Back after 5 years...Endoscopy on May 2

[edgymama]

Well I am back after continued grain issues....not just gluten but pretty much ALL grains I have found irritate me. Corn is tolerable it seems in small doses. I am one of those that has been on the warpath for answers I would say on and off for over 15 years. Blood tests have been negative. I have IBS say the doctors. Met with a functional medicine doctor at the start of this year as I decided THIS would be the year I get answers. She suspects Hashimotos but Adrenal fed as opposed to thyroid. Also mentioned I may have fatty liver.

Blood tests only showed low Vitamin D this year. I have had anemia show in the past. As soon as grains are in my diet I BLOAT, have unpredictable D issues with my IBS C/D, and heartburn. As soon as I took grains out of diet the heartburn disappears within days (I am talking I can have red wine, onions, peppers and have NO issues with heartburn-but as soon as grains are in the mix- WHAM pass me the tums!).

So I went without grains from January to start of April. Bowels were finally normal and predictable and heart burn gone. Gastro doc ordered colonoscopy and endoscopy and for me to start on the gluten train. The bloat that happened day 2 was insane and uncomfortable. My lethargy is back. Heartburn hasn't kicked in yet thankfully....stomach issues have just started to get unpredictable again. Hands feel swollen. A couple sores inside mouth.

Colonoscopy only showed one tiny polyp and diverticulosis. Still waiting on biopsy. Just wanted to post here as I bide my time....I know if it is "just a sensitivity" I will at least have had all the tests possible at this time to rule out celiac. My 23andme came back increased celiac and my raw data had celiac, crohns, colon cancer all as traits I carry.....so maybe I am being paranoid. I call it being proactive

 

[Awol cast iron stomach]

Sorry to hear all but corn are causing you issues. I have problems with gluten and corn. I hope you get some answers and clarity soon. I have had vitamin D, folate, and B12 issues in past too. In addition to multivitamin i take liquid magneiusm, liquid vitamin d and sublingual b12 if I get cc as I don't seem to adequately absorb them by capsule.

Gluten attacks many areas for me just not intestines. My stomach and esophagus visually were noted as inflamed as well on endoscope after my  gluten challenge.

Good luck

 

[Posterboy]

6 hours ago, edgymama said:

I have IBS say the doctors. Met with a functional medicine doctor at the start of this year as I decided THIS would be the year I get answers

Edgymama,

Don't do anything different before your Endoscopy so you can have a baseline.

I found this approx. 5 year old research recently about IBS that might help you entitled

"Tryptophan: ‘essential’ for the pathogenesis of irritable bowel syndrome?"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/

It takes 15 or 20 years for doctor's practices or clinicians to catch up with the latest medical research.

Then try getting foods high in tryptophan in you diet.

https://www.livestrong.com/article/247974-list-of-foods-high-in-tryptophan/

It can also be taking by supplement ...it is one of the 9 essential amino acids which means you must eat it everyday or your body can't synthesize it.  Luckily it is a component of many healthy meat proteins. ...like chicken and turkey. .. and in many healthy plant proteins like Nuts and Seeds.

Tryptophan is also important in the synthesis of Serotonin which might help take the edge off.

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

Posterboy,

 

[cyclinglady]

Hashimoto’s can be pretty easy to diagnose.  Just have any doctor run a thyroid panel and include thyroid antibodies, especially if he or she can feel  thyroid nodules or an enlargement.   I have not heard of adrenals being involved or destroyed by Thyroid antibodies....maybe another autoimmune issue like lupus?  

https://www.thyroid.org/hashimotos-thyroiditis/

https://www.verywellhealth.com/adrenal-fatigue-exhaustion-3231648

Fatty liver is another easy to run blood test.  Fatty liver can improve by avoiding excess sugar (specifically corn syrup) and/or alcohol.  

http://sugarscience.ucsf.edu/the-toxic-truth/#.XL6OHRplChA

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5893377/

Did you also get an endoscopy?  I am confused.  The title post says May 2 as your endoscopy,  yet your doctor recently did a colonoscopy?   Why not together to save prep and surgery time, etc. ?   

If negative for celiac disease, then have them rule out Crohn’s.  My niece had her Crohn’s diagnosis caught using a pill camera as the damage was out of reach of both scopes.  Just something to consider. 

