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

Degrees of gluten sensitivity?

BarryC

By BarryC
in Coping with Celiac Disease

Recommended Posts

BarryC Collaborator
BarryC
Posted

If I understand it correctly, gluten sensitivity runs on a spectrum from mildly sensitive to full blown celiac. I seem to be able to tolerate a small amount on a daily basis ok, but after a few days of this it hits me. We have a lot of stuff in the freezer that contains gluten-fish and chips, frozen fried chicken, etc. Growing up poor I have a thing about wasting food. We also have family that invite us for Sunday supper, great meals, lots of gluten. I hate to turn down Aunt Maggies apple pie. She doesnt get this gluten thing.  I also travel, and lots of times there are no gluten free options, especially on vacation. I don't mean to be disrespectful for those of you with celiac severe gluten ntolerance, but has anyone with  ever gone on a once a week gluten splurge? Or had to eat gluten-knowing they would pay for it, but continuing gluten free after things would get better?

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted

Hi again Barry,

I've answered in your other thread but just on this:

3 hours ago, BarryC said:

I don't mean to be disrespectful for those of you with celiac severe gluten ntolerance, but has anyone with  ever gone on a once a week gluten splurge? Or had to eat gluten-knowing they would pay for it, but continuing gluten free after things would get better?

it just would never occur to me. I wouldn't enjoy it. Sure the taste may be ok but the knowledge of what was to come would render the entire experience deeply unpleasant. I can just about understand how you may do this if your only symptoms were some indigestion constipation etc but if you get neurological affects as I do they can blight everything in your life and they can last a long time. 

I'd also be worried about whether continuing would lead to new or worse symptoms. If the damage incurred didn't heal. If I wound up with further intolerances or having to exclude more foods. The risk / reward ratio can be very high, just read some accounts here.

I think the other reason is once I truly went gluten free, that means strictly, NO EXCEPTIONS then the change was so profound that there was no going back. I just never wanted to feel that way again. There's not a food or drink on the planet that would make me change my mind. 

 

 

  • 1 month later...
BarryC Collaborator
BarryC
Posted
  • Author

Jmg, I am glad you were able to come to the realisation that the culprit was in fact gluten. For me its not so simple. IBS runs in the family, as do several food intolerances. Its just in the last while that I can finally reach the conclusion that for me its gluten. The fact that it is a delayed effect-several hours after, made it harder.  Friday I had some KFC, felt great. Saturday evening felt sleepy, Sunday felt awful and my belly was huge.  I think I have gone from mildly sensitive to full blown celiac over the course of five years-if that possible. Thanks for all your help.

Jmg Mentor
Jmg
Posted
2 hours ago, BarryC said:

Jmg, I am glad you were able to come to the realisation that the culprit was in fact gluten. For me its not so simple. IBS runs in the family, as do several food intolerances. Its just in the last while that I can finally reach the conclusion that for me its gluten. The fact that it is a delayed effect-several hours after, made it harder.  Friday I had some KFC, felt great. Saturday evening felt sleepy, Sunday felt awful and my belly was huge.  I think I have gone from mildly sensitive to full blown celiac over the course of five years-if that possible. Thanks for all your help.

It took me 20 years or more Barry so I wouldn't claim any great insight on this :) I had a 'eureka' moment, up until then I was walking around with multiple symptoms and not connecting any dots whatsoever. It is very, very difficult to diagnose and that's something that's reflected in so many of the experiences detailed here. 

A food diary may help in your case. It helped me to connect the gaps between eating and onset. It could help you to track any gluten sources should you go gluten free.

It is possible for your reactions to change over time. As to whether its celiac, that's something you could explore with your doctor, stay on gluten if you choose to go that way.

best of luck!

Matt

BarryC Collaborator
BarryC
Posted
  • Author

Matt

It makes me feel better knowing I am not alone in this. Gluten sensitivity/celiac seems to effect women more than men too. Your experiance sounds a lot like mine.  Besides trying to figure out what foods were causing my problems, I am getting older, and have developed mild arthritis. I was also diagnosed with adult A.D.D. many years ago. As you know, both are symptoms of celiac!  I also began a new high stress career at the same time my symptoms began. So confusing. I guess that's why its called 'The great imitator'. One bright light is the fact a lot more gluten free foods are coming out now, and some of them are actually quite good! Thanks again and please keep in touch, possibly through Facebook. BTW I see you are in the UK. My heart goes out to those poor young gals in Manchester and their parents. I have a  young daughter as well. 

