9 months gluten free

[cstark]

When I first went gluten free, it was due to health concerns.  Found that the gluten was a HUGE trigger.  I still miss the doughnuts and buns, but then I think of the alternative making it easier to stay away from the stuff.  Hasn't been easy going gluten free, but life in general has been easier.  I had the blood test to figure out I was gluten sensitive.  They wanted me to do the biopsy to rule out Celiac, but oddly enough I do not get the majority of the "classic" symptoms of gluten sensitivity (e.g. digestive issues).  About six months in, I got tired of eating bland food and turned to the seasonings in my cupboard.   The rub I make for my meats is awesome! Please don't ask for the recipe, because I can never remember how much and what goes in it. However, the main base for the rub is rubbed sage and sea salt. 

[Fundog]

Hi, and welcome.  People are really nice and helpful here.  I didn't get a positive diagnosis for celiac, but I too have some very strong suspicions/evidence that gluten, especially wheat, is not doing me any favors.  I have been fighting "eczema" for sixteen years continuously.  It mostly stayed confined to my feet and ankles until a year ago, when it spread to my legs and arms.  I began to suspect a food allergy, so I did an elimination challenge.  End of challenge, I broke out in hives on top of the already existing "eczema!"  I repeated the challenge, same result.   I finally decided I am never eating wheat-- or gluten-  again.  There ain't nothing delicious enough to be worth the misery I'm in right now, lol.  And every time my family eats something glutinous in front of me, I just keep reminding myself of that, while I'm poring on the Caladryl lotion.  

So I guess all that to say you're not alone!  You'll find this forum to be a nice source of moral support.

[cyclinglady]

It sounds like you might have had the blood test (antibodies) for Celiac Disease.  It is a shame that you opted not to do the endoscopy/biopsy for a firm diagnosis.  But that is not why I am responding.  I am concerned that you have not done enough research about this disease (some Celiacs, like me, never had intestinal symptoms), are not obtaining and understanding your medical records, and are under the assumption that a gluten free diet is bland.  Please check that your "rub" is gluten free.  

More questions?  We are here to help!   ?

[ravenwoodglass]

Welcome to the board. If you had positive blood tests for celiac you have celiac. I don't think they have developed tests for 'gluten sensitivity'. You may find it helpful to read the Newbie thread at the top of the coping page. Lots of good info there.

[cstark]

On ‎7‎/‎8‎/‎2016 at 1:49 AM, cyclinglady said:

It sounds like you might have had the blood test (antibodies) for Celiac Disease.  It is a shame that you opted not to do the endoscopy/biopsy for a firm diagnosis.  But that is not why I am responding.  I am concerned that you have not done enough research about this disease (some Celiacs, like me, never had intestinal symptoms), are not obtaining and understanding your medical records, and are under the assumption that a gluten free diet is bland.  Please check that your "rub" is gluten free.  

More questions?  We are here to help!   ?

What sort of symptoms have you had?

 

[squirmingitch]

I will answer you as to what symptoms I had (if I can remember them all LOL). Just to let you know, I have dermatitis herpetiformis aka "the celiac rash" which IS celiac. We tend to have fewer, milder GI symptoms and 60% of us test negative on the blood panel but still have the damage tot eh villi.

Okay, here goes:

Dizziness, sometimes unsteady gait, sort of walking not in a straight line if you know what I mean.

Heart pounding, rapid pulse, there were times my heart would beat irregularly.

Gas, Bloat like you wouldn't even believe.

Depression

Extreme fatigue

Anxiety

Joint, muscle & bone pain. Pain? Did I say pain? Excruciating doesn't even begin to describe it.

Hot flashes

Nerve spasms

Funny but since shortly after going gluten-free, I haven't had a single foot cramp.

Blepharitis, dry scratchy eyes, & a lot of mucus in my eyes

Indigestion

Anger & irritably, sometimes out & out rage

Sensitive teeth

I have a torus palate and it would swell greatly, become so painful I could hardly swallow and even become raw when I had not eaten anything scratchy or hard to abrade it.

Brain fog

Almost Alzheimer's like in that I forgot or would often forget even the most simple words such as fork or plate or car.

