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

A Few Unrelated Questions About celiac disease/ncgs


sidelined

Recommended Posts

sidelined Apprentice

Hi All,

 

I am a teenager who, due to symptoms both gradual and immediate in onset, suspects celiac disease or NCGS (unfortunately, I didn't get the blood test before cutting gluten). I've been gluten free for 2 months, and I have seen a significant improvement in my symptoms, primarily energy (which has skyrocketed) and digestion (which has improved, but is still subpar). My most alarming symptom pre-elimination was shortness of breath, and that too has alleviated over the past months, yet is still a concern.

 

I have a few questions I've developed over the past few months:

 

1. Is recovery from celiac disease or NCGS usually steady, or are there ups and downs? My experience has been one characterized by periods of significant improvement (almost back to normal), which only days later give way to a relapse back into my prior symptoms. The best example of this is my breathing, which varies significantly day to day. I'm very compulsive about managing CC, so I don't think that it a major factor, but it's certainly possible. (My diet is currently only fresh fruits, roasted veggies, and a variety of animal protein sources).

 

2. Regarding CC, I'm wondering about my family's convection oven. I'm the only gluten free member of the family, so my gluten free dishes (e.g. roasted vegetables) are often in the oven with gluten dishes (e.g. garlic bread). How concerned should I be about this? 

 

3. Also, what is the deal with inhalation of gluten? If I'm talking with somebody who recently ingested gluten, should I worry if they breathe right onto my face? 

 

I would be so appreciative of your thoughts on any or all of the above. Thank you so much!


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



Celiac.com Sponsor (A8-M):



LauraTX Rising Star

Welcome to the forum!  It seems you have read up and familiarized yourself a bit so that is really good.  You may want to get a formal diagnosis some day, just keep it in mind for the future when you have means to.  As for your questions...

 

1. The recovery from celiac intestinal damage can take a while.   Everyone is different, but usually there are a few good months of ups and downs before you start to feel way better, it is a gradual thing.  Being very strict in the first few months helps a lot.  NCGS people can be a little different, but it too can vary.

 

2. With the convection oven, the fan doesn't blow extremely hard, so as long as there aren't a lot of fine loose crumbs or flour particles that can come off the food, I wouldn't worry too much.  Just maybe keep your item on the top shelf, and if there is something that may blow around, you can cover one of the items with foil.  Also, if you ever need to cook something gluten-free on the oven rack itself, put foil down first.

 

3.  When it comes to how you get gluten into your digestive tract, it has to go into your mouth.  The breath of someone who recently ate it is not a problem at all.  If you have a significant other and kiss them right after they ate gluten, then that can be a problem.  The only time where you may want to be careful is if you are cooking, or in the kitchen when people are cooking with flour or a baking mix that can go into the air.  If you think about what happens when you handle flour too rough and it coats everything in the immediate vicinity, that is how it can potentially get into your mouth when it is being handled near you.

FruitEnthusiast Enthusiast

There was someone who posted on this site I believe, and I've read this elsewhere, that being in a bakery, without eating anything makes them sick. I'm not sure how that works, but it happens.

 

If it were me, I would have my own convection/toaster oven that only you can use. I think I've read that there are others who do it that way. Maybe it's not necessary but I always say better safe than sorry. Especially if it's older and has had lots of use. That's just my opinion.

NatureChick Rookie

The only time I worry about breathing in gluten is when there is noticeable dust in the air. That means bakeries. I also left a restaurant when they sat us at the bar where they were making pizzas right on the other side of a low counter. If I had been seated further away, the dust in the air probably wouldn't have been a problem, but I'd still have to think that any food and maybe even the beverages from that kitchen would have had a high likelihood of contamination.

I had major problems in the last few months of my cat's life when I had switched to wheat cat litter but before I knew gluten was a problem for me. I basically had a sinus infection for six months but had no idea why. It was a few months after she died and after I had gone gluten free that I was doing some extensive cleaning in the area where her litter box used to be and put two and two together after getting glutened with no apparent cause. 

So yes, if gluten is in the air, my sinuses will go insane. But my reaction to any sort of glutening has lots of sinus symptoms.

But I don't worry about walking past the bakery counter when I'm at the grocery store. Granted, I wouldn't walk right up to the counter and start touching everything, but in such a large space with so much air movement, dust in the air is not a problem.

I probably wouldn't cook gluten-free dishes in the convection oven at the same time as gluten items unless the dish was covered primarily because of the fan, but I don't have a shared kitchen so I don't really pay attention to these issues. 

I wouldn't worry about anyone breathing on you but I wouldn't kiss them after they just ate gluten. I still love the smell of gluten-filled baked goods. If a plate of cookies were sitting on the table in front of you - not a problem. But if a cookie food fight broke out, I'd run for cover.

I don't know anything about breathing problems so I'll leave that for someone else to answer.

My best advice would be to be cautious but not paranoid and employ common sense whenever possible so that you don't start making your life more difficult by taking unnecessary precautions.
 

surviormom Rookie

I walked into a Panera Bread after being Gluten Free for about 6 months, I was only planning to have a coke and meet a friend there, I had to leave and we had to make a quick change in plans.  We ended up at a PI Wi near by.  My eyes watered, I felt almost like I could not breath.  It was awful.  I could not understand feeling that way just breathing it, but I did.  I got out of there fast.  I have not gone back since.  I have been in other restaurants where I know they are baking, but not a bakery.  Do not like the bakery in a grocery either, I avoid it.  I did not realise a problem before going gluten free.  Only that my eyes watered a lot and I had terrible allergies.  Well, I do not have terrible allergies anymore and my eyes do not water a lot.  There has to be some connection. 

FruitEnthusiast Enthusiast

Good to know. So, I guess there's flour dust in the air? Or is something somehow released into the air by the baking process?

notme Experienced

if there is flour in the air and you breathe it in, it goes into your mouth.  at some point, you will swallow some (ingestion) and that's how you will get cc'd by flying flour.  

 

i use my (shared) oven for baking gluten-free dishes and non gluten-free dished at the same time.  it is also convection.  like laura said, if you're baking something that needs to be uncovered, then put the gluten-free stuff on the top rack.  i bake (wheat) pizzas for my grandkids directly on the oven rack, so if i put my uncovered stuff on the lower rack, there's a chance some stuck on gluten will end up in my stuff.  if you don't have a choice of racks, just cover it with tinfoil.  i also bake gluten-free pizza on upper rack but cover it with tinfoil first.  i use a shared toaster oven but i cover the rack with foil first.  if all you have is a regular toaster, you might want to get one just for you or use toaster bags.  

 

two months isn't very long to see consistent results from the diet, so have patience, young grasshopper :)


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



Celiac.com Sponsor (A8-M):



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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.