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

rorenchan

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nvsmom Community Regular
nvsmom
Posted

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.

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Darn210 Enthusiast
Darn210
Posted

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.

Takala Enthusiast
Takala
Posted

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.

GottaSki Mentor
GottaSki
Posted

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.

rorenchan Newbie
rorenchan
Posted
  • Author

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.

GottaSki Mentor
GottaSki
Posted

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 :)

rorenchan Newbie
rorenchan
Posted
  • Author

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.

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GottaSki Mentor
GottaSki
Posted

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 :)

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Brilliant :)

Mmm cinnamon rolls.

Good luck on the journey

rorenchan Newbie
rorenchan
Posted
  • Author

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.

MitziG Enthusiast
MitziG
Posted

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!

MitziG Enthusiast
MitziG
Posted

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!

GottaSki Mentor
GottaSki
Posted

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?

rorenchan Newbie
rorenchan
Posted
  • Author

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 :(.

GottaSki Mentor
GottaSki
Posted

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 :)

rorenchan Newbie
rorenchan
Posted
  • Author

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.

GFinDC Veteran
GFinDC
Posted

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.

  • 1 month later...
rorenchan Newbie
rorenchan
Posted
  • Author

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.

GottaSki Mentor
GottaSki
Posted

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!

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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

GottaSki Mentor
GottaSki
Posted

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 :)

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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