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

Suggestions Needed For Next Step...

tummytroubles

Recommended Posts

tummytroubles Newbie
tummytroubles
Posted

I've never posted anything to an online message board, so I hope I'm doing it correctly :-)

I think that I may have a gluten intolerance of some sort, but I'm not sure if it is celiac or not. I'd love to find out if my symptoms are similar to what anyone else out there has had, and what suggestions anyone has as to what my next step should be. Should I be tested, if so what tests, etc...

I have been on a gluten free diet for the past 1 1/2 years after suggestions from my husband that avoiding gluten might help my multiple sclerosis (MS) and stomach pain. I had already discovered that couldn't eat any dairy (including casein), sugar, onions, and garlic as the result of an elimination diet.

After starting the gluten free diet, I found that my emotions leveled off. I also found that my thinking was more clear and less "foggy". When I reintroduced wheat back into my diet as an experiment after about 2 months, I had stomach pain, mild facial numbness (similar to MS) and severe depression the next day and it really scared me. I seemed to feel better a few days later. After about 7-9 months of being gluten free, I mistakenly had a lot of wheat for dinner at a restaurant. That night I was in so much abdominal pain and it didn't heal completely for a couple of months.

Recently, I ate out at a fast food Chinese restaurant where I knew that the soy sauce probably contained wheat. I was feeling pretty good so I decided to take the plunge and eat it anyway. My stomach has hurt ever since. The pain is mainly in the upper center to upper right side, and is less when it is empty.

Another bit of info is that one of my cousin's daughters had autistic behavior, and once taken off of gluten and dairy, her personality completely changed. It seems to be from our side of the family rather than from her husband's side.

Thanks for your help!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

honestly it doesn't matter if it's Celiac or Gluten Intolerance, the end result is you treat both exactly the same, strict lifelong adherance to the gluten-free diet. You've self diagnosed yourself with the most valid diagnostic tool their is, dietary response. You know you need to be gluten-free, and you are also on your way to figuring out your other intolerances.

welcome to the crew!

SchnauzerMom Rookie
SchnauzerMom
Posted

It definitely sounds like you need to avoid gluten. If you feel better without it then avoid it. There is a lot of stuff out there to eat that doesn't have gluten. You don't have to feel deprived.

tummytroubles Newbie
tummytroubles
Posted
  • Author

Thanks for your responses :-)

I'm definitely going to stay on a gluten free diet. I wasn't convinced before that I might have to be concerned about small amounts of gluten. I thought it wouldn't make a big difference; especially since I may not even have celiac disease. For other intolerances I sometimes can have small amounts of the food without major consequences. I guess it must be different with gluten for me for some reason.

Is there any value in getting tested to know whether or not I have celiac disease? It seems that many tests are pretty expensive, but if they're worth it I guess that doesn't matter so much. The thing I was thinking was that it could be important if I were to have children and also to let my family know so they might think about getting tested too. Unfortunately, most of my friends and family think I have gone off the deep end with my diet and that I'm just too "high-strung" and picky. They seem to think that if I would just lighten-up most of my digestive problems would just go away and I would be normal again. It makes it pretty tough.

sspitzer5 Apprentice
sspitzer5
Posted
Is there any value in getting tested to know whether or not I have celiac disease? It seems that many tests are pretty expensive, but if they're worth it I guess that doesn't matter so much. The thing I was thinking was that it could be important if I were to have children and also to let my family know so they might think about getting tested too. Unfortunately, most of my friends and family think I have gone off the deep end with my diet and that I'm just too "high-strung" and picky. They seem to think that if I would just lighten-up most of my digestive problems would just go away and I would be normal again. It makes it pretty tough.

Sadly, the standard medical tests likely won't help in your case because you've already been gluten free for so long. To get the right results, you would have to reintroduce gluten for some period of time and then get tested. I haven't been willing to do this because I know I would be miserable. There are a lot of us in this boat.

The other option would be to do something like Enterolab. They use a stool test and can supposedly pick up gluten intolerance even if you aren't eating gluten. However, mainstream medical doctors don't recognize this test as valid yet. I tested positive with Enterolab. I had 2 biopsies and they were both inconclusive since I'd already been gluten-free for 5 months.

