• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
rorenchan

Surprised This Morning With Celiac Diagnosis, Not Sure What To Do

Rate this topic

Recommended Posts

I'm glad the biopsy went well. :)

As Lisa (Gottaski) said, your blood results are VERY positive for celiac. Your EMA titre is incredibly high; with that number I would be shocked if your biopsy didn't show damage. My ttg Iga was >200 and my EMA was 1:40, my doctor diagnosed me as a celiac on those results alone. I really doubt you need more tests.

I would start eating gluten-free like the doctor sugested.

Best wishes to you.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Glad it all went so well. We were sent to the nutritionist . . . it really didn't help us much. By the time we got in, my daughter had been gluten free for a month and I pretty much already knew everything she told me. Depending on how long it takes to get in, it may or may not be worth it . . . just sayin'

Oh . . . and my daughter's biopsy results took a little over a week (based on the date of her results). Her doctor's office automatically set an appointment for two weeks after the endo . . . just to give them a couple of "just in case the results aren't back" days.

Share this post


Link to post
Share on other sites

If you get SICK from eating gluten, with those results on a celiac panel blood test, do NOT let Kaiser try to b.s. you that you really don't deserve an "official diagnosis" if your biopsy, for some strange reason, comes out negative.

This is EXTREMELY IMPORTANT if they then tell you to stop eating gluten, anyway.

Kaiser HMO - do not trust them, and always, always, get copies of your test results. They will try to not diagnose or recognize the previous diagnosis of people "officially" with chronic conditions, because this makes their statistics look a lot better than they are, plus, with no firm diagnosis, they don't have to put you on the "must treat potential complications" preventive maintenance tests and lists. As a celiac you are more vulnerable to certain conditions. Been there, done that, got the h*** out, got better insurance, still alive. When I started having horrible neuro symptoms, including vision anomalies, these jokers tried making me wait months for a neuro consult, and then months later for just one scan to look at one body part - I was long gone by that point, during open enrollment - this is nearly criminal behavior.

Share this post


Link to post
Share on other sites

I had a similar experience as Janet and her daughter with the nutritionist I went to post diagnosis. Took several weeks to get in and insurance did not cover it. Perhaps she was helpful to others, but she told me nothing that I hadn't learned in my first weeks gluten free. Others have had much better experiences with nutritionists, so if it is included in your insurance it is worthwhile.

Given your blood results, if you haven't removed gluten yet, it would be wise to use this time to read as much as you can to prepare for your transition to living gluten-free.

Ask questions as needed....it really does make a very tough transition move a bit more quickly.

Share this post


Link to post
Share on other sites

If you get SICK from eating gluten, with those results on a celiac panel blood test, do NOT let Kaiser try to b.s. you that you really don't deserve an "official diagnosis" if your biopsy, for some strange reason, comes out negative.

This is EXTREMELY IMPORTANT if they then tell you to stop eating gluten, anyway.

Kaiser HMO - do not trust them, and always, always, get copies of your test results. They will try to not diagnose or recognize the previous diagnosis of people "officially" with chronic conditions, because this makes their statistics look a lot better than they are, plus, with no firm diagnosis, they don't have to put you on the "must treat potential complications" preventive maintenance tests and lists. As a celiac you are more vulnerable to certain conditions. Been there, done that, got the h*** out, got better insurance, still alive. When I started having horrible neuro symptoms, including vision anomalies, these jokers tried making me wait months for a neuro consult, and then months later for just one scan to look at one body part - I was long gone by that point, during open enrollment - this is nearly criminal behavior.

