Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Surprised This Morning With Celiac Diagnosis, Not Sure What To Do
0

46 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


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.

0

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.

0

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.

0

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.

0

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 :)

0

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.

0

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 :)

0

Share this post


Link to post
Share on other sites

Brilliant :)

Mmm cinnamon rolls.

Good luck on the journey

0

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.

0

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!

0

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!

0

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?

0

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 :(.

0

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 :)

0

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.

0

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.

0

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.

0

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!

0

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

0

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 :)

0

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
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined