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 Celiac.com!
    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

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
    • Tanner L
      Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 
×
×
  • Create New...