May be the wrong diagnosis

[NickM]

Newly diagnosed here, but not convinced.  If I have it, I've had it for 60+ years.  Getting a Dr. to respond to complaints about symptoms that in my mind suggested Fibromyalgia, was many years in coming.  Finally a Dr. who decided that some tests (about 30 in all) may give us some info to go with.

I believe that the 5/18 TT test got the Dr. to start thinking Celiac, so on 6/12 she repeated the order for just the TT.  On the strength of that test, she diagnosed Celiac.

5/18/18 Blood test

TISSUE TRANSGLUTAMINASE IgG 0.39 Index <=0.90 Index  Tissue transglutaminase IgA 0.90 Index <=0.90 Index

6/12/18 Blood test

TISSUE TRANSGLUTAMINASE IgG 0.43 Index <=0.90 Index Tissue transglutaminase, IgA 1.02 Index <=0.90 Index

 

Not sure of the normal index of <=0.90.  Does that sound right to you folks?  In any case, the difference between .90 on 5/18 and 1.02 on 6/12 doesn't seem like something to hang a diagnosis on.  I'm sure I'm missing something, which is why I'm writing this.  No other tests were performed.

 

OK, so have been gluten free (we think that's true and are working very hard to keep it that way) since 5/23/18 and so far have not seen much improvement.  In fact, have abdominal pains on both sides of my lower abdomen.  And, I seem to have acquired a somewhat different set of neck/shoulder/back pains which are kind of all over the place.

 

Did have some tendinitis which got better initially, but is now on again off again.

 

Will much appreciate any insight to what you may see above.

 

Many thanks,

Nick

 

 

 

 

[GFinDC]

Hi Nick,

Welcome to the forum!

Your doctor doesn't seem to have run the full celiac disease test panel.  Normally there are 5 or so antibody tests done.  And then an endoscopy is done to confirm gut damage.  It's bad to go gluten-free before all the testing is done.  Mostly because the test results depend on the immune response being active.

Regardless, now that you are gluten-free, you may as well stay that way for a few months.  Many people expect that going gluten-free is going to be a very quick cure for their symptoms.  But it often doesn't work out that way.   A long slow improvement is a common progression.  A year or more to recover is not unusual.

If you stay gluten-free for several months and then try a small amount of gluten, you'll know if your body reacts badly to it.  That's really all you need to know.  Whether it's celiac disease or NCGS (non-celiac gluten sensitivity), you still have to eat gluten-free to feel well and be healthy.

Starting out on the gluten-free diet is easiest and safest if we stick with whole foods like nuts, meats, veggies, and eggs.  Avoiding dairy and sugary or carby foods is also helpful.  Processed foods and eating out at restaurants should be avoided also.

Cross-contamination is when a small amount of gluten gets into a food that would otherwise be gluten-free.  For example using the same jar of peanut butter or stick of butter for gluten-free and regular bread.  Or kissing a gluten-eater after they ate something gluteny.  Cross-contamination is enough to make us sick.  The immune system is very sensitive to even tiny amounts of problem proteins.

There is a "Newbie 101" thread stickied in the "Coping with" section.  It has some tips in it for getting started.

Edited July 18, 2018 by GFinDC

[NickM]

On ‎7‎/‎17‎/‎2018 at 8:05 PM, GFinDC said:

Hi Nick,

Welcome to the forum!

Your doctor doesn't seem to have run the full celiac disease test panel.  Normally there are 5 or so antibody tests done.  And then an endoscopy is done to confirm gut damage.  It's bad to go gluten-free before all the testing is done.  Mostly because the test results depend on the immune response being active.

There is a "Newbie 101" thread stickied in the "Coping with" section.  It has some tips in it for getting started.

Thanks for that GFinDC, every bit helps.

Not sure what other tests besides the endoscopy that perhaps should have been run.  Any details on that?

Will check out the Newbie 101 thread.

Thanks again...

[NickM]

Can anyone relate the "OD" in this passage to the "Index" reference from my test results above:

The probability for celiac disease thus increased from 33% in patients with IgA activity to gluten between 0.4 and 0.8 OD units to 90% in those with such activity above 2.4 OD units. Nevertheless, seven untreated celiac disease patients had IgG and IgA activities to gluten within the normal range. ELISA determinations of serum antibodies to gluten antigens are a valuable adjunct in the diagnosis of adult celiac disease, but a negative test does not exclude this disorder.

