Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

To Be Or Not To Be

DVK

By DVK
in Coping with Celiac Disease

Recommended Posts

DVK Apprentice
DVK
Posted

Well, Make long story short but its long, about 3 months ago I woke up after eating a pizza and having a few beers with Nausea, dry heaving sweats etc. Next day went in to Doc and had blood work done all my tets were good other than my lipase was slighty elevated. My doctor told me it was mild pancreatitis and to slow down on the drinking (like I was some raging alcoholoic) So I did quit drinking my few beers here and there for 2 months. then One night I woke up after eating a big italian meal and and bread and felt the same way, next day went in and my lipase was slightly elevated again.

this time there was more, I started having anxiety, Depression, Artrhitis type feelings in my body, Weird itching, dermatitis, tired, just felt like crap, Oh ya lots of Movements in the intestines, Gas sounds, like something was running in my belly and was trying to get out.

Again my doctor said pancreas problems but couldnt say about the other but here is some wellbutrin and xxanax and lets do CAT SCAN to check, so I did that and an ultra sound, and everything was fine but elevated lipase. So he sent me to a GI at my request, and during the time of all this I didnt feel good at all, THE TRIGGER WAS ON, and my doctor thought I was crazy.

So after feeling like crap for a while with no answers, I decided to look for myself I did not believe I was having Pancreas problems.

I found a site on line for the Marlyand clinic and specialty where you pay a fee and ask some questions. So I did this and the doctor said to be checked for celiac disease. Which I asked my doctor and he did and they can back within normal range.

So he said its your pancreas and to see the specialist. BOY I wasnt happy so I found this site and found that may of you tested with ENterolab. So I requested a test, I did it and the results are below. BUT before you look at these, I showed them to the GI Doctor and he said NOPE Its your pancreas, but lets watch it. TELL ME YOUR THOUGHTS!

PS I AM gluten-free FOR ONE MONTH AND FEELING BETTER BUT still have slight GI problems

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 30 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 443 Units (Normal Range <300 Units)

Fecal anti-casein (cow

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Well, obviously your doctors don't know what the heck they're talking about. Your Enterolab results clearly show that you have the celiac disease genes, are intolerant to gluten, have malabsorption due to villi damage (meaning, you have celiac disease), are intolerant to dairy and soy.

Meaning, you need to eliminate gluten, all dairy and soy for life. So, if you haven't eliminated dairy and soy yet, that would be the reason why you are still having problems. Plus, of course, it takes a while to recover.

The blood tests are very unreliable and yield many false negatives.

Join the club, many here have been treated like you have been by their doctors. It's not that the doctors are bad people, just that they are woefully ignorant.

NoGluGirl Contributor
NoGluGirl
Posted
Well, Make long story short but its long, about 3 months ago I woke up after eating a pizza and having a few beers with Nausea, dry heaving sweats etc. Next day went in to Doc and had blood work done all my tets were good other than my lipase was slighty elevated. My doctor told me it was mild pancreatitis and to slow down on the drinking (like I was some raging alcoholoic) So I did quit drinking my few beers here and there for 2 months. then One night I woke up after eating a big italian meal and and bread and felt the same way, next day went in and my lipase was slightly elevated again.

this time there was more, I started having anxiety, Depression, Artrhitis type feelings in my body, Weird itching, dermatitis, tired, just felt like crap, Oh ya lots of Movements in the intestines, Gas sounds, like something was running in my belly and was trying to get out.

Again my doctor said pancreas problems but couldnt say about the other but here is some wellbutrin and xxanax and lets do CAT SCAN to check, so I did that and an ultra sound, and everything was fine but elevated lipase. So he sent me to a GI at my request, and during the time of all this I didnt feel good at all, THE TRIGGER WAS ON, and my doctor thought I was crazy.

So after feeling like crap for a while with no answers, I decided to look for myself I did not believe I was having Pancreas problems.

I found a site on line for the Marlyand clinic and specialty where you pay a fee and ask some questions. So I did this and the doctor said to be checked for celiac disease. Which I asked my doctor and he did and they can back within normal range.

So he said its your pancreas and to see the specialist. BOY I wasnt happy so I found this site and found that may of you tested with ENterolab. So I requested a test, I did it and the results are below. BUT before you look at these, I showed them to the GI Doctor and he said NOPE Its your pancreas, but lets watch it. TELL ME YOUR THOUGHTS!

PS I AM gluten-free FOR ONE MONTH AND FEELING BETTER BUT still have slight GI problems

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 30 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 443 Units (Normal Range <300 Units)

Fecal anti-casein (cow

chrissy Collaborator
chrissy
Posted

DQ2 and DQ8 are the only known celiac genes, so far. if you feel better gluten free----be gluten free.

happygirl Collaborator
happygirl
Posted

the combination of feeling better already, plus the enterolab results and gene testing indicate very highly that gluten and other foods are causing problems for you. You may have other issues, however (I can't comment on the pancreas, etc).

