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Other Tests To Do


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19 replies to this topic

#1 parmeisan

 
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Posted 28 August 2012 - 02:06 PM

Hi,

My doctor is, in his own words, "not an expert on Celiac disease". I have no intention of switching doctors because from what I've read, I am far more likely to end up with a worse doctor, not a better one - and I know this guy cares. He's also pretty agreeable so if I go to him with a list of tests I need done or medication that I want, as long as it makes sense, he'll give it to me.

Is there a reference somewhere that I can give him that will tell him what other things I need to be tested for, what other specialists I should be referred to, etc etc? Bonus points if it's prioritized because he's busy and I doubt he's going to be willing to do everything at once. It will take several 15-minute appointments to get it all done.

Failing that, you could all just tell me your opinions on what to test for, and I'll try to compile a list from it. :)

Oh, and I have already tested for iron, magnesium and B12 deficiencies.

Thanks!
  • 0
29 years old
Migraines my whole life
Diagnosed Anemic in ~2003
Diagnosed GAD in ~2005
Non-ulcer stomach issues in ~2006
Major acid reflux issues in 2012
Positive blood test for Celiac in 2012, biopsy scheduled

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#2 Lisa

 
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Posted 28 August 2012 - 02:13 PM

Hi,

My doctor is, in his own words, "not an expert on Celiac disease". I have no intention of switching doctors because from what I've read, I am far more likely to end up with a worse doctor, not a better one - and I know this guy cares. He's also pretty agreeable so if I go to him with a list of tests I need done or medication that I want, as long as it makes sense, he'll give it to me.

Is there a reference somewhere that I can give him that will tell him what other things I need to be tested for, what other specialists I should be referred to, etc etc? Bonus points if it's prioritized because he's busy and I doubt he's going to be willing to do everything at once. It will take several 15-minute appointments to get it all done.

Failing that, you could all just tell me your opinions on what to test for, and I'll try to compile a list from it. :)

Oh, and I have already tested for iron, magnesium and B12 deficiencies.

Thanks!

Since you have already been tested for Celiac - Positive. I would recommend a Full Metabolic Panel, while you wait for your biopsy.

And as a note, do not go gluten free until you have your biopsy. Use this time to learn all you can as well as learn to read labels. :)
  • 1
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 GottaSki

 
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Posted 28 August 2012 - 02:39 PM

A Complete Metabolic Panel provides information regarding your kidneys, liver, blood sugars and proteins, but does not check for key vitamin/mineral deficiencies.

Since you have already been tested for B12 and Iron, I'd add:

B1 (thiamine)
D
K
Ferritin
Copper
Zinc

If you did not have a full celiac panel - some docs only run a tTG IgA (tissue transglutaminase IgA) - it would be good to get the full panel before you go gluten free to have the data.

Full Celiac Blood Panel:

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Gliadin IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

As far as doctors - a GI that specializes in Celiac Disease is helpful, but once diagnosed there is no reason that you can't manage Celiac with your primary - especially if you have already found one that is willing to work with you.

Good luck with your endo -- remember to keep eating gluten until the test. You can go gluten-free immediately after the test, no need to wait for the results.
  • 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 :)


#4 IrishHeart

 
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Posted 28 August 2012 - 05:50 PM

Here are the tests my GI doctor runs as part of my follow-up care:


CBC
CMP
SED RATE
C-reactive Protein levels
IRON/FERRITIN storage levels
B-12
Folate
Vitamin D
THYROID panels
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 parmeisan

 
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Posted 29 August 2012 - 08:48 AM

Oh, I should have said. I am already gluten-free and acting with the assumption that I do have celiac disease. I mentioned in the other thread that they are still planning on giving me a biopsy but I expect it to be inconclusive because I am not eating gluten. (I wish I had read your advice much earlier, Lisa! ... both Lisa's.)


Is "Ferritin" the same as "Iron/Ferritin storage levels" ?

Thanks all!
  • 0
29 years old
Migraines my whole life
Diagnosed Anemic in ~2003
Diagnosed GAD in ~2005
Non-ulcer stomach issues in ~2006
Major acid reflux issues in 2012
Positive blood test for Celiac in 2012, biopsy scheduled

#6 IrishHeart

 
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Posted 29 August 2012 - 01:27 PM

Is "Ferritin" the same as "Iron/Ferritin storage levels" ?

Thanks all!



yes, the amount of ferritin in the blood shows how much iron is stored in your body.

Hon, as I recall, many members did, in fact, tell you on the other thread that you would need to re-gluten for the biopsy.

And many of us also suggested since you had a positive blood test that maybe it was not necessary, but you said you wanted to have one done anyway, which is your prerogative, of course.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 parmeisan

 
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Posted 30 August 2012 - 07:10 AM

I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.
  • 0
29 years old
Migraines my whole life
Diagnosed Anemic in ~2003
Diagnosed GAD in ~2005
Non-ulcer stomach issues in ~2006
Major acid reflux issues in 2012
Positive blood test for Celiac in 2012, biopsy scheduled

#8 Lisa

 
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Posted 30 August 2012 - 08:49 AM

I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.

Since you already have a diagnosis for celiac by positive blood work, a biopsy might be a good thing anyway, in the least, a base line test. And there are other issue to look for with an endo exam, regardless of whether your biopsy is conclusive or not. With any history of digestive issues, I personally think it's a good idea.
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#9 GottaSki

 
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Posted 30 August 2012 - 10:56 AM

I agree that getting the endo is still a good idea. While it is possible that your time gluten free may effect the results, you will still have the data for comparison should you have another endo in the future. I've had three: my first during diagnosis, my second at a year showed almost no improvement although I'd been completely gluten-free and my last was because I've had some digestive symptoms pop back up the past months. Getting a snapshot while you are newly gluten-free is worth it since you have never had one.

