Desperate for Help.

[KariB]

In late February I had a surgery in relation to trauma from childbirth. Since then I have lost 50lbs and cant eat hardly anything. My blood results showed that I tested positive for non-celiac. Im constantly having severe abdominal cramping wether or not I eat. 2x I was tested for parasites but its been negative. I can not find someone with a similar story of the rapid weight loss before being diagnosed. Im just desperate to get better and not sure if whats going on is only non-celiacs. Its been a week of no gluten. Now I am actually feeling hunger pains but anytime something off the paleo diet goes in my belly. It hurts. Im terrified how much more weight I will lose with all of my symptoms.. Is there anyone who can give me hope I guess. Maybe share a similar story of the rapid weight loss.. 

[AmberJ]

1 hour ago, KariB said:

In late February I had a surgery in relation to trauma from childbirth. Since then I have lost 50lbs and cant eat hardly anything. My blood results showed that I tested positive for non-celiac. Im constantly having severe abdominal cramping wether or not I eat. 2x I was tested for parasites but its been negative. I can not find someone with a similar story of the rapid weight loss before being diagnosed. Im just desperate to get better and not sure if whats going on is only non-celiacs. Its been a week of no gluten. Now I am actually feeling hunger pains but anytime something off the paleo diet goes in my belly. It hurts. Im terrified how much more weight I will lose with all of my symptoms.. Is there anyone who can give me hope I guess. Maybe share a similar story of the rapid weight loss.. 

I’m Celiac so it may be different...but have you had your gallbladder checked? I had issues with meat fats and any junk food when my gallbladder went bad. 

[cyclinglady]

Are you sure you were actually tested for celiac disease by medical doctor?  There is NO test for Non-celiac Gluten Intolerance at this time.  Celiac disease (blood and intestinal biopsies) is usually ruled out first before doctors will give this diagnosis.  

Please get to a Gastroenterologist.  He or she can rule out many conditions which many or may not even be celiac disease.  Since you have only been off gluten for a week, you can still get tested.  Here is more information:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Amber is correct in that gallbladder disease is one of many things that can cause rapid weight loss.  For all we know, this could be related to your surgery.  Something could have been damaged.  What does your GYN say?  Can you get a second opinion?  

[KariB]

Yes by my primary physician. I have the blood work results. Where it clearly says celiac disease - negative and non-celiac positive...  so now I’m confused more then ever. Today I went back to the DR. And ended up in the ER. So hopefully the CT scan and ultrasound gives clearer answers. They are going to be checking my gallbladder. 

 

She has referred me to a GI. Waiting on that appointment. 

4 hours ago, AmberJ said:

I’m Celiac so it may be different...but have you had your gallbladder checked? I had issues with meat fats and any junk food when my gallbladder went bad. 

What made your gallbladder go bad?

[Awol cast iron stomach]

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 

Edited July 2, 2019 by Awol cast iron stomach
Autocorrect incorrect

[cyclinglady]

That is weird that you have a lab result for non-celiac gluten intolerance/sensitivity.  Maybe if you get a negative on the celiac blood test, they suggest NCGI.  Make sure you had the full panel.  If my doctor had just ran the TTG (most commonly used celiac test), my diagnosis would have been missed.  I test positive to only the DGP IgA.  This repeats that there is no test for non-celiac gluten intolerance/sensitivity.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040028/

If you suspect gallbladder disease, you should ask for a HIDA scan.  It determines the functionality of the gallbladder.  It your gallbladder is not squeezing (emptying) you can have pain because you are not releasing digestive enzymes necessary for fat breakdown.  “French fries coming down, release the bile!”  I suspect my gallbladder went bad from undiagnosed celiac disease, but that is just a theory.  Like celiac disease it runs in my family.  It is a curse!  

I had zero percent functionality by the time I had the HIDA scan.   My GB was infected, so I had to have emergency surgery while in a business trip.  Not fun!  I never had gallstones either and nothing was picked up on CT or ultrasound.  If I did not eat, I had no pain.  I did not eat the entire day that I traveled because once I started eating, I had pain.  That sounds different from you.  

Weird question.  You did not have robotic surgery (e. Da Vinchi) did you?  

Edited July 2, 2019 by cyclinglady

[KariB]

Last night in the ER my ultrasound and CT scan only showed a few cysts on my liver and ovaries but nothing to be causing this amount of pain. They have ruled out my gallbladder. How long after your CT did they do the HIDA test? Our ER is notorious for crappy DRs. I’m supposed to be traveling this week. Hoping that I can go to the ER in San Diego and they may be more of help. Not sure if that’s wishful thinking. 

Yesterday they finally referred me to the GI specialist to get those further tests. Not sure how long it will be though. Going to show up at my DRs office today to see what can be done about speeding this up. Any advice for that? And no I have not had the da Vinci surgery. It was for my pelvic floor after trauma from babies. Yet after that surgery my body’s been severely ill. 

What symptoms were you having? Are you pain free after gallbladder removal. You didn’t have any abdominal pain until you ingested food? 

