Jump to content

  • 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

Going Back To Gluten

Aightball

Recommended Posts

Aightball Apprentice
Aightball
Posted

Hi all.

First off, I hope this is the correct forum. If not, please re-direct me.

My doctor and I have talked and have agreed that I may not need to be gluten free after all. I have ahd some diahreea and problems with an ovarian cyst of alte and have not had any gluten.

I have been trying things here and there, but aside from Twizzlers, that's been it. Now that I am recovering from the stomach flu, dad has suggested a couple of soda crackers just to settle my stomach.

Would this bea goodplace to start? I'm not sure where to start, but am looking forward to getting backto gluten.

My doctor said that if gluten's my problem I should be seeing improvement by now (I"ve been gluten-free since January), and esp. since I've seen improvement with my dairy allergy since going dairy free in January as well.

Where do you start?

-Kel

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

Celiac.com Sponsor (A8-M):


kejohe Apprentice
kejohe
Posted

Well... being gluten-free since January isn't really that long. I mean, I have heard countless stories about people who have been gluten-free for nearly a year before they begin to see imporvement. I guess it just depends on the amount of damage you have before going gluten-free. I hope you and your doctor are doing thie right thing.

Re: where to start, I would think baby steps are best, if you do have to go back on gluten. Maybe a couple of crackers are a good idea, or a half slice of bread. Something simple. And stick with the same food in small quantities for a few days at a time, just like an elimination diet. That way, if you do have negative reactions, it's very easy for you to pinpoint the offending food.

Good luck, and take care of yourself.

Kim Explorer
Kim
Posted

Were you accurately diagnosed celiac disease -- biopsy/blood test? If so, I'd give it more time to show improvement and would not start taking in gluten. You may wish to get a second opinion from a medical doctor (gastroenterologist) who specializes in celiac disease.

good luck.

Aightball Apprentice
Aightball
Posted
  • Author

HI :)

Kim>

I wasn't actually diagnoised with celiac disease. I've had a biopsy and have talked with a GI doc. My allergist suggested I try being gluten-free for a couple of weeks and see how I feel. I felt somewhat better, but not great, even now. That's why my doc and I decided that maybe that this isn't the answer to my problems.

I'm getting my cyst checked out on Monday to see if that's causing the problem. I've had the stomach flu this week and now canont eat *anything* without diahreea :(. Hoping to be over that soon, too, as I am hungry, just can't seem to eat anything.

-Kel

wildones Apprentice
wildones
Posted
My doctor and I have talked and have agreed that I may not need to be gluten free after all. I have ahd some diahreea and problems with an ovarian cyst of alte and have not had any gluten.

I have been trying things here and there, but aside from Twizzlers, that's been it. Now that I am recovering from the stomach flu, dad has suggested a couple of soda crackers just to settle my stomach.

My doctor said that if gluten's my problem I should be seeing improvement by now (I"ve been gluten-free since January), and esp. since I've seen improvement with my dairy allergy since going dairy free in January as well.

Where do you start?

-Kel

Hi

I would definately recommend a much longer TOTAL elimination of gluten from your diet. It will NOT hurt you, it is actually a very healthy diet and may be very beneficial to you. Problems with dairy are often associated with gluten intolerance.

Are you certain you actually had the flu ? Vomiting and diarrhea can easily happen if you are 'sort of' gluten free (your body is starting to heal) and then you introduce even small amounts of gluten (twizzlers).

There is along list of foods on this site that need to be eliminated in order to actually be gluten free.

You do not have to have celiac disease to have a problem with gluten. Celiac disease is when verifiable damage has occured. Please read this article from this site.

www.celiac.com/st_prod.html?p_prodid=946&p_catid+5&p

debmidge Rising Star
debmidge
Posted

Just one or two comments....

Did you have a blood test for the antibodies? Perhaps your biopsy is negative as the test equipment didn't pick up damaged tissue and took a healthy piece, as sometimes can happen in biopsies?

Were you ingesting gluten unknowingly during the gluten-free diet period?

And does the doctor have a clear plan of what to do next since he has now advised that you must not be sensistive to gluten?

plantime Contributor
plantime
Posted

The twizzlers I looked at had wheat starch in them. If you are consuming even that little bit, it will prevent you from healing. Try eating just meat, fruit, and vegetables for 4 weeks. No processed foods, no dairy. It is very common to have celiac without a positive biopsy. I read somewhere that celiac is actually the severe damage done by undiagnosed gluten intolerance. Make certain that you consume absolutely NO gluten for 4 weeks to test the diet properly.

