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Feel Like I Was Hit By A Truck!


healinginprogress

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healinginprogress Enthusiast

I guess I'm more easily fatigued because I'm healing?? And/or lack of sleep intensifies the symptoms?

I'm working two jobs...yesterday I slept in a bit because I felt ill from the day before, but then worked on my feet from 430pm to 230am, got home at 3am, tried to sleep, and then had to be at my other job at 9am. Only for an hour, but seriously, I feel AWFUL! I almost feel like I have a terrible hangover, but I didn't TOUCH a drink (well, I mean, I served them, but no drinking).

I've been resting since I got home because I have to go back to the second job at 5pm til 730pm and then back to waitressing, from 9pm til...possibly 2am, if it's busy (and it IS St.Pattis!).

I've taken advil, benadryl, vitamins, drinking lots of water, etc.

I don't often get a lot of sleep, but the effects aren't usually like THIS! It's terrible, and I don't know how I'm gonna make it all night :( I just want to feel better!!!!


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T.H. Community Regular

It could be the healing, yeah, although many people also experience more intense gluten symptoms to gluten after they start dropping it.

Did you check to make sure your advil, benadryl, and vitamins are gluten free? I know some advil and benadryl is, but I wasn't sure if it all was.

Also...there's a couple nasty viruses going around right now that seem to make people feel like they've been knocked on their butt. My daughter got one and the first day, she slept all the way through the day 'til 7pm. Just nausea and fatigue for her, essentially, which is kind of like getting glutened, really, yeah? ;)

cap6 Enthusiast

You are probably extra tired because 1) you are healing and 2) require more sleep when you are healing.

jerseyangel Proficient

I felt like that a few weeks ago when I had the flu--could you be sick?

IrishHeart Veteran

Honey,

1) you are healing and having withdrawal,too

2) you are working really hard

3) you've been having sleep issues --are you taking sleep meds too?

4) benedryl makes me loopy and wired (most people get sleepy)and I cannot take it--how does it affect you?

5) Advil (ALL NSAIDS) is a major gut-irritant!!! the WORST thing you can take when healing a leaky gut (sorry but it's true)

6) do you have the flu???

I know you have to work, yet I think you are stressed physically and mentally, dealing with this new diet and the limitations you have (as I know you are doing an elimination diet).

These may all be affecting your energy.

You gotta give yourself a break, kiddo. Can you sleep in this weekend?? You need a hot bath and some down time.

Take care!!!!

healinginprogress Enthusiast

Okay, I'm just on my way out the door, but wanted to thank everyone for the replies so far...I think part of me just needed to hear that I'm healing and need more rest! I really hope I'm not getting sick :blink:

I didn't know Advil (ibuprofen) was bad for the gut...it's usually what I take for headaches and body aches. The only other thing I have right now is pure codeine (no caffeine in it)? Not sure if that would be any better?

I've been trying NOT to take the sleep meds, I don't take them every night, and especially if it's 3am unless I don't have to get up for a while...I did not take one last night. And I felt awful BEFORE I took the benadryl.

Yes, I am definitely stressed...I feel like it shouldn't be so hard, but it's definitely wearing on my psyche...worrying about every morsel of food I put in my mouth, and such. I've already missed some work because of illness, so I'm broke and can't really take any more time off at risk of getting fired :P I was stoked to get a second job, just really bad timing!

I will get home around 3ish again tonight/tomorrow morning, but don't have to work again til 5pm or something tomorrow night, and it's a shorter shift....so I will do my best to sleep in tomorrow!

Thanks for the support. I know other people are going through the same things, I'm not THAT special, but sometimes it just feels like "this can't be right, what's wrong with me?". I just have to accept and believe that I AM celiac, that there's probably nothing else going on inside me (sometimes I worry it's something else), that I just need to heal and it will get better.

Wish me luck tonight, and happy st.patrick's day (minus the green beer ;))

Brigit Apprentice

So sorry to hear about how you are feeling at the moment. I'm pretty much feeling the same, but not having to work as hard as you, so my heart is breaking for you!

Trusting that in a few weeks or months we'll both be running around with extra energy and no aches and pains!

