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

Possible Celiac?


Fenrir

Recommended Posts

Fenrir Community Regular

Glad you are now ready to start your new gluten free life.  I am so glad you got a definitive diagnosis and so soon after the scope!

 

Dee

 

 

Wow, those were quick test results!

 

So, time to learn how to eat gluten-free then.  There is a whole new world of whole foods and gluten-free alternatives to explore.  It can be kind of fun to try out new foods that you may not have considered in the past.  Welcome to the 1% club Fenrir! :)

 Yeah, it wasn't even 24hrs before the results were back. That's about as fast as it gets. 

 

Not to mention instead of taking years to figure out it "only" took about 4 months. 

 

The GI group I go to has a PA that is a specialist in Celiac so I have an appointment with him coming up and he will likely monitor the situation. 


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



Celiac.com Sponsor (A8-M):



  • Replies 66
  • Created
  • Last Reply
moosemalibu Collaborator

Glad to hear you got your diagnosis! Welcome to the team ;) .

Fenrir Community Regular

I was just lucky to have good Drs. who listened really well to what I was telling them, knew very well about Celiac and how to DX it. 

 

Anyone in the Twin Cities are of MN that is having possible Celiac issues would get my recommendation of going to Minnesota Gastreoenterology Group, they have several GI specialists and locations in the Twin Cities Metro. I would recommend specifically Dr. Kandiel and Dr. Henninghake, but they have several specialists who I'm sure are very capable. They also have a PA that specializes in caring for Celiac patients. 

NoGlutenCooties Contributor

Welcome to the Club!  And I know what you mean about feeling oddly happy.  You know what's wrong and there is a relatively simple way to fix it, that does not involve surgery, or kemo, or a lifetime of medications with all kinds of side-effects.  If you have to have a disease... this one ain't so bad.

GFinDC Veteran

I was just lucky to have good Drs. who listened really well to what I was telling them, knew very well about Celiac and how to DX it. 

 

Anyone in the Twin Cities are of MN that is having possible Celiac issues would get my recommendation of going to Minnesota Gastreoenterology Group, they have several GI specialists and locations in the Twin Cities Metro. I would recommend specifically Dr. Kandiel and Dr. Henninghake, but they have several specialists who I'm sure are very capable. They also have a PA that specializes in caring for Celiac patients. 

 

That's great Fenrir that you found a good bunch of doctors.  Maybe you'd consider adding a thread to the Doctor's sub-forum?  People go there to look for dr recommendations.

 

Looks like there are a couple threads there already, so maybe adding to one of them is better.

 

Twin Cities (Mn) Recommendations?

https://www.celiac.com/forums/topic/103783-twin-cities-mn-recommendations/?hl=%2Btwin+%2Bcities

 

Great Experience - Twin Cities Minnesota

https://www.celiac.com/forums/topic/106051-great-experience-twin-cities-minnesota/?hl=%2Btwin+%2Bcities

nvsmom Community Regular

Thanks for the welcomes.

 

This is the coolest uncool club that I never wanted to be a part of...... :P

LOL  :lol:  Hope you feel well soon!

ezgoindude Explorer

Good stuff buddy, your scope results sounded similar to mine... since that was still a wash I won't get my HLA genetic typing back until mid May.....

 

 

Now that you're official you have to let me know what comfort/easy to make foods you find comfortable,  as a dude I never realized how much damn time you spend in the kitchen when ALL you meals/snacks are from your house.....


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



Celiac.com Sponsor (A8-M):



Fenrir Community Regular

Good stuff buddy, your scope results sounded similar to mine... since that was still a wash I won't get my HLA genetic typing back until mid May.....

 

 

Now that you're official you have to let me know what comfort/easy to make foods you find comfortable,  as a dude I never realized how much damn time you spend in the kitchen when ALL you meals/snacks are from your house.....

Still figuring food out but I have found corn tortillas to be a be a pretty good replacement for bread in most cases.

 

Ham and cheese rollups, PB&J rollups, pizza, tacos....ect.

 

I'm also a big fan of wild rice and brown rice so I make brown rice, mix in some beans, some ham or chicken, corn and some Mrs. Dash Chipotle Southwest seasoning and it's pretty darn good.

kareng Grand Master

Still figuring food out but I have found corn tortillas to be a be a pretty good replacement for bread in most cases.

 

Ham and cheese rollups, PB&J rollups, pizza, tacos....ect.

 

I'm also a big fan of wild rice and brown rice so I make brown rice, mix in some beans, some ham or chicken, corn and some Mrs. Dash Chipotle Southwest seasoning and it's pretty darn good.

 

I use some of the tortillas like Rudis, Udis or Sandwich Petals to make grilled sandwiches or pizzas.  I never have much luck getting them to roll.  I like to roll ham around a little cheese and maybe a slice of red pepper.  I also like Cruchmaster crackers and am happy with cheese and crackers instead of a sandwich.

 

I make rice and beans like you are talking about.  I use jarred salsa in mine.  I will look for that Mrs. Dash seasoning.  It sounds like something we might like.  Crockpots make cooking really easy, too.  

