Awol cast iron stomach

3 hours ago, Ennis_TX said:

For the scopes you only have to be eating gluten daily for 2 weeks, so figure out when your supposed to take them and eat at least 1-2 slices of bread a day 2 weeks prior. BUT you should be warned if you are a celiac after going gluten free your immune system will attack much worse when reintroduced to gluten, so personal advice if your doing the testing is do not go gluten free yet.

"BUT you should be warned if you are a celiac after going gluten free your immune system will attack much worse when reintroduced to gluten,"

 yes- this! 

good luck with your testing  and welcome

All great info Ennis have you. I developed 13 additional food intolerances after my gluten challenge. I blended a lot of my foods at first to make it easier on my digestive tract. I even had to limit gluten-free foods as my body liked food the simplier the better. My body didn't like a lot of additives or ingredients.  I tried to keep it under 5 ingredients or made homemade.

Welcome and you found a forum with knowledgeable supportive people like you on this new journey.

Cycling lady gives great advice. 

I grew extremely fearful of gluten crumbs more than ever before. I also had a few years gluten-free before my  2 week gluten challenge . I was sick over 2 1/2 years and I was terrified of crumbs because I did become even more sensitive the more strict I got. I had to be more strict to feel my best etc.

I am still in that learning part CL mentions 

"Reactions from gluten can become quite severe for some celiacs.  It happens to me.  So, I am extra careful.  Just  try to move forward and heal. "

i hate when it happens and it still rattles me. My husband works real hard to remind me that it happens and I have to learn to accept it and move on and heal. I have even developed my comfort and routine to support healing using acupuncture etc, but it is still hard.

welcome, you are in good company on this journey.

Interesting. Thanks for sharing. All the best to your daughter and her passion for dance.

As above posters said some don't show gold standard results. 

My journey , I could not finish my 2 week gluten challenge. I am considered NCGS. My symptoms are a mile long and include many organ system besides gi and skin.

My endoscopy showed intraepithelial infiltration, inflammation, (visible by the naked eye stomach and esophageal) discolored angry inflammation .  The past three years when the unlikely cc event occurs I break out faithfully in Dermatitis Herpteformis. I can't finish a 2 week challenge, so no 12 week challenge will be taking place to get a gold standard. 

As I learned from the veterans here DH may never show typical blood work results. I learned from veterans here to stay as whole foods as possible and limit processed to those my body likes often considered certified gluten-free.

Good luck on your journey. They may not completely understand where NCGS fits in etc, but my opinion take the diagnosis serious.

Edit : to answer your initial question about eating gluten not an exact /direct answer. When I get damaged cc I crave deep dish Chicago style pizza and Chicago style hot dogs for a few days after. I do not act on it or actually eat either, but it is an odd thing I have noticed . 

I love Ennis bucket list .

Mine is an afterlife dream of being greeted in the afterlife with a deep dish Chicago style pizza .

5 hours ago, GFinDC said:

Hi Elly,

You may not get much response since this is an old thread.  I used to start getting symptoms about 30 minutes after consuming gluten.  I had many symptoms including dry heaves and projectile vomiting.

Did your doctor test you for celiac disease before telling you to go gluten-free?  If not they screwed up bad.

You have learned that the immune system reacts to tiny amounts of gluten.  The immune system also reacts to tiny germs we can't see with the naked eye.  So even minor seeming cross contamination can make us sick.  Sharing condiments with gluten eaters is a bad idea.  Sharing a toaster is also a bad idea.  Kissing a gluten eater can also be bad if they haven't brushed their teeth well.  There's lot's to learn about eating gluten-free.

Hi Elly, 

DC is very knowledgeable and I find him very helpful since I joined the forum. 

I avoid gluten As much as humanly possible. I get my ataxia symptoms first, my gi symptoms within 35-45 minutes of consumption.  My DH (the rash) arises in 7-9 hours.  2 days my mood plummets. I get a variety of symptoms and they can vary at times. My consistent symptoms are ataxia, gi, DH, neuropathy.

In the course of my years undiagnosed ( as I was misdiagnosed ) and during my challenge nausea is prevalent. Shortly into trying to add gluten back into my diet for my challenge I would often have to pull over while driving due to nausea. A few days into my challenge I stopped driving due to my ataxia, so the nausea at that point was moot. 

welcome to the forum. 

sometimes it's best to strictly and consistently remove gluten from the diet to fully comprehend just how bad it is for you. 

it took me over 2 years to recover after  my gluten challenge. 

stay strong and  consistently gluten-free

13 minutes ago, Awol cast iron stomach said:

Hi checking in on you again to finish with your inquiries to the best of my abilities the physiological based details. 

"What fo you mean your Gallbladder was a trickle of bile?" 

As you know I explained I went gluten-free prior to my challenge. So I knew what my body felt like before and how it functioned physiologically better after I removed Gluten for 3 years. Let me clarify, I love biology, have spent years studying anatomy/ physiology, teaching it so I probably think about it and focus on it more than the average person. I am also told by alternative practitioners that I have an incredible mind/body connection.  Traditional Dr's  the believers listen, but don't comment, non believers give odd looks, and likely somewhere in my file someone wrote I am nuts. Joy.    

That mind/body connection is innate, but has been honed through bonding and practice. So I can only explain that I could feel sub par release of bile as many of my organs felt inflamed liver, gallbladder, and spleen list goes on. My intestines, stomach, and esophagus were raw (and look so on the scope). My intestines felt like they ripped apart in areas and their cellular integrity and what was once whole was not like a strainer with holes in it . Food dumped my into my blood stream through these holes where before they had not. I would feel itching under my skin that followed the path our blood/cardiovascular system takes. Often I get red in these areas flush and if I am really unlucky DH flares.