Jmg Mentor
Jmg
Posted

Thanks Barry. It's just up the road from me and it's a place I know very well. Some of my family were there last week for a gig, it's a frightening thought. 

You are most definitely not alone and you've found a good site. There are a lot of accounts on here which helped me join the dots and work out what was happening with my own reaction to gluten.

The move to a new job may not be coincidental btw, additional stress is linked to changes in celiac presentation. In women pregnancy can bring it about. It makes it easy to dismiss it as stress related. If you've found the answer now you can look forward to healing and hopefully some unexpected health dividends if it's affecting you in multiple ways. I stopped eating gluten and found near immediate relief from brain fog and a lightening of depression. What I didn't count on was the disappearance of chronic back pain that I'd had off an on for many years. There were a lot more examples like that as my time on the gluten-free diet progressed.  The rheumatoid pain in my hand went too. :)

I put together an faq for the diagnostic side awhile back which may be of some additional help. or at least offer some good links to further reputable info:

 

Pocah Rookie
Pocah
Posted

I would be very careful here, and mindful of long-term damage not short-term symptoms. I had no immediate symptoms, when I consumed gluten. The first I knew about it was when I developed an intestinal ulcer. So take care here. Just because people may not react immediately to gluten does not mean there there is no damage occurring. Rather it may well be just be silently accumulating like it did with me. I think people should go on the assumption that it IS accumulating, until proven otherwise, or you may end up with a totally messed up intestine like me! 

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

Celiac.com Sponsor (A8-M):


BarryC Collaborator
BarryC
Posted
  • Author

Thanks Pocah. You mentioned an intestinal ulcer. I thought I had developed gastritis, or possibly an ulcer myself. This happened after a very 'beery' weekend a year ago, and the pain never left.But now that I have committed to going gluten free for several weeks, its thankfully going away! 

BarryC Collaborator
BarryC
Posted
  • Author

I must say I am very thankfull for all the positive reinforcement I am finding here. It has been a struggle to finally hit the gluten nail on the head.  So many other culprits exist that have similarities to gluten sensitivity. It took over five years, but I finally exhausted all the possibilities.  In a way it is actually a relief. Thank God my wife is very patient. She also has a friend with full blown celiac too, I get advice from her by way of the wife. Also, some of the FB groups I have joined are not  overly friendly to people that are looking for help. But they sure are good places to swap recipes! Too bad I can't cook.:lol: 

Jmg Mentor
Jmg
Posted
4 hours ago, BarryC said:

I must say I am very thankfull for all the positive reinforcement I am finding here. It has been a struggle to finally hit the gluten nail on the head.  So many other culprits exist that have similarities to gluten sensitivity. It took over five years, but I finally exhausted all the possibilities.  In a way it is actually a relief. Thank God my wife is very patient. She also has a friend with full blown celiac too, I get advice from her by way of the wife. Also, some of the FB groups I have joined are not  overly friendly to people that are looking for help. But they sure are good places to swap recipes! Too bad I can't cook.:lol: 

I think this site is a far better source of info and support than any of the Facebook groups I've seen. Its certainly been a great help to me. I found that too much web surfing on some other sites including Facebook just made things more difficult, there are either sites pushing commercial solutions with little real scientific grounding or there are often well meaning people with particular axes to grind offering dubious advice.  I stopped visiting those sites finally as they just added to the climate of fear and anxiety around diet and health.

If your journey is any way like mine, you'll find that things get much better, both in terms of adapting to the diet and also in your general health and well being. The first weeks are hard but as you learn to read labels, know which are your safe products and make sure you are completely gluten free then your body will do the rest.

 

Archived

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

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


  • Member Statistics

    • Total Members
      127,954
    • Most Online (within 30 mins)
      7,748
    Godfather
    Newest Member
    Godfather
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Vaccines

      By Beverage · Posted

      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      Facial pain

      By trents · Posted

      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
    • Mnofsinger
      Facial pain

      By Mnofsinger · Posted

      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      Celiac-safe home for summer rental in Washington DC

      By Scott Adams · Posted

      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
×
×
  • Create New...