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

Things Are Going Down Hill....


pixiegirl

Recommended Posts

pixiegirl Enthusiast

I'm one of those in the gray area, so far all test negative but gluten-free diet really helped me for 4 weeks.... however... for some reason the runs have come back, not as bad as they were pre gluten-free but not good either. I know for sure I have not been glutened. I have only eaten at home and mostly just fresh foods.

I've been eating a lot of spinach and cabbage (don't ask why, i'm not sure, just a yen I guess and making stir frys a lot, using La Choy soy sauce which every list says is gluten-free and the ingrediets appear to be). I also went to Whole Foods Market and bought a gluten-free pound cake, its made by a popular gluten-free company (can't think of the name right now) but I'm pretty sure that is really gluten-free.

I'm not a huge milk drinker, I've always had Lactaid milk in my tea in the morning and thats it.

Sigh, so why did I go down hill? What happened, I'm so disappointed right now, I've been so careful and I was feeling so good and like I had said in a previous post all my symptoms miraculously disappeared. Well now I'm more then halfway back to where I started. My belly is grumbling constantly again. Oh well, was looking for ideas and wanted to vent, I'm so upset.

I received my entrolab stuff in the mail and will do it and send it in on monday but now I'm wondering if I need to do that full food allergy stuff with York. (going to go broke!)

thanks for listening! Susan


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



Celiac.com Sponsor (A8-M):



Guest Lindam

Please don't get so discouraged. I was diagnosed back in March and have had many problems. At first IBS, then Spastic colon to final diagnosis of Celiac. I was told that once you are off the gluten, you could also find what other food allergies you have. So here I was, no more gluten, trying so hard to be good, still getting so sick. So about 3 weeks ago I had a horrible attack and the doctor just gave me more pills to calm my stomach down. That worked for about a week, until 2 weeks ago another attack came on and this time they found I had a gallbladder problem. So out that came. May I say after all this, I feel like a million dollars. I don't know that my gallbladder wasn't the problem all the time, but the doctors sure seem to think that it was.

Feel better, and keep a stiff upper chin. It will get better!

Linda :)

Donna F Enthusiast

Susan,

I don't know how it affected you before you went gluten-free, but all that cabbage and spinach sure would send me to the bathroom! Perhaps you are not so tolerant of those as you used to be? Maybe smaller portions? Or try eliminating them from your diet for a few days until you get yourself back to normal.

I felt great after I went gluten-free too, but after a while I found myself getting more sensative to other things. And if you have to prepare gluten-containing things for other people in your family, or if someone in your home is contaminating something, there's always that possibility too. Heck, I've gone to Whole Foods and gotten sick when I got home! I think it was the bakery - flour in the air, getting in the lungs, eyes and mouth no doubt! Could be something you were contaminated with days ago that is taking a while to get out of your system. My metabolism is very fast, so, thankfully, when I have a problem, it's over pretty shortly, but other people take longer to get it all out.

Believe it or not, aloe juice may help too. I drink aloe juice every day, but more when I don't feel good. I think it cleans out the system and it's EXCELLENT for healing, inside AND out! You can get it pretty cheap in any health-food store. I pay about $6 for a 32oz bottle and drink at least 2oz every morning, and 2oz every few hours if my system is upset.

Hope you're feeling better!

-donna

tarnalberry Community Regular

The up in veggies - particularly those two - may be part of the problem. Does the issue subside if you reduce your intake there?

alltourmaline Rookie

Susan,

I sympathize with you. I felt great the first two weeks on the gluten-free diet and now I seem to have random attacks too. I wonder if we become more sensitive to gluten once we start eliminating it. I wish I could give you some advice, but since I am new to this, I will just offer my support and good wishes.

pixiegirl Enthusiast

Thanks for the support everyone, I really needed it. I'm laying off the spinach and cabbage today, I hope that helps and I understand the 2 steps forward, one step back thing but darn, I was feeling so good. I do feel a bit better today and my belly is quiet so thats good. I actually had an early dinner at Outback Steak house and they seemed very aware of the gluten thing. So far I feel good.

Again, thanks for the support and the ideas!

Susan :unsure:

  • 3 weeks later...
tom Contributor

Susan,

Please try dairy-free for a couple days. It made a world of difference for me.

And that does not mean just lactose-free. Even the alleged "non-dairy" creamers contain casein (a milk derivative). The labels of these alleged "non-dairy" products actually have the words "a milk derivative", yet they somehow are allowed to put non-dairy in BIG letters on the front.

