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The Continuing Adventures Of Mscurious' Search For Celiac Disease Answers And Evidence Of Intelligence In The Medical Field! :p

MsCurious

Recommended Posts

MsCurious Enthusiast
MsCurious
Posted

Okay, I need more input from the "people in the know"! :) After all the tears, then anger, and frustration after my GI episode yesterday, I decided to roll up my sleeves and do what they won't! Step one: the facts:

1. I know my symptoms and they point to celiac disease... NOT IBS!

2. I have a postive genetic marker for celiac disease DQ2/2.5

3. tTG IgA IgG came back negative (false negative she asks?) :P

3. Idiot GI doctor refused to listen, refused to do any more tests,and scheduled a biopsy Monday "just to show me how wrong I am"

4. I DON'T trust GI.. PERIOD!

Those are the facts as we know them... so I start from the top WHY was my tTG negative? So I look for answers and find that this particular test is very very accurate..... for 90% of the population! :P So, there's 10% who test false negative, and I think to myself ... well somebody's got to be in that 10% ...it could be me. SO, I read further and find that IgA deficiency (quite common and something that is overlooked MOST of the time because it causes such mild reaction) can cause negative test result.

Hmmm.. okay I think to myself... what does IgA Deficiency mean? SOooo.. I google it and find that it is directly related to issues of chronic irritation/infection that goes generally unnoticed and unreported...and affects mucosal membrane in mouth, THROAT, lung airway, digestive tract...etc. DING DING DING! We have a winner here! Its almost a family joke ... how often I have either a low grade or full blown sore throat. I'd say realistically its probably 70% of the time at least! GOOD GRIEF..and I told BOTH doctors about my chronic sore throats! SO, I'm thinking .... if I get the Total Serum IgA and that shows an IgA deficiency, and they do the alternative tTG test what works for people with that issue rather than the one they ran on me.... and it shows positive.... If you were me, would a positive tTG and a Positive DQ2/2.5 be enough for you without a biopsy? I'm thinking if I can get him to confirm that much... I'm good!

Now, about the GI doctor... when I spoke with my regular doctor this morning, I told him that the GI doctor was "not my favorite person... that he disregarded me, wouldn't listen to my symptoms and insisted that I have IBS.... really based on NOTHING! He said he had this guy do some GI test (internal) to figure out bleeding in his mother in law and he did a good job. I said, well, do you have another name for me? :ph34r: Then he said phone appointment time was up and he would research the tests I asked about, and call me back today. He had already spoken to the GI guy, btw...not sure who called whom... but they have spoken.

Then, my regular doctor said... have you tried gluten-free diet? And I said, yes for about 4 - 5 days, and he said did it help? And I said yes. THen he said, so why do you want to do biopsy then? Result is the same... gluten-free Diet! I said, well for one thing, if I DO have celiac disease... there are other things to monitor...and make sure I don't get some other related thing from it. He said, you'd have symptoms and we would test that at the time. Then he said... if I were you I'd just do gluten-free and if it works for you ...great! If not, let me know. Then he said, its better if you DON'T have celiac disease diagnosis on chart for insurance purposes (pre-existing condition..blah blah).... SOOOOOOOOOOOOOOOOOOOOOOOOOO What do you experts think of all this? I still want the blood tests... but beyond that.. I don't think I'm gonna do the biopsy ..even though it is scheduled for Monday...and my doctor trusted this guy to do his Mother in Law.... EEEKS! MOTHER IN LAW..... maybe that is PRECISELY why he let him do it! LOL :o:lol::D

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ravenwoodglass Mentor
ravenwoodglass
Posted

Then, my regular doctor said... have you tried gluten-free diet? And I said, yes for about 4 - 5 days, and he said did it help? And I said yes. THen he said, so why do you want to do biopsy then? Result is the same... gluten-free Diet! I said, well for one thing, if I DO have celiac disease... there are other things to monitor...and make sure I don't get some other related thing from it. He said, you'd have symptoms and we would test that at the time. Then he said... if I were you I'd just do gluten-free and if it works for you ...great! If not, let me know. Then he said, its better if you DON'T have celiac disease diagnosis on chart for insurance purposes (pre-existing condition..blah blah).... SOOOOOOOOOOOOOOOOOOOOOOOOOO What do you experts think of all this?

