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

What Could It Be?


sora

Recommended Posts

sora Community Regular

Hon, I hope you keep epipens around?

Yes, I do. And a puffer and pills.


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



Celiac.com Sponsor (A8-M):



  • Replies 62
  • Created
  • Last Reply
IrishHeart Veteran

Hon, I hope you keep epipens around?

Yes, I do. And a puffer and pills.

I had to use a puffer for a while myself and my poor brother has terrible asthma, so I know how frightening it can be to gasp for breath.

Are you feeling better now, by the way?? Hope so.

sora Community Regular

I had to use a puffer for a while myself and my poor brother has terrible asthma, so I know how frightening it can be to gasp for breath.

Are you feeling better now, by the way?? Hope so.

Yes I am. So far I am having a good day. The sun is shining and everything is white from the snow, it's so pretty.

I think you are close so must be about the same there?

IrishHeart Veteran

Yes I am. So far I am having a good day. The sun is shining and everything is white from the snow, it's so pretty.

I think you are close so must be about the same there?

No snow here! None. Zip. Nada. weird....After last year, this is a miracle!! :lol:

So glad you are feeling better--maybe your de-crumbing efforts have helped knock down the exposure :)

Stay well!!!

IrishHeart Veteran

AHA!

Now that you have added WHEAT allergy and chemical sensitivity to your signature line---some of the advice regarding "gut healing" and celiac CC issues may have seemed inappropriate/unhelpful to you. No wonder you had to keep clarifying things for us! :) Now we get it!

So you are not a celiac, then? But you do have some GI problems?

I hope you are feeling better since the last posting!

Cheers,

IH

sora Community Regular

AHA!

Now that you have added WHEAT allergy and chemical sensitivity to your signature line---some of the advice regarding "gut healing" and celiac CC issues may have seemed inappropriate/unhelpful to you. No wonder you had to keep clarifying things for us! :) Now we get it!

So you are not a celiac, then? But you do have some GI problems?

I hope you are feeling better since the last posting!

Cheers,

IH

Yes, I thought it would help if I put that info in the signature.

I have been thinking about allergy and celiac this week, thinking to post some questions when I got them sorted in my head.

My first Doc appt. she wanted me to get tested for Celiac. I said I don't have that, it's an allergy. Besides I would rather put a gun to my head than eat wheat again. :(

Now as I read this board I can look back and see some things that make me think I may be Celiac too.

I have had more gut issues since going gluten-free and wondered if it was just the adjustment of diet or a new major awareness of how I react and feel.

I also look back and realize every symptom I had I put down to aging or stress, short term memory loss, pot belly, itchy head etc.

I also have had migraines since childhood and what my family called sensitivities. I could only use Dove soap, others would dry my skin and cause itch. Lots of little things like that.

I am brain foggy at the moment so I want to take some notes and then I can come back with some questions.

Generally I am feeling better but I did get a reaction at the grocery store the other day, not bad though.

IrishHeart Veteran

Besides I would rather put a gun to my head than eat wheat again. :(

Now as I read this board I can look back and see some things that make me think I may be Celiac too.

I have had more gut issues since going gluten-free and wondered if it was just the adjustment of diet or a new major awareness of how I react and feel.

I also look back and realize every symptom I had I put down to aging or stress, short term memory loss, pot belly, itchy head etc.

I also have had migraines since childhood and what my family called sensitivities. I could only use Dove soap, others would dry my skin and cause itch. Lots of little things like that.

I am brain foggy at the moment so I want to take some notes and then I can come back with some questions.

Generally I am feeling better but I did get a reaction at the grocery store the other day, not bad though.

Well, those are some celiac/gluten symptoms for sure.

You may need to avoid rye and barley and all gluten derivatives too. Not just wheat.

Just a thought. :)


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



Celiac.com Sponsor (A8-M):



sora Community Regular

Well, those are some celiac/gluten symptoms for sure.

You may need to avoid rye and barley and all gluten derivatives too. Not just wheat.

Just a thought. :)

Oh I have. I am fully gluten-free. It's is too hard to just avoid wheat. I have not even had oats since the beginning, can't find any gluten-free oats yet. Corn meal either so I am just using gluten-free corn flour for tortillas .

I have started a list and will keep adding as I remember things and come up with questions.

Thanks IH.

IrishHeart Veteran

Oh I have. I am fully gluten-free. It's is too hard to just avoid wheat. I have not even had oats since the beginning, can't find any gluten-free oats yet. Corn meal either so I am just using gluten-free corn flour for tortillas .

I have started a list and will keep adding as I remember things and come up with questions.

Thanks IH.

Glutenfreeda makes gluten-free oats.

also,

Open Original Shared Link

Some will disagree with this suggestion( because they say BRM makes them react) but Bob's Red Mill makes gluten-free Oats and Corn meal.

Nutsonline has gluten-free corn grits. Both have gluten-free dedicated facilities and I have no issues with them.

Avoid buying them from bulk bins like at health food stores; that's not a good idea. Too much CC.

sora Community Regular

Glutenfreeda makes gluten-free oats.

also,

Open Original Shared Link

Some will disagree with this suggestion( because they say BRM makes them react) but Bob's Red Mill makes gluten-free Oats and Corn meal.

Nutsonline has gluten-free corn grits. Both have gluten-free dedicated facilities and I have no issues with them.

Avoid buying them from bulk bins like at health food stores; that's not a good idea. Too much CC.

Thanks for this info, I will check it out.

  • 2 months later...
Jacqueline Clark Newbie

Dont they inject the Butterball turkeys with some kind of oil to make them juicy? Maybe whatever is in the oil mixture got you.

Yes, everyone needs to read, read and read some more. Call or email companies. I think Butterball was one that is not gluten free.

kareng Grand Master

Yes, everyone needs to read, read and read some more. Call or email companies. I think Butterball was one that is not gluten free.

Butterball is gluten-free. You can check the website. We have had more recent discussions about turkey.

T.H. Community Regular

Oh, late to the conversation, but figured I'd add in what info. I have on sulfites, in case it helps.

Salt can be bleached with sulfites and cause a problem. Most processed corn ingredients, like citric acid or cornstarch, is sulfited (it's soaked in a sulfited solution before processing). Grapes are typically no good due to many of the additives used during farming in grapes specifically. Some folks I know have some trouble with olives, as well, and some olive oils. Our water supply can have sulfites added, as well as bottled water, in low enough amounts that it doesn't require a label, but might be an issue if you react to lower levels. Dasani water and Perrier water are a problem for some sulfite sensitive folks. Crystal Geyser seems to be less of one.

Some sulfite sensitive folks also have trouble with foods that are naturally higher in sulfur (I believe it's due to how our bodies change this to a usable form, but I'm still learning about it, honestly.).

Foods that are naturally high in sulfur, with no additives involved, are pork, eggs, the brassica family (cabbage, radishes, mustard greens, and so on), and the allium family (onions, garlic, leeks). Fish and shellfish can be an issue.

Some in the food families are worse than others, so not all will make a person with this problem react, necessarily. It's also quantity dependent.

For folks that have this problem, the fumes from cooking foods high in sulfur can cause a reaction - inhaled or ingested, it doesn't matter, really. Car exhaust is sulfite dioxide and so if you inhale that a lot it will tend to make things worse, too, if you are very sensitive, or have had a lot of sulfites that day.

So that ham, for example, even if gluten free and without added sulfites, could still cause a problem, potentially.

There's a yahoo group called sulfitesnomore for folks who have this issue with might be of some use for you.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      High TTG-IgG and Normal TTG-IgA

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

      High TTG-IgG and Normal TTG-IgA

    3. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    5. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.