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Official Diagnosis Just Came In

AmandaD

By AmandaD
in Coping with Celiac Disease

Recommended Posts

AmandaD Community Regular
AmandaD
Posted

Hi guys...many thanks over the weekend for your help. This is AmandaD from Madison, Wis. My doctor just called on the phone to let me know that I'm Celiac for sure ...so now it feels real...

She told me my endoscopy showed moderate villi blunting with increased lymphocytes. Anybody know what that means? She sort of explained it as there's mild stuff going on, I'm not even symptomatic yet and that her TTG test that she did is super, super good at detecting this stuff. She seemed thrilled that the test was so sensitive.

Now they are sending me to a dietitian, she said in a month or two they want to draw some more bloodwork - she said it would be particularly looking for vitamin and mineral deficiences (because my relatives on my father's side have osteoporosis). Anyone know what the typical protocol is now. And, any of you have experience with the UW Hospital?

Anyways, thanks for simply reading my message. Amanda :blink:

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jenvan Collaborator
jenvan
Posted

Hey girl...welcome to the club officially now :)

Moderate villi blunting describes the state of your villi. Know what those are? There is a scale used sometimes to rate the damage...I can't find it online at the moment...and rates villi from normal to completely flattened. It sounds like yours are not flattened, just blunted...which means the ends of the villi are damaged/gone. I'm not a doc of course, but it sounds like your intestinal damage must be on the moderate side...which is great b/c you may have caught your Celiac earlier in the game. So be glad about that! Many of us were not diagnosed till our villi were nearly or completely flattened. :blink:

Protocol can vary from person to person, but generally I think that a follow-up blood test is given (maybe 6 mos to year) post diagnosis, after the diet begins, to check on progress. Oftentimes the doc will run tests to check for deficiencies, as you mentioned, ie. iron, b12, and osteoperosis etc... Hopefully your dietician will be helpful. Often times we will know more about Celiac than they will. A great read which will help educate you is Danna Korn's "Wheat free Worry free". You can also go here to read an article on Follow-Up care: Open Original Shared Link Good luck!

AmandaD Community Regular
AmandaD
Posted
  • Author

Jen - Many thanks for your response! I'm about to head to the grocery store now; and later this week have appt. set up with the dietitian. So wild! I'm assuming this can be corrected pretty well...my aunt who also has it was diagnosed 7 years and is doing well (she told me the doctor said "you have no villi left" - she was relieved to just find out what was wrong with her!)

...How have you done since you were dianosed - did it take forever to heal or was it pretty easy for you? Have you adapted to the lifestyle pretty easily - and more importantly - are people understanding about the whole thing?

Amanda

Hey girl...welcome to the club officially now :)

Moderate villi blunting describes the state of your villi.  Know what those are?  There is a scale used sometimes to rate the damage...I can't find it online at the moment...and rates villi from normal to completely flattened.  It sounds like yours are not flattened, just blunted...which means the ends of the villi are damaged/gone.  I'm not a doc of course, but it sounds like your intestinal damage must be on the moderate side...which is great b/c you may have caught your Celiac earlier in the game.  So be glad about that!  Many of us were not diagnosed till our villi were nearly or completely flattened.  :blink:

Protocol can vary from person to person, but generally I think that a follow-up blood test is given (maybe 6 mos to year) post diagnosis, after the diet begins, to check on progress.  Oftentimes the doc will run tests to check for deficiencies, as you mentioned, ie. iron, b12, and osteoperosis etc...  Hopefully your dietician will be helpful.  Often times we will know more about Celiac than they will.  A great read which will help educate you is Danna Korn's "Wheat free Worry free".  You can also go here to read an article on Follow-Up care:  Open Original Shared Link  Good luck!

<{POST_SNAPBACK}>

jenvan Collaborator
jenvan
Posted

Recovery varies greatly from person to person. I believe most people see some sort of immediate improvement in atleast some form. However, feeling "normal" can take a year for those with more severe damage. I have been gluten-free since February. I am no longer constipated as I was for years...but I have no change in my energy levels or muscle pains yet. I think those things will take longer, as I had Celiac for many years. My anemia has also been corrected. I have noticed a few random things, like how my fingernails grow a lot faster now! Do you not have many noticeable symptoms?

Good luck shopping! Do you have a copy of these forbidden and safe food ingredient lists--they are a life-saver: https://www.celiac.com/st_main.html?p_catid...-35105062499.15

Adapting to the lifestyle can be difficult. I enjoy cooking and my husband and I eat at home alot...so when I am eating at home I don't notice much of a difference. The difficult part for me is when I try to eat out. There are restaurants that have gluten-free menus...but you have to be very careful when you eat out, and should speak to the manager about your needs and issues of contamination--ie. using a clean pan for your food. You can buy restaurant cards too that help explain. I got mine here, although you could make some or print of he internet if you don't want to pay for some: Open Original Shared Link

I'm not sure what you know yet, but in case you don't have it already, go here to read a list of manufacturers that will list any gluten ingredient on their ingredient statement.

Open Original Shared Link

You will find some people are helpful and understanding but some will not care or try to understand. When you encounter those people, remember to stand your ground and stick up for yourself. I always recommend keeping a few gluten-free snacks in your car or purse in case you get stuck somewhere too. Hope this helps Amanda!