I think I agree with your doctor. Go on the diet, get him to do testing of your vitamin and mineral levels to check for deficiencies and a Dexta scan to check for osteoporosis and heal. Your response to the diet is the best test there is and you must be tired of seeing obnoxious doctors by now that are clueless at best and nasty at their worst.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Then, my regular doctor said... have you tried gluten-free diet? And I said, yes for about 4 - 5 days, and he said did it help? And I said yes. THen he said, so why do you want to do biopsy then? Result is the same... gluten-free Diet! I said, well for one thing, if I DO have celiac disease... there are other things to monitor...and make sure I don't get some other related thing from it. He said, you'd have symptoms and we would test that at the time. Then he said... if I were you I'd just do gluten-free and if it works for you ...great! If not, let me know. Then he said, its better if you DON'T have celiac disease diagnosis on chart for insurance purposes (pre-existing condition..blah blah).... SOOOOOOOOOOOOOOOOOOOOOOOOOO What do you experts think of all this? I still want the blood tests... but beyond that.. I don't think I'm gonna do the biopsy ..even though it is scheduled for Monday...and my doctor trusted this guy to do his Mother in Law.... EEEKS! MOTHER IN LAW..... maybe that is PRECISELY why he let him do it! LOL :o:lol::D

It sounds like you have a really good regular dr. He is right when he says you can be tested for other things without the celiac diagnosis. He is also right in sayign it *could* mess up your insurance if you were ever to lose the insurance you currently have for a period of time. If your body has already told you that you need to be gluten free, is there a reason why you are pushing for more testing? If you really NEED that positive test result to stick to the diet or to convince other people in your life to make accomodations for you then you could always look into Enterolab. They are controversial on this board and probably not covered by your insurance, but you are likely to get a positive for gluten sensitivity.

MsCurious Enthusiast
MsCurious
Posted
  • Author

UPDATE: Reg doc just called and said he scheduled a phone appointment for me with an allergist!? Hmmmm...

I did speak to him again about the IgA deficiency possibility and the alternative tTG for people that have that. He said he would do more research and if I couldn't get the tests I want with allergist... then he would order them. I'm thinking the HMO admonishes the doctors for doing "outside" lab tests and he probably got his hands slapped for doing the DQ test on me or something...so now he's afraid to do more tests...and is trying to get the allergist to do it so it falls in his statistics and he'll be the one reprimanded for it.

I should have said...don't give up on me now...we're just about golden! :unsure:

ravenwoodglass Mentor
ravenwoodglass
Posted

UPDATE: Reg doc just called and said he scheduled a phone appointment for me with an allergist!? Hmmmm...

I did speak to him again about the IgA deficiency possibility and the alternative tTG for people that have that. He said he would do more research and if I couldn't get the tests I want with allergist... then he would order them. I'm thinking the HMO admonishes the doctors for doing "outside" lab tests and he probably got his hands slapped for doing the DQ test on me or something...so now he's afraid to do more tests...and is trying to get the allergist to do it so it falls in his statistics and he'll be the one reprimanded for it.

I should have said...don't give up on me now...we're just about golden! :unsure:

I hope the allergist deals with intolerances as well as allergies. You may want to ask that when you talk to him. My allergist literally saved my life, no exaggeration. He guided me through a very strict elimination diet which pinpointed the gluten reaction and then refered me back to my useless GI for confirmation. I have a feeling, but I could be wrong, that the allergist is going to tell you to go gluten free and then maybe challenge. I do hope you get some answers soon.

Matisse Newbie
Matisse
Posted

3. tTG IgA IgG came back negative (false negative she asks?)

From what you wrote under #3 you were tested for tTG IGG. If you were not you should definitely be tested for total IGA. Also, you could be tested for the full panel of tests since not everyone tests positive for every celiac test.

If it were me I would want to know with as much certainty as possible since at this point going gluten free is life long and definitely impacts a number of areas.

cassP Contributor
cassP
Posted

hey msCurious: so, yes, of course- Iga deficiency is common in Celiacs... so if you had it, then your TTG Iga result would be innaccurate- BUT- you wrote in this post that your TTG Igg was also negative. so they already did test your IGG to be sure.

but then again- i also heard on this forum one time that you could be Igg deficient.. but i dont know much on that.

but hey- your doc only tested your TTG??? what about your Antigliadin? or Endomysial Antibody??

these results still dont mean everything or the whole story.

sometimes you just have to go off how your body feels.

u know (of course i only had a 2 week gluten challenge- not enough)- but my Antigliadin were SOLID negative. and my TTG Iga & Igg were only like an 8 on the 1st test & a 7 on the 2nd (weak positive).. the only part of my test that was a solid positive was the Endomysial Antibody. my docs didnt know what to do with that... they simply said- if i feel better eating gluten free, then i should.

2 years later i ordered the gene test (im double DQ8), and after going gluten free i got DH. so, u see- these test results can be very misleading..

you only got the TTG done. and you've got a DQ2.5, right? sounds like Celiac is not off the table yet.

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MsCurious Enthusiast
MsCurious
Posted
  • Author

Update: Regular doctor got allergist involved, and they BOTH ordered new tests. The most recent ordered by my doctor is IgA way out of whack high, and he sent EMA IgA to Quest Labs so that will take a while. Not sure exactly what that will do, but time will tell.