To me the bile trickle would be almost like it did not flow like it was suppose to. My body struggled to digest. The organs above didn't function at their proper level which just further down the line screws everyone else (other organs) up. A part of my small intestine feels achy, like their is a hole in it and well my poor Large intestine and colon yells up to everyone else "what is the matter with all you up there, I can't process all this! Do your job!" I often would eat small meals or literally rest to digest. My organs either were not working communicating properly or were so inflamed they could not. I would eat something like meat steak, chicken etc, but it was not digesting properly. It was sluggish, things of substance like meat literally hurt to digest. It sat there. It was as if the bile was trying to release, but could not. (I can't tell you whether it is inflammation or nerve process (vagus), or hormone because likely it is all three struggling as Gluten messes me up that bad on many system levels. It is likely all 3. I would lay resting and digesting often meditating (since I could not sleep, and could not wake the family) because I bit off what I could chew, but apparently optimistically hoped my body could now process as I was diagnosed and gluten free again. Well Gallbladder felt like it wanted to release but struggled to do so. The metaphor I can give you is when a car tries to turn over with a bad battery. The starter is clicking, but the battery is dead so it just wont turn over. I would cry, pray, meditate, apologize to my body for asking it to do too much when it was damaged and wonder when I would be able to eat gluten-free normal again. 

I continued to see an acupuncturist and dialed back the foods I struggled to digest aka fats. I told my body we would do a little bit of them at dinner. I would have 1/4 of the chicken breast, weeks later up to a half etc. I told my body I have to ask you to rise to the challenge as you have to return to function, we can't heal if we don't eat. If I don't challenge you to do your job you will not return to function. I will give you blended foods, and give you non meat during the day because the rest of the body is taking up energy. At dinner I will give you some meat, and I will stay low key so you get the "floor" to focus on your job. We (me and my body) negotiated a deal.

Meanwhile, the acupuncturist managed the inflammation. I continued to eat in the quest to heal, making the GI tract work on dinner in a low key state.  I was so happy in the wee early morning one day months later when it turned back on!I Yes, sounds odd, but you asked. I began to meditate at night after everyone was in bed to communicate with my body during our difficult digestion time. One night as I laid meditating & listening to Paul McCartney sing Let It Be and I cried, I felt a  surge of energy and release. I felt my gallbladder "fire" back on it was a hardy strong release, and what I imagine was a biochemical rejoice and welcome by the liver and small intestine to the gallbladder. They say "Hey your back, where have you been? Don't answer we are glad your back". My Large intestine said "Thank God can you all stop sending so much my way I can't process this and I am sick of being constipated since you can't do your job"  It happened at 12:30 am Gallbladder time in TCM. Was it the gallbladder well I was not connected to any medical equipment to know for sure. I thanked my acupuncturist and told her my gallbladder came back online and told her the time per TCM clock. I was able to eat meat again, but I still choose less fatty pieces.

"When you were doing your 2 week challenge, what would happen after you ate gluten? "

I didn't intend to get a diagnosis and attempt a challenge it was by default. I went out to eat for my sister's 50th b-day party and despite emailing that they could and would accommodate me they failed!!!!  The meal they gave me had flour in it I tasted it in the first bite, but it was too late. Spitting it out etc does not work within 45 minutes my immediate I had intestine pain like a 2x 4 with many nails in it came down with force on my small intestine. I bloated, began edema, itching, eyes watering, and sinus congestion. The Gi issues, myalgia, joint pain, ataxia, neuropathy last weeks.

Attempting a 2 week challenge brings are far more symptoms as you are actively eating gluten: 

All the above symptoms except they told me to take H1 and H2 to control some of the severity of my symptoms. Regardless of H1  & H2 anti histamine aiding some symptoms the immune system rages on:

Nausea

Bloating/Edema

Fatigue

Joint pain

Muscle pain

Migraine

Skin rash

Loose stools, Constipation, Diarrhea

Irritability

Mood issues

Ataxia

Neuropathy

itching under skin

Throws off Menstrual period 

I am sure I am missing some, but those are the main symptoms.

Thank you you for bringing up that some are hard to diagnose. Its only been 18 months since my health issues began and I’m just so weak and exhausted. You were trying for 20 years to get help, that’s crazy. 

 I was misdiagnosed for 20 plus years as IBS based on symptoms only. I went the alternative route to manage my symptoms. I had several intervals over those years of going back with  symptoms that are my symptoms primary cares, allergy/immunology, derms, even had colonoscopy  with GI. One of my  OB/GYN diagnosed me with PUPPP rash but that was in 2004 and before U of I Celiac center said this. The nurse called her on my behalf due to my awful rash My Dr's response was to ignore the 2 calls and on the 3rd call (as my nurse shift was ending and she wanted to make sure I was seen. I quote her "Quit being such a baby it's only a Puppp rash" This was in 2004

In 2016 U of I Celiac center does seem to think a Puppp rash might be a big deal for someone with DH

http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/

I went gluten-free on my own after reading a research article for someone else who needed my help and the thought occurred "I don't have IBS, I have gluten intolerance or Celiac!" 

So I did not try for 20 years straight, it was on/off on my part, a lot of misses in the medical fields part. I only told you a few stories. I eventually went the alternative route, as I gave up when things were not working out, and I figured there was no test for what I had. However, yes I do think it could and should have been discovered earlier. 

I can share it also took my cousin who was diagnosed before me 2 years of seeing medical professionals and many Dr's to get her gold standard diagnosis. She ironically is a nurse and she was to my understanding (based on our discussions after my diagnosis) possibly at times dismissed, until she saw a rheumatologist who told her what she thought she had and that she needed a GI for an endoscope which confirmed her rheumatologist. She saw many Dr's, had many tests for some pretty scary things until that rheumatologist.

So yes it is sometimes a very long road to diagnosis.

 

What tips can you give for eating food again? What’s the best items you were blending for optimal nutrition? What food items did you start with in the beginning? See previous post.

 

Edit: My apologizes the website or windows is causing me problems in writing and posting. It is sending and affecting mypost/ work before, I gave command to do so and apparently sent several copies was not my intention. I tried to delete them it did not work. The last one should have full post.