Prioritize rest for now. Even if it means letting the house get dirty or seeing friends a little bit less. It's only for a short season.

Take care!


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IrishHeart Veteran

I did the same thing...is it this food? that food? geesh, everything that went in my mouth made me worry.

STRESS, medicines, NSAIDS (non-steroidal anti-inflammatories like advil, ibuprofen)liquor, caffeine...these are MAJOR gut irritants. I know many people have to take meds because of other things going on in their bodies(I WISH I could take them because I have severe chronic pain--but I just cannot.) Most pain and sleep meds cause constipation. The last thing I need (or any of us) is THAT! straining the bowel--causes muscle pain in the pelvis.

Worrying about what other foods are causing problems makes us nuts...the best advice I got was.....stick to the gluten-free diet. Pure, whole foods are best.It takes time to heal. MOST other intolerances go away. The problems are a result of the gut, not necessarily something new.

Try to relax and rest (I know, easy to say, right?...I am not able to do it myself all the time)But I know that CONSTANT worry and pushing myself for 4 years made me considerably worse and now I have chronic pain you would not believe. I do not wish that for you. Pelvic floor pain is a nightmare. Jaw pain, neck pain, my back. My arms...just horrid. What caused it? Illness and MEGA stress and insomnia because I did not know what was going on.

I am trying to gently tell you that you are doing all the RIGHT things-- :) your diet is perfect from what you have told me!--and it will balance out in the coming months. Rest up.

healinginprogress Enthusiast

Brigit, you are so sweet, I feel for you, too...going through this together! Yes, unfortunately it usually is cleaning the house that gets put on the bottom of the list, but there are MUCH more important things than that, as much as I like a clean house. And as for friends...I feel INCREDIBLY anti-social during all of this, do you? I don't feel like I have much to offer, I guess. I prioritized to have coffee (well, "water" LOL) with a friend/ex because he's moving away, and gluten/celiac is really all I could talk about. My head is so foggy and it really is my life right now, so I didn't really have much else to share. He didn't mind, but I felt silly.

Tomorrow is my birthday, and I don't even care. It is the first year I have nothing planned and don't want to do anything or see anyone, really. Not because I'm having a "pity party", I just don't feel like much fun right now, ya know?

IrishHeart, thank you, as well. It really IS hard to not worry, but I will try to relax....

I finally slept last night for a good solid time, although I did take a sleeping pill to sort of "guarantee" it, but I really needed the rest.

We have some of the similar pain areas, although I realize your pain is much more intense and extreme! When I was younger I was told I have TMJ (termandibular joint disorder), my jaw and the muscles surrounding hurt quite a bit...worse when I'm tense/stressed, as I know I tend to clench (have found myself doing that more lately during the day, usually it's more when I'm sleeping). I've even had a massage therapist massage inside my mouth (with gloves on) to get to the muscles...so weird! And my trapezius muscles (neck/shoulder area) are SO tense and hard right now it's ridiculous. When you mentioned pelvic floor pain, I was curious, but that's not the pain I'm having...it's my iliacus and psoas muscles, as well as my lower back, which is likely from standing so much and abdominal pain/inflammation. They're usually held up when you're standing, but when they're sore I just want to let them go and let my stomach hang out and hunch over because they're so tired and sore. I think you gave me some great advice, and I will try to keep it in mind, I definitely don't want this pain to continue or escalate :(

BREATHE....RELAX.....REST................

;)

IrishHeart Veteran

Brigit, you are so sweet, I feel for you, too...going through this together! Yes, unfortunately it usually is cleaning the house that gets put on the bottom of the list, but there are MUCH more important things than that, as much as I like a clean house. And as for friends...I feel INCREDIBLY anti-social during all of this, do you? I don't feel like I have much to offer, I guess. I prioritized to have coffee (well, "water" LOL) with a friend/ex because he's moving away, and gluten/celiac is really all I could talk about. My head is so foggy and it really is my life right now, so I didn't really have much else to share. He didn't mind, but I felt silly.

Tomorrow is my birthday, and I don't even care. It is the first year I have nothing planned and don't want to do anything or see anyone, really. Not because I'm having a "pity party", I just don't feel like much fun right now, ya know?

