Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
soberose1

My Intro~ Can You Relate? Am I In The Right Place?

Rate this topic

Recommended Posts

My first post

Let me give you all some history. I will TRY to keep it simple, which seems impossible.

I had my gallbladder removed emergency style in 05. They didn't do something right and discharged me while I was still in pain. I went back to the ER 3 days later for them to say whoops we did not clean the sludge out of your bile ducts. fast forward to may 08. I doubled over in pain in my upper right ab. ER said the area around where my gallbladder USED to be was inflamed, then gave me a choice. Stay for an ERCP or see if it goes away on its own. I choose to go and left with a list of foods to avoid. GI #1 did a ton of tests, I eventually had the ercp and was told I had a biliary stricture, along with a sphinterectomy which is a treatment for sphincter of oddi dysfunction. After the ERCP I started having new symptoms and only a lessing of the original. 3 different trial meds for IBS, still no better. GI # 2 said the next step was to stint the pancreatic duct...Well I got pancratitis and was inpaitent 5 days. Gi #2 sent me to the university and the next couple months are a blur of test after test after test. I was sooo sick my Mom moved in to care for my kids. I did have the colon biopsy for celiac disease but it came back negative. I had an EUS to look at the pancreas and was told that I have 2 signs of chronic Pancreatitis, but it should NOT be causing my symptoms. (My father also has chronic pancreatitis, it can run in families) It was clear they had no clue what to do, recommended I continue the enzymes, reglan, and go to a shrink... HA! ( any thoughts how one can psyche themselves into having chronic diarrhea??)

I found a functional medical doc and did the nutrional testing. Doc said it was the worst he has ever seen. No matter what they said at the university~ clearly my pancreas was not working right. HE specifically asked about celiac, but we poo pooed that due to the negative test results.

I went back to the university last month and they wanted to do an EGD with another biopsy for wheat, along with a list of other tests (but none looked at the pancreas again) My mom found the entrolab and IT took some time for her to convince me, sending me artilces about negative test when your not eating gluten...I had been on a liquid diet for at least 6wks when they took the biopsy, bananas b4 that. We decided there was not much harm in putting off the tests and looking into Gluten whatever..(I had 17 procedures inside 8 months last year, I am a little burnt out, and broke). So the results came back~

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

Fecal Anti-gliadin IgA: 18 Units

Fecal Anti-tissue Transglutaminase IgA: 11 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 9 Units

HLA-DQB1 Molecular analysis, Allele 1: 0201

HLA-DQB1 Molecular analysis, Allele 2: 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

I cant make any sense of this other than the paragraphs at the bottom telling me to go gluten-free.. I know IT will be a while B4 I know if removing gluten is my fix, I truly hope it is.. better than nothing.. I have read that the pancreas can be damaged in celiac disease?? I am 30, pretty sure i should not have any damage on my pan.. Anyone else have these correlations? Am I grasping at straws here? Now that I have been reading up on celiac disease, I will say I have itchy bumps on my elbows..for as long as i can remember. They are not red, just raised and itchy. My life, for almost 2 years now, has pretty much consisted of nausea, diarrhea, upper ab pain, and bloating. I have lost a total of 130 pounds. ITs a roller coaster, somedays I just need to lay in bed and I always go back to a liquid diet when I 'flare', just like they told me to do...even thou I should not be experiencing these symptoms, HA!

This is day three of gluten-free, yesterday I had a normal BM ( and yes I was on the phone calling friends to share the good news). But today it was back to diarrhea. Pain is the same, nausea is WAY bad, worse than normal. I even threw up today, which does not happen to often. So I am depressed, confused, and really don't know what to think anymore. Thanks in advance for any comments

~C

Share this post


Link to post
Share on other sites

Hi, you have the main celiac gene DQ2, the DQ2,5 type (the 5 comes from the alpha chain 0501 that almost always comes with the 0201 beta chain, ; enterolab does not test for alpha chains)

and the gluten sensitive DQ6 gene, which is part of the gltuen sensitive DQ1 gene (DQ1 is the old name and was later split into DQ5 and 6)

And, to add, pancreatitis is not an unusual prensentation of celiac.

Some celiacs get pancreatitis every time they get accidentally glutened while on an otherwise strict gluten free diet.

The antigliadin was high and the cows milk antibody was very high close to positive (we have seen that a lot here)

Yes, ordinary celaic tests will be negative if you were not eating a lot of gluten , and you obviously were not.

Was the Enterolab test also totally off gluten?

I assume your biopsy was from teh small intestine, not the colon....and it will be negative iff off gluten. Doesn't take a long time off gluten either to be negative.

Share this post


Link to post
Share on other sites

Hi, you have the main celiac gene DQ2, the DQ2,5 type (the 5 comes from the alpha chain 0501 that almost always comes with the 0201 beta chain, ; enterolab does not test for alpha chains)

and the gluten sensitive DQ6 gene, which is part of the gltuen sensitive DQ1 gene (DQ1 is the old name and was later split into DQ5 and 6)

And, to add, pancreatitis is not an unusual prensentation of celiac.

Some celiacs get pancreatitis every time they get accidentally glutened while on an otherwise strict gluten free diet.

The antigliadin was high and the cows milk antibody was very high close to positive (we have seen that a lot here)

Yes, ordinary celaic tests will be negative if you were not eating a lot of gluten , and you obviously were not.

Was the Enterolab test also totally off gluten?

I assume your biopsy was from teh small intestine, not the colon....and it will be negative iff off gluten. Doesn't take a long time off gluten either to be negative.

Thanks for your reply :0) I really appreciate your explanation! I hope someday It will make sense, right now I am in this I will believe it when I see it mood.. Dont think I could handle one of those emtional crashes I get when a flare comes... The biopsy was done during a colonospy, off the top of my head I have noidea where they took it from..

I was eating gluten at the time of the entrolab test, today is day 4 gluten free. A total change from vegan, try not to eat FAT diet. HA.. I guess this means I can have choclate again, ha! hopeful thinking. I am very happy to say I have the BEST mom in the world.. She has 2 friends who are gluten-free and she is on her way with a care package and is going to help me clean out the cuboards/pantry today. Stinks that I JUST stocked up too...upon first look, I walked away in frustration as EVERYTHING in my house has gluten of some form...

Share this post


Link to post
Share on other sites

So good your mom has gluten-free friends!

The gene test and the antibody test from Enterolab, and your history and symptoms mean you should totally stay awasy from gluten.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,544
    • Most Online
      4,125

    Newest Member
    AlyssaAnn22
    Joined
  • Forum Statistics

    • Total Topics
      111,815
    • Total Posts
      955,908
  • Who's Online (See full list)

  • Forum Discussions

    Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? 😉
    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
  • Blog Entries

  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
×