 

You might want to look at the What's for dinner chat to get some ideas.  Some are pretty fancy cooks but some of us aren't.  They are also a group that would be happy to give you some suggestions.

 

https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/

kareng Grand Master

Good stuff buddy, your scope results sounded similar to mine... since that was still a wash I won't get my HLA genetic typing back until mid May.....

 

 

Now that you're official you have to let me know what comfort/easy to make foods you find comfortable,  as a dude I never realized how much damn time you spend in the kitchen when ALL you meals/snacks are from your house.....

 

You, too.  come on over to the Dinner chat.  Don't be put off by the ones that fancy themselves "gourmets".  Some of us like to spend less time cooking.  I like 1 dish meals that have left-overs!  And cook extra to use later in the week.  LIke - grill some chicken for tonight with BBQ sauce on it & grill some plain at the same time to add to your tacos or salad.   :D

 

 

https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/

GFinDC Veteran

I get the Food for Life brown rice tortillas.  The are kinda stiff so I run a little water over them on both sides and zap them in the nuker for 15 seconds to soften them.

 

Food for Life tortillas

Open Original Shared Link

 

The real gourmet meals are in these threads:

 

Super Easy Meal Ideas Anyone?
https://www.celiac.com/forums/topic/97027-super-easy-meal-ideas-anyone/

Good Gluten Free Meals Prepared Using A Microwave?
https://www.celiac.com/forums/topic/102685-good-gluten-free-meals-prepared-using-a-microwave/#entry885634

Fenrir Community Regular

Thanks for all of the suggestions.

 

At first it seemed like it was going to be very hard to find things I can eat but now I have tons of things I can make myself. It is a good thing that I learned to cook for my wife 7 years ago when we got married because I think I will have to cook a lot more now than I did before. I'm also looking at this as being a new step in life, in that I'm really going to focus on eating healthy now and I can do that gluten-free.

Fenrir Community Regular

Got some new labs back:
 

deamidated gliadin abs, igg     42  Range: 0-19 units

deamidated gliadin abs, iga     73  Range: 0-19 units

 

These labs were drawn about 6 days of being gluten free.

 

Just some more confirmation and a baseline to go on.

Fenrir Community Regular

Just continuing to post here just in case someone looking for answers finds this thread, maybe my experience will help them out:

Got my Pathology Report and it was graded Marsh Grade 3b, so there is quite a lot of villous damage going on apparently.

moosemalibu Collaborator

Wow! That explains how crummy you were feeling. Glad you are on a journey to heal. :)

  • 2 weeks later...
ezgoindude Explorer

wow, been a few weeks was swamped with finals.  Thank you Kareng for the links, i'm slowly building a a reference list of favorites from the forum I can get easy reference too, the recipies are great.  especially if I would get off my lazy @$$ and use the crockpot, looks like alot of good stuff can come from that.

 

Fenrir i'm glad they found the damage after 6 samples.  My doctor is hesitant on telling me how many he sent through (which I'm assuming is one)  but the labs came back normal, which he knows is crap since he saw flattenned villi with his own two eyes...... ugh, my blood work won't support celiac so I'm trying to push for non celiac gluten intolerance. 

 

it's been 9 months and there's only so many scopes on my body they can put a damn camera down ha, I was asking about gallbladder/pancreas issues and his reply is there would be other painful symptoms, to keep a food journal and i'll see him in 3 months.

 

But yea, how's it been in terms of post diagnosis?

Fenrir Community Regular

wow, been a few weeks was swamped with finals.  Thank you Kareng for the links, i'm slowly building a a reference list of favorites from the forum I can get easy reference too, the recipies are great.  especially if I would get off my lazy @$$ and use the crockpot, looks like alot of good stuff can come from that.

 

Fenrir i'm glad they found the damage after 6 samples.  My doctor is hesitant on telling me how many he sent through (which I'm assuming is one)  but the labs came back normal, which he knows is crap since he saw flattenned villi with his own two eyes...... ugh, my blood work won't support celiac so I'm trying to push for non celiac gluten intolerance. 

 

it's been 9 months and there's only so many scopes on my body they can put a damn camera down ha, I was asking about gallbladder/pancreas issues and his reply is there would be other painful symptoms, to keep a food journal and i'll see him in 3 months.

 

But yea, how's it been in terms of post diagnosis?

 

So for so good. I've been glutened a few times. Once out of habit and twice because I didn't realize something had gluten in it.

 

Still learning but feeling better already. Joints are starting to get better, mind isn't as cloudy, don't have constant bloating and gas. So there has been pretty good improvement over the last few weeks. A long way to go yet but so far so good.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - heart390 posted a topic in Introduce Yourself / Share Stuff
      0

      Why now?

    2. - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

    3. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,438
    • Most Online (within 30 mins)
      7,748

    Thomasine
    Newest Member
    Thomasine
    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

    • heart390
      New to. this site!  After 70 years of eating everything - why would I suddenly start having "gluten problems" about 5 years ago???
    • knitty kitty
      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
×
×
  • 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.