New - Hello - Just looking to get some input.

[treehiker]

New to the group.  Just looking to get some input on my condition. This might be a bit long, but wanted to include history. 
I'm 38 year old hubby and father of 4 amazing children.  I've lived 38 years on this earth happy, healthy and active with hardly ever visiting a doctor.  

That all changed in June 2019 this year.  

Starting may 30th, 2019, I had a suspicious mole removed via punch biopsy plus a few stitches.  I was taking ibuprofen for the stitches that weekend.  Additionally I was totally stressed out about the mole being cancerous.  I stressed the entire weekend. I had been taking ibuprofen for the stitches and had a reception that saturday and bbq on sunday.  I had a couple beers each day to take the edge off. By Sunday evening (June 2nd), as i lay in bed, my stomach started gurgling and rumbling something fierce, which made it difficult to sleep.  By morning I had multiple trips to the bathroom with diarrhea. 

With what felt like a stomach bug, i went to the docs again.  while there, he let me know that my mole biopsy was benign.  While this was good news, i was fighting my abdominal discomfort.  Doc said it sounded like i had a stomach bug and gave me a stool sample kit. Completed kit and returned it.  
culture was negative for any pathogens.  Doc scheduled me for a CT scan of abdomen and took full labs. 
CT Scan was unremarkable.  All labs were normal. 
Doc referred me to a Gastroenterologist for colonoscopy and endoscopy which I had on June 24th. 
Throughout this time, my abdomen hurt and I had very loose stools every day.  I ended up eating very bland diet of rice, bananas, bread, crackers and water trying to heal.

I had the colonoscopy and endoscopy which i learned that I had mild gastritis, mild duodenitis and some minor lower GI inflammation.  
There were biopsies taken during upper and lower scopes which were sent to lab.  The biopsies were to check for parasites, pathogens, bacteria (hpylori), and chronic inflammation (crohns, colitis, celiac).  All came back negative.  Additionally, my villi in small intestine were noted to be unremarkable. 
GI doc gave me carafate to help with the coating of stomach so i could eat.  
Since everything was negative in biopsies, it was suspected that my stress, beers and ibuprofen could have caused my GI inflammation. 
Just to be safe, my GI doc ordered a MRI Enterography to get detailed images of my digestive system.  That was completed and unremarkable.  All looked good. 

A couple days following colonoscopy/EGD I became very dehydrated and my mouth and eyes became very dry.  
I was drinking my usual amount of water i would normally drink.  I upped my intake of water considerably for a few days and found that my eyes were tearing and mouth had saliva again, but not at my normal levels. Additionally, i found i had difficulty sweating in heat, which lasted about a week or so.
I had been drinking SOOO MUCH WATER, that i was urinating clear literally every 20 minutes.  
I was even getting up at night to urinate, which i never did prior.  Even with all of the water, i still wasnt sweating. 

By accident one day, i was making Cup-O-Noodles and found that after i ate that, I was sweating again.  I figured it was a salt absorbing issue.  
I build gatorade and consumed quite a bit and found it was hydrating me enough to sweat. 

Meanwhile, i had multiple doc appointments trying to understand my issue with dry eyes/mouth and inability to sweat.  I had a number of blood labs, including autoimmune and inflammatory marker tests and everything was coming back normal.  
The doc visits and lab tests continued. All remaining normal.  

By mid-July, the gastritis I had been fighting with had finally healed to a point where I could eat more food again without getting digestive pain.
I had lost 33 lbs from June 2nd to mid-July from inability to eat as i used to due to gastritis pain.  

I continued Dr. appointments still looking for cause to dry eyes and mouth.  After a couple different family docs, getting told i had anxiety and i was a hypochondriac, I was finally getting referred to an ENT.  
The ENT appointment was to check my dry eyes and mouth.  There was a suspicion that i could have developed an autoammune disease called Sjogrens.
I had multiple labs testing for autoimmune issues (Rheum Factor, CRP, SED, SSA/SSB la/ro, lupus, etc. x3 or x4 for a few of them) and all were negative each time.
The ENT told me he didnt think i had an autoimmune disease and ALSO told me that he thinks i have anxiety and this is causing me stress.  He offered to perform a lip biopsy to "ease my mind" since the biopsy of minor salivary glands is considered the "gold standard" for diagnosing Sjogrens syndrome.
I had lip biopsy and it came back with mild inflammation with no identifiable cause.  Inconclusive.......
ENT said he was surprised that it came back inflamed, but still felt i didnt have any autoimmune issues since they didnt identify antibodies during biopsy, but offered to give me a referral to a rheumatologist for further workup.  