I began to stutter like there was a short circuit to my brain trying to get words out.

Migraines that were so extreme, so extreme

Fatty liver

High cholestrol

Hypertension

Every single one of those symptoms has gone. Every single one. I never suspected a lot of them were connected to gluten even after discovering I was celiac.

I'm sure I've forgotten things but......

There are some 200/300 symptoms associated with celiac disease.

 

[Fundog]

Wow.  The more I read other people's stories, the more convinced I become that I've had celiac disease-- in the very earliest stages-- since 2003, and just "slipped through the crack" despite extensive testing to rule out anything and everything.  About the only test I did NOT have at that time was an endoscopy.  :/

[cstark]

2 hours ago, squirmingitch said:

I will answer you as to what symptoms I had (if I can remember them all LOL). Just to let you know, I have dermatitis herpetiformis aka "the celiac rash" which IS celiac. We tend to have fewer, milder GI symptoms and 60% of us test negative on the blood panel but still have the damage tot eh villi.

Okay, here goes:

Dizziness, sometimes unsteady gait, sort of walking not in a straight line if you know what I mean.

Heart pounding, rapid pulse, there were times my heart would beat irregularly.

Gas, Bloat like you wouldn't even believe.

Depression

Extreme fatigue

Anxiety

Joint, muscle & bone pain. Pain? Did I say pain? Excruciating doesn't even begin to describe it.

Hot flashes

Nerve spasms

Funny but since shortly after going gluten-free, I haven't had a single foot cramp.

Blepharitis, dry scratchy eyes, & a lot of mucus in my eyes

Indigestion

Anger & irritably, sometimes out & out rage

Sensitive teeth

I have a torus palate and it would swell greatly, become so painful I could hardly swallow and even become raw when I had not eaten anything scratchy or hard to abrade it.

Brain fog

Almost Alzheimer's like in that I forgot or would often forget even the most simple words such as fork or plate or car.

I began to stutter like there was a short circuit to my brain trying to get words out.

Migraines that were so extreme, so extreme

Fatty liver

High cholestrol

Hypertension

Every single one of those symptoms has gone. Every single one. I never suspected a lot of them were connected to gluten even after discovering I was celiac.

I'm sure I've forgotten things but......

There are some 200/300 symptoms associated with celiac disease.

 

Some of those same symptoms I have been experiencing as well.  It started with a 45 minute session (YUK!) of consistent spasming.  It totally freaked me out.  Better yet, it happened during church.  The doctors referred me to psyche like it was all in my head.  DUH!  There was a week that I can remember bits and pieces of, but nothing more.  Totally was not cool.  My mom and I started to brainstorm since the doctors kind of wrote me off and decided I should try going completely off gluten and anything processed.  I went cold turkey.  Wasn't easy, but it helped with the spasming and brain fog.  (Glad I am not the only one who has experienced that one.)   Since then, the episodes of brain fog and spasms have become less and less.  I have learned a whole new of cooking and have become more conscious of what I eat.  I have also been using an essential oil that helps the spasms when my body goes haywire, and it helps keep things in check.

Didn't mean to give a life story.  Thanks for sharing.  Not sure if it is truly Celiac or not, but it helps knowing others have experienced similar symptoms and that it's not all our heads.  Have a great day tomorrow.

[Awol cast iron stomach]

Hello. In regards to dry spices I chucked them all due to the high prevalence of being produced in a shared wheat  facility.  Extreme I know but it's a long row since my glutening of March 2016- restaurants explained gluten-free order. Very distrustful right now . I grow fresh herbs right now in midwest summer in my yard.  I think i will have to obtain a grow light for my basement come fall. If someone has suggestions for a dry herb manufacturer in a dedicated facility I'd love to know name. We have always been a fresh garlic, basil, cilantro family but I added more than ever this year. Even better.

As for symptoms to be frank I have not been formally diagnosed it would be nice to be recognized but playing immune disorder roulette is not my idea of fun. I've slipped through the cracks as IBS/ gastroenteritis for years no endoscopy. I did have a colonoscopy. My cousin is diagnosed celiac. My husband and I determined gluten issues as my symptoms worsened over the years. Going off it made a huge difference. I am seeing a food intolerance / immunologist since the glutening of 2016  who might be the person who gets it.