Additionally, as Lisa mentioned they do look at other parts of the digestive system on their way down.

Good Luck :)
  • 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 :)


#10 IrishHeart

 
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Posted 30 August 2012 - 11:26 AM

I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.


I remember. Yes, that happens a lot. Not to worry, though. You have a diagnosis via blood work, you feel better off gluten and your GI doc is doing the endo/biopsy. You are doing all you can do.

So, you decided NOT to "gluten up"?--and just going to stay off it and see what it looks like?
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 parmeisan

 
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Posted 01 September 2012 - 09:51 AM

Well, I couldn't stand the idea of being on gluten for a full 3 months, so that's right out. I guess I haven't really decided yet about how long. I was thinking 1-3 weeks? Enough to get *some* chance of a positive biopsy without hurting myself too bad. Right now I am just finally starting to feel so great so I don't want to lose that, either. If you guys think that it's possible to be off gluten for like 6 full months, and not go back on, and still get something out of the biopsy, then maybe I could try that. Or is that with a week or so back on gluten?

I'm totally up for suggestions on whether or not to back on gluten and for how long. I still have about 2 months before the biopsy but I don't think I want to be on gluten for more than 3 weeks unless you all think it's really the best way.
  • 0
29 years old
Migraines my whole life
Diagnosed Anemic in ~2003
Diagnosed GAD in ~2005
Non-ulcer stomach issues in ~2006
Major acid reflux issues in 2012
Positive blood test for Celiac in 2012, biopsy scheduled

#12 GottaSki

 
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Posted 01 September 2012 - 10:45 AM

This is a tough call. I can't remember - you had positive celiac blood tests, right?

Given the following variables:

- any positive celiac blood work
- improved health while living gluten-free for several months
- harsh reactions to consuming gluten

I would not eat gluten at all.

The reason I say that in this scenario is you could ingest gluten for very little gain - a positive blood test and positive reaction to removing gluten leaves no doubt of Celiac Disease. The endoscopy may still show damage and the biopsies may still indicate Celiac - mine did at a year strictly gluten-free. The endoscopy may indicate little or no damage which could mean your dietary changes have started healing or your damage had not yet become severe.

I'm just not seeing the benefit of making yourself ill in this scenario.

If any of the above variables are different, I might suggest the challenge - hard to say - everything I have read indicates the best chance for correct results is a challenge of at least 6 weeks.
  • 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 :)


#13 IrishHeart

 
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Posted 01 September 2012 - 01:47 PM

I think that what Gotta Ski has reasoned out here with you makes
perfect sense.

I told you before that I honestly felt a positive blood test was enough for a DX (IMHO) if I were you-- but I also understand why you want to do the endo/biopsy. I have to have a follow up biopsy myself next year. (Doc wants to be sure I'm healing as I was left UNDxed for so long.)

I, personally, would never be able to withstand a gluten challenge
and I would never put myself through that again, so I do not blame you one bit for not wanting to eat it again. :unsure:

Whatever you decide, I wish you all the best!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#14 parmeisan

 
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Posted 04 September 2012 - 08:51 AM

OK, well that helps. I did have a positive blood test although I was never able to confirm from my doctor about how sensitive/specific they were (he told me that the one I tested positive on was just used to measure compliance - but I think he doesn't really know much about the tests). And yes, I have felt much better off of gluten. And a dozen symptoms that from my reading can come from celiac disease. I'm not sure about the harsh reactions to gluten - maybe, or maybe I still have an undiscovered allergy. Haven't figured that part out yet. But I feel very confident at this point that I do have it.

If 6 weeks is the absolute minimum for a challenge, then I may as well not bother at all. Especially if you are saying that it wouldn't be odd to find damage after a year. The GI did say he wanted to do the test even I wasn't challenging, that they just needed to know that going in. Maybe they take more samples. So I'll continue to stay off, and I'll just make sure they know that's the case. (I was kind of looking forward to eating a couple of things just one time more, but I'm also relieved at the thought of not poisoning myself again, even just for a week.)

Thanks again. I am so glad I found this forum.
  • 0
29 years old
Migraines my whole life
Diagnosed Anemic in ~2003
Diagnosed GAD in ~2005
Non-ulcer stomach issues in ~2006
Major acid reflux issues in 2012
Positive blood test for Celiac in 2012, biopsy scheduled

#15 GottaSki

 
GottaSki

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Posted 04 September 2012 - 09:19 AM

I wanted to be clear about something:

I think it is probably unusual, not common to have damage at a year. I did have very severe damage at diagnosis - I didn't mean to suggest everyone with Celiac Disease would have the same results - only to show that sometimes post gluten free endoscopy do show damage.

There are NO absolutes in those with Celiac Disease.

Again I'm operating off the fact that you had positive blood work and are therefore Celiac - so I personally don't see the need to challenge for the endo. If you and your doctor feel that you need the biopsy to diagnose - a challenge would be appropriate - I don't recall - does your doctor know you've been gluten free. If you can tolerate the challenge, perhaps they would want to postpone the endo to give the best chance of accurate biopsy.

It is unfortunate that this diagnosis process is not more clear-cut. It would be wise to ask for copies of your blood test results so that you know which tests were run and the results. This information is important to have now and to be used as reference in the future.
  • 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 :)





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