Oh yeah, I know what you mean. I'm pretty sure I've had celiac disease most of my life, my mom knew something was wrong some time around 6th grade when I started having near constant stomach pain. She took me to get allergy tested, but even after removing all of my food allergies, it didn't help, so I got deflected to psychiatry when I was about 12. I've had a permanent rx for xanax most of my life and every time I see my pcp for anything, she almost always tries to deflect me back to psychiatry instead of running tests. When I got mono two years ago, I had to go to urgent care three times in one week to get a diagnosis, because she didn't think it was mono, just some viral 'thing' going around. I saw her again about 6 months later because I was feeling anemic, and she refused a blood test to check my iron levels. Then I got a call from my psychiatrist who lectured me for 20 minutes on the phone for even thinking I was anemic in the first place, because I hadn't hemorrhaged blood recently, and to go check into group therapy instead. It wasn't until a year later that I saw one of the backup doctors when my pcp was fully booked for my routine check up, that I asked for a referral to gastroenterology for my ibs as it was getting out of control. She got me a referral within a month, and my gastroenterologist had me tested for celiac right away. When I asked him for my blood test results, he mailed them to me, and I scanned the paper and sent copies to both of my parents and my brother. I'm pretty sure if I can't get an official diagnosis from my biopsies at Kaiser, at least i have the blood test results on paper in my files to prove otherwise in case I move insurance companies. Right now I'm in near constant pain with lethargy that I'm unable to work and can barely find the energy to keep up the house chores. I don't care so much about having a diagnosis, as much as I want to get better so I can go back to work!! I miss my job so much.

Share this post


Link to post
Share on other sites

I'm a bit confused. Are you waiting to go gluten-free until you see your GI for endoscopic results and schedule nutritionist? Given your blood test results, now that your endoscopy is complete, there is no reason to wait. Healing takes time - especially if you were undiagnosed for many years.

I encourage you to remove gluten now - if you haven't yet.

Let us know if we can help with your transition :)

Share this post


Link to post
Share on other sites

I'm a bit confused. Are you waiting to go gluten-free until you see your GI for endoscopic results and schedule nutritionist? Given your blood test results, now that your endoscopy is complete, there is no reason to wait. Healing takes time - especially if you were undiagnosed for many years.

I encourage you to remove gluten now - if you haven't yet.

Let us know if we can help with your transition :)

I am fully embracing the gluten free diet as we speak! I asked my grocery store manager if they carry gluten free hamburger buns about a week before my endoscopy, and I explained to her that I have celiac disease and can't eat the regular buns, and the day before my endoscopy I went to stock up on food she told me they started carrying udi's! She ordered me the buns, the blueberry muffins, and the cinnamon rolls, and I got them all, they're so tasty!! Now I can eat turkey burgers, and for some reason that makes me really happy.

Share this post


Link to post
Share on other sites

I am fully embracing the gluten free diet as we speak! I asked my grocery store manager if they carry gluten free hamburger buns about a week before my endoscopy, and I explained to her that I have celiac disease and can't eat the regular buns, and the day before my endoscopy I went to stock up on food she told me they started carrying udi's! She ordered me the buns, the blueberry muffins, and the cinnamon rolls, and I got them all, they're so tasty!! Now I can eat turkey burgers, and for some reason that makes me really happy.

Oh that is great! Let us know how you fare :)

Share this post


Link to post
Share on other sites

Endoscopy results are in and they are positive as expected. I got my official letter of diagnosis in the mail today. They didn't say what my marsh level is though. Is that something I have to ask for? My gastroenterologist didn't seem interested in seeing me in a followup, but instead has referred me to a nutritionist. I'm not sure who to ask to check my vitamin levels, or if I need to go back to my pcp from now on.

Share this post


Link to post
Share on other sites

What I meant was that POSITIVE blood tests don't lie! Positive is positive. But yes, false negatives are quite common. Sorry I didn't clarify!

Share this post


Link to post
Share on other sites

Oh, and to the OP, yes, follow up with your PCP, but be prepared to be proactive, cuz they are usually clueless. Ask for B12, Iron and Ferritin, Vit A, D, E and K to be tested, as all are commonly low in celiacs. Glad you got aN official diagnosis aT least!

Share this post


Link to post
Share on other sites

Endoscopy results are in and they are positive as expected. I got my official letter of diagnosis in the mail today. They didn't say what my marsh level is though. Is that something I have to ask for? My gastroenterologist didn't seem interested in seeing me in a followup, but instead has referred me to a nutritionist. I'm not sure who to ask to check my vitamin levels, or if I need to go back to my pcp from now on.

