• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Testing--& Gluten In Diet
0

9 posts in this topic

Hi,

I am to have the full panel testing in the near future. I have such a long story, where to start. I've had few digestion problems until I encountered cancer at age 60. I had a sarcoma removed along with the distal portion of my stomach, and I have a roux en y. That's been more than a year ago, and the sarcoma is considered highly unlikely to return. I have had my share of digestive issues, mostly sorted out. There are some other medical issues, but let's say I've had most every test known to man, and things look good.

So, I went to a GI doctor thinking I had gastroparesis, or something like that, because I had so much bloating and gas, and sometimes voluminous stool, sometimes smaller. (had colonoscopy 1.5 years ago). Not exactly constipated, not diarrhea either. But I did have pain at times, spasms in my colon at times. I've recently had a abdominal/pelvic CT with triple contrast, checked out fine. So the GI thinks I might have celiac, or gluten problems. I like her, she is a good diagnostician. I have had a three vitamin/mineral deficiencies in the past few months that I assumed were because of my partial gastrectomy, with rewiring: copper, vitamin D & magnesium. Since being on those, things did get much better. I am not anemic, although I had been low normal, or slightly below normal, and couldn't get it any higher. I think taking copper helped with that, as it was after I had been on copper for a couple of months, the hemoglobin nudged upward, but I don't know. But the GI was not impressed, thought the deficiencies were unrelated to my surgery.

So, moving onward. During the past few months, I gradually stopped eating bread and bread products. I love bread, or did love it. I just decided it wasn't so good for a person. I have not lost weight, I gained it back from my surgery, however, and I am at a good weight. I never buy prepared stuff. I don't eat out a lot, and am reasonably careful. I do eat bread, perhaps once a week, but then not a lot. I love oatmeal in the morning, don't know what the chances are that is a problem with gluten. I really cannot think of anything that might have gluten in it except for the homemade soups--I eat them almost daily-- I prepare them using flour as a thickener. That would be it.

So I told her I did not intake much gluten, but she glossed over that. When I called a couple of days later to discuss with the nurse, the nurse said, "you're having pain and digestion problems, if you are gluten intolerant it will show up." !!!!! Not sure that is right. I did find a recent study which said that one only needed to be taking gluten for 10 days-2 weeks prior to testing, and these were from celiacs who had been gluten free for a long time.

Finally my question: Will I be wasting the testing if I have it with the diet I have described? I had them check on the cost of the tests as my has started over, and the cost is over $500.

Oh, yes, the GI surgeon who did removed the sarcoma stays out of the fray as far as vitamin and mineral deficiences, and he'd stay out of this as well.

Any ideas?

RASO

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Here is osme info from The Celiac Center at the Univ of Chicago. They have a lot of info in an easy to read format.

http://www.cureceliacdisease.org/archives/faq/how-much-gluten-should-be-consumed-prior-to-being-screened-for-celiac-disease

How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test or biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional.

http://www.cureceliacdisease.org/archives/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis

0

Share this post


Link to post
Share on other sites

...

I really cannot think of anything that might have gluten in it except for the homemade soups--I eat them almost daily-- I prepare them using flour as a thickener. That would be it.

...

I think that's enough gluten right there to say you haven't started a gluten-free diet, making talk of what duration for a gluten challenge moot.

Btw, that UofChi 12 wks quote sure seems overused considering that Mayo, Stanford, Beth-Israel, UofMaryland etc all say fewer weeks.

0

Share this post


Link to post
Share on other sites

I think that's enough gluten right there to say you haven't started a gluten-free diet, making talk of what duration for a gluten challenge moot.

Btw, that UofChi 12 wks quote sure seems overused considering that Mayo, Stanford, Beth-Israel, UofMaryland etc all say fewer weeks.

Karen,

Yes, those cautions I have seen--12 weeks seems like a long time. One cracker seems a lot smaller than one slice of bread, too. The latest study I saw said the amount did not matter so much, so then maybe I don't need to be concerned.

Tom,

I've seen the shorter times, too. So I'm glad (I guess) that you think the couple of teaspoons of flour I would get each day as a for sure gluten is enough. I cannot translate tsps. of wheat flour into a slice of bread, or half slice. But I will eat a slice of bread, or a bun sometimes, just not daily or even every other day.

I do not think it would be hard for me to eliminate gluten from my diet. Life would still be worth living! It would be nice to know if gluten is a problem for me or not, however.