 

Edited April 23, 2019 by cyclinglady

[edgymama]

11 hours ago, cyclinglady said:

Did you also get an endoscopy?  I am confused.  The title post says May 2 as your endoscopy,  yet your doctor recently did a colonoscopy?   Why not together to save prep and surgery time, etc. ?   

Nope they didn't want to put me through both at same time (there is no prep but fasting the night before for endoscopy), also they wanted me eating gluten longer before the endoscopy as I had been off it for over 3 months. So I go for the endoscopy on May 2nd  

 

The functional med doctor said traditional medicine won't diagnose until you HAVE something where functional medicine is more about preventing things they see coming on based off a thorough health history (I believe I completed like 20 pages of info!). So she was seeing signs of me heading towards Hashimoto's and that it was being fed by adrenal fatigue versus my thyroid having any current diagnoseable problems, if that makes sense....many see functional medicine as more holistic/new age type doctors as they are very much about prevention and diet based cures. She was not my full time doctor but just someone I went to a couple visits with to get other opinions about all my ailments!

 

Inflammation has definitely ramped up now and I am feeling lots of aches and weirdness in my finger tips, like the pads of my finger tips ache! So strange. If I don't end up with full on celiac diagnosis I do know my sensitivity is intense! I also have at least 4 canker sores currently.

 

Thanks all for the replies!

[edgymama]

12 hours ago, Posterboy said:

Then try getting foods high in tryptophan in you diet.

This was super interesting! I have never seen this in regards to gut issues. Thank you for sharing. Something I will be more conscious of adding to my diet!

[Posterboy]

Edgymama and Cyclinglady,

I am not sure how to say this....we tend to want diseases to stay in their lane(s)/(silos).

See this recent article on Celiac.com that explains how eating gluten free can reduce Schizophrenia Symptoms in Some Patients...typically thought of as different disease(s) and they may be or they may be only the same disease with a different presentation (face/symptom)

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/schizophrenia-mental-problems-and-celiac-disease/gluten-free-diet-reduces-schizophrenia-symptoms-in-some-patients-r4779/

and that is what they concluded ...because it didn't meet their paradigm ...

they (the researchers) noted quoting

"Elevated AGA IgG may be present in about 30% of all patients with schizophrenia."

but then dismissed the connection with schizophrenia in celiac's...

I try and think about how these diseases can have a common origin (if there is one) .. and it lead me to the genetic condition that poorly metabolizes tryptophan...occurring in apprx. 30%  of individuals.

it has been shown to be common in many disease states .. . including schizophrenia.. .including this new research this month.

https://www.nature.com/articles/s41380-019-0401-9

and see this research that links several disease type to an impaired Kynurenine pathway

https://www.sciencedirect.com/science/article/pii/S1383574217301151

And if there is a common component/linkage between Chrons and Celiac disease you would expect this link to be established in the literature....showing how poorly processed tryptophan metabolism is causing these common separately diagnosed disease to have a common origin. . .and there is that shows tryptophan via an  impaired Kynurenine pathway can cause multiple GI diseases.

Here is the research many years apart established in the medical literature. ..

the chrons' disease link/research is first then the celiac disease link/research is next.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3235239/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1941917/

Both site impaired tryptophan metabolism as a cause of disease activity in both chons' and celiac and more recently the same connection has been established for IBS (see original post and link).. thus establishing them in my mind as diseases with a common origin....

but most people's paradigm does not fit this view  ...so like the schizophrenia link to celiac disease the research is not accepted....because they don't understand there is a common cause.

so we go back to our bunker/silos/lanes ...

quoting the schizophrenia article again they say in the very next sentence...

"The antigliadin antibody is not related to the antibodies seen in celiac disease" . ..then go onto say in the very next paragraph quoting again.

"Schizophrenia patients with elevated AGA IgG show substantially lower positive schizophrenia symptoms than those who test negative no AGA IgG. They also have higher levels of kynurenine, a metabolite of the amino acid L-tryptophan."

despite reporting the link .. .they don't see the connection .. a unified theory makes more sense... and the Kynurenine pathway unites these diseases with/in a common linking/cause/ metabolic pathway.

