Gluten Sensitivity?

[LilyR]

I was wondering if some members here are gluten-sensitive, but don't have celiac?  I am feeling confused today.  My stomach dr tested me for celiac, said it was a low positive so had me get more bloodwork to check other markers for celiac.  I did have an endoscopy before this, but I don't think he was even thinking about celiac then, so I don't think did biopsies for it.  I just saw a rheumatologist too, and she is thinking it's probably gluten, so having me go gluten-free for 3 months and seeing me again in October.  She also did a bunch of other bloodwork and has some other thoughts in mind if it turns out to not be gluten.  Well, my stomach dr just called me and the other bloodwork he did is negative so he said I don;t have celiac disease.  He did say I could continue going gluten-free to see if I have a sensitivity towards it, and if I feel better in a few months, great, stick with it.  But if I don't feel any better in a few months, no need to stay with it.  

Not that I wanted celiac, but I just want answers, and at least if it's gluten, that gives me a plan to get better - just go gluten-free. Now I feel all up in the air again. Has  anyone had chronic fever with gluten sensitivity? I've had a fever since February.  And is it okay to be here on this message board if I am just gluten-sensitive, but don't have celiac? 

 

[ravenwoodglass]

You could get another endo with the doctor looking for celiac if you haven't gone gluten free yet. If you have given up gluten already then keep off it and listen to your rheumatologist and when you go back in 3 months have her rerun the test that was positive to see if the levels are going down.

[LilyR]

On 7/17/2017 at 3:11 PM, ravenwoodglass said:

You could get another endo with the doctor looking for celiac if you haven't gone gluten free yet. If you have given up gluten already then keep off it and listen to your rheumatologist and when you go back in 3 months have her rerun the test that was positive to see if the levels are going down.

Thanks for that advice.  I have been gluten-free for two weeks now.  Although about half way through, I accidentally had a small amount of gluten (hubby put some seasoning on his chicken that neither of us had checked the label, and come to find out it had wheat in it... and I ate some leftover the next day for lunch, not realizing he had even put different seasoning on his).  

[squirmingitch]

You are entirely welcome here! We have & welcome both celiacs as well as non celiac gluten sensitives (NCGS). We recommend NCGS people follow the same strict gluten free diet as us celiacs do. There is research being conducted on NCGS but we don't yet know enough about it to determine if it causes some permanent damage somewhere in the body so better safe than sorry as the saying goes.

Check out our Newbie 101 in the Coping section.

[Jmg]

Hi Lily,

I'm NCGS. I solve murders loosely related to the US Navy in a variety of sunny locations with the help of a bunch of wisecracking workmates. It's a tough job, a typical case takes 48 minutes to crack.  Oh who am I kidding, that's NCIS. I'm living gluten free without a diagnosis. Keep this between ourselves but I've been here for a couple of years now and no-one's chased me away yet.  So you're very welcome here.

On 7/17/2017 at 5:53 PM, LilyR said:

Has  anyone had chronic fever with gluten sensitivity?

That can be assocatied with celiac: Open Original Shared Link and as always you can find people on this forum over the years who have reported similar:

 

On 7/17/2017 at 5:53 PM, LilyR said:

Not that I wanted celiac, but I just want answers, and at least if it's gluten, that gives me a plan to get better - just go gluten-free.

Well that could still be a workable plan. You just may have to do it without the reinforcment of a diagnosis to keep you on the straight and narrow. My advice would be to keep a food diary for these trial months on the gluten-free diet. Note what you eat, when and how you feel. This can help you track any reactions to the diet and this could form the evidence you weigh up when the trial period is at an end. I can tell you from personal experience that testing negative for celiac does not neccesarily mean that gluten isnt playing havoc with your body. 

Best of luck!

 

[Victoria1234]

13 hours ago, Jmg said:

Oh who am I kidding, that's NCIS. I'm living gluten free without a diagnosis. Keep this between ourselves

Bwahahaha!