Source for the passage: Open Original Shared Link

 

Edited July 20, 2018 by NickM

[RMJ]

OD stands for optical density.  When the test is run it is evaluated in a machine which reads a color and gives results in OD units.  Most blood tests have absolute units such as mg per deciliter, a weight per volume of blood.  Celiac tests are not standardized.  The units are arbitrary based on the machine used to read it.  Thus each manufacturer has their own range of what is normal and what indicates celiac.  You cannot compare your results with the range from a different lab or test manufacturer.

[squirmingitch]

Here is the full celiac blood panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

It was super wrong of your doc to do just the one test on you & that's all. After being gluten free, in order to re-test, one has to do a gluten challenge which is 12 weeks of eating gluten every day. 

[NickM]

Thanks for all the insight; you guy are great.

 

I wouldn’t be pursuing this except for the idea that there doesn’t seem to be a standard reference where it concerns the normal range.  That leads me to feel there is a possibility that I may be misdiagnosed and that I may end up waiting a year or more to find that going gluten free was not the answer.

 

Now I have to figure out if/how/when to ask the dr to run some tests that will provide empirical evidence of the effects of going gluten free.  Would it be appropriate to run the tt iga/igg test again in 5-6 months?

 

I guess the phrase, “welcome to the club” is applicable here...  :o(

Edited July 21, 2018 by NickM

[tessa25]

35 minutes ago, NickM said:

I wouldn’t be pursuing this except for the idea that there doesn’t seem to be a standard reference where is concerns the normal range. 

Every lab has it's own range. If the result is higher than your labs range it's a positive. After being 100% strict gluten free for a few months you can retest at the same lab and see if the number has gone down.

[NickM]

There is a nuance associated with celiac disease that is a bit difficult to convey.  Let me try once more.

 

The Dr. says that the antibodies that show up in the iga/igg test results are an indication of celiac disease and that the only way for those results to be positive is for there to be a celiac disease affliction because they are only created when one has celiac disease.  Maybe I got that confused, however given that, what is it that allows a range of 0.0-0.9 to be ok, ie not celiac disease, when a test result of 1.0 means celiac disease?

 

In other words, if the only way the antibodies can be created is if one has celiac disease, why is it that there is a normal range where it’s not celiac disease if the range is less than 1.0.  In my mind the normal range should be 0.0 for anyone that is not afflicted with celiac disease and that anything greater than zero should indicate celiac disease.

 

Again, what am I missing here?  Maybe something else can be the source of these antibodies and I misunderstood?

 

Maybe I should post this in an email to the Dr.

Edited July 21, 2018 by NickM
system is unstable

[tessa25]

Everybody has ecoli in them, but you hear about people getting sick with ecoli on food all the time. It's the same thing. Everybody has some antibodies, it's when you have too many that there is a problem.

[kareng]

On 7/20/2018 at 10:24 AM, NickM said:

Thanks for all the insight; you guy are great.

 

I wouldn’t be pursuing this except for the idea that there doesn’t seem to be a standard reference where it concerns the normal range.  That leads me to feel there is a possibility that I may be misdiagnosed and that I may end up waiting a year or more to find that going gluten free was not the answer.

 

Now I have to figure out if/how/when to ask the dr to run some tests that will provide empirical evidence of the effects of going gluten free.  Would it be appropriate to run the tt iga/igg test again in 5-6 months?

 

I guess the phrase, “welcome to the club” is applicable here...  :o(

Some labs use a bit different version or measurements in their tests.   But there is a small amount of error to the test or a small amount of normal antibodies.  That’s why normal is not 0 only.  There are other things that can raise them slightly but a large increase is usually only due to Celiac.

[RMJ]

I used to develop tests like this.  To develop a celiac blood test you take blood samples from a bunch of people with biopsy-diagnosed disease, and a bunch of samples from people without celiac. You run the test on all of them.  Then you figure out where to make the healthy/celiac cutoff so that you get the right answer (matches biopsy) most of the time.