IrishHeart, thank you, as well. It really IS hard to not worry, but I will try to relax....

I finally slept last night for a good solid time, although I did take a sleeping pill to sort of "guarantee" it, but I really needed the rest.

We have some of the similar pain areas, although I realize your pain is much more intense and extreme! When I was younger I was told I have TMJ (termandibular joint disorder), my jaw and the muscles surrounding hurt quite a bit...worse when I'm tense/stressed, as I know I tend to clench (have found myself doing that more lately during the day, usually it's more when I'm sleeping). I've even had a massage therapist massage inside my mouth (with gloves on) to get to the muscles...so weird! And my trapezius muscles (neck/shoulder area) are SO tense and hard right now it's ridiculous. When you mentioned pelvic floor pain, I was curious, but that's not the pain I'm having...it's my iliacus and psoas muscles, as well as my lower back, which is likely from standing so much and abdominal pain/inflammation. They're usually held up when you're standing, but when they're sore I just want to let them go and let my stomach hang out and hunch over because they're so tired and sore. I think you gave me some great advice, and I will try to keep it in mind, I definitely don't want this pain to continue or escalate :(

BREATHE....RELAX.....REST................

;)

Well, hon...you are mirroring my symptoms...the jaw, traps, neck and lower back and the illopsoas (that IS in the pelvic floor muscle area by the way--and controls all the others in a sense plus refers pain to the lower back) Yeah, I've done a ton of research and seen dozens of massage therapists and PTs and chiros for this pain....only MINE is so bad that I cannot SIT without agony. The levator ani is so tense as well---try having that one massaged with a gloved hand---not fun. I see a special PT for that!

I've had the inside of my mouth done too---and the inside of other places. Trigger points crop up everywhere.

I am so bad because I have had the abdominal swelling from gluten for so long and I hope it will subside as the gluten leaves and the gut heals.

You have been stressing all your life if you had TMJ as a kid! Honey, you gotta find a way to relax and unwind somehow.

I imagine being on your feet for your work (as I was all those years as a teacher) makes this worse. That is why you have edema in your legs, too. Soak those legs in epsom salts!!

KEEP getting massages, no matter what---you have to keep those muscles loose. Try some slow, deep abdominal breathing...deep and slow, for five minutes throughout the day . Trust me, this thing evolves into crippling freakin pain you cannot imagine and my hamstrings are so tight you could bounce a dime off the backs of my legs....you don't need this!!

My butt feels like a giant bruise. I lost 90 lbs, to this disease and have no muscle mass....so it has no padding!! I used to be a big girl!

I have no doubt in my mind it is connected to gluten and STRESS and bad posture, plus, in my case, a hysterectomy at a young age.

If you feel your abdominal muscles are tightening, just deep breathe into that area and let it all hang loose.

As for not wanting to socialize, I soooo get that! I was the biggest social butterfly, throwing dinner parties, etc. and now, I could not possibly care less. I am too tired, sore and out of it....BUT it is getting better!

You are amazing that you are working and functioning.

My brain fog was so bad, I couldn't drive anymore.

Now, it is clearing and I don't feel like the wired-for-sound nutjob I was for 3 years...I have HOPE!!

You hang in there and talk to me whenever you want. :)

You gotta VENT and let it out.

cahill Collaborator

Brigit, you are so sweet, I feel for you, too...going through this together! Yes, unfortunately it usually is cleaning the house that gets put on the bottom of the list, but there are MUCH more important things than that, as much as I like a clean house. And as for friends...I feel INCREDIBLY anti-social during all of this, do you? I don't feel like I have much to offer, I guess. I prioritized to have coffee (well, "water" LOL) with a friend/ex because he's moving away, and gluten/celiac is really all I could talk about. My head is so foggy and it really is my life right now, so I didn't really have much else to share. He didn't mind, but I felt silly.

Tomorrow is my birthday, and I don't even care. It is the first year I have nothing planned and don't want to do anything or see anyone, really. Not because I'm having a "pity party", I just don't feel like much fun right now, ya know?

