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

Where Am I Going Wrong?

Zell

By Zell
in Coping with Celiac Disease

Recommended Posts

Zell Newbie
Zell
Posted

Hey everybody first off let me say that I am new to all of this.I have been trying the diet for a few weeks....and have noticed some improvement already.However I am really confused right now because I was sick all day long....and bad.The only thing I changed in my diet was last night I added some soy sauce to my rice.It said wheat free(Eden Organic Tamari).....is the alcohol the problem?Has anybody else had this???

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

Celiac.com Sponsor (A8-M):


Montana Julie Newbie
Montana Julie
Posted

I eat Tamari sauce now too - it SEEMS to be OK with me - but I'm still adjusting to the new diet. I hear there's a period where many folks go through a recurrence of symptoms. Maybe that's what is going on with you?

I've also heard of people allergic to soy. I don't know enough about the origins of Tamari - perhaps that's part of the problem?

Good luck figuring it out! I'm learning too.

Julie

AndreaB Contributor
AndreaB
Posted

Double check the label first. It very well could be soy. Soy can cause the same problems in people as gluten. Do you eat any other soy containing products? I'm one of the ones that is intolerant to both (soy and gluten).

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

Welcome Zell --

Soy is poison, they don't tell you that. And some people are in denial. I found out the hard way too after it caused a thyroid problem for me. SOY is in everything and it is hidden on labels like VEGETABLE BROTH, NATURAL FLAVORING, LECITHIN, they hide it within other names. TUNA FISH cans say veggie broth and you have no idea its soy. There are NOT many types of cans or packaged tuna that does NOT contain SOY.

Pick up a couple of great books that will give you an understanding of celiac disease.

Dangerous Gains

The Paleo Diet

Both books will make this much easier to deal with. You will understand how and what to eat. If you can't afford to buy them, go to your local library and do an inter library loan. They will get it for you from another library. Both books are worth the time to read it will make the quality of your health improve.

Stay tuned in here. It's a great forum and the people here care about you getting better.

Be well!

samking72 Rookie
samking72
Posted

"Wheat Free" doen't always equal "Gluten Free" Be careful!!

ravenwoodglass Mentor
ravenwoodglass
Posted
Hey everybody first off let me say that I am new to all of this.I have been trying the diet for a few weeks....and have noticed some improvement already.However I am really confused right now because I was sick all day long....and bad.The only thing I changed in my diet was last night I added some soy sauce to my rice.It said wheat free(Eden Organic Tamari).....is the alcohol the problem?Has anybody else had this???

Gluten is most often a delayed reaction. Check not just what you ate right before you felt ill check the foods from 1 to 3 days before also. The delay from an intolerance reaction can make pinpointing what 'got' you a bit tough at times. I hope you feel better soon.

key Contributor
key
Posted

Yeah, be careful. Wheat free just means there is no wheat. It could have barley, malt, oats or rye in it or something in the flavoring with those things. It really needs to say "gluten free".

My dad bought me some Paul Newman cookies that said "wheat free" on the package. He was so excited to find something for me. I read the package and the first ingredient was Barley flour and it had oat flour I believe. So you do have to be careful.

Sorry you are sick. It can take a while to get better and you may have bad days still, even when you think you were gluten free.

Monica

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
Gluten is most often a delayed reaction. Check not just what you ate right before you felt ill check the foods from 1 to 3 days before also. The delay from an intolerance reaction can make pinpointing what 'got' you a bit tough at times. I hope you feel better soon.

This is #1

Soy isn't something I think is great in general but I don't avoid it like gluten.

Most of the negative things about soy do not apply to fermented products such as tamari.

All tamari should be 100% fermented soy.

I think soy is one of those foods that if you have autoimmune disorders and you are not allergic/sensitive should be taken in moderation. Most far eastern cultures eat far less soy than we Westeners imagine.

There are NOT many types of cans or packaged tuna that does NOT contain SOY.

I believe you but Europe is way different. I am reasonably sure in this because I just got back from a tuna expedition !! What I wanted was either tuna in water or olive oil so I went through the lot, I also wanted albacore steaks not bits n pieces.

Not a single can had soy except perhaps the Tuna in mayo which I didn't bother to read and the tuna salad cans, again didn't even pick up.

In the end I found tuna in olive oil and also some in sunflower but non in water without added salt.

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted
I think soy is one of those foods that if you have autoimmune disorders and you are not allergic/sensitive should be taken in moderation.

This is why the RX's printed forms from the mainstream pharmacy have a WARNING do NOT consume ANY soy products when taking these medications.

I wasn't reactive to soy for 5-year gluten & dairy free - then it hit me like a ton of bricks. I was in denial too (at first), but know I know better.

Archived

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

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


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    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

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...