Bottom line is, listen to your body. If you don't feel well eating gluten, don't eat it. But, I do understand that people sometimes think you are crazy. I guess it's one of those situations where you figure out who your real friends are!

S

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,739
    • Most Online (within 30 mins)
      7,748
    Klsdurbin
    Newest Member
    Klsdurbin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Scott Adams · Posted

      I haven't heard of them before, but a significant portion of dietary supplements are produced by a handful of large contract manufacturers. These companies have the facilities, expertise, and certifications to produce supplements at scale, making them attractive partners for brands that don’t have their own manufacturing capabilities. I doubt Forvia manufactures them directly, so it is hard to know if they are just doing clever marketing to a certain malabsorption crowd, or they actually have unique product.
    • Scott Adams
      Not sure if this is Celiac or just a gluten-free intolerance

      By Scott Adams · Posted

      That’s an interesting observation! The timing you mention does raise questions about the relationship between modern wheat varieties and the emergence of Non-Celiac Gluten Sensitivity (NCGS). Norman Borlaug’s work on high-yield, disease-resistant wheat during the Green Revolution significantly increased global food production, but it also led to changes in the composition of wheat, including higher gluten content to improve baking qualities. While NCGS was formally recognized as a condition in the 2010s (https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-10-13 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/) , it’s important to note that the awareness and diagnosis of gluten-related disorders have evolved over time. Some researchers suggest that modern wheat breeding practices, along with changes in food processing and gut health, may contribute to the rise in gluten sensitivity. However, the exact mechanisms behind NCGS are still not fully understood, and it remains a debated topic in the scientific community. It’s also worth considering that increased awareness and improved diagnostic tools have played a role in identifying conditions like NCGS that may have existed but were previously unrecognized. The interplay between genetic, environmental, and dietary factors makes this a complex issue, and more research is needed to fully understand the connections.
    • Scott Adams
      Trader Joe's strikes again

      By Scott Adams · Posted

      Here is a recent reply to a Celiac.com email asking for comment about gluten contamination detected in their bakery products: You can read more about it in this thread:  
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      @Marie70, it is very important that your daughter not begin experimenting with eating gluten free until all testing for celiac disease is complete. Doing so will invalidate the testing. Normally, the testing involves two stages. The first stage is blood antibody testing as per the article linked by Scott above. As you can see from the article, there are a number of tests that can be ordered when diagnosing celiac disease but most physicians will not order a complete panel. At the very minimum, your daughter should request two antibody tests, "total IGA" and "tTG-IGA". The tTG-IGA is considered the centerpiece of celiac disease testing but if total IGA is low (i.e., if she is IGA deficient), this will result in an artificially low tTG-IGA score and possibly a false negative. Many general practitioners are not very knowledgeable about celiac disease testing so we have found we have to be a little assertive in order to get proper testing done. I don't know under the relational circumstances how much input you will have with your daughter about these things but I thought I'd pass the info on to you anyway. The second stage of celiac disease testing involves an endoscopy with biopsy of the small bowel lining which is then sent to a lab for microscopic analysis. This checks for damage to the small bowel lining and is confirmation if any of the blood antibody tests are positive. It is also considered to be the gold standard of celiac disease diagnosis. Again, should her antibody testing be positive, your daughter would still need to be consuming gluten until after the endoscopy/biopsy is complete.
    • Klsdurbin
      Did I outgrow celiac

      By Klsdurbin · Posted

      No!!! Celiacs disease does not go away. You can’t outgrow it, and if all proper diagnostic procedures (blood test and endoscopy) were followed when you were 8, it’s almost impossible to be mis-diagnosed.    stoms and reactions to gluten do change over time, but the fact you have celiacs does not.    I think that a lot of people misunderstand that the goal to managing your celiacs is to eventually test negative for celiacs. This does not mean it went away, it means that your gluten-free diet is working and you’re no longer producing the anti-bodies that will wreak havoc on your health.    if you can access the medical records from when you were 8 and have a GI doctor review them, I would highly recommend you do this. 
×
×
  • Create New...