RASO

0

Share this post


Link to post
Share on other sites

...

I do not think it would be hard for me to eliminate gluten from my diet. Life would still be worth living! It would be nice to know if gluten is a problem for me or not, however.

RASO

I know that saying "life worth living" isn't hyperbole at all - many here were impacted to that magnitude by gluten, myself included.

You may as well get tested asap, imho. Even if it's negative you might want to try all-out 100% gluten-free anyway to know more surely - lab results don't mean as much as 'quality of life' improvements you'd get if gluten is the issue.

And of course, if it's not, better to find out sooner so you can get on with finding what IS the issue.

0

Share this post


Link to post
Share on other sites
Ads by Google:


What did your doctor suggest as a duration for your gluten challenge? Sounds like she thinks it will be a positive test right now. If you are eating gluten pretty much every day that should be enough to have a positvie. In theory. In reality none of us can tell you for sure what will happen. But you are having symptoms that may be from gluten / celiac damage now. A test may show positive resutls and it may not. That's the thing with celiac disease testing, it is not 100% reliable no matter how long you are on gluten. You could start eating more gluten and see if your symptoms get worse. That would be an indicator that there is a relation to gluten. Or you could get the antibody tests done now, and see what happens. I suggest upping your gluten intake for now, and getting the testing done. It may take a few weeks to get schedule for the blood draw, since it is the holdiay season.

0

Share this post


Link to post
Share on other sites

Hi,

Well, yes, I did add some more gluten/wheat to my diet in the past few days, with dramatically bad results, I thought. On Thanksgiving Day (Thursday) I had two slices of sourdough bread. As far as I know that was all the gluten I had because we ate a regular sized meal at home because our family get-together was Saturday. A few hours later I started feeling bad. Pains in joints, pains, in abdomen, bloating, and what I later decided was swelling in my throat. I felt like I was being choked, although I could swallow, etc. The next day, about the same, but I noticed my bowels had stopped working, ahem. I developed a bad cough and it sounded like bronchitis, so thought maybe I was getting a virus. Saturday was a bad day, and I began to wonder about allergies, so I tried a 24 hour antihistamine. I started feeling better, at least with the throat problems. I was very depressed most of the day.

Today, on Sunday, I feel so much better. No cough, no throat issues . . . doubtful that it could have been a virus that left in 24 hours. Do I have to eat more bread to get accurate test results? I did ingest more gluten on Friday, but not a lot. If I ate any on Saturday, it was unintended. I have also seen something somewhere on the internet about it taking 6 months of gluten free to get the bloodwork to change. Any truth there? If so I only cut down on gluten in September, but I never did entirely eliminate it as I was not convinced I had anything.

If I have a wheat allergy instead of celiac, can they tell that from the panel? I have to pay for the panel outright as we've started over with our deductible for the year. So is it worth it if I think I will just go ahead and eliminate gluten products regardless? As to timeline, I can take this test anytime, next week, the week after. Thanks for all your help.

RASO

0

Share this post


Link to post
Share on other sites




They could do a wheat allergy test also, but you would need to request it, as it is not part of t\he usual celiac testing.

If you are going to do the gluten-free diet anyway, then there is no differnce in treatment. Some people have follow up testing for antibody levels once in ahwile to verify the antibodies have droped. But you can't tell if the antibodies dropped if you don't have an intial test level.

Another thing that should change is vitamin/mineral levels should improve. You could get those levels tested now and do a follow up later, say in 6 months or a year after going gluten-free.

Some reasons people like to get tested are if they have children who might get celaic, or need schools to accomadate their gluten-free diet. Some countries have programs to help with the costs of gluten-free foods. And if you wanted to participate in a study on celiac disease they generally only accept peope with biposy provien celiac disease.

There are some labbs that you can order tests from online that are cheaper, but i don't remember the names of them.

0

Share this post


Link to post
Share on other sites

Another thing that should change is vitamin/mineral levels should improve. You could get those levels tested now and do a follow up later, say in 6 months or a year after going gluten-free.

The above is of concern to my health providers and of course myself. I had them tested in mid September, and am supplementing. They were discovered in July, I supplemented then, but the improvement was slight. So, I am taking more of each supplement. Those deficiencies are being watched regardless of the question of celiac or not.

Sounds like I should go ahead and get tested. From what I've read a couple of the tests could, not saying it is definite, but could point to a wheat allergy. But I guess a person could have both celiac and wheat allergy going on? It's confusing to me.