The rheumatologist declined my referral stating I didnt have sufficient lab/biopsy results indicating i had an auto-immune disease.  The ENT said they could do no more and told me to go back to my primary care provider for continued workup.  This was beyond frustrating.  

Fast forward to about August 18th:  All summer when i was feeling well, my family and I were always outside doing fun things.  We even have season passes to local amusement park.  We fished, hiked, and even on August 17th, we were at the park all day for a family reunion then we camped out on our back yard that night roasting marshmallows and hot dogs. 
August 18th we went to the local amusement park all day and had fun.  I realized i had been feeling unwell with weird body aches, lethargy and tiredness.  
We got some food where i had two beers and we shared a pretzel and beer-batter fries.  We had this before and it was good. 
We rode a few more rides and by the time i got home, I realized my face, hands and arms were burning hot.  Basically anywhere i had sunlight hit me was really hot.
This surprised me since I had already been in the sun this summer and I will usually only burn once, then tan the rest no matter how much sun I get. 
This was different.  It took a few days for the burning on my face, hands, arms and even the back of my head to go away.  

I found since this point on, i now have a reaction to the sun.  When in direct sunlight now, i get weird subtle prickling/tingle sensation that can happen in any part of my body.  Typically my thighs, arms, toes, hands, etc. Additionally, if i remain in the sun for too long, i start feeling lethargic and nauseated.  I'll also get a tickle in my throat and my tongue will slightly swell.  

Again, i visit more doctors, including a dermatologist and all tests are normal including more autoimmune and full blood panel tests.  

Since the sun sensitivity started, my skin has completely changed. I used to be an oily and sweaty guy.  Now it takes a lot for me to work up a sweat.  All of my skin has dried out and my skin is super sensitive to the heat.  There are times where it will just get hot and feel like its burning, on my face, ears, legs, arms or all over.  Feels like a hot flash without sweating. Totally uncomfortable feeling. 
Additionally, i occasionally get what feels like warm/burning palms and bottom of my feet.  Sometime tingles like when you sleep on your arm and cut off circulation.  

Fast forward to last week, Sept 26th, 2019, i finally had a followup with the gastroenterologist that performed my colonoscopy and EGD.  
I filled him in on how i was completely normal before June, then all the things that have transpired with my health since.  
He seemed eager to help.  He ordered some new blood labs, a HIDA scan and a pill camera.  He also gave me a prescription for nortryptaline, which i have yet to take since i cannot recall specifically why he prescribed it.  I was too excited that i had a doc that would listen to me which gave me new hope.  

Here were the notes he took during the follow up and reviewing my scope notes and other records from the past few months:

“Xxxxx xxxxxx is a 38 yo M is here for follow-up of diarrhea symptoms, these began in May, 2019. He underwent upper and lower endoscopy, on the upper GI biopsies, the duodenal biopsies showed areas of recent mucosal hemorrhage with no obvious changes to suggest celiac disease. Gastric biopsies showed no evidence of H. pylori, in the colonoscopy there was noted mild erythema in the ileum, however his ileal biopsies showed normal ileal mucosa, his colon was normal with normal colon biopsies. He had an MRI enterography, this showed normal visualized small bowel with no enhancement or thickening to suggest inflammatory bowel disease, there was no distention of the distal jejunum and proximal ileum exam was limited in this area, his liver had 3 small benign-appearing liver cysts, as pancreas was normal, biliary tree was normal, previous CT scans, 1 was stone protocol, no evidence of stones, the other was a IV contrasted CT scan, again were noted the small cystic liver lesions too small to characterize on the CT scan, normal pancreas, normal solid organs otherwise. He is seen in ENT and had a lip biopsy recently, he was started on pilocarpine for dry mouth and had a minor salivary lip biopsy, biopsy showed mild chronic inflammation. He tried stopping all of his medications in the last couple of weeks and has had no improvement in symptoms. He has lost about 30 pounds or so in the last 3 months. His appetite fluctuates. The diarrhea comes and goes, no significant abdominal pain or cramping associated with the diarrhea. Over the last couple days he has had some right upper quadrant abdominal pain. Pain in the right upper quadrant and the worse with eating different foods. He endorses photosensitivity. He is seen by dermatology yesterday who removed some moles otherwise didn't get much guidance. This tried alternating his diet, avoiding dairy, he has cut out some gluten, he is going on a bland diet still with no improvement in symptoms.”

