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Possible Celiac?

Fenrir

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Fenrir Community Regular
Fenrir
Posted
  • Author

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. 

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  • Replies 66
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moosemalibu Collaborator
moosemalibu
Posted

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

Fenrir Community Regular
Fenrir
Posted
  • Author

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
NoGlutenCooties
Posted

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
GFinDC
Posted

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
nvsmom
Posted

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
ezgoindude
Posted

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.....

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Fenrir Community Regular
Fenrir
Posted
  • Author

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
kareng
Posted

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
kareng
Posted

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
GFinDC
Posted

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
Fenrir
Posted
  • Author

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
Fenrir
Posted
  • Author

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
Fenrir
Posted
  • Author

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
moosemalibu
Posted

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

  • 2 weeks later...
ezgoindude Explorer
ezgoindude
Posted

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
Fenrir
Posted
  • Author

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.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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