 

Good luck on your path to getting clarity in your diagnosis. I wish you the best on your healing path. Lastly, welcome you will be relived on some level if you found us/your peeps. I found so many aha moments and kindred Celiac/DH/NCGS here on the forum. 

On ‎7‎/‎2‎/‎2019 at 8:12 AM, KariB said:

Can you please give advise on what you were blending exactly. The last 2 days I’ve tried to do that with ingredients they say will help boost my immune system. All natural stuff, without a doubt gluten free. And I’m worse. 

 

What fo you mean your Gallbladder was a trickle of bile? Can you please elaborate just curious if we have the same symptom. When you were doing your 2 week challenge, what would happen after you ate gluten? 

 

Thank you you for bringing up that some are hard to diagnose. Its only been 18 months since my health issues began and I’m just so weak and exhausted. You were trying for 20 years to get help, that’s crazy. 

What tips can you give for eating food again? What’s the best items you were blending for optimal nutrition? What food items did you start with in the beginning? 

As for my gallbladder CT and ultrasound were clear..

Hi checking in on you again to finish with your inquiries to the best of my abilities the physiological based details. 

"What fo you mean your Gallbladder was a trickle of bile?" 

As you know I explained I went gluten-free prior to my challenge. So I knew what my body felt like before and how it functioned physiologically better after I removed Gluten for 3 years. Let me clarify, I love biology, have spent years studying anatomy/ physiology, teaching it so I probably think about it and focus on it more than the average person. I am also told by alternative practitioners that I have an incredible mind/body connection.  Traditional Dr's  the believers listen, but don't comment, non believers give odd looks, and likely somewhere in my file someone wrote I am nuts. Joy.    

That mind/body connection is innate, but has been honed through bonding and practice. So I can only explain that I could feel sub par release of bile as many of my organs felt inflamed liver, gallbladder, and spleen list goes on. My intestines, stomach, and esophagus were raw (and look so on the scope). My intestines felt like they ripped apart in areas and their cellular integrity and what was once whole was not like a strainer with holes in it . Food dumped my into my blood stream through these holes where before they had not. I would feel itching under my skin that followed the path our blood/cardiovascular system takes. Often I get red in these areas flush and if I am really unlucky DH flares.

To me the bile trickle would be almost like it did not flow like it was suppose to. My body struggled to digest. The organs above didn't function at their proper level which just further down the line screws everyone else (other organs) up. A part of my small intestine feels achy, like their is a hole in it and well my poor Large intestine and colon yells up to everyone else "what is the matter with all you up there, I can't process all this! Do your job!" I often would eat small meals or literally rest to digest. My organs either were not working communicating properly or were so inflamed they could not. I would eat something like meat steak, chicken etc, but it was not digesting properly. It was sluggish, things of substance like meat literally hurt to digest. It sat there. It was as if the bile was trying to release, but could not. (I can't tell you whether it is inflammation or nerve process (vagus), or hormone because likely it is all three struggling as Gluten messes me up that bad on many system levels. It is likely all 3. I would lay resting and digesting often meditating (since I could not sleep, and could not wake the family) because I bit off what I could chew, but apparently optimistically hoped my body could now process as I was diagnosed and gluten free again. Well Gallbladder felt like it wanted to release but struggled to do so. The metaphor I can give you is when a car tries to turn over with a bad battery. The starter is clicking, but the battery is dead so it just wont turn over. I would cry, pray, meditate, apologize to my body for asking it to do too much when it was damaged and wonder when I would be able to eat gluten-free normal again. 

I continued to see an acupuncturist and dialed back the foods I struggled to digest aka fats. I told my body we would do a little bit of them at dinner. I would have 1/4 of the chicken breast, weeks later up to a half etc. I told my body I have to ask you to rise to the challenge as you have to return to function, we can't heal if we don't eat. If I don't challenge you to do your job you will not return to function. I will give you blended foods, and give you non meat during the day because the rest of the body is taking up energy. At dinner I will give you some meat, and I will stay low key so you get the "floor" to focus on your job. We (me and my body) negotiated a deal.

Meanwhile, the acupuncturist managed the inflammation. I continued to eat in the quest to heal, making the GI tract work on dinner in a low key state.  I was so happy in the wee early morning one day months later when it turned back on!I Yes, sounds odd, but you asked. I began to meditate at night after everyone was in bed to communicate with my body during our difficult digestion time. One night as I laid meditating & listening to Paul McCartney sing Let It Be and I cried, I felt a  surge of energy and release. I felt my gallbladder "fire" back on it was a hardy strong release, and what I imagine was a biochemical rejoice and welcome by the liver and small intestine to the gallbladder. They say "Hey your back, where have you been? Don't answer we are glad your back". My Large intestine said "Thank God can you all stop sending so much my way I can't process this and I am sick of being constipated since you can't do your job"  It happened at 12:30 am Gallbladder time in TCM. Was it the gallbladder well I was not connected to any medical equipment to know for sure. I thanked my acupuncturist and told her my gallbladder came back online and told her the time per TCM clock. I was able to eat meat again, but I still choose less fatty pieces.

"When you were doing your 2 week challenge, what would happen after you ate gluten? "

I didn't intend to get a diagnosis and attempt a challenge it was by default. I went out to eat for my sister's 50th b-day party and despite emailing that they could and would accommodate me they failed!!!!  The meal they gave me had flour in it I tasted it in the first bite, but it was too late. Spitting it out etc does not work within 45 minutes my immediate I had intestine pain like a 2x 4 with many nails in it came down with force on my small intestine. I bloated, began edema, itching, eyes watering, and sinus congestion. The Gi issues, myalgia, joint pain, ataxia, neuropathy last weeks.

