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 Celiac.com!
    eNewsletter
    Donate

I Did Something Stupid....


JerryK

Recommended Posts

JerryK Community Regular

Sigh...severe rookie mistake....

I fell for the label on one of those specialized loafs of breads..."spelt, a natural alternative to wheat".

Spelt was one of those grains that I remember being on one of those "safe grain" lists..right?..right!.(these are the voices in my head at the store)

I was so proud of "my find" and I raced home and made a piece of toast to check it out. Damn it tasted good for "gluten free bread".

THEN I decided to look in "Gluten Free for Dummies"(which I was) the author lists spelt as a sneaky "alias for wheat". Crap did I feel foolish.

That sucker shot thru me like a greased pig at the county fair...

Let the chastising begin!! B)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



chocolatelover Contributor

Hey, don't beat yourself up too badly...I had to ask a friend who is a veteran at this gluten free stuff, because I had read mixed things about spelt. I think it's an honest mistake, and you certainly will never forget it!! I figure every mistake we make like this is just one more to put down as a good old fashioned learning experience. :lol:

Link to comment
Share on other sites
jerseyangel Proficient

Yea, they put on the label that it's an "alternative to wheat" because some people with an allergy to wheat can safely eat it.

It's not safe for us, though :(

You live and learn ;)

Link to comment
Share on other sites
JerryK Community Regular
Yea, they put on the label that it's an "alternative to wheat" because some people with an allergy to wheat can safely eat it.

It's not safe for us, though :(

You live and learn ;)

Yah...glad I only ate one slice....it seems like my body is more sensitive to it now....

hits the reject button in a hurry...

Link to comment
Share on other sites
Ursa Major Collaborator

I hope you feel better soon! Anyway, you'll never forget that spelt is wheat, I'm sure.

I went to a health-food store in Florida a year ago, and told the sales lady that I have celiac disease and wanted to buy some flour I could use. She told me that spelt was safe for celiacs! Fortunately, even though I wasn't sure then, I also wasn't convinced it was safe, and didn't buy it. Good thing, too. I wonder how many people are misled by that lady.

Link to comment
Share on other sites
Slackermommy Rookie

I did a stupid thing today too. I know the chickens at Sam's Club are gluten free, and today they had ribs out. No label like the chicken though. The guy who runs the meat dept was right there, so I asked if they were gluten free too.

He asked some other guy to check the package, and he came back and told me it was gluten free and yeast free too.

I believed him.

So my slamming headache and nausea are either from them or the GI bug that is going around.

I am starting to realize that people will say something IS gluten free if they aren't sure, instead of saying that they aren't sure.

Sigh.

Link to comment
Share on other sites
JerryK Community Regular
I hope you feel better soon! Anyway, you'll never forget that spelt is wheat, I'm sure.

I went to a health-food store in Florida a year ago, and told the sales lady that I have celiac disease and wanted to buy some flour I could use. She told me that spelt was safe for celiacs! Fortunately, even though I wasn't sure then, I also wasn't convinced it was safe, and didn't buy it. Good thing, too. I wonder how many people are misled by that lady.

You are right..spelt is ingrained in my memory. Funny thing is, I don't get much symptoms...

just whoooomp and it's outta here. My body doesn't even bother with cramps or anything <_<

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Jerry:

Ya sure you ain't a Southern Boy. We sure have alot of greased pigs down here. We catch'em and cook'em.

When I left the city and moved here where my husband grew up, we were invited to a Pig Pick'in.

I asked what was that, and said "I don't think sooo"!! Ever been to a Turkey Shoot? I thought they shot turkeys.

Never-the-less, the learning curve is steep. We'll keep you on track. Hope you feel better by Saturday.

Lisa

Link to comment
Share on other sites
Ruth52 Newbie

I was also caught with the Spelt bread thing. I just wanted to have a piece of toast and I thought I had made the best find of my life.

Unfortunately for me it was only after the second piece that the folly of my eating really hit me - never again!

Glad to know I'm not the only one.

Ruth

Link to comment
Share on other sites
JerryK Community Regular
Jerry:

Ya sure you ain't a Southern Boy. We sure have alot of greased pigs down here. We catch'em and cook'em.