AmandaD Community Regular
AmandaD
Posted
  • Author

Jen - Your reply is much appreciated. I had very few symptoms...my doctor called it an incidental finding although I'm thinking maybe what I was having were actually "symptoms"...I reacted to a food product called lecithin that I was taking for plugged ducts while breastfeeding (I couldn't stop going to the loo after taking the supplement!) I went to my doctor a couple times because it just didn't seem to be getting better -that's when they said "hey you've got irritable bowel, but let's get you to a gastro just in case you have colitis"...so after going through handfuls of bloods tests and a pleasant sigmoidoscopy, the only thing that came back funny was the TTg test. I had the endoscopy the next week and found out about the c sprue two days later. A little surprising...but now that I think about it - I've had a few tummy troubles on and off and have a strong history of osteoporosis in my family (I've in fact noticed some signs of vit and mineral deficiencies here and there like muscle twitches every once in a while or feeling tired periodically...but nothing that was like a neon saying "you're a celiac")

Today I met with the leader of our support group in Wisconsin. She was just amazingly helpful. Spent two hours with me helping me feel less scared about the whole thing...and more positive about cooking for myself and my family (I have 3 little ones and a husband, still nursing my one year old also). I meet with a registered dietitian tomorrow afternoon and then they'll set me up with the specifics, I'm assuming they'll also want me to keep a food diary.

I'm supposed to go out to a restaurant tomorrow night - my girlfriend and I sat and looked through a list of gluten free places here and hopeful I'll get a decent meal...I'll be using some of the adviced you've emailed, that's for sure....

Again, so many thanks for your response...for a new celiac it's like a big Nestle chocolate chip cookie!!!!

Recovery varies greatly from person to person.  I believe most people see some sort of immediate improvement in atleast some form.  However, feeling "normal" can take a year for those with more severe damage.  I have been gluten-free since February.  I am no longer constipated as I was for years...but I have no change in my energy levels or muscle pains yet.  I think those things will take longer, as I had Celiac for many years.  My anemia has also been corrected.  I have noticed a few random things, like how my fingernails grow a lot faster now!  Do you not have many noticeable symptoms?

Good luck shopping!  Do you have a copy of these forbidden and safe food ingredient lists--they are a life-saver:  https://www.celiac.com/st_main.html?p_catid...-35105062499.15

Adapting to the lifestyle can be difficult.  I enjoy cooking and my husband and I eat at home alot...so when I am eating at home I don't notice much of a difference.  The difficult part for me is when I try to eat out.  There are restaurants that have gluten-free menus...but you have to be very careful when you eat out, and should speak to the manager about your needs and issues of contamination--ie. using a clean pan for your food.  You can buy restaurant cards too that help explain.  I got mine here, although you could make some or print of he internet if you don't want to pay for some:  Open Original Shared Link

I'm not sure what you know yet, but in case you don't have it already, go here to read a list of manufacturers that will list any gluten ingredient on their ingredient statement.

Open Original Shared Link

You will find some people are helpful and understanding but some will not care or try to understand.  When you encounter those people, remember to stand your ground and stick up for yourself.  I always recommend keeping a few gluten-free snacks in your car or purse in case you get stuck somewhere too.  Hope this helps Amanda!

<{POST_SNAPBACK}>

dme1955 Newbie
dme1955
Posted
Hi guys...many thanks over the weekend for your help. This is AmandaD from Madison, Wis.  My doctor just called on the phone to let me know that I'm Celiac for sure ...so now it feels real...

She told me my endoscopy showed moderate villi blunting with increased lymphocytes. Anybody know what that means? She sort of explained it as there's mild stuff going on, I'm not even symptomatic yet and that her TTG test that she did is super, super good at detecting this stuff. She seemed thrilled that the test was so sensitive.

Now they are sending me to a dietitian, she said in a month or two they want to draw some more bloodwork - she said it would be particularly looking for vitamin and mineral deficiences (because my relatives on my father's side have osteoporosis).  Anyone know what the typical protocol is now. And, any of you have experience with the UW Hospital?

Anyways, thanks for simply reading my message. Amanda :blink:

<{POST_SNAPBACK}>

jenvan Collaborator
jenvan
Posted

Amanda-

Great analogy on Nestle :) So glad you hooked up with a group and to hear the leader was so helpful. Pretty soon you will be helping others too!

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mouse Enthusiast
mouse
Posted

Amanda,

I was never in the UW hospital, but I had an allergist from the hospital,that was the best one I ever had. I had to drive and hour and a half, each way to see him. I lived in Illinois, That hospital has a FANTASTIC reputation. Good Luck. Armetta

Carriefaith Enthusiast
Carriefaith
Posted

Amanda, good luck with the new diet. I don't know if someone's mentioned this yet, but make sure that you have your own toaster/deep fryer, peanut butter, butter, jam, ect. If you're living with people who eat gluten be careful! Double check everything before it touches your food (plates, utensils, cutting boards, ect), and make sure the microwave is clean, especially the inside top (I've been getting glutened lately and think this may be the source!)

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