IrishHeart, thank you, as well. It really IS hard to not worry, but I will try to relax....

I finally slept last night for a good solid time, although I did take a sleeping pill to sort of "guarantee" it, but I really needed the rest.

We have some of the similar pain areas, although I realize your pain is much more intense and extreme! When I was younger I was told I have TMJ (termandibular joint disorder), my jaw and the muscles surrounding hurt quite a bit...worse when I'm tense/stressed, as I know I tend to clench (have found myself doing that more lately during the day, usually it's more when I'm sleeping). I've even had a massage therapist massage inside my mouth (with gloves on) to get to the muscles...so weird! And my trapezius muscles (neck/shoulder area) are SO tense and hard right now it's ridiculous. When you mentioned pelvic floor pain, I was curious, but that's not the pain I'm having...it's my iliacus and psoas muscles, as well as my lower back, which is likely from standing so much and abdominal pain/inflammation. They're usually held up when you're standing, but when they're sore I just want to let them go and let my stomach hang out and hunch over because they're so tired and sore. I think you gave me some great advice, and I will try to keep it in mind, I definitely don't want this pain to continue or escalate :(

BREATHE....RELAX.....REST................

;)

HAPPY BIRTHDAY,,I hope you slept well :) ,,, hang in there it DOES get better ((HUGS))

healinginprogress Enthusiast

Yes, I suppose I HAVE been stressing my whole life, my childhood wasn't the greatest, filled with loss and fear and pressure. Things weren't talked about back then, wasn't supposed to cry, etc. But I won't get into THAT whole thing :P They also thought I had hypoglycemia when I was younger and I wasn't allowed to eat refined sugar for years, but am okay eating it now, for the most part, but still try to make sure I eat every couple of hours...I just was thinking about that diagnosis and wondering if it was in any way related to this?

I have been through a lot of therapy and am better at coping than I used to be, but it is definitely still a struggle...anxiety, depression, insomnia.

I will make an appointment with my massage therapist...I'm a bit broke, but it's been too long, and while I'm not in AGONY while sitting, it is hurting even when I'm sitting now.

I've always been pretty thin, so I can't afford to lose much weight, but I have. I'm nearly 5'11" and yesterday morning I weighed in at 127lbs. That's how much I weighed when I graduated high school, I think, which was ten years ago. I don't know how old everyone here is, I just turned 29 and do feel blessed that I have a diagnosis (well, positive blood test) now, as I know it didn't happen for many people until much much later. In fact, I'm pretty sure my 61yr old mom has it and has not been misdiagnosed for eons...I told her to request a blood test.

Anyways, what I was getting at, is I'm tiny right now. The last time I ended up in the hospital (right after christmas), I lost so much weight so fast that I could barely sit up. I ended up with bruises on the backs of my legs from the TOILET and on my hips from lying on my side....in fact, it always feels like my hip (where the femur fits into the socket) is bruised, as well as my legs feel bruised to the touch, mostly down the sides. I don't know if anyone experiences clumsiness as a symptom, or maybe it's a product of the brain fog, but I keep banging into things, too, which is leaving me black and blue.

But yes, while things kinda suck right now, I have noticed some positive changes...in particular, I'm not throwing up a third of my meals anymore! I think I've puked maybe three times since going gluten-free.

To be honest, I think I've lost any point I was trying to make LOL I think I just wanted to share some more of my story, so thanks for allowing me to do so.

IrishHeart Veteran

Yes, I suppose I HAVE been stressing my whole life, my childhood wasn't the greatest, filled with loss and fear and pressure. Things weren't talked about back then, wasn't supposed to cry, etc. But I won't get into THAT whole thing :P They also thought I had hypoglycemia when I was younger and I wasn't allowed to eat refined sugar for years, but am okay eating it now, for the most part, but still try to make sure I eat every couple of hours...I just was thinking about that diagnosis and wondering if it was in any way related to this?

I have been through a lot of therapy and am better at coping than I used to be, but it is definitely still a struggle...anxiety, depression, insomnia.

I will make an appointment with my massage therapist...I'm a bit broke, but it's been too long, and while I'm not in AGONY while sitting, it is hurting even when I'm sitting now.