You do not need a doctor's permission to start and maintain a gluten free diet!

GlutenWrangler Contributor
GlutenWrangler
Posted

While DQ2 and DQ8 are the only "known" celiac genes, DQ1 and DQ3 are now known gluten intolerant genes. 1% of the population that is diagnosed with celiac disease does NOT have DQ2 or DQ8. From what I've read, most of those 1% have DQ1. Therefore, it would be legitimate at the very least to say DQ1 a celiac gene. Since the poster has malabsorption, it is fair to say he has celiac disease because malabsorption follows villous atrophy. He would be another person that falls into the 1%.

Since celiac disease is so under-diagnosed, it is impossible to say how accurate the numbers are which imply 99% of celiacs have DQ2 and DQ8.

DVK,

You results are as clear as day. Don't give a second thought to what your doctors told you. After eliminating the problem, you should start to feel better with time. Good luck.

-Brian

jukie Rookie
jukie
Posted

Just for the sake of clarity, gene DQ3, subtype 8 (more simply known as DQ8) IS in fact one of the two recognized celiac genes. Having the gene does not mean that you have celiac, but merely a predisposition. Of course, based on your history and other test results, you are obviously reacting to gluten...not to mention dairy and soy. Hopefully eliminating all of these will help you to feel even better.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GlutenWrangler Contributor
GlutenWrangler
Posted

Yeah you're right I mixed that one up. DVK does have a main celiac gene.

jukie Rookie
jukie
Posted

Hey, Brian - I wasn't picking on you...honest! Just wanted to clarify because the genetic lingo is often confusing. :)

GlutenWrangler Contributor
GlutenWrangler
Posted

No I didn't think you were picking on me. I just noticed that you were right. For some reason I thought it said subtype 9 instead of subtype 8. You're right about it being confusing though!

DVK Apprentice
DVK
Posted
  • Author

Thanks for the reply, It is all still confusing and I think I am handleing all of this pretty good. However I am going to the University to see what they think. My Current Doctor after sending him these results blew me off, he is an internal medicine doctor and yet he said " Your problem is difficult enough that I suggest you call the University and talk to there GI department" Then he said "GOOD LUCK AND HOPE YOU START FEELING BETTER"

I have in fact accepted the results and Feeling better other than the weight loss, I know its from not eating enough cause as you all know how easy it used to be being able to stop and grab a bite to eat.

David

almostnrn Explorer
almostnrn
Posted

I have in fact accepted the results and Feeling better other than the weight loss, I know its from not eating enough cause as you all know how easy it used to be being able to stop and grab a bite to eat.

David,

Rest assured that one day you will not only feel better but that looming food cloud will be gone too. This is an amazing place with so many people that have a ton of knowledge. I think you are handling it incredibly well, I don't think I could be nearly so nice to that doctor! I'm glad you found this site it will help you a lot! Good luck and I hope you start feeling better soon!

malosp Newbie
malosp
Posted

Hi there,

I actually saw your earlier posts over on medhelp and then was surprised to see you here.

I too have a slightly elevated lipase. I believe I made have got gluten through some meds.

All my other labs were normal except the lipase at 158. normal <90 at my labs.

My symptoms....weight loss, headaches, nausea, stinging throughout my stomach area.

No fever, no jaundice, no boring pancreatic pain etc.

I am thinking I may be having a flare up of gluten intolerance after 13 years.

I am off the meds now and will be extremely careful what I eat. I really think it may be the gluten intolerance.

  • 1 month later...
ginghamkim Apprentice
ginghamkim
Posted

DVK and malosp,

Your symptoms sound alot like mine. In September 2006, I felt like I had a golf ball under my right rib cage. Went to ER, said it was gallbladder. Had ultrasound, CT scan, HIDA scan, MRCP--all were perfectly normal except my lipase and amylase were slightly elevated. Doctor thought it might be pancreas and sphincter of oddi dysfunction. He sent me to Indiana University for an ERCP (which ended up not having b/c I didn't have pancreatitis and there is a 30% chance of causing it from the procedure--sent me home with muscle relaxers). I've been gluten-free and dairy-free since Christmas (sucky time to start) and noticing improvements...some days are better than others.

It sounds like we are on the same recovery time-line...are you having problems with fat (nuts, eggs, meat in particular)? I'm afraid I might have to go vegan (don't get me wrong, I grew up on a cattle farm). I'd like to hear how you are doing in your recovery.

Thanks,

Kim

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.