Welcome to the club - officially ;)

While it is best to be monitored annually by a GI that specializes in Celiac Disease - the follow up testing can be handled by your Primary. If you haven't had nutrient testing - give them a call or email to order:

CBC - Complete Blood Count

CMP - Complete Metabolic Panel

Bs, D, K

Iron, Ferritin, Copper and Zinc

My celiac doc ordered these along with full celiac panel at diagnosis, three and six months then annually after that. I've heard many others first check is at six months.

I've also seen others post that their docs add in A, C and Magnesium

But do ask your Primary for nutrient testing soon as it is necessary for many of us to supplement vitamins and minerals while healing.

How have your first weeks gluten-free been going? Any questions or frustrations we can help with?

Share this post


Link to post
Share on other sites

Thanks guys! I'll make sure to request those vitamin tests. Especially since today my gastroenterologist emailed me back to tell me that I have marsh stage 3. He didn't say a, b, or c though. He's mailing my pathology report today so I can take a better look at it in a few days :(.

Share this post


Link to post
Share on other sites

Thanks guys! I'll make sure to request those vitamin tests. Especially since today my gastroenterologist emailed me back to tell me that I have marsh stage 3. He didn't say a, b, or c though. He's mailing my pathology report today so I can take a better look at it in a few days :(.

Not to worry -- the up side of Marsh Stage 3 is there is no doubt of the diagnosis - many struggle while healing as they question if removing gluten is really necessary.

Remember - you have already started healing by removing gluten, so whatever the report says - you can and will heal :)

Share this post


Link to post
Share on other sites

I got my lab results in the mail yesterday. It reads:

A. Duodenum, Biopsy, Second Portion:

- Lymphocytic Enteritis with Intraepithelial Lymphocytes and Subtotal Villous Blunting.

B. Duodenum, Biopsy, Bulb:

- Lymphocytic Enteritis with Intraepithelial Lymphocytes and Total Villous Blunting.

So I guess that means I'm marsh stage 3c in the bulb and 3b in further down.

Share this post


Link to post
Share on other sites

Sounds like the gluten-free diet is the thing for you then. Time to get your gluten-free booties on and hit the gluten-free diet trail. :) Mostly whole foods will let you heal faster than lots of processed foods. I am sure you have heard the advice about taking pro-biotics and digestive enzymes already. Healing may take a while but it can start right away. We are here if you need advice or what not. We all hit the trail ourselves at one point, so we know it can be a rough one at times.

Share this post


Link to post
Share on other sites

It's been almost 3 months!

I'm starting to feel some small but marked improvements! I'm still very tired, bloated, and the pain of digestion usually knocks me out every meal, so I still can't eat with friends just yet, but my mood is better, and my appetite is strong. My hands feel warmer, and I don't clench my jaw when I sleep as much, which helps a lot with my headaches, ear, and neck pain.

As everyone said, going to the nutritionist was a joke. He didn't know what celiac disease was, and all he had were old pamphlets supplied by the celiac disease foundation from like 2004. Then he gave me a diabetes workbook, and told me to just eat as if I'm diabetic, but just substitute the wheat products for gluten free products. I was so mad that I wasted my copay money on that hack.

I've stuck to the gluten free diet without cheating, and I also take the celiact supplements, but I don't know how long I will stay on them because they are kind of expensive for just a 1 month supply. I'm not entirely sure if they're a pyramid scam yet or not, but I do like that it's an all-in-one kind of supplement, but I still need to take more potassium and calcium. I still need to get all my vitamin levels checked, and I hope my pcp can order the tests when I see her on the 10th for the first time since my diagnosis. Hopefully she isn't as clueless as the nutritionist. If she refuses the tests, I'm finding a new doctor.

Share this post


Link to post
Share on other sites

Wow time flies - glad you are seeing some improvements already :)

It is a good idea to check your nutrient levels - have we already suggested the list? Many docs just check iron and Vit D in women - celiac requires a few more.

Let us know if you have ?s and congrats on the improvements!

Share this post


Link to post
Share on other sites

Great news on improvements, good isn't it? I'm about a month ahead of you now and really seeing benefits. I never Thought of the jaw thing, mine is better too. It is astonishing how many things you think of as normal, until they go.

I am off to a dietitian soon but not holding out much hope..