When I left the city and moved here where my husband grew up, we were invited to a Pig Pick'in.

I asked what was that, and said "I don't think sooo"!! Ever been to a Turkey Shoot? I thought they shot turkeys.

Never-the-less, the learning curve is steep. We'll keep you on track. Hope you feel better by Saturday.

Lisa

We have greased pigs here in Oregon (Or EE Gun..not..Or EE Gone). Went Chicken pickin...once...never again. I'm learning to never assume anything...

After all this my tests will probably come out negative and they will tell me there is nothing wrong

with me :P

Link to comment
Share on other sites
darlindeb25 Collaborator

After all this my tests will probably come out negative and they will tell me there is nothing wrong

with me

Awwwwwwwww Jerry, I think the spelt already proved you can't have gluten!!!!!

Link to comment
Share on other sites
jerseyangel Proficient

I have a spelt story:

A couple months ago, I was watching QVC :ph34r: , and the host was presenting a waffle iron. He said that if you were gluten intolerant, you could always use spelt flour instead to make your waffles.

Well, of course I had to email him and politely set him straight! So, I did, and felt much better :P

I had all but forgotten about it when about 3 weeks later, I got an email from the host saying his wife actually had a wheat allergy and that's why he said it. Now that he knew the difference (thanks to me) , he said he wouldn't make the same mistake again.

Just thought I'd share--a lot of people out there get confused about these things. We always have to be on the ball :D

Link to comment
Share on other sites
zansu Rookie

This was how I (inadvertently) did my gluten challenge :rolleyes: !!! My wheat allergy friend did it to me!

Link to comment
Share on other sites
lonewolf Collaborator
I asked what was that, and said "I don't think sooo"!! Ever been to a Turkey Shoot? I thought they shot turkeys.

Wait, what am I missing? What's a turkey shoot?

Jerry - you're in good company with the spelt. I thought it was okay for me too after avoiding wheat for about 7 years. It just about killed me.

Link to comment
Share on other sites
miles2go Contributor

And don't forget that kamut is an another ancient form of wheat. I was lucky enough to have come across Jax Peters Lowell's advice to "run, not walk" to a nutritionist who gently informed me of those facts even though I wasn't and haven't been medically diagnosed as celiac...although I've done plenty of other stupid things since, not all related to celiac. ;) I've heard others say in line at the marketplace at work that they're gluten-free and then go on to talk about how they're glad they have their spelt bread. I just don't know what to say to folks like that in a fleeting moment of a lunch half-hour's time.

Sounds like you're feeling better, hope that's the case!

Margaret

Link to comment
Share on other sites
ENF Enthusiast

Just today I saw loaves of frozen Ezekiel yeast-free rice bread, but the ingredients on the back of the plastic bag listed wheat as an ingredient. You have to be really careful - even in health-food stores.

Link to comment
Share on other sites
darlindeb25 Collaborator

Yup, I was told Ezekiel bread was gluten free and to try it. I read the ingredients and knew there was no way it was gluten-free. Some people just do not understand what gluten free means.

Link to comment
Share on other sites
  • 2 weeks later...
JEM123 Newbie
And don't forget that kamut is an another ancient form of wheat. I was lucky enough to have come across Jax Peters Lowell's advice to "run, not walk" to a nutritionist who gently informed me of those facts even though I wasn't and haven't been medically diagnosed as celiac...although I've done plenty of other stupid things since, not all related to celiac. ;) I've heard others say in line at the marketplace at work that they're gluten-free and then go on to talk about how they're glad they have their spelt bread. I just don't know what to say to folks like that in a fleeting moment of a lunch half-hour's time.

Sounds like you're feeling better, hope that's the case!

Margaret

When I first went gluten-free I went out and bought all the supplies I needed and did hours and hours of research on my newly diagnosed celiac disease. One day I was eating dinner when I looked at my vitamin label and saw spelt! OMG...I had been glutening myself without even knowing. Also, two other sources of hidden gluten is Fu which means wheat in asian cooking and Hing in Indian cooking. Hing is a nautrally gluten free herb and it's quiet expensive. It is diluted with wheat flour after it's processed. More things that we have to keep a look out for.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...