I got glutenened in March 2016 and my joint pain only lifted 3 weeks ago. Today I couldn't remember the word sink. Brain fog. My brain fog is so bad since March , I actually mis pronounce it and say brain frog, my kids laugh, until my children really realize I am saying it because I can't get fog out of my mouth and am not joking. My background is biology based and their nursery theme as babies was frogs -so frog is always in my foggy brain I guess.

My symptom doisse some diagnosed some self diagnosed/unexplained history - young to old contains jaundice, unexplained seizure, IC, scarletina, hives, asthma, scoliosis, canker sores, appendicitis, gastroenteritis, IBS, sinus infections multiple, sacro iliac myalgia, ear infections multiple, multiple UTI often no clear conformation of   infection, shingles, middle ear infection/POTS, hay fever, environmental allergens, ,missed miscarriage, Pupps rash, vitamin d and folic acid deficiency, high risk pregnancies/deliveries, bout of amenorhea, anxiety, panic attacks, MCS, bloating, neuropathy/tingling toes and upper arm, brain fog, joint pain, rash on right elbow painful/ itchy but didn't flare on left but pain and itch senstation, I have gone from being 5'4" to 5'2" in my medical records as an adult, I am not menopausal,hypoalbuminemia noted as edema particularly fingers/abdominal, lower legs, SOB, not sure if I got them all but one gets the idea. I worried about my thyroid for the past 7 years it is still ok far as test results. See why I am not eager to be playing autoimmune roulette? My bodies fight to maintain " its" homeostasis has been commendable, as it awaits recognition and acknowledgement. It deserves respect. It got it when I gave up gluten 3 1/2 yrs ago. My leaky gut following glutening in March declared no more casein/milk, coffee, or benzoate per recent food diary. I abide.

Long list but you asked. Most days do I feel crazy? no, do other people state rudely so, yes. Going off gluten =priceless. And if that makes me crazy to do so then guilty as charged.

Good luck on your own journey. 

 

[cstark]

5 hours ago, Awol cast iron stomach said:

Hello. In regards to dry spices I chucked them all due to the high prevalence of being produced in a shared wheat  facility.  Extreme I know but it's a long row since my glutening of March 2016- restaurants explained gluten-free order. Very distrustful right now . I grow fresh herbs right now in midwest summer in my yard.  I think i will have to obtain a grow light for my basement come fall. If someone has suggestions for a dry herb manufacturer in a dedicated facility I'd love to know name. We have always been a fresh garlic, basil, cilantro family but I added more than ever this year. Even better.

As for symptoms to be frank I have not been formally diagnosed it would be nice to be recognized but playing immune disorder roulette is not my idea of fun. I've slipped through the cracks as IBS/ gastroenteritis for years no endoscopy. I did have a colonoscopy. My cousin is diagnosed celiac. My husband and I determined gluten issues as my symptoms worsened over the years. Going off it made a huge difference. I am seeing a food intolerance / immunologist since the glutening of 2016  who might be the person who gets it.

I got glutenened in March 2016 and my joint pain only lifted 3 weeks ago. Today I couldn't remember the word sink. Brain fog. My brain fog is so bad since March , I actually mis pronounce it and say brain frog, my kids laugh, until my children really realize I am saying it because I can't get fog out of my mouth and am not joking. My background is biology based and their nursery theme as babies was frogs -so frog is always in my foggy brain I guess.

My symptom doisse some diagnosed some self diagnosed/unexplained history - young to old contains jaundice, unexplained seizure, IC, scarletina, hives, asthma, scoliosis, canker sores, appendicitis, gastroenteritis, IBS, sinus infections multiple, sacro iliac myalgia, ear infections multiple, multiple UTI often no clear conformation of   infection, shingles, middle ear infection/POTS, hay fever, environmental allergens, ,missed miscarriage, Pupps rash, vitamin d and folic acid deficiency, high risk pregnancies/deliveries, bout of amenorhea, anxiety, panic attacks, MCS, bloating, neuropathy/tingling toes and upper arm, brain fog, joint pain, rash on right elbow painful/ itchy but didn't flare on left but pain and itch senstation, I have gone from being 5'4" to 5'2" in my medical records as an adult, I am not menopausal,hypoalbuminemia noted as edema particularly fingers/abdominal, lower legs, SOB, not sure if I got them all but one gets the idea. I worried about my thyroid for the past 7 years it is still ok far as test results. See why I am not eager to be playing autoimmune roulette? My bodies fight to maintain " its" homeostasis has been commendable, as it awaits recognition and acknowledgement. It deserves respect. It got it when I gave up gluten 3 1/2 yrs ago. My leaky gut following glutening in March declared no more casein/milk, coffee, or benzoate per recent food diary. I abide.