Have a fantastic new year

Share this post


Link to post
Share on other sites

CMw - very happy to hear you are improving as well - keep up the great work.

Funny you guys mention the jaw pain - was making a list of symptoms that I've had in my life that are connected to undiagnosed Celiac Disease for my kids - just added the TMJ that I had not one but two sets of braces to try to alleviate the pain! My jaw has not hurt or clicked in a very long time :)

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

  • Forum Statistics

    • Total Topics
      108,910
    • Total Posts
      943,450
  • Member Statistics

    • Total Members
      67,043
    • Most Online
      3,093

    Newest Member
    Serenda
    Joined
  • Popular Now

  • Topics

  • Posts

    • Ennis_TX, thank you for your response! I will take heed of all your nutritional pieces of advice, one by one. And yes, I am aware that a gluten marathon is on the horizon soon.   Before doing the test, however, I shall try to fortify my diet with the nutrients you mentioned, and report back in a week or two.   I think adding some iron supplement is wise too.    
    • Yeah I thought that rant might make me look like a queer after reading it a bit later.....I am straight btw I just have very long and fine hair...that yeah it blows everywhere and gets in my mouth sometimes, and always pushing it with my hands or having to tie it up.  I blew up because it sometimes feels like I am talking to a bunch jocks with buzz cuts when it comes to hair....like people that do not understand no matter what you do....it is going to end up in your mouth and you have to keep messing it and working with it when the stuff runs like 4-6" past your shoulders.
      >.< thing is some times with the way your hair is.....you do not rinse it all out...some conditioners I have used in the past used to b ones you would not rinse all the way out....it sort of does become a issue that is very easily avoided. There are many more options for gluten free shampoos now days and many companies have taken the allergy/gluten concern to heart and removed them/used alternatives to boost sales to a larger demographic. Point is while yes I did blow up about it...and honestly in many cases the "hydrolyzed wheat protein" thing is a hit and miss on if it really contained gluten, but better safe then sorry is my bet and with tons of options....why chance it?


       
    • B-vitamins...most gluten and processed foods are enriched...your basically eating a multivitamin every time you have a slice of bread etc. Look for a full spectrum B-vitamin supplement, others can be magnesium, iron, vitamin d, folate, etc. You mention plenty of greens and fruit so ruling out vitamin A,C,K, and a few others. Hmm did you drop off your carbs too much? If your carb dependent you need more complex carbs from like sweet potatoes, rice etc. And what about fat and protein? I am a keto dieter, my body burns fat instead of carbs for energy so I can say it is quite important to have plenty of fats and protein in your diet. Try snacking on nuts/seeds between meals or making up a protein shake with almond butter in it between meals (again going but what you said you eat vs what you might be missing)

      I use Liquid Health for my spectrum B vitamins and vitamin D. Might look into them, being in liquid form you can just add it to a beverage. Might see about magnesium also, huge issue with many with this disease.

      On other after thought, your probably already very aware of...but you mention your not "diagnosed yet" you will have to do a gluten challenge of eating gluten for a extended amount of time daily prior to getting tested. http://www.cureceliacdisease.org/screening/
    • Thanks guys! I have an endoscopy/colonoscopy  feb 5th, so we will see. I have had digestive issues for the past like 10 years. GERD, migraines, lactose intolerant, dizziness on and off starting last year. My test just always show chronic inflammation, I thought they tested for celiac last time but it was only H. pylori samples. As much as I don’t want to have celiac I’m hoping this could be the root of my problem! My doctor said I should probably go gluten free after the test regardless of the results. You guys have been so helpful!! 
    • Well was trying it in smoothies, and puddings...but yeah  I can see it especially with the jelling effects causing some issues...will try again later. I changed over to pumpkin seeds higher in zinc today for my rotation.

      PS I am allergic to corn..and any kind of sugar messes with me. SO most meds are off limits. I went with Immunity Tea from Republic of tea, Ester-C Capsules, Thayers slippery elm lazenges sugar free, and a zinc Supplement for my remedy. Oh and sugar free meds normally contain that asu what ever stuff......makes me go off the deep end mentally.
  • Upcoming Events