RASO

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,377
    • Total Posts
      935,758
  • Member Statistics

    • Total Members
      65,062
    • Most Online
      3,093

    Newest Member
    MsLeigh
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Everyone!  Thank you for all your responses!  This site is so helpful and I appreciate everyone who replied to my post.   I was able to get an earlier appt with Maureen Leonard who was absolutely wonderful like you all said and after more testing and even a genetics test, my son now has a diagnosis of celiac disease.  He's been gluten free now for a few weeks.  He is doing very well on the diet so far.  He does seem to be sleeping better which was always a problem since he was an infant, so that is a good sign!  We test in 3 months and I hope that his iron levels go up. 
    • Are you substituting something for the PPI?    I'm not sure what meds will mix well with it, but you could ask the pharmacy or Dr. for advice on what might work.   I'm thinking you stopped something that may be helping in some ways, and are now allowing your symptoms to return.   If so, it makes sense to find something else to help with symptom control.   I don't know what products you have there.   We have Tums (calcium carbonate), Gaviscon (aluminum hydroxide with magnesium carbonate), Pepto and Kaopectate (same product), and Gas-X (simethicone).    I believe all of these can be taken with PPIs, but do check.    I don't know that Pepcid (Famotidine) can be mixed, but you could check that, too.   The Gas X really helps with the bloating and odd pains, as it breaks up the gas.  The Tums seems to help neutralize the acid and upset stomach / stomach pain.  These two are my mainstays.  You may have other products that could be as effective. Have you tried mixing bone broth with cornstarch or gluten-free flour to make a gravy?  Mix in some ground beef, chicken, or turkey, add some gentle veggies (carrots, or maybe a can of Chinese veggies?), a little bit of gentle spices for taste, and then put over gluten-free pasta or white rice.  Make a chicken sandwich with gluten-free bread.   Can you tolerate mayo?   Put a sprinkle of salt, pepper, and lemon juice on salmon, then coat with mayo and microwave.   Or mix some mayo with chicken or tuna for a chicken salad / tuna salad sandwich;  or eat just a scoop of it.   If you can tolerate dairy, Schar's newest version of table crackers are like saltines and are tasty.   If no dairy, try their breadsticks.  You could have either with soup or bone broth.   Schar's has enough fat to give you calories to help stave off weight loss, and you can add more by brushing a little butter on the crackers. You could try other casseroles with tuna or some lean ground hamburger.  Have you also looked at a possible new food intolerance?   I suffered for a few weeks before I figured out it was dairy for me.   Eliminating dairy wasn't enough.   I had to get rid of anything that might upset my stomach in order to start getting better.  I printed lists of low FODMAP, low acid foods, and low lectin foods, then selected only those foods that were on all 3 lists.   You might consider doing this with food lists that are right for you.  Hope this might spark some ideas!    
    •  I have a friend with MS, another with breast cancer and a third with RA.  At the same age my only problem is I cannot eat gluten!  So when I start getting frustrated about food I think about that and how lucky I truly am.  Once you get in the swing of it it gets easier and then you start to feel better which makes it all worth it.    Also when I first went gluten-free I read on this group about Mark's daily Apple and the Paleo community. I turned to that which was extremely motivating.  I've never seen so many people so excited about not eating gluten. It was a very positive energy and motivated me to find other foods to eat. Also, they love bacon! 
    • I know I needed the confirmation.  My hubby went gluten free per the very poor advice from my allergist and his GP.   It worked, but we really do not know if he has celiac disease.  He refuses to do a gluten challenge and I do not blame him.  We do know that gluten makes him sick.  He has been gluten free for 16 years.   So, when my GI suspected celiac disease, I could not believe it.  I had no tummy issues at the time, but was anemic.  Had been my whole life and it was blamed on a genetic anemia and menstruation.  I knew what being gluten free meant and I did not want to have celiac disease.  But,   I got positives  on the DGP and my biopsy.    Nothing like seeing something in writing.  I showed that to my extended family who was in denial as well.   I had a shared household with hubby all those years.  But after my diagnosis and the fact my kid started making things in the kitchen, we all went Gluten Free.  Great kid, but I could not trust her with my health!  If you DD has small siblings, consider all going gluten free.  They can eat gluten outside of the house.  That is what my kid does.  
  • Upcoming Events