Attempting a 2 week challenge brings are far more symptoms as you are actively eating gluten: 

All the above symptoms except they told me to take H1 and H2 to control some of the severity of my symptoms. Regardless of H1  & H2 anti histamine aiding some symptoms the immune system rages on:

Nausea

Bloating/Edema

Fatigue

Joint pain

Muscle pain

Migraine

Skin rash

Loose stools, Constipation, Diarrhea

Irritability

Mood issues

Ataxia

Neuropathy

itching under skin

Throws off Menstrual period 

I am sure I am missing some, but those are the main symptoms.

Thank you you for bringing up that some are hard to diagnose. Its only been 18 months since my health issues began and I’m just so weak and exhausted. You were trying for 20 years to get help, that’s crazy. 

 http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/ http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/I was misdiagnosed for 20 plus years as IBS based on symptoms only. I went the alternative route to manage my symptoms. I had several intervals over those years of going back with  symptoms that are my symptoms primary cares, allergy/immunology, derms, even had colonoscopy  with GI. One of my  OB/GYN diagnosed me with PUPPP rash but that was in 2004 and before U of I Celiac center said this. The nurse called her on my behalf due to my awful rash My Dr's response was to ignore the 2 calls and on the 3rd call (as my nurse shift was ending and she wanted to make sure I was seen. I quote her "Quit being such a baby it's only a Puppp rash"http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/

I went gluten-free on my own after reading a research article for someone else who needed my help and the thought occurred "I don't have IBS, I have gluten intolerance or Celiac!" 

What tips can you give for eating food again? What’s the best items you were blending for optimal nutrition? What food items did you start with in the beginning? 

On ‎7‎/‎2‎/‎2019 at 8:12 AM, KariB said:

Can you please give advise on what you were blending exactly. The last 2 days I’ve tried to do that with ingredients they say will help boost my immune system. All natural stuff, without a doubt gluten free. And I’m worse. 

 

What fo you mean your Gallbladder was a trickle of bile? Can you please elaborate just curious if we have the same symptom. When you were doing your 2 week challenge, what would happen after you ate gluten? 

 

Thank you you for bringing up that some are hard to diagnose. Its only been 18 months since my health issues began and I’m just so weak and exhausted. You were trying for 20 years to get help, that’s crazy. 

What tips can you give for eating food again? What’s the best items you were blending for optimal nutrition? What food items did you start with in the beginning? 

As for my gallbladder CT and ultrasound were clear..

Hi checking in on you again to finish with your inquiries to the best of my abilities the physiological based details. 

"What fo you mean your Gallbladder was a trickle of bile?" 

As you know I explained I went gluten-free prior to my challenge. So I knew what my body felt like before and how it functioned physiologically better after I removed Gluten for 3 years. Let me clarify, I love biology, have spent years studying anatomy/ physiology, teaching it so I probably think about it and focus on it more than the average person. I am also told by alternative practitioners that I have an incredible mind/body connection.  Traditional Dr's  the believers listen, but don't comment, non believers give odd looks, and likely somewhere in my file someone wrote I am nuts. Joy.    

That mind/body connection is innate, but has been honed through bonding and practice. So I can only explain that I could feel sub par release of bile as many of my organs felt inflamed liver, gallbladder, and spleen list goes on. My intestines, stomach, and esophagus were raw (and look so on the scope). My intestines felt like they ripped apart in areas and their cellular integrity and what was once whole was not like a strainer with holes in it . Food dumped my into my blood stream through these holes where before they had not. I would feel itching under my skin that followed the path our blood/cardiovascular system takes. Often I get red in these areas flush and if I am really unlucky DH flares.

To me the bile trickle would be almost like it did not flow like it was suppose to. My body struggled to digest. The organs above didn't function at their proper level which just further down the line screws everyone else (other organs) up. A part of my small intestine feels achy, like their is a hole in it and well my poor Large intestine and colon yells up to everyone else "what is the matter with all you up there, I can't process all this! Do your job!" I often would eat small meals or literally rest to digest. My organs either were not working communicating properly or were so inflamed they could not. I would eat something like meat steak, chicken etc, but it was not digesting properly. It was sluggish, things of substance like meat literally hurt to digest. It sat there. It was as if the bile was trying to release, but could not. (I can't tell you whether it is inflammation or nerve process (vagus), or hormone because likely it is all three struggling as Gluten messes me up that bad on many system levels. It is likely all 3. I would lay resting and digesting often meditating (since I could not sleep, and could not wake the family) because I bit off what I could chew, but apparently optimistically hoped my body could now process as I was diagnosed and gluten free again. Well Gallbladder felt like it wanted to release but struggled to do so. The metaphor I can give you is when a car tries to turn over with a bad battery. The starter is clicking, but the battery is dead so it just wont turn over. I would cry, pray, meditate, apologize to my body for asking it to do too much when it was damaged and wonder when I would be able to eat gluten-free normal again. 

I continued to see an acupuncturist and dialed back the foods I struggled to digest aka fats. I told my body we would do a little bit of them at dinner. I would have 1/4 of the chicken breast, weeks later up to a half etc. I told my body I have to ask you to rise to the challenge as you have to return to function, we can't heal if we don't eat. If I don't challenge you to do your job you will not return to function. I will give you blended foods, and give you non meat during the day because the rest of the body is taking up energy. At dinner I will give you some meat, and I will stay low key so you get the "floor" to focus on your job. We (me and my body) negotiated a deal.

Meanwhile, the acupuncturist managed the inflammation. I continued to eat in the quest to heal, making the GI tract work on dinner in a low key state.  I was so happy in the wee early morning one day months later when it turned back on!I Yes, sounds odd, but you asked. I began to meditate at night after everyone was in bed to communicate with my body during our difficult digestion time. One night as I laid meditating & listening to Paul McCartney sing Let It Be and I cried, I felt a  surge of energy and release. I felt my gallbladder "fire" back on it was a hardy strong release, and what I imagine was a biochemical rejoice and welcome by the liver and small intestine to the gallbladder. They say "Hey your back, where have you been? Don't answer we are glad your back". My Large intestine said "Thank God can you all stop sending so much my way I can't process this and I am sick of being constipated since you can't do your job"  It happened at 12:30 am Gallbladder time in TCM. Was it the gallbladder well I was not connected to any medical equipment to know for sure. I thanked my acupuncturist and told her my gallbladder came back online and told her the time per TCM clock. I was able to eat meat again, but I still choose less fatty pieces.

