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


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#16 GottaSki

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Posted 07 October 2012 - 07:31 AM

Welcome!

Just wanted to clarify - because this discussion would have confused me when I first learned that I had a positive blood test for Celiac - those with Celiac Disease can have:

positive blood work / positive biopsy

positive blood work / negative biopsy

negative blood work / positive biopsy

There are over 300 symptoms - many with Celiac Disease do not present with classic symptoms and there are some folks without notable symptoms.

We come in all shapes and sizes, some relatively healthy, some very ill - it is up to each person and their doctor to decide what testing should be done.

Personally - I wanted as much information as possible and am glad that I had endoscopy because it revealed the serious damage Celiac Disease had caused while doctors had scratched their heads or dismissed my symptoms for decades.

Take these three weeks to learn about Celiac Disease and prepare for the transition to your new gluten-free life. The transition is tough, but finding that you can not have gluten before major damage to your health is priceless.

Good Luck to you :)

PS...your doctors may have already ordered them, but make sure you have a full celiac blood panel before you remove gluten - this information can be important to have for comparison in your follow up care.
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#17 rorenchan

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Posted 08 October 2012 - 05:21 PM

Thanks everyone. It's good to know that there is such a supportive community that I can talk to. It's comforting not being alone in this.

I'm on my way getting used to the gluten free diet, but is it normal to be a little bit ocd about it? My husband is a gluten eater, and he's a kitchen tornado. His favorite food is noodles and beer (he's Japanese). He works at night because of the time difference, and so when I go to sleep, the kitchen is clean, and I wake up to a mess with every pot and pan caked in noodle water, spilt soy sauce and fried crumbs, cups of beer, etc. It never ever bothered me before, not even the whole having to clean up a mess first thing in the morning part, but now its like walking into a safety hazard zone. Should I wear gloves? Do I need to get myself a whole second set of cookware, cooking utensils, and eating utensils? Does a dish washer work against gluten? I'm seriously afraid of cooking my rice noodles in the same pot as his wheat noodles even after it's been run through the wash.

I'm still conflicted about getting the endoscopy. My health care provider (Kaiser) said I need to have it done, and my best friend is going to be my chaperone/driver, but my husband is very much against it and said that if the blood test was positive, then it should be enough. He's really worried that there could be complications from the endoscopy and the anesthesia. I guess, I should call my gastroenterologist and talk to him about it.
  • 0
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

#18 psawyer

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Posted 08 October 2012 - 05:40 PM

He's really worried that there could be complications from the endoscopy and the anesthesia.

Nothing is 100% risk-free.

Usually, the endoscopy procedures is done with sedation but not anesthesia. You will be groggy after the procedure, and will likely have no memory of it. You WILL need a responsible adult to take you home after the procedure and stay with you until you are fully alert--a few hours, at least.

I have traveled that road three times. It is not a big deal. Complications are not unheard of, but are extremely rare.
  • 0
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#19 GFinDC

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Posted 09 October 2012 - 05:03 AM

Hi,

Hubby may have to change his ways some. The biggest problem would be baking or cooking with wheat / gluten flour. The flour is a fine powder and can get airborne and settle on surfaces throughout the area. Or be breathed in.hours later. There are gluten-free rice noodles available, and San-J makes a gluten-free tamari sauce. So he can still eat his noodles and soy sauce. gluten-free beer is out there too. Kissing can be a problem tho, and he needs to brush and gargle before full on face sucking. You are not nessecarily bad off to be a little paranoid about gluten avoidance at first. It can take a while to learn all the places gluten can hide in foods, and the different names they use for it. That's why it is better to stick with whole foods instead of processed foods when starting the gluten-free diet.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#20 GottaSki

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Posted 09 October 2012 - 07:15 AM

That kitchen would scare any of us.

You'll need your own toaster, colander, can opener, etc. I highly suggest getting a second set of cookware and cooking utensils in a different color to minimize cross contamination. If it is possible designate one counter as a gluten free zone for your food prep - if not, prepare everything with a barrier - gluten-free cutting board, plate, foil, etc. The dishwasher is sufficient for getting plates and eating utensils clean. When I first went gluten-free we scrubbed some items by hand and then ran them thru the heavy cycle of the dw and had no problem.

As you find your way and replace all of your favorite gluten containing foods, your husband may decide he'll go gluten-free in your home. Mine did, but we started with a combined kitchen and evolved over a year or more. No need to rush this - the learning curve is enough for you to deal with right now - your husband will evolve along with you in time. That being said - should he be volunteer to go gluten-free in the home - take him up on it.

Oh - I'd suggest your husband learn to do his own clean-up - if that's not possible I'd wear gloves when tackling the problem yourself.

Hang in there...this does get easier.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#21 Gemini

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Posted 09 October 2012 - 09:56 AM

Thanks everyone. It's good to know that there is such a supportive community that I can talk to. It's comforting not being alone in this.

I'm on my way getting used to the gluten free diet, but is it normal to be a little bit ocd about it? My husband is a gluten eater, and he's a kitchen tornado. His favorite food is noodles and beer (he's Japanese). He works at night because of the time difference, and so when I go to sleep, the kitchen is clean, and I wake up to a mess with every pot and pan caked in noodle water, spilt soy sauce and fried crumbs, cups of beer, etc. It never ever bothered me before, not even the whole having to clean up a mess first thing in the morning part, but now its like walking into a safety hazard zone. Should I wear gloves? Do I need to get myself a whole second set of cookware, cooking utensils, and eating utensils? Does a dish washer work against gluten? I'm seriously afraid of cooking my rice noodles in the same pot as his wheat noodles even after it's been run through the wash.