Sorry I rambled...I do that some times ... and why  I have been reducing my time on the forum (among other things for more time with/for family, farm and faith activities) ...so less time for forum things....

just when I see people still suffering...my heart goes out to them...I get that from my momma's genes.

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

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[cyclinglady]

I sincerely hope you find answers!  Keep us posted.  

 

[edgymama]

Thanks...well colonoscopy came back normal so that is good. Frustrated though as was kind of hoping for answers even from that even though I know typically they won't find celiac from that.

Fingertips are still numbish...almost bruised feeling. Stomach is starting to play up more. My gluten/sugar cravings are insane. Skin is breaking out because of the increase in junk! Feet started aching the past couple of days. Noisy stomach continues. Heartburn is back.

One more week until I can get back off the gluten!!!

[cyclinglady]

Sometimes, they can reach the end of your small intestine to confirm a celiac disease diagnosis.  Glad your colon is healthy.    Hang in there!  

 

[edgymama]

Yeah I am really trying to come to terms with if they find nothing wrong....I know I feel better without gluten and most grains in my diet! I know sensitivity is a real thing but it just seems like it would be something more with all the symptoms I endure. Frustrating.

[notme]

I just recently went through these questions with my daughter - we have suspected celiac for her for awhile.  she went and got tested:  all negative.  I told her if her guts felt better off the gluten, she really doesn't need a dx to follow the gluten-free diet.  she did, mostly, then she would cheat.   throughout this whole period, she was fatigued, had headaches, picked up every bug that came around, got 'mystery' rashes.  but she continued to eat gluten.  finally, she got 'thrush' - that started in her intestines and worked it's way up her esophagus into her mouth.  this only occurs in adults if the person has type 1 diabetes, aids, or a compromised immune system.  she finally threw in the towel on gluten and has been strict with her diet.  fast forward 4 months she is feeling great.  no freaky illnesses and no rash.  her energy has returned and she hasn't been sick even though her boyfriend and roommates have all had a virus!  she was diagnosed with r.a. at the age of 11 or 12, and our son has type 1 diabetes, all part of the lovely autoimmune gene (sorry kids, I didn't know!)  

I hope you find definitive answers.   I also hope you don't waste your quality of life bc some test comes back negative, which seems to be very common.  a lady friend from my church just passed away yesterday morning.  she told me years ago that her doctor told her she should not be eating gluten.  she didn't research it and dropped potatoes and rice from her diet <not gluten!)  she continued to get worse and doctor after doctor diagnosed her with something different.  one of them retested her for celiac and told her she didn't have it.   she was in and out of the hospital and she was miserable and unable to leave her house otherwise.  when she passed, she was 65 lbs.  she basically starved to death.   i'm sorry to tell such a sad tale!  but, this is a sneaky chameleon of a disease....

good luck Thursday!  I have a g.i. appointment Thursday also - we'll see what we can disagree on this time lolz  

[Posterboy]

edgymama and notme,

I couldn't get it to quote properly so I have quoted it below.

"finally, she got 'thrush' - that started in her intestines and worked it's way up her esophagus into her mouth."

I meant to post this earlier but I got busy with other things and my first reply was getting a little too long.

Try taking some Lysine (an essential amino acid) for your mouth Ulcers Edgymama....I have done this several times.

And it always seems to work for me.

Here is the research on it.

https://www.researchgate.net/publication/267202860_Clinical_success_of_lysine_in_association_with_serumal_and_salivary_presence_of_HSV-1_in_patients_with_recurrent_aphthous_ulceration

this (low Lysine) happens alot when your stomach acid get's low.

Here is a nice overview of it from a functional medicine doctor perspective.

http://healthbeatnews.com/whats-burning-you/

and why I don't get mouth ulcers much any more . ..when I do...Lysine helps' get rid of them.

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

Posterboy,

[edgymama]

22 hours ago, notme! said:

good luck Thursday!  I have a g.i. appointment Thursday also - we'll see what we can disagree on this time lolz  

Ha! I am hoping mine have the courtesy to follow up with me if all comes back negative! Doctors don't seem to realize that just because tests come back negative that you may still have so many unanswered questions! Glad your daughter started listening to her body~I hope to do the same!

