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

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
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.