I'm still conflicted about getting the endoscopy. My health care provider (Kaiser) said I need to have it done, and my best friend is going to be my chaperone/driver, but my husband is very much against it and said that if the blood test was positive, then it should be enough. He's really worried that there could be complications from the endoscopy and the anesthesia. I guess, I should call my gastroenterologist and talk to him about it.


If you have positive blood work, especially tTg and EMA, then that is a formal diagnosis and the only reason you need an endo is if you want to see exactly how bad the damage is. Some people need to see pictures of damage to convince themselves to remain gluten-free for life.

You also do not need new pots and pans unless the ones you have are porous. Stainless steel or cast iron are fine, as long as the cast iron is coated, preferably with enamel. As long as you scrub non-porous cookware well, you will get sick from sharing pots. Gluten cannot absorb into cookware unless it is porous.
  • 0

#22 rorenchan

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Posted 01 November 2012 - 04:04 AM

Hi guys, just an update.

I had my endoscopy yesterday. It was pretty much a non-event. I was scared going in, that I wasn't able to sleep the night before, combined with being so hungry from fasting, I basically fell asleep on the hospital bed before they even gave me the sedative. They thought it was pretty funny. All I can remember was the burning sensation of the sedative when it entered my IV, and feeling it flow up my arm to my heart and lungs and into my brain, and I could taste it on my breath. Then it was lights out, literally, because they turned all the lights off in the room, and like half a second later I was waking up in recovery. I don't remember any of my discharge instructions. My bff took me home, and she said the doctor talked to me, and I just made waving arm motions at him to stop talking, and the only thing I kept saying was that I was tired.

He didn't say anything to her about what he saw, only that my biopsy results will take 2-3 weeks, and to start eating gluten free. Since I have Kaiser, they updated my past visit section on their website, and under this visit's diagnosis he wrote, 'Abnormal Laboratory Findings' so I'm guessing he must have seen something while he was digging around in there, or maybe he was referencing my blood test. Who knows.

I wish it didn't take so long to get back biopsy results. :(.

I did manage to get my blood test results in detail. According to my allergist/immunologist, my antibody levels are really high.

Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Endomysial Ab Titer: 1:160
IgA, Serum: 286



If you had an upper endoscopy, how long did it take to get your results?

Edited by rorenchan, 01 November 2012 - 09:45 AM.

  • 0
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

#23 SMDBill

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Posted 01 November 2012 - 08:47 AM

The sinus symptoms are interesting. I posted this info elsewhere, but it's somewhat relevant. I suffered constant post nasal drip and I had a few sinus and throat infections along the way. I also was forced to constantly clear my throat - about once per minute while awake. It was embarrassing and irritating. Once gluten-free I think it was somewhere within the first couple weeks gluten-free that I noticed the sinus issues disappeared. I've had those issues for years and they simply vanished. Got glutened and they returned, now nearly gone again. It's amazing how much of our lives and bodies are impacted by gluten so you have a lot to look forward to.

As mentioned, gobble up all that gluten now while you can. I gave up a lot of my favorite foods, but you'll never regret for a moment making yourself feel so much better. No food is worth physical and mental pain.
  • 0

#24 GottaSki

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Posted 01 November 2012 - 08:52 AM

Pathology of my biopsies usually takes about a week.

I must say, your blood results clearly indicate Celiac Disease. The tTG IgA is very high and the EMA-IgA indicates damage to your small intestine. Not essential to diagnosis, but did your doctor run any IgG based tests or either Demiated Gliadin Peptide blood test? The DGP is important as it is a good test to repeat at follow-ups to be sure you are being as compliant as possible to removing ALL gluten.

Should your biopsies be negative - I'd guess they will be positive - it is time to remove ALL gluten - if you haven't already.

Let us know if you have any other questions!
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#25 rorenchan

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Posted 03 November 2012 - 11:37 AM

Pathology of my biopsies usually takes about a week.

I must say, your blood results clearly indicate Celiac Disease. The tTG IgA is very high and the EMA-IgA indicates damage to your small intestine. Not essential to diagnosis, but did your doctor run any IgG based tests or either Demiated Gliadin Peptide blood test? The DGP is important as it is a good test to repeat at follow-ups to be sure you are being as compliant as possible to removing ALL gluten.

Should your biopsies be negative - I'd guess they will be positive - it is time to remove ALL gluten - if you haven't already.

Let us know if you have any other questions!



My doctor only ran the one blood test, we haven't ran any tests for IgG yet. It's all so new to me, I'm still trying to figure out what the different tests represent. My doctor said that depending on the results of my biopsy, I'll be able to get an official diagnosis, and then he'll refer me to a nutritionist who specializes in celiac disease, so perhaps I can ask the nutritionist to run the extra tests before we get started. Thanks for the heads up!
  • 0
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

#26 nvsmom

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Posted 03 November 2012 - 12:10 PM

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
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#27 Darn210

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Posted 03 November 2012 - 01:03 PM

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
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#28 Takala

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Posted 03 November 2012 - 04:02 PM

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

#29 GottaSki

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Posted 03 November 2012 - 06:14 PM

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

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#30 rorenchan

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Posted 04 November 2012 - 04:18 AM

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
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.


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