I've always been pretty thin, so I can't afford to lose much weight, but I have. I'm nearly 5'11" and yesterday morning I weighed in at 127lbs. That's how much I weighed when I graduated high school, I think, which was ten years ago. I don't know how old everyone here is, I just turned 29 and do feel blessed that I have a diagnosis (well, positive blood test) now, as I know it didn't happen for many people until much much later. In fact, I'm pretty sure my 61yr old mom has it and has not been misdiagnosed for eons...I told her to request a blood test.

Anyways, what I was getting at, is I'm tiny right now. The last time I ended up in the hospital (right after christmas), I lost so much weight so fast that I could barely sit up. I ended up with bruises on the backs of my legs from the TOILET and on my hips from lying on my side....in fact, it always feels like my hip (where the femur fits into the socket) is bruised, as well as my legs feel bruised to the touch, mostly down the sides. I don't know if anyone experiences clumsiness as a symptom, or maybe it's a product of the brain fog, but I keep banging into things, too, which is leaving me black and blue.

But yes, while things kinda suck right now, I have noticed some positive changes...in particular, I'm not throwing up a third of my meals anymore! I think I've puked maybe three times since going gluten-free.

To be honest, I think I've lost any point I was trying to make LOL I think I just wanted to share some more of my story, so thanks for allowing me to do so.

ALL of your symptoms can be connected to the celiac!! The fatigue, insomnia, depression and anxiety. All the therapy in the world won't be the entire answer to resolve those, (I know, I have been there/done that, too!)but healing your gut will!! :) I am going to send you some info in a private message because it may help you see that what you have suffered from all your life is from this--and now, you will get it under control and stop feeling this way.

YES! Feeling bruised down the sides of my legs! YES! clumsiness YES! bruises from the slightest "ding"...YES! being thin and feeling so weak I could not walk or sit up--although you are very tall ;) -- as many people on here report 5'4" and under... I was FAT for 12 years and then, I lost drastic weight in a short time. That's when I lost the muscle mass and tone as well.

Maybe some things that have seemed "mysterious" to you will make sense now. And YES! erratic blood sugars are part of it too...hopefully, that will balance out. Untreated diabetes is often related to celiac, and vice versa, but I bet you will see yourself feeling better and better and having less ups and downs in the coming months. My heart races and I feel a dip now and then, but my blood glucose levels are okay. Another thing that needs monitoring is your thyroid. Press your doctor to keep on top of the blood work.

So glad you are not throwing up or living in the bathroom---me, too and doesn't that make you feel better to know HEALING is indeed IN PROGRESS!!?? :D

I'm glad you were diagnosed young. I lost a lot of time because of this and had miscarriages and a bunch of other horrible health issues that I wouldn't want for you.

There really needs to be celiac screening in this country for toddlers (like in Italy) so people can live long, healthy lives.

Hang in there, kiddo...you're doing a good job!

And, since celiac is inherited, your Mom should be checked as well. Absolutely!!

Brigit Apprentice

ALL of your symptoms can be connected to the celiac!! The fatigue, insomnia, depression and anxiety. All the therapy in the world won't be the entire answer to resolve those, (I know, I have been there/done that, too!)but healing your gut will!! :) I am going to send you some info in a private message because it may help you see that what you have suffered from all your life is from this--and now, you will get it under control and stop feeling this way.

YES! Feeling bruised down the sides of my legs! YES! clumsiness YES! bruises from the slightest "ding"...YES! being thin and feeling so weak I could not walk or sit up--although you are very tall ;) -- as many people on here report 5'4" and under... I was FAT for 12 years and then, I lost drastic weight in a short time. That's when I lost the muscle mass and tone as well.

Maybe some things that have seemed "mysterious" to you will make sense now. And YES! erratic blood sugars are part of it too...hopefully, that will balance out. Untreated diabetes is often related to celiac, and vice versa, but I bet you will see yourself feeling better and better and having less ups and downs in the coming months. My heart races and I feel a dip now and then, but my blood glucose levels are okay. Another thing that needs monitoring is your thyroid. Press your doctor to keep on top of the blood work.