Can a positive be wrong?  Yes, but usually not.  One way to evaluate is to go gluten free and retest at the same lab and see if there is a BIG difference.  A small difference could just be variability of the test.  Run the same sample 3 times and you’ll probably get 3 slightly different numbers.

[Slavencia]

On 7/19/2018 at 5:54 PM, squirmingitch said:

Here is the full celiac blood panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

It was super wrong of your doc to do just the one test on you & that's all. After being gluten free, in order to re-test, one has to do a gluten challenge which is 12 weeks of eating gluten every day. 

Interesting. So my doctor did only these tests:

 

1.Outpatient	ENDOMYSIAL AB
	2.	Outpatient	INTRINSIC FACTOR BLOCKING AB
	3.	Outpatient	RBC FOLATE
	4.	Outpatient	TISSUE TRANSGLUTAMINASE AB IGA

He told me I probably have celiac but also anemic and deficient in vitamin b12 and folate. So do I need to get these additional tests you mention for true confirmation of celiac while eating gluten?

[NickM]

 

The HMO in this case is Kaiser and they have a strict set of standards that Dr’s need to adhere to.  I call it “The Book of Kaiser”, and I have referred to that book, perhaps not so successfully, on occasion.  Might have gotten myself black listed over it.  It did take many years of complaining to get the recent tests and the celiac disease diagnosis.

 

I have sent the above, where I said I may send it to the Dr (also sent to the Dietician).  We’ll see what they have to say.

 

What I have found/remembered  just this morning is that my long ago diagnosis of Gilbert’s Syndrome (had forgotten about that) may be playing a part here.  The symptoms overlap to some extent; fatigue (happens easily with not so strenuous exercise), brain fog, bowel issues, but the one thing that GS has a problem with is alcohol.  While it varies to some extent from person to person, in my case, even 6 oz. of wine seems to be at issue; some GS diagnosed folks say that even a sip of wine causes symptoms.  I am also now cutting out the wine.  Curiously, since being GS diagnosed, I have never again had the primary symptom of jaundice.

 

During my recent exam with the Dr. in May I also mentioned that my mouth was in a constant state of burning sensation.  She observed that indeed there were signs of irritation in my mouth, but she seemed to relate it to something other than GS; at the time there was no celiac disease diagnosis.  What I have also found is that if we go out to dinner or have guests, like where you are likely to drink a bit more wine, my mouth gets much more irritated.

 

Very likely I have an intolerance to alcohol (seems to be getting worse), GS and perhaps celiac disease all rolled into one.

[squirmingitch]

1 hour ago, Slavencia said:

Interesting. So my doctor did only these tests:

 

1.Outpatient	ENDOMYSIAL AB
	2.	Outpatient	INTRINSIC FACTOR BLOCKING AB
	3.	Outpatient	RBC FOLATE
	4.	Outpatient	TISSUE TRANSGLUTAMINASE AB IGA

He told me I probably have celiac but also anemic and deficient in vitamin b12 and folate. So do I need to get these additional tests you mention for true confirmation of celiac while eating gluten?

Well yeah, because your doc did not dx based on celiac dx protocols at all. You go to some other doc later - say you move or whatever - the new doc is likely to UNdiagnose you because of the shoddy basis for your dx. Also, you seem to doubt the dx yourself. If you are doubting, then you need to be sure b/c otherwise you very well may not stay on the diet or think that it's ok to cheat once in a while. If you have celiac, it's never ok to cheat - it will do damage to your body.

[cyclinglady]

Your GP/PCP at Kaiser should not have diagnosed you with celiac disease.  She should have referred you to a GI for further testing (the rest of the celiac panel and endoscopy).  PCP/GPs at Kaiser are not authorized to order the additional celiac tests (I have family members who have Kaiser).   Slightly elevated TTG tests can be attributed to other autoimmune issues.  This is why it is important to rule out or diagnose celiac disease.  Get to a GI!  Keep eating gluten until you get that endoscopy.  

Learn more about celiac testing from the GI Association.  More proof for your doctor that you need a referral.  Maybe reference my link in your email to your doctor.  