[LilyR]

On 7/19/2017 at 5:19 PM, Jmg said:

Hi Lily,

I'm NCGS. I solve murders loosely related to the US Navy in a variety of sunny locations with the help of a bunch of wisecracking workmates. It's a tough job, a typical case takes 48 minutes to crack.  Oh who am I kidding, that's NCIS. I'm living gluten free without a diagnosis. Keep this between ourselves but I've been here for a couple of years now and no-one's chased me away yet.  So you're very welcome here.

That can be assocatied with celiac: Open Original Shared Link and as always you can find people on this forum over the years who have reported similar:

 

Well that could still be a workable plan. You just may have to do it without the reinforcment of a diagnosis to keep you on the straight and narrow. My advice would be to keep a food diary for these trial months on the gluten-free diet. Note what you eat, when and how you feel. This can help you track any reactions to the diet and this could form the evidence you weigh up when the trial period is at an end. I can tell you from personal experience that testing negative for celiac does not neccesarily mean that gluten isnt playing havoc with your body. 

Best of luck!

 

Thanks for all that info and the links.  It would be such a relief if I could know what is causing the fever, and that maybe it will go away as I stay gluten-free.  Both my gastro dr and rheum dr said to still stay gluten-free even though I apparently don't have celiac.  They are saying to give it 2-3 months to see how I feel then.  My fever has been down to around 99.9 the past two days, instead of over 100 and 101 like it's been since February.  That is the most exciting thing so far.  My stomach is not as severe or bad, but certainly not great, and I don't feel out of the woods at all concerning that yet.  I still hope to feel a lot better as more time goes by without gluten....I hope.  I seem to get bloat and also discomfort in my ribs more in the evening, even if I ate the same thing at lunch.   I started a food journal.  I guess I need to keep being patient. My rheum dr wants to see the journal in October when I see her again. She said she loves detective work.  It sounds like we all need to become food and symptom detectives when dealing with this.  Now if we could only get an NCIS episode where they investigate how gluten can "murder" our stomachs, and figure out a cure for gluten issues, besides going gluten-free.  It actually hasn't been too bad so far, other than foods that you are iffy or unsure about with all sorts of weird ingredients listed in it.  The internet and this site here helps a lot with some of that.  Luckily there is a whole lot we can still eat, but corn and corn products are an iffy for me too at the moment, and my dr suggested trying to avoid soy, and that xanthan gum, and a few things like that. Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease.  Ya, I've been hearing "it seems like something autoimmune" for the past few decades.  It'd kind of be helpful to figure out exactly what.  I'm so tired of being tired.  I am sure you all can relate to that.  You just want to wake up and feel good.  

[Jmg]

5 hours ago, LilyR said:

Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease.

I look back at photos from a few years ago now and can see the inflammation in my face. I spent decades with my body fighting constantly without my really being aware. Freaked me out when I realised!

Few things to think about:

• If up to 1% of pop are celiac, at much as 6% could be NCGS - further reading here: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/
• NCGS can present in the same varied ways as celiac - Not just or even primarily gastro related. I get back pain, chest pain, skin problems, eyesight problems, anxiety, depression, balance issues, nerve tremors and twitches etc. etc

Try to treat these next months as a special case. Dial your diet back and eat really basic and simple. I lived on omelettes filled with veggies, huge green salads with olive oil and cider vinegar as dressing and a very simple evening meal with maybe some meat and rice. I ate as little processed foods as I possibly could. So try and avoid sauces, anything in a box really. 

Your aiming to help your body heal and to reduce the amount of ingredients going in to the basic safest foods. Eat clean and healthy and avoid any possible gluten source. Spend a bit of time learning about hidden sources of gluten too. This thread will help:

 https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Final point. You may like me eventually have to live life without gluten and without the comfort of a diagnosis that says precisely why. This is not always easy, but what you learn about your body in the next 3 months of this trial could help you to do this. Keep the diary, note your reactions and hopefully when you see the Rheum in 3 months you'll have conducted your own science experiment and have the data you need to make a good decision.

