• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

Rate this topic

Recommended Posts

Hello all,

This is a long one, so please be patient or skip to the bottom for the TL;DR version.

So, a little background before I get into my weird post-gluten-free symptoms. I'm 23, male, and a student at the University of Oregon. This last summer I was given a presumptive diagnosis of celiac disease based on blood work (120/30 ELISA units on an anti-tTg IgA blood test). Because I wasn't going to be able to get in to see a specialist for a biopsy for six months due to insurance issues, I went gluten-free at the recommendation of my primary physician.

My symptoms did start to recede, ever so slowly... but of course, by the time I was starting to notice a real difference, I got a consultation with a GI specialist, who told me to resume a normal, non-gluten-free diet for two months so as to not throw off the biopsy results. I started eating gluten again for those two months, got an endoscopy/colonoscopy/small biopsy, and - surprise surprise with 4x the "normal" amount of ELISA units - was positively diagnosed with celiac disease.

I'm now gluten-free again. It's been two weeks, and I'm just now starting to get over the worst of the gluten withdrawals. With the exception of an incident of very mild cross-contamination at the end of last week, I've been doing alright in my recovery process... with a few weird exceptions.

First, my BMs. Surprisingly, while I was back on my gluten-y diet in the leadup to the biopsy, I was pretty regular, and everything was as it was supposed to be. No floating, no malodor, no excess mucous, no partially digested food, etc. However, in the past two weeks since going back onto the gluten-free diet, all of the traditional symptoms of celiac in that department have cropped up. I've become irregular in my BMs, the consistency is off, it's definitely malodorous, digestion isn't working properly, and there's far too much mucous.

Huh? Isn't the opposite supposed to be happening? Interestingly, the first time I went gluten-free I also had an abundance of mucous, but none of the other symptoms.

Second, allergic reactions. One of the recurring symptoms I had pre-diagnosis was constant itchy, runny, red eyes, even when it wasn't allergy season. In fact, this is so consistent that when I was gluten-free the first time, I used this reaction to tell when I had been glutened. So when I got that cross-contamination last week, my eyes got all itchy, as usual. But then, yesterday... they got itchy again. And I'm 100% certain I didn't get glutened yesterday, since I was at work all day in a food-free environment, and the only things that went into my mouth were very carefully vetted and screened by me beforehand (and were all things that couldn't have been exposed to gluten).

Again... huh?

TL;DR version: Going gluten-free again appears to have actively made my intestinal issues and allergic reactions worse.

Share this post


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


HI Magister Mundi,

Welcome to the forum! :)

Going gluten-free seems to have an adjustment period for our guts, as well as our taste buds. Reversing damage to our gut and bodies can take some time, months or more even. It depends a lot on how sick a person was to start with and how much damage they have. But being back on the gluten-free diet means you have started down the path to healing, so that's good. :)

You could try taking some pro-biotics and digestive enzymes with your meals. Eating different foods can throw your gut bacteria off and that can cause symptoms. It also might be helpful to cut back on sugar and starchy foods for a while, until your gut bacteria stablize and your villi heal some.

Just for reference, I had hayfever symptoms that eased off over about 6 months after going gluten-free. Now they are very minor for me. So, your allergy responses may stabilize some as time goes on also.

Congrats on getting diagnosed!

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
      108,923
    • Total Posts
      943,525
  • Member Statistics

    • Total Members
      67,139
    • Most Online
      3,093

    Newest Member
    Kymy02
    Joined
  • Popular Now

  • Topics

  • Posts

    • A quick perusal of Dr. Brownstein's website outs him quite quickly as a purveyor of pseudoscience. Though he may be an MD, he appears to have abandoned evidence in favour of selling stuff people don't need by making them afraid, using his authority as a doctor. Like all such individuals, what he says has some basis of truth (eg. hypothyroid disorders are quite common, the average North American has a terrible diet), but he twists it to create fear and take advantage of those who are less scientifically literate. Conspiracy theories abound to be found at: http://www.drbrownstein.com/dr-bs-blog/ Here is a criticism of his work: https://sciencebasedmedicine.org/does-your-antivax-doctor-have-another-agenda/
    • Almost 2 years into my diagnosis after losing about 35-40 pounds I have now added about 60 with clean gluten free eating. I also changed jobs which for me has been much more of a physical change, thus needing more calories I have finally been able to put back some pounds. It is possible, for me the clean diet which helped restore my guts let me finally start absorbing the nutrients I was lacking. 
    • Hi Niza, Try to eat lots of protein.  Meats, peanut butter, avocadoes, things like that.  Try to avoid processed (pre-made) foods like frozen pizza, cereals, pot pies, cookies etc.   There gluten-free versions of many of these foods, but they are best saved for later on like 6 months after going gluten-free. If you are just starting out gluten-free, eat a simple diet of mostly foods you make yourself at home.  Also, try not eat eating any dairy (milk, cheese etc) for a couple months.  Oats are also a thing to avoid eating for a couple months.  You may not have any problem with dairy or oats, but some people do. Welcome to the forum Niza!
    • I am. I went undiagnosed for years and years and I honestly thought I was dying. I had been trying to gain weight even before my diagnosis and could barely gain a thing. I am so relieved to actually have an answer as to WHY! I was just diagnosed last weekend so I still have a lot of internal healing to do after years of villus atrophy. I have been drastically underweight for some time now, although I am slowly gaining. I am currently eating around 2,500 calories a day and not doing any strenuous exercise. I am only 74 lb (at 5'2") and I started out at 67 back in the beginning of December. I eat as much as some of my guy friends eat in order to "bulk" when they are lifting heavy at the gym and yet I still seem to gain at a slower rate. Just goes to show how messed up your intestines can become after years of abuse. 
    • Hey Deb, In theory (based on some studies), your small instestine should heal pretty fast (within weeks), but often there is collateral damage that can take longer (like your bone pain).  For me, personally, a gluten exposure can set me back three to six months.  My antibodies can last over a year.  And worse, I now developed autoimmune gastritis and hives.  Yikes!   I had  some hip and rib cage pain when I was first diagnosed.  Two months later I fractured some vertebrae.  I had been undiagnosed for so long, that I developed osteoporosis.  I assume that once on a gluten free diet, your pain should diminish based on a strict adherence to the diet and  your previous experience.   I hope you feel better soon!  
  • Upcoming Events