Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Prep For Blood Testing
0

6 posts in this topic

Hi everyone,

I have already written in about my son, and now it's for my husband that I have questions (questions about me will undoubtedly come soon!)

My husband is going to get himself tested for celiac because after we all went gluten-free due to our son's need, he, my husband, was amazed to find how much better he felt after a week or so. His chronic and sometimes severe fatigue disappeared.

He was gluten free for 5 weeks in total. Now he has gone back to consuming it in order to have the blood work done and it has been 3 weeks so far.

My question is this: how long is long enough to be back on gluten for valid test results? I have read various things and at the least it is clear that there are individual differences, so this is not an exact science I know. I have heard 4-6 weeks mentioned, but it is not clear how long people have been gluten-free prior to that, to make those number of weeks necessary to be back on gluten, if you see what I mean. Since he was only gluten-free for 5 weeks, perhaps it is not necessary to draw the ordeal out? The bottom line is, although he hates being back on the stuff he is also concerned that the test results be as accurate as possible.

ANy insight would be highly appreciated. Thanks,

Kaylee

0

Share this post


Link to post
Share on other sites


Ads by Google:

I have the same question. I have been totally gluten free for about a month, and sporadically gluten free since the beginning of the year. I am now dreading the weeks that I will need to eat gluten. Worse yet, if I don't eat enough, they could misdiagnose me as non-celiac.

I have been told that you must eat wheat from 2 weeks to 4 months. However, I have also been told that 2 weeks is not enough and could give false negatives. I had planned to go 5 weeks, but would welcome input from others.

I don't know if I can take it. I get severe IBS, can't do my work and have even had heart palpitaitons and shortness of breath. Some threads have indicated that the symptoms will be worse if you have been off gluten for a while and go back on. This is not going to be fun.

Any suggestions? Jala.

0

Share this post


Link to post
Share on other sites

After 5 days of eating wheat - so far so good. I am enjoying all the wheat items I had been avoiding for so long - pizza, bagels, oriental noodles, petit fors and french rolls (I'm doing pancakes, chips & dips and chicken fried steak w/ cream gravy this weekend). I figure if this is a last hurrah I'm going to do it big, plus this will help to assure my tests get some additional reinforcement.

All these forbidden foods were fun at first, but I was already constipated after only 2 days (but no severe pain or diarrhea yet). I have also inflated like a balloon and have gained a lot of weight. I am hoping to stay on wheat for 5 weeks only. For those of you avoiding wheat and longing for it, let me tell you. It is not all I hoped for. You are not missing anything. Wheat free food tastes way better, and I feel better eating it. I can't wait until this is over.

I believe I am also probably sensitive to soy. When I went gluten-free and ate the soy waffles, I immediately got diarrhea and severe acne clusters. Anyone know what all the GI can test for during the colonoscopy? Soy, peanuts, lactose, etc.?

Also, I was wondering if most peoples' symptoms after not eating wheat and then eating lots of wheat is this subtle. I expected power diarrhea right away, but feel pretty good so far. Is this typical of celiacs?

0

Share this post


Link to post
Share on other sites

Hi Jala,

Don't worry the diarrhea will come. :blink: I had to do a gluten challenge over the holidays last winter. It made the eating part of the holidays much simpler, but I did not enjoy it because I felt so bad. I was like you, I started with the bloating and constipation, but the diarrhea did eventually happen. I was back on gluten for 8 weeks, and I still tested negative on the biopsy.

Make sure your doctor checks the cellular level of the samples, and not just the villi. If the villi are not flattened or just look slightly abnormal, then they need to count the number of intraepithelial lymphocytes. Most doctors do not do this. It has to be specifically ordered at the time the biopsies are sent to the lab, but without it, if the villi are not damaged enough then the test is not going to give you accurate answers. I found this out too late to help me, but hopefully it will help you. It is called a CD3 stain and anything over 20 intraepithelial T-lymphocytes / 100 mucosal cells is damage consistent with Celiac. Please ask your doctor to do this before the biopsy, so that they have time to find out what to order if this is not standard procedure for them. And then make sure they do it! Other wise you are suffering for no reason right now.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Good luck,

0

Share this post


Link to post
Share on other sites




Yes - the more input the better! And, the more I read the more it appears that there is no one description of someone with celiac disease. That must also be why there are such varying suggestions from the technical and medical professions about how much gluten is sufficient for valid test results. Like you, Jala, my husband had decided to do 5 weeks (which, in his case, was a crafty compromise between the 4 and 6 week suggestions he'd heard - but still pretty arbitrary), and that may just not be good enough from what others have experienced. Obviously, a personal decision has ti be made at some point!

Best,

Kaylee

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
      103,346
    • Total Posts
      917,409
  • Topics

  • Posts

    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
    • Will my doctor test me? So many symptoms...
      Hi! I was hoping some of you might be able to tell me if my symptoms seem like good reason to be tested for celiac disease... I actually asked my doctor to test me (years ago) and she told me she would not test me because the test is expensive... However, I am now desperate to figure out how to manage my health issues and am willing to find a doctor that WILL test me if my symptoms seem to point to celiac...Here they are:
      I have been diagnosed with all of the following over the last 12 years (I am 22 years old, and have always been a healthy weight/slightly underweight, and quite active):
      Irritable Bowel Syndrome Fibromyalgia Anorexia (started when I was 10, I have been mostly recovered since I was 14) Depression Anxiety Panic Attacks Horrible mood swings (from suicidal to totally fine in a matter of minutes)
        Chronic constipation and bloating Acne   HOWEVER, no one in my family has been diagnosed with celiac....am I wrong to think I have it??
    • Weird Reaction
      Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest.  Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says. In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox. Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research. My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date.  I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and nausea seems to have returned to. It's funny that as I get older any little thing I get I seem to think it's life threatening even though all the tests I get back say I'm in good health. I guess that's part of that dread and doom and gloom feeling I mentioned earlier. Wish that would go away.  
    • Gluten and panic attacks
      There are great gluten-free pizza crusts out there, as well as good dairy free cheese. I find the key is to add good toppings, e.g. meats, carmelized onions, other veggies, white anchovies. Life goes on. Congrats. Hope the good feelings keep up. 
    • Gluten and panic attacks
      Just want to update incase anyone can find this helpful. I have stopped eating grains and dairy and everyday I'm feeling more and more like myself. It's amazing and I don't really care that I won't eat a regular pizza again. I mean 4 months ago I would have said I would die without gluteny soft pizza, now I am happy to never eat it again if it means I will never have to suffer a panic attack.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,480
    • Most Online
      1,763

    Newest Member
    Luposgirl
    Joined