"When you were doing your 2 week challenge, what would happen after you ate gluten? "

I didn't intend to get a diagnosis and attempt a challenge it was by default. I went out to eat for my sister's 50th b-day party and despite emailing that they could and would accommodate me they failed!!!!  The meal they gave me had flour in it I tasted it in the first bite, but it was too late. Spitting it out etc does not work within 45 minutes my immediate I had intestine pain like a 2x 4 with many nails in it came down with force on my small intestine. I bloated, began edema, itching, eyes watering, and sinus congestion. The Gi issues, myalgia, joint pain, ataxia, neuropathy last weeks.

Attempting a 2 week challenge brings are far more symptoms as you are actively eating gluten: 

All the above symptoms except they told me to take H1 and H2 to control some of the severity of my symptoms. Regardless of H1  & H2 anti histamine aiding some symptoms the immune system rages on:

Nausea

Bloating/Edema

Fatigue

Joint pain

Muscle pain

Migraine

Skin rash

Loose stools, Constipation, Diarrhea

Irritability

Mood issues

Ataxia

Neuropathy

itching under skin

Throws off Menstrual period 

I am sure I am missing some, but those are the main symptoms.

Thank you you for bringing up that some are hard to diagnose. Its only been 18 months since my health issues began and I’m just so weak and exhausted. You were trying for 20 years to get help, that’s crazy. 

 http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/ http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/I was misdiagnosed for 20 plus years as IBS based on symptoms only. I went the alternative route to manage my symptoms. I had several intervals over those years of going back with  symptoms that are my symptoms primary cares, allergy/immunology, derms, even had colonoscopy  with GI. One of my  OB/GYN diagnosed me with PUPPP rash but that was in 2004 and before U of I Celiac center said this. The nurse called her on my behalf due to my awful rash My Dr's response was to ignore the 2 calls and on the 3rd call (as my nurse shift was ending and she wanted to make sure I was seen. I quote her "Quit being such a baby it's only a Puppp rash"http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/

I went gluten-free on my own after reading a research article for someone else who needed my help and the thought occurred "I don't have IBS, I have gluten intolerance or Celiac!" 

What tips can you give for eating food again? What’s the best items you were blending for optimal nutrition? What food items did you start with in the beginning? 

Please also give a review if this works for you. I avoid gluten as much as possible (entirely gluten-free home etc no eating out) and after my last cc incident. I have issues they seem like mast cells or histamine related. I up the B-12 in addition to what is in my multi, it seems to help, but not enough. So I may have to follow your lead.  I do also wonder if the cc hits sin an area where my DAO also resides as you say.  

Please keep us updated and good luck

Many like cycling lady and Ennis on here said to whole foods. I had to go a step further and blend. In general anti inflammatory food lists items. Think smoothies and soups. Lots of greens, fruits, veggies, I stayed off meats or anything that required gallbladder and pancreas/ bile and enzymes. So initially I was blending broccoli as quasi soup. Blueberry banana smoothie etc. I had many additional intolerance s as well. I could not handle cows milk and could not do store bought milk alternatives too many fillers and additives etc upset my immune system . My Dr/team had me doing a food dairy and I was losing foods like "falling dominos" as My intolerance s were plenty. My immune system was ticked the enemy( gluten ) entered and the immune system unleashed a can of whoop "ahem" in extreme retaliation. 

I made my own almond milk. Filtered water, soaked almonds, blended, and filtered through a nut milk bag. Veggies and fruit. I moved on to challenge my body with adding honey or a tablespoon of peanut butter as the body and I upped the ante as the immune system did its thing. I enjoyed smoothie banana, Almond milk, a bit of honey , and a table spoon peanut butter. Etc. Processed store bought non whole foods really ticked off my immune system. In additional to no gluten, I lost cow milk products, corn, corn dervatives, tomatos, peppers, the list went on. I had to use joint pain and muscle myalgia as My food diary response symtoms. If either of those symptoms flared I had to drop it. Those were my particular "early" symptoms. My gut was extremely damaged aka leaky so everything dumped into my blood stream. The joint and myalgia symptoms ruled my eating.

I chose foods starting with whole foods anti inflammatory lists, greens the body liked greens. As I moved into non blending carrots and cut up apples my body approves of. I could not handle meat at first. I tried the least fatty steak, small piece, cut up to micro pieces, chewed to mush, and spent the night awake crying and in pain, as My body struggled to digest. Didn't do that again. I spent more time sleeping than I ever did in life. The kid my mom said never slept got her kids off to school each day and slept until an alarm woke her 15 minutes before they got home. I could not get enough sleep during the challenge unable to sleep, making up for lost time.

How did I get my organs back, I let my body immune system, symptoms, and too diary dictate my life. I eventually got managed out at work aka quit and seriously slept 2 years. I went to accupuncturist as My lead Dr mentioned in passing I may find it helpful. I have in earlier posts how I was meditating late one night after months of  acupuncture and my gallbladder fired on and I felt a release. I have a mind body connection that most people don't understand. It is who I am and I note it.is.from the 20 plus years I went alternative route managing my issues that later were named gluten intolerance.

I apologize I will check in with you later with more answers to your questions. I gotta get one of my kiddos up, fed, and out the door to ortho. 

I'll update more later.

Good luck and forgive typos etc my autocorrect loves to change my thoughts sometimes.

After my gluten challenge I literally blended my food as most of my organ systems were inflamed,damaged , and sub par functioning. They could not perform, do their job, they were injured. When I walked my spleen hurt. My spleen! My gallbladder was at a trickle of bile, while I knew it worked well before ( as I was gluten-free before my challenge that is a whole other story) 

I am not saying you should not have your gallbladder checked, but I do know from personal experience I had to listen to my body during that difficult time. I unlike you do not lose dramatic amounts of weight. I do lose weight just not dramatic amounts . I bloat and appear to have edema. I can share I hated food and didn't want to eat.