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

Celiac.com Sponsor (A8-M):


Aightball Apprentice
Aightball
Posted
  • Author
The twizzlers I looked at had wheat starch in them. If you are consuming even that little bit, it will prevent you from healing. Try eating just meat, fruit, and vegetables for 4 weeks. No processed foods, no dairy. It is very common to have celiac without a positive biopsy. I read somewhere that celiac is actually the severe damage done by undiagnosed gluten intolerance. Make certain that you consume absolutely NO gluten for 4 weeks to test the diet properly.

I have been extremely careful. The Twizzlers were an experiment and they didn't bother me at all. The flu has been going around, and I know that's what I had. Right now, we've had two of our 6 kids come down with it, too, so it's going around.

I have been extremely careful over the last three months. If something made me sick, I stopped eating it. I did the two weeks the allergy doc suggested, and did "eh" on the diet. Not great, not bad. After the two weeks, I tried a few things, got along fine.

I have had a dairy allergy before, so that was nothing new to me. Upset stomachs tend to run in our family, but we all know what we need to avoid to be happy and healthy.

THe thought right now is that we are going to rule out problems with my cyst. Moms had two of those before and both have messed with her stomach to an extreme, though that was back in the 50s and 60s. However, I feel that my cyst may be the root of my problem, not gluten. I am going to try gluten for a while and then if I start having problems, go off gluten again and see what happens.

Blood test> No, I have not had this done as of yet. That's another reason I'm excited to back on gluten, is that maybe I *can* have this blood test. I would've had plenty of gluten in me at the time of the biopsy, though I do understand that they can take a healthy piece, since it's random.

Thanks for the advice :). I'm having a very down day, since the end of this flu is wreaking havoc on my system right now, but hope to be in a better mood soon.

-Kel

lauradawn Explorer
lauradawn
Posted
I have been extremely careful. The Twizzlers were an experiment and they didn't bother me at all. The flu has been going around, and I know that's what I had. Right now, we've had two of our 6 kids come down with it, too, so it's going around.

I have been extremely careful over the last three months. If something made me sick, I stopped eating it. I did the two weeks the allergy doc suggested, and did "eh" on the diet. Not great, not bad. After the two weeks, I tried a few things, got along fine.

I have had a dairy allergy before, so that was nothing new to me. Upset stomachs tend to run in our family, but we all know what we need to avoid to be happy and healthy.

THe thought right now is that we are going to rule out problems with my cyst. Moms had two of those before and both have messed with her stomach to an extreme, though that was back in the 50s and 60s. However, I feel that my cyst may be the root of my problem, not gluten. I am going to try gluten for a while and then if I start having problems, go off gluten again and see what happens.

Blood test> No, I have not had this done as of yet. That's another reason I'm excited to back on gluten, is that maybe I *can* have this blood test. I would've had plenty of gluten in me at the time of the biopsy, though I do understand that they can take a healthy piece, since it's random.

Thanks for the advice :). I'm having a very down day, since the end of this flu is wreaking havoc on my system right now, but hope to be in a better mood soon.

-Kel

"If something made me sick, I stopped eating it."

Sorry, my quote didn't work. Anyway, does this mean, that you would eat something and if you had a reaction to it... avoid it? It just wasn't very clear. If you consume gluten, even in the smallest of amounts, you can have a reaction days later. You may not even know. In all honesty most of us probably notice a reaction within minutes or hours, but it is possible. You said in your post, "that after a couple weeks you tried a few things and got along fine." Two weeks is probably not enough time to see a signifcant enough change, to notice a difference after eating something with gluten in it.

Hopefully they will find out something soon.

Aightball Apprentice
Aightball
Posted
  • Author

Laura>

Don't worry :), the quote thing gets me too sometimes, lol :).

Yes, I should have been more clear, in that if I had what I thought was a reaction I avoided that thing.

I guess my thing is that even when I *did* have something, even days later, I still felt fine. It's actually normal for me to have an upset stomach from time to time, as it is for my parents.

I'm hoping, too, that we find something. I keep meaning to check back with my GI doc, but will wait now until we hear from the ultrasound, since I'll be back at the GI's if that doesn't help us.

I'm wondering if it's the cyst (or possible lack of) that's doing this? I don't know much about those. I also plan to chat with my allergist on Monday to see what he thinks about going back to gluten. Right now, I'm just eating anything that settles. I've never had the diahreea hang on this long after the stomach flu :(, and am on an enterobiotic to replace the good bateria that I seem to have lost. Trying to have some protein tonight :).

Thanks for all the suggestions. I'm kind of nervous to go back to gluten, but I feel that from the few times I've had gluten over the past few weeks, and have done fine even days later, that there may be something else at the root of my problem.

-Kel

confused!

Archived

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

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


  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.