The Silk brand of soymilk works great for me over cereal and in coffee. (the company, White Wave, seems to be renaming/rebranding so it may have a diff name at your local store. Sorry i don't recall the new names right now, but the small print will say mfgd by whitewave)

Upon 1st going 100% gluten-free, i felt a ton better but it wasn't until starting dairy-free that i really felt glad to be alive again.

A good list of ingred to avoid is at Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

Hi Susan,

Definitely the cabbage. My celiac specialist specifically told me to stay away from cabbage, as it produces gas and abdominal pain.....

Karen

wclemens Newbie

Susan,

I believe we do get more sensitive to everything as we become more gluten free. I first eliminated all grains, then had to eliminate all milk and dairy products as well, then egg whites, and yeast. It's hard to read each and every label before putting any food in my mouth, but that seems to be what it takes. Every person has their own set of intolerances, I know, so I hope that you can soon discover what is causing your distress. The suggestion about avoiding casein is so true! And add whey to that list. They both come from milk. I've found the only way to learn what I can tolerate is to keep my diet simple and add only one new food at a time, then I will feel the effects almost immediately. Good luck in your new adventure at remaining gluten free! Welda

pixiegirl Enthusiast

Thanks for all the info, it was hard enough going gluten-free, I hate the idea of soy, milk, cabbage, yeast.. on and on, but i'm slowly going to eliminate stuff I guess. I had a McCormack spice mix last night on my chicken (Montreal chicken seasoning, I think) and I got really sick last night, the ingredient list looked ok to me but... every thing else I had was totally gluten-free (chicken, broccoli, baked potato) so it had to be the spice. Sigh.

Susan :blink:

lovegrov Collaborator

McCormick clearly lists any gluten so if it read OK, it was gluten-free. And I'm pretty certain the Montreal seasoning IS gluten-free. But of course with any processed product, contamination can always happen. And my wife, who is allergic only to shellfish, once felt bad after eating that seasoning.

richard

darlindeb25 Collaborator
:( i had broccoli the other night and it tased so good :P but it didnt agree with me, not one little bit :angry: --i have never done well with the broccoli, cauliflower, cabbage, brussel sprouts groups of food--i love them, but just way to gassy for me---burdee told me to try beano or excuseme next time and see if that helps--i may just do that---you may not have glutened yourself, just gassed you up :P deb
ssantori Newbie

I try to stay away from Soy sauces or spice/seasoning mixes. Some of them even use flour to prepare the mix, to prevent clumping. did you know that some places cut the pepper shakers with flour? I didn't know La Choy Soy Sauce was gluten-free. I use wheat free tamari sauce. This site has a list of condiments, but La Choy Soy Sauce is not on it.

I don't know about the vegetables causing those problems. With everyone, I mean. For many of us, those are the healthiest foods we can eat. My celiac daughter can eat beans endlessly. My family has always eaten cruciferous vegetables and also lots of beans (in the Southwest). Perhaps you have to get used to it, but it has never caused any of us any discomfort. I have heard that you should work up to it if you are not used to it.

I do think that previous damage from years of undiagnosed celiac disease can be hard to manage. Does it heal after awhile?

lovegrov Collaborator

I've heard this rumor about pepper and flour but don't believe it to be true. I've certainly never found it -- besides, it would gum up the pepper shakers if it got damp. I think people can relax and use the pepper.

richard

sophie2040 Newbie
i have never done well with the broccoli, cauliflower, cabbage, brussel sprouts groups of food--i love them, but just way to gassy for me---burdee told me to try beano or excuseme next time and see if that helps

:P deb

Just a note about beano....my doctor told me that it's not recommended for people with asthma, as it can bring on or worsen breathing problems.

sophie2040 Newbie
:( i had broccoli the other night and it tased so good :P but it didnt agree with me, not one little bit :angry: --i have never done well with the broccoli, cauliflower, cabbage, brussel sprouts groups of food--i love them, but just way to gassy for me---burdee told me to try beano or excuseme next time and see if that helps--i may just do that---you may not have glutened yourself, just gassed you up :P deb

Just a note about beano....my doctor told me that it's not recommended for people with asthma, as it can bring on or worsen breathing problems.

Sophie

sophie2040 Newbie

Oooops sorry about that, my msg appeared twice. Guess it was all that talk about gas, it made me 'repeat' myself....... Excuse the pun :o}

Sophie

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.