I  worked to communicate with my body over the decades I dealt with this long before it was diagnosed/named. Since my background is biology, I spent many years trying to put myself in my bodies' shoes.

Are you willing to blend your foods, liquify them? To be blunt your body needs to lower inflammation and heal, in order to do this it needs the energy from food to do so. You are finding it hard to eat. My advice based on my experience is eat whole foods, anti inflammatory, liquefied if you need to. Give your body the food it needs to heal.

I was unable to finish my 2 week challenge, ( which I told them before I could not) I am currently diagnosed NCGS and had inflammation and infiltration of immune cells on my scope , but not Marsh grade.  Although it has been revealed in time I am a DH. My rash has a mind of its own.  My ataxia arrives quickly and my rash appears in 7-9 hours.  I leave the record as it is as I am gluten intolerance sure . That was challenge enough. 

( My history of misdiagnosis and missed opportunities were 20 plus years) I learned from veterans here to live like a DH celiac and that is what my immune system likes.

Welcome by the way. Some of us are hard to diagnose and don't check all the "boxes". I do think it's possible you can keep that gallbladder, but it needs to be babied and supported during its return to health and full function.

Good luck and patient healing 

On 6/18/2019 at 5:19 PM, Posterboy said:

Awol Cast Iron Stomach,

If you are having issues with keeping your hands warm especially you might have Raynauds  syndrome. RS can happen 2ndary when you have other autoimmune diseases to your original autoimmune disease. ...like Lupus or Sjorgens disease as an example.

Here is a couple good links about it .

https://www.organicfacts.net/home-remedies/raynauds-disease.html

https://www.verywellhealth.com/natural-remedies-for-raynauds-disease-89306

https://healthfully.com/545281-magnesium-raynauds-syndrome.html

I hope this is helpful but it is not medical advise.

Posterboy,

Thanks for the information poster boy. Yes,the last few months have been hard on my body. As Ennis pointed out I might be unrealistic about the ataxia/neurology component and healing. As MCAS was something my diagnosing team diagnosis and I didn't fit / check all those boxes. Some days it makes me wonder did they miss something. My husband reminds me they did the tests, scopes, etc and it didn't show anything else.

The Raynard's is another good point. My celiac cousin early on let me know about that as she was knowledgeable about that too. While I do get cold toes it is not regular and for the most part I am told my hands are warm.

It is almost like my body gets stressed by the drastic change in temp in the same day and can't keep up. I am hoping that the new acupuncturist can help. 

Thank you again for giving me the info.

On 6/11/2019 at 8:42 PM, Ennis_TX said:

I sometimes wonder if my ataxia did something that effected my body temp, I spent a few months with a constant 101-104F fever, docs found nothing wrong, or sign my body was dealing with anything. It has been tapering down to a average 99F this last week.
There was also the nerve issues a chiropractor confirmed, with damage nerves around the T7 and a few others showing below normal readings when they did this odd electrical testing for nerve functions last year.
They say spine/nerve/brain damage can take years for some to heal.......

I do normally have issues with walking, balance, dropping things, feeling hot/cold, after a exposure. It tapers off after a few weeks, the hot/cold issues lasting months.
 

I am still working on it. I appreciate the feedback. I do often have similar symptoms to you. I am not sure if it is an immune issue or more of a neurological issue. As you said I may just be unrealistic about how long the neurological stuff takes. So many of our organ systems can get challenged or need to heal. Meanwhile I am trying to return to the workforce and My body may be a bit challenged by that.

This week I had shooting nerve pain in one leg all the way to tip of toe. The new acupuncturist with the emphasis in Neuro got it under control. I also made sure to get my b vitamins, mg, and others supplement s. 

thank you again for your input . Always appreciated.

Any one with Ataxia often have symptoms that could fall under MCAS, POTS, or autonomic dysfunction? 

Since returning to work I've been working hard to keep some Celiac\DH symptoms under control. I have been doing well for most part. Even stopped eating in work lunchroom to ensure I am safe from cc. I have had struggles on\off last 8 months with  neuropathy , lightheadedness, hypoglycemic like symptoms, temperature ( to be fair my body is challenged as my workplace has to do AC /HVAC worked on as when I move from one wing to another there are dramatic differences in temps. For example in one wing my co-worker wears sleeveless and the others in another wing was so cold she had her winter coat on in June. Hopefully it gets worked on. I have to move among wings so I try my best to wear layers.

I have begun to wonder if I'm struggling with other sub clinical autoimmune fall out issues since my diagnosis in 2016. 

While the My symptoms fall under those syndromes listed above I am wondering if celiac and ataxia destroys our autonomic nervous system. Or throws off the autonomic/parasympathtic system or makes us vulnerable.  Does this just take longer to heal? Or do most of you still get symptoms from time to time even if the celiac/DH is under control.

I recently switched/ begun to see a different acupuncturist with additional certification/licensing in neurological in addition to her autoimmune credentials. She is currently pursuing doctorate PhD work as well. 

Just need to know if anyone else has had this crop up. As I am trying to get this manageable as I am hired back for fall session and My husband needs/wants me to keep my job and benefits.

Thanks 

Hi there,

One incident of cc at a restaurant my left arm went completely numb within 30-45 minutes after consumption.

My symptoms fall like dominos and often in a similar pattern, but it can vary . I avoid gluten, but I also was misdiagnosed for 20 plus years . I have had symptoms my lifetime.

After diagnosis and living more strict I found the following. My ataxia and nerves tell me usually within 45 minutes. My DH patches ( I'm grateful just patches last few cc) flare  within 9 hours. My mood is very low for 2 -4 days.  GI and hair shedding and vitamin absorption is off for weeks. 

