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

Repost: Bloodwork After Being Gluten Free
0

12 posts in this topic

My last post got a little beyond what I needed...basically I have been gluten free for a month and am now wanting to get a blood test. My doctor gave me the paperwork and told me to get the test in two to three weeks. I have mostly easy to live with symptoms... Dizziness, fatigue, constipation, bloating, gas, loose stools... My sister has celiac which is why I suspect this is where my symptoms come from. I am on a fairly high gluten diet, much more than just four slices of bread. Definately felt better gluten free, but I can manage a few weeks eating this way... I just don't k ow of my eating a lot of gluten makes a difference in two to three weeks being long enough or not.

0

Share this post


Link to post
Share on other sites


Ads by Google:

It's long enough for a lot of celiac patients. :)

http://www.celiac.com/articles/22973/1/Histological-Serological-and-Symptomatic-Responses-to-Gluten-Challenge-in-Adults-with-Celiac-Disease/Page1.html

"The team concludes by noting that a 14-day gluten challenge at or above 3 g of gluten/day triggers cellular, tissue, and blood changes in most adults with celiac disease."

You always have the option of continuing to eat gluten after the test and then if it comes back negative continuing however long and scheduling another test.

0

Share this post


Link to post
Share on other sites

I'm just starting to doubt I even have celiacs because my symptoms are not as bad as other people on this forum, for most people here the idea of eating gluten is terrifying. If my results come back negative I'll be even more in dpubt

0

Share this post


Link to post
Share on other sites

Maybe you don't have celiac but the people who stay active on forums are understandably those most affected in the first place, from what I've seen, so you shouldn't place much significance on not being as bad off as many members here.

Almost 50,000 ppl have joined this forum and the majority aren't currently active. I like to think that most of them are out there living healthy lives w/out gluten and just don't need further celiac info or support or whatever originally made them register an acct.

Good Luck w/ the test Peppa :)

4

Share this post


Link to post
Share on other sites

Don't discount the possibility just because you don't react severely to gluten. As a 30+ year un diagnosed Celiac, I had what would be considered mild reactions. I ate gluten regularly, and had some digestive issues, but nothing that could be directly attributed to what I ate. My biggest complaint was chronic fatigue. After being gluten free for several monnths, my reactions changed however, and became severe and immediate. When you eat gluten all the time, your immune system becomes so wore down it often can't muster more than a weak response. Once you are gluten free and it recovers, it will let you know loud and clear if gluten is the problem. That is the case for most of us anyway. There are a few "silent celiacs" who never get a noticeable reaction, but that is the minority.

4

Share this post


Link to post
Share on other sites




I was fully functional on gluten just some annoying symptoms but never enough to call in sick. I did a 2 week challenge prior to my blood test and it was enough to get positive results.

1

Share this post


Link to post
Share on other sites

Hi Peppa-minto,

Symptoms don't usually start out at the worst stage, just like cars don't go from 0 to 100 in zero seconds. But ongoing inflammation and damage does take a toll and most likely your symptoms would worsen after awhile. How soon that would happens is anybody's guess though. Some people develop additional auto-immune diseases and go to the doctor for that and then they get diagnosed for celiac.

Whether or not your doctor will diagnose you after a week challenge is for him/her to answer, we can't tell you what the doctor will do.

1

Share this post


Link to post
Share on other sites

I was fully functional on gluten just some annoying symptoms but never enough to call in sick. I did a 2 week challenge prior to my blood test and it was enough to get positive results.

Ahh Christine, glad you posted.

Do I remember correctly that the 2 week challenge was after 7 weeks gluten-free?

0

Share this post


Link to post
Share on other sites

I just realized I never checked to see if my elmiron prescription was gluten free... Did a google search and got mixed results.... Maybe I was never gluten free after all?

0

Share this post


Link to post
Share on other sites

I'm just starting to doubt I even have celiacs because my symptoms are not as bad as other people on this forum, for most people here the idea of eating gluten is terrifying. If my results come back negative I'll be even more in dpubt

My gastro symptoms were mild - it's the long term neuro things that got to me.

0

Share this post


Link to post
Share on other sites

Well my symptoms are worsening a little again. I don't know if there is gluten in the elmiron capsules... But if there is, maybe the fact that I didnt stop taking them when I thought I was gluten free will help the accuracy of my bloodwork. Of course, idk what I will do when I go gluten free again. Maybe empty the capsules into water and take them that way?

0

Share this post


Link to post
Share on other sites

Well my symptoms are worsening a little again. I don't know if there is gluten in the elmiron capsules... But if there is, maybe the fact that I didnt stop taking them when I thought I was gluten free will help the accuracy of my bloodwork. Of course, idk what I will do when I go gluten free again. Maybe empty the capsules into water and take them that way?

I don't know about the elmiron capsules. It would be better to get some that are known to be gluten-free. Regarding your symptoms not being too severe. Most people in the USA who have celiac don't know that they have it. There are many reasons for that but some are:

Most people with celiac do not have digestive symptoms.

Most people with celiac are not tested by their doctors.

etc

Judging your possible celiac by your digestive symptoms is not a good idea. If you have digestive symptoms and they improve on the gluten-free diet, that is a reasonable thing to assume you have a gluten reaction.

But since most people with celiac don't have digestive symptoms, assuming your GI symptoms are mild and that means you don't have celiac is incorrect. Celiac is not an instant change for most people. The damage can build up over years and get worse and worse. And it may be symptoms in your joints, or skin, or liver, or brain to first be noticed, not your your GI tract. That's one of the reasons it is hard to diagnose celiac disease, the symptoms aren't always in the gut. So doctors don't even think to test people for it. Unless you come in to the doctor with a "classic" GI case, they don't see the connection.

1

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
      104,105
    • Total Posts
      920,391
  • Topics

  • Posts

    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,143
    • Most Online
      1,763

    Newest Member
    Alice Fontana
    Joined