Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Still Healing Vs. Being Glutened


pochtas2003

Recommended Posts

pochtas2003 Newbie

I was diagnosed with Celiac disease about a month ago. Two weeks after my diagnoses, I felt great. Pretty much back to normal. I think that I was glutened unknowingly and it has been over a week and half and I still feel sick. IBS symptoms, muscle cramps, tired all the time. I've been trying to be extra careful about what I eat to make it doesn't have any gluten, but I'm still sick. Not sure if I'm still healing or if I'm ingesting gluten without knowing it.

 

Any advice or tips to feel better would be much appreciated.

 

Thanks


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



notme Experienced

it takes awhile for the gluten reaction to go away.  if i get 'glutened' i feel it (full on!) 2 days later and then it takes another 12 days to go away  :(  you are very new - have you read the newbie 101 thread?  lots of info to help you avoid pitfalls, especially early on.  welcome to the best club you never wanted to join  -_-  hope you feel better soon.

tka Apprentice

I was diagnosed with Celiac disease about a month ago. Two weeks after my diagnoses, I felt great. Pretty much back to normal. I think that I was glutened unknowingly and it has been over a week and half and I still feel sick. IBS symptoms, muscle cramps, tired all the time. I've been trying to be extra careful about what I eat to make it doesn't have any gluten, but I'm still sick. Not sure if I'm still healing or if I'm ingesting gluten without knowing it.

 

Any advice or tips to feel better would be much appreciated.

 

Thanks

I was diagnosed about 2 months ago. It's an up and down ride and very difficult to know when you are glutened by cross-contamination, especially if you are still eating out any. I hadn't eaten out for a while until yesterday, then I really did it. We had a birthday lunch at work and my brother's birthday dinner too. I did not eat anything with gluten that I am aware of, but must have been cross-contaminated because I'm paying for it now. Will have the bloating and gas, headache, muscles aches, fatigue that can last up to 5 days or more. From what everyone on this forum has said, It can take months for you to really feel better consistently. Don't get down on yourself and don't get discouraged ( I need to remember that myself!)

A couple of other things I learned from this site that my doctor never said anything about:

1. Once you go gluten free, the reactions are much worse than before.

2. Check all of your meds for gluten.

3. Get really good at knowing how they put hidden gluten in your food and note if a food was made in a facility other than completely gluten free. Even though it is a gluten free food itself, you can be cross-contaminated.

4. Check your makeup and personal care products for gluten (including toothpaste).

5. Buy your own butter, peanut butter and condiments and label them so no one sticks a knife into them with gluten on their utensil and spreads it to the container.

6. Get a new toaster that only you use so you don't transfer gluten from someone else that way.

7. Invest in at least one pot or pan that can be designated for gluten free use only...don't reuse one that is Teflon or such coated. Buy a new spoon for stirring too.

8. Many people can't eat milk products when first diagnosed.

9. Many people can't eat oats either. They can easily be cross-contaminated in the processing.

10. Make sure your doctor has checked other markers in your blood for things like anemia, low B12, low D3, as you may need replacement until you heal.

Sorry if this is a lot. I know it can be overwhelming. I wanted to try to put all of this in one place for you. If you search items from this list in the forum, you will find threads that go into greater detail on each area. They have been a lifesaver for me. Hope you feel better soon.

it takes awhile for the gluten reaction to go away.  if i get 'glutened' i feel it (full on!) 2 days later and then it takes another 12 days to go away   :(  you are very new - have you read the newbie 101 thread?  lots of info to help you avoid pitfalls, especially early on.  welcome to the best club you never wanted to join  -_-  hope you feel better soon.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - MI-Hoosier replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test uncertainty

    2. - Heather Hill replied to Heather Hill's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Does this definitely suggest Coeliac Disease?

    3. - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test uncertainty

    4. - MI-Hoosier replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test uncertainty

    5. - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test uncertainty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,254
    • Most Online (within 30 mins)
      7,748

    brigette
    Newest Member
    brigette
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • MI-Hoosier
      Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring.
    • Heather Hill
      Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.   Kindest Heather Hill 
    • trents
      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.  
    • MI-Hoosier
      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
×
×
  • Create New...