I am sorry you are going through this. The set backs are always hard. Especially when we finally know what it is, learn how to live this lifestyle from this forum, and ate due diligent. 

I learned on here that I need to live a very strict gluten-free lifestyle. I don't eat out, focus on whole foods, Paleo recipes. I still occasionally have sadly been exposed and psychologically this is tough because I feel like I failed my body and myself when it happens. One feels vunerable and helpless at times. My husband reminds me it is everywhere and I work really hard at it and sometimes even meticulous/ strict  celiac's  get  glutened. He says it happened you know what to do and what it is. Let your body heal and your bring upset doesn't help.

The lifestyle transition of not eating out unless an exclusive  gluten-free restaurant can be hard to accept at first. Some of us require just that to limit are exposure.

You are doing well. It's a cc set back. Focus on healing not the cc... I know it's hard. I too have been there.

Yes , personally my stomach was horrendous on my endoscopy seen by naked eye in scope photos. I must stay gluten-free for not only my intestines , stomach, nerves, brain, gallbladder, pancreas and hormones. I probably forgot something else.

Edit - I forgot to add I was negative h pylori etc . So that was ruled out.

Welcome as gluten-free in DC says we often have issues. I had 13 additional food intolerances after my diagnosis. My immune system was quite dysfunctional after my gluten challenge, and almost every organ was inflammed and not functioning properly.

I got some foods back over time with healing. I now personally avoid gluten, corn, milk, and oats.  During my gluten challenge I joined the forum here and learned how to live the celiac lifestyle properly. Our whole home went gluten-free , which my body very much needed.

So this forum helped me become aware of the fine details I initially did not know when I first went gluten-free. I did not have the right the information to do it correctly.

I don't eat out, I live in a gluten-free home, and I learned in the last few months of my new job the communial lunchroom despite my best practices was not safe enough for me . Our workplace has 3 lunch shifts and most coworkers don't understand how complex gluten cc can be. I stored my lunch isolated from others and had a placemat, but my Dr said nope lunchroom is not safe for you to avoid cc. 

Most general Celiac sites do not give you the fine details the community here does to stay safe and avoid pitfalls. 

Welcome and good luck on your journey to determine your gluten status. 

Doesn't apply to me, but I wanted to say that you are a wonderful person to help locate someone who would be considerate of your present roommate condition. Best wishes 

I am sorry to hear this challenging situation for you. My diagnosis took longer than usual same with my cousin. Similar to the posters above I share multiple intolerances etc as they say. DH, ataxia, and while my Dr was a MCAS expert I am not diagnosed as such, I get symptoms of it in addition to my DH/ataxia/malapsorbtion stuff. a cc exposure causes all kinds of havoc on me affecting my mast cells as I struggle to keep my heart rate, blood pressure, and blood sugar stable to avoid hypoglycemia afterward. This has been a struggle over the last 3-4 years as I have been managed out of one job, lost scheduled hours at another, and struggle to appear healthy enough at my current job. I have to accept the limitations of my situation. 

My cousin is celiac and I am DH, our hereditary side that this is found on has a medical history of gallbladder removal, colon cancer, and diabetes in our family members. She and then myself have expressed our concern that we seem to have family gluten issues and tend to be hard to diagnose. We always encourage our family members to tell their docs. In the end we have to respect the choices made by adults who choose not to be tested or follow the diet. 

I hope the grandchild is not a kid if so as others said you may have to respectfully intervene for a child can t make an informed decision regarding this.

So in closing it impacts a lot, my delay in diagnosis caused additional challenges /complications delivering my children, limits me in the workforce,  I am grateful to be employed, but my body and immune system are part of my everyday life that the choices and decisions I make include keeping my condition in mind. I also see and pay out of pocket for alternative dr, acupuncturist etc to manage my condition.  I have done this long before I was diagnosed as I knew something was up, but didn't know exactly what, and helped my body manage best I could.t

I am lucky as My body constantly communicated what was right and wrong and other then DH/multiple intolerances, I am subclinical on all other AI's and issues. Although I get symptoms of others from time to time. I am hopeful I can keep that one diagnosis and avoid others that are more pharmacological or serious.

in my opinion, Set the boundary in your home gluten will not be offered etc to the celiac grand kid. That will send the message that you believe and up hold the diagnosis. My opinion your son is in denial and struggling to accept this lifestyle change.

in the end the body will communicate even to the most stubborn . I firmly believe this. It is up to the person to heed this information.

best wishes to you all and Good luck

On 5/7/2019 at 10:52 PM, cyclinglady said:

My stomach/duodenum actually will be visibly larger probably due to inflammation.  If I bend forward, I can feel a pinching and often it takes my breath away.  It sounds like your celiac disease maybe flaring.  ?

Ditto and during my challenge I felt sharp stabbing pains there . My husband came in once because I yelped out in pain. He brought me a drink of ginger and warm water and got me my epsom salt bath with my meditation music. 

I took the advice of many on here as a newbie to stop eating out. It was good advice.Respectfully, the decision is yours, but it is good advice if you begin to see it is an issue.

Ditto above posters

Those deficiencies I notice are a problem for me. Vitamins D, all b's particularly b 12 for me and magnesium are an issue if gluten enters my life. 

I did attempted the 2 week challenge for endoscope and colonoscopy as I went gluten-free out of desperation for no one ever tested me and my misdiagnosis' seemed to stick for 20 plus yeard to no avail. I only got through 7 days as the mood stuff were more pronounced then in my entire life. My husband and kids felt even if I ended up not being official they were never letting me eat gluten again after that. They strongly supported an entirely gluten-free house for me after that . I was very unlike myself at that time.

If I get cc I get mood issues along with my gi, ataxia, and DH symptoms/ issues. I tell myself you know what it is ride it out, get the inflammation under control asap best you can until your body absorbs properly again. ?

I have learned to do B 12 sublingual, liquid vitamin D and also liquid magnesium after a cc, as I seem to lose the ability to absorb them from my regular capsule multi when I get a cc hit.