19 hours ago, Posterboy said:

Try taking some Lysine (an essential amino acid) for your mouth Ulcers Edgymama....I have done this several times.

How silly I am, I have totally taken lysine in the past and keep it in cupboard if I feel an external cold sore coming on! Never thought to take it for ones inside my mouth!

[notme]

posterboy:.

she got that disgusting yellow kill-all medicine when she had the thrush.  it is long gone, and I do not expect it to return now that she is eating gluten free.  her immune system should be up and running like a champ!

when you have celiac disease, your whole body is at risk of catching everything or developing some weird a$$ disease because you're flying around in the uss enterprise with your shields down, basically.  

think of it as:  your body has a diesel motor that you're putting gasoline into and expecting it to run.  well, it can, very badly and not for long!  when you adhere to the gluten free diet, your motor will run properly and your immune system will come back online.  trust me, I went undiagnosed for 25 years, saw every doctor imaginable and endured every WRONG diagnosis you can think of.  no pills worked, no treatment corrected anything.

if you have celiac and eat a healthy, balanced, gluten free diet you should need less supplements as you heal.  like magic.  but not.  lolz 

 

[edgymama]

Well got the scope done this morning. Everything looked structurally normal per the doctor. Have the sinking feeling I am going to end up in the no answers club where the doc just says “oh it’s just a sensitivity”. I don’t know why that frustrates me-but it does. It makes me feel neurotic and that people think I am lying ya know?! 

I know the numbness in my fingertips, fatigue, bloat, gas, and out of control hunger that has come along with this gluten challenge are very real symptoms to me!

My throat is sore and the nurse who did my IV sucked....but other than that I was in and out of there in under 2 hours total from prep to release!

[cyclinglady]

My GI told me everything looked normal.  I had to wait for the biopsies.  My new GI has the latest and greatest scope.  He could see and photograph my villi!  Wow!  I got a set of pictures on a repeat endoscopy five years after my diagnostic endoscopy.  Of course the pathologist’s report also collaborated my GI’s findings.  

[notme]

18 hours ago, edgymama said:

Well got the scope done this morning. Everything looked structurally normal per the doctor. Have the sinking feeling I am going to end up in the no answers club where the doc just says “oh it’s just a sensitivity”. I don’t know why that frustrates me-but it does. It makes me feel neurotic and that people think I am lying ya know?! 

lolz - same!  the ultrasound didn't even show the cyst on my kidney that the ct guy said I had.  lolz, they take my blood and tell me horror stories.  then, nothing is wrong.  oh, news flash - I have celiac.  nothing is 'normal' - but everything is normal?  blah.  I feel great.  my poor husband - they have had me dead and buried so many times.  he buys me kitchen appliances when he's trying to cheer me up.  I am out of cabinet space!  hahahaha  ? 

[cyclinglady]

On 4/29/2019 at 12:34 PM, notme! said:

I just recently went through these questions with my daughter - we have suspected celiac for her for awhile.  she went and got tested:  all negative.  I told her if her guts felt better off the gluten, she really doesn't need a dx to follow the gluten-free diet.  she did, mostly, then she would cheat.   throughout this whole period, she was fatigued, had headaches, picked up every bug that came around, got 'mystery' rashes.  but she continued to eat gluten.  finally, she got 'thrush' - that started in her intestines and worked it's way up her esophagus into her mouth.  this only occurs in adults if the person has type 1 diabetes, aids, or a compromised immune system.  she finally threw in the towel on gluten and has been strict with her diet.  fast forward 4 months she is feeling great.  no freaky illnesses and no rash.  her energy has returned and she hasn't been sick even though her boyfriend and roommates have all had a virus!  she was diagnosed with r.a. at the age of 11 or 12, and our son has type 1 diabetes, all part of the lovely autoimmune gene (sorry kids, I didn't know!)  