After this latest visit, my blood labs all came back normal except for one, which brings me here.  
Part of my labs included antibody testing.  Here are the results:

IgA Quantitative Serum: 360 (normal 74-429)
IgE Quantitative Serum: 38 (Normal: <100)
IgG, Serum: 1294 (normal 700-1600)
Deamidated Gliadin Peptide Ab IgG: 2 (normal 0-19)
Deamidated Gliadin Peptide Ab IgA: 21 (normal 0-19)

My GI doc's office called a few days later with the results stating all of my labs were normal except for DGP-IgA was barely above normal.  It was relayed to me that he wanted me to go on a gluten-free diet for 3 weeks, then call the office back reporting how i feel.  I asked questions but the nurse that I was talking to had no real answers other than "he didnt seem to concerned about this result"

I did some research and was surprised to learn this could have something to do with Celiacs disease or gluten intolerance.  

I emailed my Doctors office asking more questions, but havent had a response.  I'm trying to interpret what it all means with my labs with only DGP-IgA a "weak positive", negative DGP-IgG, and negative biopsy.  

I am suspecting post-gastritis/gastroenteritis gluten intolerance since i just had gastritis, which was pretty rough, now all of this.  

There is a case here that suggests you can have antigliadin antibodies and only have gluten sensitivity (may be transient or permanent) vs full celiac:
"Non-coeliac gluten sensitivity is an entity separate from coeliac disease with a much higher prevalence (9, 10). The autoantibodies like anti-EMA and/or anti-tTG tests are negative although antigliadin antibodies may be present (11)."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4285934/

As it is now, I am on day 3 of a gluten free diet.  I have to say that after 38 years of eating virtually whatever I wanted, I do not enjoy this.
I would love nothing more than to be able to "heal my gut" and go back to normal.  I have had normal bowel movements for the past few weeks, and i have no abdominal pain, discomfort or bloating and I havent since i had gastritis.  That is why this suspicion of possible gluten intolerance is surprising to me.  But it appears NCGI and Celiac can have non-digestive symptoms.  I want to sweat again.  I want my skin to go back to oily and normal.  i want to be able to go into the sun again with my family and not have any stupid sun reaction.  
I know that it could be celiac, but i am holding hope it is something more transient and i can move on with my life.  I know some like to be contrarians, or "realistic" or like to rain on parades, but i'm holding that hope.  With all these symptoms just starting a few months ago, this is all so much so fast within my body and i'm tired feeling so junky. 
Time will tell.  Hopefully i'll know for sure soon. 

If you're still reading this, thank you!  I am interested in input.  My suspicion is that I would need more testing.  Additionally, i suspect that I should have been tested further before going on gluten-free diet based on all that i've read.  
Regardless, i hope my symptoms all go away and i can go back to my healthy, active self as i had been BEFORE June 2019.  

Thanks for reading!
 

 

[GFinDC]

Hi,

It only takes one positive immune response to cause damage.  The DGP IgA being positive is a real good indicator of possible celiac disease.  The other test they do is an endoscopy to check for damage to the villi lining of the small intestine.  But you need to be eating gluten for 2 weeks before the endoscopy.

Celiac disease can be hard to diagnose.  Many people are not diagnosed for years until symptoms become very bad or antibodies rise to an obvious level.  And they find a doctor willing to test them for celiac disease.