I asked allergist what he though about biopsy, and he said, lets postpone that until lab test results are back and I said that I'm ALL FOR THAT! Hopefully, if/when that gets rescheduled, I can figure out a way to have a different doctor (other than "G I Jerk") do it. ;) Things are definitely looking UP! So much more hopeful now! They actually have a documented IgA test that is elevated ...and now they have to figure out why.. so FINALLY the wheels are in motion for a concrete reason... not just me telling them how I feel! :)

Side note: Even though... my "best guess" from my silly layman's research was apparently "off" LOL... with my suspicion of IgA deficiency... it sparked something with my doctor, that caused him to consult with the allergist, and after they both talked, they BOTH ordered new tests. SOoooo, even though I wasn't exactly right... my inquisitive nature and asking questions is getting results. In this case 2 (or 3 if you count me LOL) are better than one! B)

ravenwoodglass Mentor
ravenwoodglass
Posted

Update: Regular doctor got allergist involved, and they BOTH ordered new tests. The most recent ordered by my doctor is IgA way out of whack high, and he sent EMA IgA to Quest Labs so that will take a while. Not sure exactly what that will do, but time will tell.

I asked allergist what he though about biopsy, and he said, lets postpone that until lab test results are back and I said that I'm ALL FOR THAT! Hopefully, if/when that gets rescheduled, I can figure out a way to have a different doctor (other than "G I Jerk") do it. ;) Things are definitely looking UP! So much more hopeful now! They actually have a documented IgA test that is elevated ...and now they have to figure out why.. so FINALLY the wheels are in motion for a concrete reason... not just me telling them how I feel! :)

Side note: Even though... my "best guess" from my silly layman's research was apparently "off" LOL... with my suspicion of IgA deficiency... it sparked something with my doctor, that caused him to consult with the allergist, and after they both talked, they BOTH ordered new tests. SOoooo, even though I wasn't exactly right... my inquisitive nature and asking questions is getting results. In this case 2 (or 3 if you count me LOL) are better than one! B)

From your other post it is your total IGA that is elevated. It is good that your doctor is addressing that as in some instances that can be caused by something serious although many times the cause is benign. I hope you get some answers soon.

ocean girl Newbie
ocean girl
Posted

I think I agree with your doctor. Go on the diet, get him to do testing of your vitamin and mineral levels to check for deficiencies and a Dexta scan to check for osteoporosis and heal. Your response to the diet is the best test there is and you must be tired of seeing obnoxious doctors by now that are clueless at best and nasty at their worst.

I am new here. I have had symptoms since at least August of 2010. I am 42. Have always had allergies, but never thought of food being an issue. First symptoms were anxiety and dizziness. These were what I noticed as something being different. I had also started eating "healthier" at this time....i.e. more whole wheat, less meat and more veggies. By October I had right side flank pain and became so much more bloated and gassy that I ended up at the doctor and had x-rays and sonograms....all showing nothing. My regular bloodwork was all great. My only symptoms were the stomach issues and the dizziness. I had my first panic attack in August....strange enough it was shortly after having an Egg McMuffin at McDonalds.

I started eating a low yeast diet and cut out as much fiber as I could which got rid of the bloating within 2 days and I continued with this until Feb. as I thought I had an imbalance in my stomach. I also started probiotics daily and added fish oil and Stress B complex. I still was consuming gluten here and there...mainly when eating out. I can now recall several times where I ate something and the dizziness got worse.

I have had gynocological issues as well...and they started right after the stomach pain. I now do believe this is tied to the same thing. My ob/gyn finally told me to start eating normally. This was after being told that I am vitamin D deficient. Due to infection...and not healing...he thought I might be.

I began eating cereal again in Feb. and bread in sandwiches and within 5 days the right flank discomfort was back. I had not had this since Nov. when my stomach had finally healed. I have had the blood panel done. Have not gotten my results yet. Also asked for vitamin/mineral testing to see if I am deficient in any other vitamin. I really don't care what my blood panel says at this time....the vitamins I do. I know I am having a reaction to the gluten/wheat.

I agree as well just do it! I am not putting myself through any more turmoil and it was working and I am sticking to it.

Also other things that resolved...less dizziness, no knee pain, and my face cleared remarkably within a couple of months of cutting most wheat out. When I ate it again....all of this came back. Also, I was not bloated anymore or gassy. I always thought that was normal for me....so I do believe now I have had symptoms way before the anxiety started.

I have been wheat free since last Wed. and by Sunday my face had cleared again and my knees feel no pain. I am still having some dizziness, but I know this too will fade.

Never have I ever had panic attacks or issues with anxiety. That part of all of this was the worst...and I did become depressed for the first time ever.

Eat healthy - do the diet.

mushroom Proficient
mushroom
Posted

ocean girl, chalk up another one for the diagnostic abilities of the patient. Do what works, regardless of what the tests say. :P

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      Is this celiac?

      By Theresa2407 · Posted

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    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

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    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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