I hope you find definitive answers.   I also hope you don't waste your quality of life bc some test comes back negative, which seems to be very common.  a lady friend from my church just passed away yesterday morning.  she told me years ago that her doctor told her she should not be eating gluten.  she didn't research it and dropped potatoes and rice from her diet <not gluten!)  she continued to get worse and doctor after doctor diagnosed her with something different.  one of them retested her for celiac and told her she didn't have it.   she was in and out of the hospital and she was miserable and unable to leave her house otherwise.  when she passed, she was 65 lbs.  she basically starved to death.   i'm sorry to tell such a sad tale!  but, this is a sneaky chameleon of a disease....

good luck Thursday!  I have a g.i. appointment Thursday also - we'll see what we can disagree on this time lolz  

I am glad the gluten-free diet worked for your daughter.   Researchers are now checking out the Autoimmune Paleo Diet that many on the internet have claimed to help various autoimmune disorders.  It is grain free (and that includes gluten free).   Scripps in San Diego did a tiny study on IBD patients who achieved a 78% remission rate based on biomarkers (Crohn’s and Ulcerative Colitis patients did not alter their meds).  Now they are testing Hashimotos patients.  Food can heal.  

My own kid feels better on a gluten free diet. Probably eats less processed food/junk.   Celiac disease was again ruled out recently, so she is free to eat gluten free or gluten light if it makes her feel better.  

[GFinDC]

Your gluten challenge period should be 12 weeks for blood tests and 2 weeks for the endoscopy.  The intestinal damage often can't be seen without a microscope.  So they usually send the biopsy samples to a lab for that review.

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

[edgymama]

Today marks one week since the endoscopy. I am having hard time getting all the junk back out of my diet after my 6 week binge I had (EEK). I know I will feel so much better once I am a few weeks into my gluten and grain free and overall healthier diet again though that is for sure!

Still no call with results and I keep checking my online health portal in case something magically appears there. I had gotten my colonoscopy results back in under a week....maybe this takes longer though? No clue. Just wanted to update as I know I got annoyed when I would be following people's testing here and they never came back to report results and such haha!

[cyclinglady]

Maybe you should call.  Some doctors get behind on paperwork and that can delay postings to portals (all depends on your healthcare practice).  Some doctors actually forget to call you.  That is what happened to me.  After two weeks (I went gluten free after my scope because it was obvious that I had a gluten problem after binding on gluten while waiting to be scoped), I called the office.   Later that night,  my GI called and apologized.  He gave me my diagnosis.  So, follow-up.  Make sure you eventually get copies of all your lab results etc.  Maintaining your own medical records is invaluable!  

[edgymama]

Annnddd negative. Sigh. All they found was acid reflux...which goes away for me as soon as I eliminate grains. I guess I am just one of those with a sensitive gut and a hypochondriac mind.

[Posterboy]

On 5/9/2019 at 3:10 PM, edgymama said:

Annnddd negative. Sigh. All they found was acid reflux...which goes away for me as soon as I eliminate grains. I guess I am just one of those with a sensitive gut and a hypochondriac mind.

Edgymama,

I think you need to have your stomach acid checked.

many of the symptom's of GERD/heartburn are mistakenly caused by low stomach acid instead of high stomach acid.

if taking betaineHCL with meals helps your symptom's of acid reflux you have found your cause....for your acid reflux.

always take it (BetaineHCL) with a couple glasses of water...and always with a meal.

see this article from doctor jockers

https://drjockers.com/symptoms-low-stomach-acid/

I wrote a blog post about it but nobody seemed to get it.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

when you assume it is high when you it really is too low you get stuck in a vicious cycle

Howard Hughes Medical Institute figured this out 15+ years ago but nobody believed them because that would of required people/doctor's to stop taking proscribing PPI's.

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

newer research confirms low stomach acid can trigger our body to go into an auto-immune state.

https://www.sciencedaily.com/releases/2018/04/180425093745.htm

actually taking baking soda can trigger our body out of an auto-immune state to an antiflammatory state.

as with anything it is not good to over do anything ...but baking soda is a nice home test to see if you stomach acid is too low to begin with.

Here is a nice livestrong article about how to home test and "official" doctor's test that can be done to test this theory.

https://www.livestrong.com/article/493568-how-to-test-for-low-hcl-acid-in-the-stomach/

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

Posterboy,

[edgymama]

17 hours ago, Posterboy said:

newer research confirms low stomach acid can trigger our body to go into an auto-immune state.

Whoa that is really interesting! I will have to do that at home test and see what happens...thanks for sharing!