Open Original Shared Link

Open Original Shared Link

An endoscopy can reveal other things in addition to celiac disease too.  

Be nice.  Be persistent.  Document.  Kaiser loves following procedures and guidelines.  

[NickM]

Here’s what the Dr. said about the slight difference between the tTG iga 0.9 vs 1.0 test results:

 

Conditions like Type 1 diabetes, thyroid disease and rheumatoid arthritis can cause a false elevation in TTG. TTG will be positive in 98% of patients with celiac disease.The only lab I did not test you for was rheumatoid factor. My suggestion would be to stop all gluten for 6 weeks and retest. It is your choice.

 

I actually had suggested that we retest in a month or so to see if the path I am on is producing a lower reading.  It also occurred to me that I may not even have to do that if I somehow miraculously show significant improvement, then further testing wouldn’t be necessary.  Go figure.

 

Also, I was able to get an independent response from a Kaiser GI Dr. who said the the development of the Kaiser tTG test determined that the difference between 0.9 and 1.0 proved to be the point at which 98% of those being tested were actually celiac disease afflicted.  I presume that means there was significant testing and they were very confident of the results.

 

Don’t know what to make of all this, but it appears that I don’t have any choice but to trudge forward.

 

[cyclinglady]

12 hours ago, NickM said:

Here’s what the Dr. said about the slight difference between the tTG iga 0.9 vs 1.0 test results:

 

Conditions like Type 1 diabetes, thyroid disease and rheumatoid arthritis can cause a false elevation in TTG. TTG will be positive in 98% of patients with celiac disease.The only lab I did not test you for was rheumatoid factor. My suggestion would be to stop all gluten for 6 weeks and retest. It is your choice.

 

I actually had suggested that we retest in a month or so to see if the path I am on is producing a lower reading.  It also occurred to me that I may not even have to do that if I somehow miraculously show significant improvement, then further testing wouldn’t be necessary.  Go figure.

 

Also, I was able to get an independent response from a Kaiser GI Dr. who said the the development of the Kaiser tTG test determined that the difference between 0.9 and 1.0 proved to be the point at which 98% of those being tested were actually celiac disease afflicted.  I presume that means there was significant testing and they were very confident of the results.

 

Don’t know what to make of all this, but it appears that I don’t have any choice but to trudge forward.

 

Did the Kaiser GI offer to do an endoscopy to obtain intestinal biopsies?  If not, you should!  The antibodies tests were not designed to diagnose celiac disease.  Biopsies obtained from an endoscopy is the gold standard of diagnosing celiac disease according to all celiac experts (I attended a lecture this year by Dr. Sheila Crowe who is the President of the American GI Association and she stated this very fact).  Some people choose not to do an endoscopy due to financial constraints or time delays (e.g. national health).    I get that, but because the doctors are not knowledgeable could be considered a disgrace.  Am I misunderstanding you?  

[NickM]

 

Didn't actually see a GI, I was offered and the opportunity to see a GI and a dietician at the time of diagnosis and on the strength of the Dr's. statements during the followup visit, I chose to start the new diet and to see a dietician.  I sent my above message to both the Dr. and the dietician and it was the dietician who consulted a GI colleague.  So I have never seen a GI.

 

The issue here is the potential duration for determining that the path one is on is the correct one.  Meaning that it could take a year or more to feel physical improvement; I just don’t want to find out a year or two from now that the problem is something else and who knows what.

 

Since I’m gluten-free now for about 6 weeks, isn’t it reasonable for one to repeat the tTG iga test to see if there has been a reduction in the test results?

 

Need to point out that along with a gluten-free diet, I have given up my 6 oz of wine, no beer and now also consume very little sugar. I also started taking turmeric and as a result have had to cut my BP pills in half;  this morning my BP was 117/75 and that may mean that I need to come off of BP meds altogether.  A bit confusing for me, been healthy for most of my life and this is a PIA.

 

[NickM]

Since the last post I’ve had a sonogram and a CT scan; they only found out that the bones in my back are shot, but I already new that LOL.

 

The Dr. and I agreed that a few months from now we’ll run the blood tests again to see if there is any meaningful change.  Of course, we’ll also see if my symptoms have made any progress.

 

Thanks for all the input,

Nick