Since celiac can affect the entire body symptoms can vary widely.  Yours and mine may be completely different symptoms yet we can still have celiac disease.

It does take some time to adjust to the gluten-free diet.  But it is time well spent if it means a healthier body for the rest of your life.

There is a gene factor involved also.  So your relatives may have the genes and have a higher than average chance of developing celiac disease.

[cyclinglady]

Wow!  You have had a lot done.  

You might have celiac disease.  Perhaps it was just starting when you had your endoscopy.  Perhaps the GI missed the damaged areas as celiac disease can be patchy.  You should find out how many intestinal biopsies were taken. 

At least your GI was willing to work with you.  I  had a positive DGP IgA and I have  celiac disease.  I have never had positives on any of the other celiac blood tests even when given many times.  My intestinal biopsies did reveal some pretty severe damage.  I also had severe anemia and Hashimoto’s thyroiditis at the time of my diagnosis which are commonly linked to celiac disease.  The DGP IgG, I think is linked more to gluten sensitivity, if I recall.  But maybe a gluten intolerance was induced by Gastritis from the ibuprofen.  

I suppose the GI will measure the  DGP IgA  again but I am not sure three weeks is possible to see a change.  Antibodies can remain elevated for a long time.  Consider genetic testing.  

But if you feel better on the diet, you may have your answer.  

 

 

[treehiker]

Thanks cyclinglady and GFinDC.

Its hard to say without further testing it seems.

Part of me wants to be realistic, but another part of me hopes it’s not and I look for any information out there that might support my hope that it could be just a sensitivity, which in all best cases, will disappear someday.  

Information such as this gives me hope:

“Detection of antibodies to gliadin, one of the major protein components of gluten, is a sensitive assay useful in diagnosing celiac disease. However, gliadin antibodies may be found in individuals without celiac disease; thus, gliadin antibody assays are less specific than assays measuring antibodies to endomysium and transglutaminase.”

http://www.clevelandheartlab.com/tests/celiac-disease-diagnostics-panel/

All I know is I just need more testing.  Seems silly to me to put me on a gluten-free diet when further tests could just be run to determine definitively. 

Ill update as I learn more.  

Thanks!

[GFinDC]

Hi treehiker,

It's fine to get more testing done.  Just be sure to stay on a gluten containing diet until all testing is done.  All celiac testing depends on you having gluten in your diet for accurate results.

At the end of all the celiac testing, you may not have a definitive answer.  In that case it is a good idea to try the gluten-free diet for 6 months and see how you feel.   Our bodies are a pretty good test by themselves.

[cyclinglady]

So he ordered a pill camera and then told you to go gluten free before the test?  That does not make sense.  Three weeks on a gluten free diet can cause healing to occur especially, (you would think) if damage to begin with, is slight. You need to be on a full gluten diet for all celiac testing (even the pill camera).  I do not think you should rule out celiac disease yet.  I would not waste my money.  (You must have some good insurance!)

If the camera does not catch something like Crohn’s, you might still end up in diagnostic limboland.  Please research more.  Nice that he ordered a HIDA to check your gallbladder. I had mine removed long before my diagnosis.  It was a non-functioning.  It is also commonly linked to celiac disease.  

I guess he thinks you are depressed (prescription he gave you).  Please read up on this drug.  Lots of new data about the side effects.    While some people with depression do well on medications and they need them to function, I think a firm diagnosis from psychiatrist would expect be best or at least do behavioral changes to help reduce your anxiety first instead if going for drugs first.    (My own non-medical opinion).   Many celiacs can be depressed or have anxiety.  Is is one of the many systemic symptoms of celiac disease and other illnesses.  Once the root cause is healed, it often resolves.  Find the root cause!  So many of us were labeled as hypochondriacs when we actually had an autoimmune disease!  Do not be led down that path.  

Look what happened when you took ibuprofen.  Maybe the Gastritis.  Not many people know how damaging this drug can be (it can damage intestinal villi).    It can also be beneficial too.  

Research.  My best advice.