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

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

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

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

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
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

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

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
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
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.