or the same pan or the same oil to fry it in, you have to tell the server, maitre d' and I ask them if they told the chef. Gluten hides in everything, various vinegars, sauces, coatings breadings... you have to be really vigilent to get it out of your diet.

Again just assuming a product that you use to buy is gluten-free you can't do until you know for sure, gluten hides in flavorings, vinegar, carmel color, natural flavorings and cross contamination.

Good luck, Susan

[grannynanny]

Dear Vote4PresBush04, kactuskandee and pixiegirl,

Thanks so much for your replies. You all gave me a lot of good information. Guess I didn't realize that soy was a no-no. Knew soy sauce wasn't allowed, but plain soy as an additive? I'm still negotiating my way through ingredients and think I'll try ordering some things from the websites that offer gluten-free products.

It was the Enterolabs test that I wanted to know more about. Didn't realize it is a DNA test. How can I get it done, and how much does it cost? Can my doctor order it, or can I get it done without going through my doctor?

It's so nice to hear from others who have had similar experiences to mine. I don't have to tell you how devastating it is to be so ill, not know what's causing it, and see no end in sight. I've been gluten-free (or so I thought ) for about 6 months now. Even though you think some gluten may be sneaking into my diet, I'm still feeling about 95% better than I did for the previous 6 years!

Thanks again for your help.

Sue

[celiac3270]

Welcome to the board ,

You can order the Enterolab tests on your own through Open Original Shared Link. The prices vary from I think $99 and up, depending on whether you get individual tests or entire panels. You shouldn't try to do this with your doctor, because 9 times out of 10, or even more often, doctors will not take Enterolab tests as being diagnostic or accurate--not because of the test itself, but because they'd rather get paid for performing an endoscopy, etc....a grim view of it, I guess, but that's the way it is.

Some soy sauce is gluten-free--I don't know which ones, cause I don't use it, but if you ran a search on this board, I know you could find the names.

I just looked at the site. Here is where you can order the tests, which range from $99 for a gluten sensitivity test to a full panel for $349 dollars: Open Original Shared Link

[grannynanny]

Dear celiac3270,

[pixiegirl]

La Choy soy sauce is supposed to be gluten-free but I have a reaction to it, I did try some soy sauce from Whole Foods market that said wheat free, gluten free on the label and I did not have a reaction to it...

I think the DNA pannel at Entrolabs is at least a couple of hundred dollars, I ordered the whole shebang, along with lactose and all sorts of stuff and I think it was about $300. I know thats a lot of money but I felt my health was worth it.

Hang in there, read the lists and you will get the hang of it soon enough.

Susan

[Guest barbara3675]

Just wanted to add that I had the full panel from Enterolab and it was worth every penny. Found out that I carried the gene and so needed to eat gluten-free and that I was intolerant of cow's milk also. Now I can eat cheese and sour cream, seems like things that are processed, but not ice cream or milk. I use rice milk and soy ice cream (the ice cream really seldom) and get along fine. I eat totally gluten-free. They are so right about the rice krispies. I thought maybe I could get away with them and corn flates because they JUST had the malt-NOT a chance. I did finally find a cereal at the health food store that I like, I missed cereal so much. It is Barbara's Puffins Honey Rice Cereal.....has a slight almond taste and stays cruchy til the last spoonful. I missed cereal so much and still miss my oatmeal. I think maybe when you ate out that time the bacon on your salad could have had gluten in it too, grannynanny. Do not hesitate to use Enterolab, you can be using a gluten-free diet and it will still be accurate, I had been eating gluten-free when I did my testing.

Barbara

[grannynanny]

Dear Barbara,

Thanks for your input. Didn't know bacon could have gluten!!? Feel like everything is trial and error right now.

Will do the EnteroLabs test, for sure. Really wants a diagnosis, not just for my sake, but for my children's as well. And now they are starting to have babies. Maybe my diagnosis could save them some pain and trouble later in their lives.

Sue

[lovegrov]

In more than three years the only bacon (REAL bacon) I've found with gluten is the one at McDonald's and a local brand in California. All others have been gluten-free.

richard

[sfortney]

Thanks for all the wonderful information! I recently had the bloodwork prescribed by a gastric specialist come back as positive for celiac disease (that was all the info. I was given--something I need to look into more) and he followed up "routinely" with a endoscopy which showed up negative for celiac disease. I have been gluten free for three weeks and am actually feeling a lot better. A friend mentioned that I may actually be gluten intolerant and not celiac disease. Would gluten intolerance cause the same results on the bloodwork? The Enterolab test is definitely something I should look into.

[KaitiUSA]

If you had a positive blood test don't rule out celiac just yet. If there is not alot of damage to your intestine the biopsy will not pick it up.

What exactly were you tested for in your blood tests?

[jknnej]

What is Enterolab and where/how can I get it???

[grannynanny]

Dear jknnej,

See celiac3270's post on January 30 for the link to the Enterolab website.

Sue

[sfortney]

The doctor said that he ran bloodwork to screen for celiac disease and to check my gallbladder. They also did an ultrasound to check my gallbladder--no problems there. I have yet to see any test results so I have no idea what my numbers were on the celiac disease tests or even exactly what those tests were. I called the office yesterday to ask some questions and all the nurse would tell me was that the tests were either "positive" or "negative". They are not even setting up a follow-up visit. None of it seems very professional on their part.