My bowel movements have been weird since surgery and there always yellow seeping down the toilet like bile.. DR only brought up that being a symptom of an STD which I’ve been cleared for. 

[KariB]

This is the my blood results. I feel like such an idiot for saying I tested positive for non celiac. Apparently I misunderstood the DR or I’m not sure what happened...

 

[KariB]

10 hours ago, Awol cast iron stomach said:

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 

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..

[Awol cast iron stomach]

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.

 

[icelandgirl]

Hi KariB and ((((hugs))))!

I just looked at your lab results and unless I'm missing something you tested positive on the.antigliadin Igg test.  To me, a positive is a positive and you should be getting referred for an endoscopy.  Your Dr did not order a full celiac panel, but it's possible you might test positive on other parts of it too.  If you want to get the full test you still need DGP IGA, DGP IGG, TTG IGG and EMA.  If you are eating paleo then an endoscopy for celiac may not be accurate as you need to be consuming gluten in order to get an accurate test.

My celiac was triggered by my 3rd pregnancy and I remember at one point my weight being in a free fall.  One thing that helped for me was sticking to foods that were very gentle on my system.  Chicken breasts cooked all day in broth in the Crock-Pot with boiled potatoes or rice.  Bananas, baked sweet potatoes, etc.  Those are still my go tos if I'm having issues.

I hope that you get this figured out quickly and start feeling better!

[cyclinglady]

3 hours ago, KariB said:

This is the my blood results. I feel like such an idiot for saying I tested positive for non celiac. Apparently I misunderstood the DR or I’m not sure what happened...

 

Hard to interpret this.  Looks like they ran the TTG test, but not sure if it was the TTG IgA or the TTG IgG and it appears that it was lumped in with the DGP IgG.  The result was 30 which is borderline and should be reviewed by a GI.  Did they run an Immunoglobulin A (IgA) test?  This one checks to see if you can make IgA antibodies.  It is used as a control test for the IgA versions of the celiac tests.  

I suppose when people are borderline, they might suggest non-celiac gluten sensitivity.  

I am commenting again that you did not receive the complete celiac panel which includes: TTG IgA, TTG IgG, EMA IgA, DGP IgA and TTG IgG.  You might have had the TTG IgA and the DGP IgG, (the screening version to save money)  and it catches most celiacs, but not all.  They might figure if you were IgA deficient, the DGP IgG tests would catch your diagnosis (kinda seems like it did).  In my case I only had one positive on the panel (DGP IgA), yet biopsies revealed intestinal damage.  Thankfully, my GI ordered the complete panel.  

I assume you are not anemic.  Your  thyroid panel shows no autoimmune thyroiditis which is commonly  linked to celiac disease.  The ER doctors seem like they have done everything right.  Often it takes a specialist (like a GI) to order more extensive tests.  The ER’s  job is to keep you alive, in my personal non-medical opinion.  

Going back to your surgery.  I asked about robotic surgery because there has been issues with surgeons causing injury  using this method.  I also had a friend who had mesh removed from her surgery that was causing her pain.  She had to have it removed.   That was a few years ago, but maybe your body is reacting to whatever they used to hold up your organs.  

https://www.mayoclinic.org/diseases-conditions/pelvic-organ-prolapse/in-depth/transvaginal-mesh-complications/art-20110300

Going back to gallbladder issues.  If you do not eat, it should not cause pain.  This is based on family history.  Everyone in my family lost weight fast  when they knew that eating caused severe pain.  It sounds like you have pain 24 hours a day.  Even celiac disease will not cause pain if you are fasting.  At least that has been my experience.  

 

[Posterboy]

On 7/1/2019 at 2:57 PM, KariB said:

In late February I had a surgery in relation to trauma from childbirth. Since then I have lost 50lbs and cant eat hardly anything. My blood results showed that I tested positive for non-celiac. Im constantly having severe abdominal cramping wether or not I eat. 2x I was tested for parasites but its been negative. I can not find someone with a similar story of the rapid weight loss before being diagnosed. Im just desperate to get better and not sure if whats going on is only non-celiacs. Its been a week of no gluten. Now I am actually feeling hunger pains but anytime something off the paleo diet goes in my belly. It hurts. Im terrified how much more weight I will lose with all of my symptoms.. Is there anyone who can give me hope I guess. Maybe share a similar story of the rapid weight loss.. 

KariB,

Check into SIBO ...it can cause rapid weight loss.

Here is a nice website and article about it (SIBO) causing unintended weight loss.

https://sibodiaries.com/2017/09/21/why-you-shouldnt-ignore-weight-loss-during-sibo-treatment/

And here is a nice currently updated on SIBO by chris kresser than explains why it (SIBO) can be  hard to treat and diagnose.

https://chriskresser.com/sibo-what-causes-it-and-why-its-so-hard-to-treat/

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

Posterboy,

[Awol cast iron stomach]

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? 

 

 

 

 

[Awol cast iron stomach]

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? 

 

 

 

 

[Awol cast iron stomach]

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. 

 

Edited July 3, 2019 by Awol cast iron stomach
Malfunctioning windows????? Yikes