As a woman I can share the mood is worse if it is near my period as my bodies demands for b vitamins and magnesium are greater then.

I do hope for you things improve for you. If you got the psychologist maybe consider if you can financially keep him/ her a bit longer to sort out your emotions after diagnosis if you can. It probably would have done me some good to have had someone, but I needed sleep more than anything while healing.

Good luck 

I had to do the challenge since I had gone gluten free before. Long story and 20 plus years misdiagnosed.

At this time I don't think researchers have come up with a method other than the challenge .

Even though I was gluten-free before the challenge I lived in a gluten home and kept food separate etc. In the end my DH and ataxia especially in addition to my other symptoms require us to be a completely gluten-free household. I realize now I was doing gluten-free wrong . I also didn't know for sure so I never joined this forum .  I didn't officially join the forums here where I learned the proper and safe way to live life with this illness until I was seen by a team willing to test me for Celiac.

A challenge was not easy. As gluten-free in DC says I was diagnosed vitamin D deficient 8 years before my diagnosis. celiac /DH was not what my Drs over the years thought of . My general labs testing didn't show any autoimmune issues.  My symptoms were addressed separately and I am not even certain they looked at past records to connect the dots.

Our home is completely gluten-free, I do not eat out.  I was told by one Dr, I can not even eat in the lunchroom at work as gluten is too prevalent. The volume of people who eat in there for 3 lunch shifts generates a lot of cc potential.  I got cc 3 times in 5 months of starting the job.  ( even with my vigilance - I kept my lunch separate place used a placemat etc. ) 

So there is much to learn about the gluten-free life that as of now you may not realize. You may not even know the infinite details that we address in daily life.

Welcome and Good luck on your journey 

Edit infinite ? autocorrect inncorrect

My bread machine has a gluten free button/mode. It is a Cuisinart the gluten-free button is #5. I never owned a bread machine until I was gluten-free. The one neagative to the bread machine is the paddle leaves a hole in the bottom. In general not a big deal. 

I do still use it on occasion and does have just a knead button I think it is the pasta dough feature #9. If I just want it to knead for me to use dough for other project. I still have 2 loaf pans for the oven old fashioned baked  way. I found some recipes work better in the bread machine than others. The rice flour based versions tend to work best in the breadmaker. The almond based versions tend to be more flat/heavy from a bread maker so I oven bake more often with almond 

My family does enjoy fresh baked bread usually more in fall/winter. In general we moved away from bread in general . My husband and children eat gluten-free store bought bread or try new ones we often keep them in the freezer. I think my kids haven't brought a sandwich to school in 3 years. They do occasionally like gluten-free toast or my son has a sandwich here at home. They prefer gluten-free breads toasted . They often just bring some naked protein, veggie, and fruit to school. 

I found my immune system likes me to make my own stuff. I moved more toward almond baked goods as well like Ennis. We make our own almond milk here. I dehydrate it and use the almond meal as flour when I can. Since I went back to work I am not on top of it as much and do buy Anthony's Goods almond flour to supplement. 

I found most packaged blends had one of my intolerances xanthum gum or corn detvatives etc so I tend to buy the individual flours and do recipes from scratch. I start by looking on the internet and often tweak them to what later becomes our family version . I often play with sweet potato and cauliflower for wraps etc.

I don't regret the bread maker, but I will admit when I started out I was overwhelmed and focused on this transition/ life more. So honestly I tend to do less bread loaf more rolls or wraps for a particular meal and most meals are just without bread now.

Welcome and good luck. 

Edit: I would try to get them on sale or use some coupons. Some stores have their home sale small appliance sales going on. Any sales, coupons, or gift cards help one indulge in the appliance cost.

My 2 week challenge was for both scopes. The endoscope and colonoscopy. While on the challenge the symptoms became progressively worse. I still had my GI symptoms, but the neurological and emotional issues were even more pronounced than before since I had been eating gluten-free for 3 years previously. Although I was not living a strict gluten-free life as my home at that time was not entirely gluten-free. I am concerned I read above that this is just for your blood test panel though. 

A challenge is hard to undertake and I do hope for the days when our researchers have another method. I did the challenge for my children. Also my cousin was already a gold standard diagnosed celiac so it seemed me being diagnosed would likely deduce if it was "our" side of the family/genetics so future relatives would know. 

I initially did plan my goodbye tour to gluten I am still angry to this day that I could not have my last deep dish pizza goodbye meal. TMI- I knew I would be consuming it likely on the toilet and neurologically I had stopped driving by day 6-7 and instead walked to my local bakery to voluntarily gluten myself. I did eat fresh rolls, kolaczki, and I can't remember what else. There were many goodbye foods I just said nope can't drive there so I am just going to the bakery. Thankfully I had a popular bakery nearby.

I would say in general I already knew I had issues, but I was already damaged from cc (my sister's 50th b-day the waitress thought it would be fun to poison the high maintenance gluten-free eater) I learned a lot though. I now have a diagnosis on file, my kids know what to look for, I officially joined the forums here, and learned I was doing it wrong as too many cc events could occur they way I was eating gluten-free before diagnosis.

I now never eat out, I have problems with many gluten-free processed foods, and if I get CC well DH arrives on the scene now which ironically did not show up in my Gluten challenge. So yes the chameleon Cycling lady speaks of has a mind of its own. However the origin of gluten ticking off the immune system stays the same.

Welcome to the forum. I would either do the 12 weeks if you can (I personally could not and my Dr's knew I said I could not) if not see if you can get the Dr to do that endoscopy (and for that matter in my opinion if insurance allows do both scopes at once)

Is it worth it? Getting glutened stinks regardless in our situation if we do it to ourselves or it is done to us whether it is for diagnosis etc.

Should you find out-yes in my opinion=yes. The gluten challenge was just that challenging the recovery was even more challenging, but at this time a challenge is the only option they offer. I hope one day that changes.

Good luck.

Quote