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
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. 

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

Celiac.com Sponsor (A8-M):


  • Replies 66
  • Created
  • Last Reply
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.....

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk. I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me. Soon after diagnosis I suffered...
    2. Tazfromoz
      - Tazfromoz replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until...
    3. hjayne19
      - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

      Hi all, Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was...
    4. yellowstone
      - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive...
    5. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,076
    • Most Online (within 30 mins)
      7,748
    Monica L
    Newest Member
    Monica L
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Shingles - Could It Be Related to Gluten/ Celiac

      By cristiana · Posted

      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      Shingles - Could It Be Related to Gluten/ Celiac

      By Tazfromoz · Posted

      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Celiac Screening

      By hjayne19 · Posted

      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning?

      By yellowstone · Posted

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
×
×
  • 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.