Degrees of gluten sensitivity?

[BarryC]

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?

[Jmg]

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. 

 

 

[BarryC]

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]

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]

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]

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]

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! 

[BarryC]

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]

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. 

[Jmg]

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. 

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.