Best of luck

Matt

 

[Posterboy]

On 7/17/2017 at 11:53 AM, LilyR said:

Not that I wanted celiac, but I just want answers, and at least if it's gluten, that gives me a plan to get better - just go gluten-free. Now I feel all up in the air again. Has  anyone had chronic fever with gluten sensitivity? I've had a fever since February.  And is it okay to be here on this message board if I am just gluten-sensitive, but don't have celiac? 

LilyR,

jmg has given you good resources/links.

I used to have constant issues with ear infections that went away when I went gluten free.

And recurrent bronchitis they I never have now.

NCGS can cause low grade inflammation that you don't realize at the time . .. till you stop eating gluten.

That said have you been checked for a UTI infection.  It is not uncommon to have low grade fevers when you have one.

My friend at work recently had a bad spell of health and the only symptom she complained about before coming down with a bird flu virus was a low grade persistent fever (not for a few months but for a few years).

The last time I had bronchitis before it became pneumonia I had a low grade fever in the few months before my pneumonia diagnosis.

Keep looking is my advice to you.  Low grade fevers are fighting off an infection . .  sometimes we don't know why until other symptom's present themselves.

I do know that when I went gluten free most of my chronic health issues got better.  I can only assume it (gluten) was triggering inflammation in my body.

I hope you find out what is the cause of your fever and that being gluten free helps it.

****** this is not medical advice

just some of the ways going gluten free helped me and some possible other causes of a low grade fever that have happened to myself or others that I know of.

posterboy,

[Posterboy]

2 minutes ago, Posterboy said:

And is it okay to be here on this message board if I am just gluten-sensitive, but don't have celiac? 

Why yes it is!

jmg and myself are NCIS, I mean NCGS specialist/experts or is it NCGI people ourselves.

posterboy,

[LilyR]

On 7/22/2017 at 7:27 PM, Posterboy said:

LilyR,

jmg has given you good resources/links.

I used to have constant issues with ear infections that went away when I went gluten free.

And recurrent bronchitis they I never have now.

NCGS can cause low grade inflammation that you don't realize at the time . .. till you stop eating gluten.

That said have you been checked for a UTI infection.  It is not uncommon to have low grade fevers when you have one.

My friend at work recently had a bad spell of health and the only symptom she complained about before coming down with a bird flu virus was a low grade persistent fever (not for a few months but for a few years).

The last time I had bronchitis before it became pneumonia I had a low grade fever in the few months before my pneumonia diagnosis.

Keep looking is my advice to you.  Low grade fevers are fighting off an infection . .  sometimes we don't know why until other symptom's present themselves.

I do know that when I went gluten free most of my chronic health issues got better.  I can only assume it (gluten) was triggering inflammation in my body.

I hope you find out what is the cause of your fever and that being gluten free helps it.

****** this is not medical advice

just some of the ways going gluten free helped me and some possible other causes of a low grade fever that have happened to myself or others that I know of.

posterboy,

Thanks for sharing your experiences.  I had a few days my fever started to get lower, but then it went back up and I got fatigue a few days, and now some stomach issues again.  I did eat one gluten-free donut two days ago and my dr did tell me some people with gluten sensitivity have issues with corn products too,and there was corn in the donuts.  It's weird though because I had it in the morning, felt fine all day, then right after dinner got the bloat and discomfort. (What I ate for dinner was something I've been having since going gluten-free that had not seemed to bother me).  So, it sure is confusing.  Trial by error, I guess.  They did check a urine sample, two different times and no infection or trouble with that, but thank you for that suggestion.  I'd like to leave no stone unturned, you know.  My rheum dr says she will send me to an infectious disease specialist if after going gluten-free a few months doesn't seem to help.  I have been to infect. dis. dr's a long time ago when I had epstein barr virus.  They never seemed to help.  Well, because apparently there wasn't anything they could do to help.  So I am hoping it's not still epstein barr or any other thing that can't be helped.  Hanging on to hope!