Long list but you asked. Most days do I feel crazy? no, do other people state rudely so, yes. Going off gluten =priceless. And if that makes me crazy to do so then guilty as charged.

Good luck on your own journey. 

 

I have been going to a Healing Touch therapist and this has helped keep my body systems in balance with one another.  Some people are under the impression that the Healing Touch realm borders on voodoo, but for some reason the science behind the therapy backs it up and it works.  If you do decide to do healing touch awol cast iron stomach, make sure it is someone who is certified.  

For me, I find that caffiene tends to bring on hyperactivity, so I try to stay away from it as much as possible.  I too, try to have a little dairy as possible and have found the almond milk to be a good substitute.  My family and I joke that it's all in my head and laugh it off.  Seriously though, sometimes the brain fog can really get to me.  It takes me longer to get things during the brain fog, and that gets me frustrated.  GGGGGRRRRRR!

Have a great day!

[deb-rn]

Some of the symptoms mentioned are also related to Sjogren's Disease.  It often goes hand in hand with Gluten Sensitivity.  I was diagnosed with it some years ago, but realized I'd had it in college.  I guess it's common to have more than one autoimmune disease.  My Sjogren's gives me many weird symptoms!  The mouth sores, inflammation of gums, phantom pains, stiff tendons/muscles, plantar fasciitis, etc..   The Gluten Sensitivity came later... or at least later is when I figured it out!  Brain fog... ugh!  Drives you nuts!

 

Debbie

[Awol cast iron stomach]

" If you do decide to do healing touch awol cast iron stomach, make sure it is someone who is certified."

 Thank you for the suggestion. I had a phenomenal DC in the late 90's early 2000's I did really very well under her care. She moved and  has been difficult to replace. I am meeting a rheumatologist later this month who may shed some light on my systems. I think hitting my fourth decade at a time celiac and autoimmune awareness is growing (thanks to many of you) so a more definitive western medicine diagnosis may come. A healing touch person like my former DC would be great.

 

 

 

 

 

[cstark]

25 minutes ago, Awol cast iron stomach said:

" If you do decide to do healing touch awol cast iron stomach, make sure it is someone who is certified."

 Thank you for the suggestion. I had a phenomenal DC in the late 90's early 2000's I did really very well under her care. She moved and  has been difficult to replace. I am meeting a rheumatologist later this month who may shed some light on my systems. I think hitting my fourth decade at a time celiac and autoimmune awareness is growing (thanks to many of you) so a more definitive western medicine diagnosis may come. A healing touch person like my former DC would be great.

 

 

 

 

 

For finding a certified healing touch practitioner in your area, go to Open Original Shared Link.  There is a tab for finding a practitioner there.  The website also gives more details on what healing touch actually is.  Good luck!

 

[Fundog]

AWOL and anyone else who grows fresh herbs, you can preserve your crop to use over the winter.   When you harvest your herbs, rinse the off, pat them dry with a paper towel, then tie them in small bundles and hang them to dry for a few days.  If you don't have room to hang dry, or if the plant stalks are such that don't tie well, spread them on paper plates or newspaper, parchment, butcher paper, etc.,and cover with paper towel, leave on a bookcase or other shelf, anywhere you can fit for about three days.  Each day check your herbs, turn them over so they can dry evenly.  Once try, you can crush them and put them into their own little spice jars.  Glass is best, but plastic will do if that's all you have.  If you want them more finely ground, you can grind them up in a small handheld coffee spice grinder.   You can also freeze your fresh herbs in ice cube trays or small freezer containers, with water or broth.