So glad you are not throwing up or living in the bathroom---me, too and doesn't that make you feel better to know HEALING is indeed IN PROGRESS!!?? :D

I'm glad you were diagnosed young. I lost a lot of time because of this and had miscarriages and a bunch of other horrible health issues that I wouldn't want for you.

There really needs to be celiac screening in this country for toddlers (like in Italy) so people can live long, healthy lives.

Hang in there, kiddo...you're doing a good job!

And, since celiac is inherited, your Mom should be checked as well. Absolutely!!

Well written - you're a gem!!

healinginprogress Enthusiast

You truly ARE a gem, IrishHeart!

Yes, my height is definitely inconsistent with celiac.

I can't write too much back now, because...SURPRISE...I have to be back at work in an hour :( It was only 5hrs on my feet yesterday and I was dying, today is 8hrs.....

I guess it's just hard for me to believe I have celiac and/or that celiac can cause ALL these symptoms I have, because it really sounds too good to be true, ya know?? I also have livedo reticularis (just didn't know it had a name until a few days ago, but I've had it forever and HATE it, always purple), frequent urination, eczema every now and then, and I would get peely red patches around my mouth that my doctor thought was eczema but could never find a treatment that would really make it go away....there's just so many things, it sounds like a "hoax" that they could all go away just by not eating gluten LOL But I can't WAIT!!!!

IrishHeart Veteran

You truly ARE a gem, IrishHeart!

Yes, my height is definitely inconsistent with celiac.

I can't write too much back now, because...SURPRISE...I have to be back at work in an hour :( It was only 5hrs on my feet yesterday and I was dying, today is 8hrs.....

I guess it's just hard for me to believe I have celiac and/or that celiac can cause ALL these symptoms I have, because it really sounds too good to be true, ya know?? I also have livedo reticularis (just didn't know it had a name until a few days ago, but I've had it forever and HATE it, always purple), frequent urination, eczema every now and then, and I would get peely red patches around my mouth that my doctor thought was eczema but could never find a treatment that would really make it go away....there's just so many things, it sounds like a "hoax" that they could all go away just by not eating gluten LOL But I can't WAIT!!!!

Well, ravenwoodglass has told us she had that condition that makes you purple (you may want to ask her about it) and among my 3 pages in a notebook list of bizarre symptoms, I also have had ridiculously frequent urination --but no solid medical reason--I've been checked many times (it's bladder compression from bowel swelling) and MANY people have eczema or psoriasis--I have a peeling scalp right now and sore eyes...what's up with that??...and so, Yup, it's no hoax!! BELIEVE IT BECAUSE IT's ALL CONNECTED, hon...and as you heal, you can watch them all disappear or get under control...keep the faith, kiddo....hang in there. I had a meltdown this weekend (it gets to me after a while and I just freakin scream and cry for a little bit because I am in horrible pain), but I know in my gut (pun intended :) that this crap may well start to resolve as we heal....talk to you soon!

frieze Community Regular

You truly ARE a gem, IrishHeart!

Yes, my height is definitely inconsistent with celiac.

I can't write too much back now, because...SURPRISE...I have to be back at work in an hour :( It was only 5hrs on my feet yesterday and I was dying, today is 8hrs.....

I guess it's just hard for me to believe I have celiac and/or that celiac can cause ALL these symptoms I have, because it really sounds too good to be true, ya know?? I also have livedo reticularis (just didn't know it had a name until a few days ago, but I've had it forever and HATE it, always purple), frequent urination, eczema every now and then, and I would get peely red patches around my mouth that my doctor thought was eczema but could never find a treatment that would really make it go away....there's just so many things, it sounds like a "hoax" that they could all go away just by not eating gluten LOL But I can't WAIT!!!!

livedo reticularis -----this can be related to lupus or antiphopholipid syndrome....

IrishHeart Veteran

livedo reticularis -----this can be related to lupus or antiphopholipid syndrome....

Frieze raises a really good point!!!...HEALING, hon...have you had any ANA blood panels done to rule out other autoimmune diseases??...I wonder about your hip pain, etc....please, ask your doctor!!!

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    • JudyLou
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      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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