[LilyR]

On 7/22/2017 at 7:33 PM, Posterboy said:

Why yes it is!

jmg and myself are NCIS, I mean NCGS specialist/experts or is it NCGI people ourselves.

posterboy,

It's great having a place like this to share with others who are going through it.  This website has been really helpful so far.  At first I was trying to figure out what illness NCIS stood for.  I'll blame it on being very tired today, lol!  Then I remembered the NCIS joke earlier in this post....oh ya, the tv show!  Ohh....I need another coffee.....

[LilyR]

On 7/22/2017 at 1:33 AM, Jmg said:

I look back at photos from a few years ago now and can see the inflammation in my face. I spent decades with my body fighting constantly without my really being aware. Freaked me out when I realised!

Few things to think about:

• If up to 1% of pop are celiac, at much as 6% could be NCGS - further reading here: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/
• NCGS can present in the same varied ways as celiac - Not just or even primarily gastro related. I get back pain, chest pain, skin problems, eyesight problems, anxiety, depression, balance issues, nerve tremors and twitches etc. etc

Try to treat these next months as a special case. Dial your diet back and eat really basic and simple. I lived on omelettes filled with veggies, huge green salads with olive oil and cider vinegar as dressing and a very simple evening meal with maybe some meat and rice. I ate as little processed foods as I possibly could. So try and avoid sauces, anything in a box really. 

Your aiming to help your body heal and to reduce the amount of ingredients going in to the basic safest foods. Eat clean and healthy and avoid any possible gluten source. Spend a bit of time learning about hidden sources of gluten too. This thread will help:

 https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Final point. You may like me eventually have to live life without gluten and without the comfort of a diagnosis that says precisely why. This is not always easy, but what you learn about your body in the next 3 months of this trial could help you to do this. Keep the diary, note your reactions and hopefully when you see the Rheum in 3 months you'll have conducted your own science experiment and have the data you need to make a good decision.

Best of luck

Matt

 

Thank you for the suggestions (and inspiration).  I have been losing some weight, but my face still looks puffy and yes, I realized I think it's inflamation.  It even feels stiff when it looks it's most puffy.  I get redness too, and sometimes red lumps on my face that one dr told me was inflammation, but I also have photosensitivity, so realized the sun and certain indoor lighting causes those lumps.   I've had inflammation show in my bloodwork since my epstein barr virus days back since I was 18.  

My rheum dr did suggest making a food and symptom journal to bring to her in Oct when I see her again.  She said she loves detective work and will go through it.  I have been eating a lot of eggs and those seem very gentle on my stomach, but I've been doing that since Feb and just the other day ate a crustless quiche and was feeling like - ugh, I think I have finally gotten sick of eggs, lol!  I had been loving them all this time.  Maybe I just need a short break from them.  

 

I hate seeing other people who have suffered and still are suffering with these issues, but it does help reassure me I'm not alone and people have found help and felt better once they figured it all out.  I am not not just avoiding gluten, but also all corn products, and my dr warned me about xanthan gum which is in a lot of those packaged gluten-free products, but she said it can bother some people.  Maybe that has caused some of my up's and downs.  So now I'm trying really basic, like you mentioned.  I was so tempted to get some Edy's spamoni ice cream today.  I read it's gluten-free.  But still, not sure if there is anything else in it that could bother me, so until I feel better, I want to go basic, like you suggested.  Then I will be able to tell if I try something different and see if that one items bothers me or not.  Right now it's too hard to tell because I apparently am still quite a mess.  This sure does help us all develop patience, doesn't it?

[LilyR]

Oh, and anyone had an issue with their pupils seem very small at times?  I just realized this the past few weeks.  A few times I have noticed my eyes don't look good, or normal.  And I think I guess it shows in my eyes that I don't feel well.  But I finally realized what looked odd was a few times my irises were so tiny.  Even one day it was so cloudy and dark inside, I had no lights on, and still looked in a mirror and they were so small.  I looked that up online and all I could find was due to drugs (illegal, or prescription) that could cause it, but that should not be the case with me.  So I have no idea what is up with that.  Has anyone experienced that?