New. Tired and Overwhelmed.

[workingk9]

Hello and thank you for the add. I am sorry for the lengthiness of this post, but want to post as complete a picture as possible. 

:. A little background-- my half sister and my niece both have celiac disease (confirmed by biopsy and the niece is not the daughter of the sister with celiac disease, but a different sister). I am 44 years old and have been unwell most of my life. As a young child I had exzema, psoriasis, chronic constipation, and was very small (was 5# 7 oz at birth). As a teen I contracted mono, had to  be vaccinated for rabies (was bit by an animal that wasn't vaccinated. The rabies vaccines made me very ill and my bouts of extreme fatigue started during those vaccines and have never stopped), developed panic attacks, anxiety, and depression, horrific periods (extremely painful and heavy-- and I have a *very* high pain tolerance), and I'm short - 5'3", in my late teens and throughout my 20s I could barely eat due to constant nausea and anxiety, was diagnosed with IBS due to my occasional bouts of severe abdominal pain & bloating (though I never really bought the IBS diagnosis, it just didn't fit). I was so thin (92 pounds at 5'3" tall) that I was labeled anorexic (which was not at all the case, I was just too sick to eat!). In my 30s, I gained weight with age and experienced extreme, crashing fatigue at times. And very gassy, as always. In my late 30s I started working out to lose weight, started eating a cleaner diet (less packaged foods, more fresh fruits/veggies/meats, basically a low gluten diet on accident) and managed to lose 30 pounds and become a "weekend athlete" running 5K, 10K, half marathon, cycling, etc. 2 years ago, I stopped eating as well as I was (less fresh fruits and veggies, lean meats, more packaged foods) and my symptoms of crippling fatigue, shortness of breath, exercise intolerance, bouts of extreme bloating and gas, constipation, headaches, very occasional diarrhea (I have much more of an issue with constipation and bloody stool than diarrhea), achy joints, dizziness, muscle soreness, aching joints (especially shoulders, hips, ankles), severe cyclical abdominal pain (associated with my menstrual cycle), tingling/numbness in my extremities (mostly my left arm, but my legs, too), trouble walking in extreme heat or after excessive exercise, and weight gain over the past year of about 10-12 pounds.....I was diagnosed with "fibromyalgia" recently (but I don't really fit that, either, as I don't have extreme pain, but I do have tender points and extreme fatigue, especially in the afternoon/evening, evening after sleeping 8-10 hours at night, I frequently require a 1-2 hour nap in the afternoon)

As someone who has had to advocate HARD to get myself heard, and not getting any answers as to why I am so unwell, I was going back through my test results from the past couple years....my celiac panel that was done 2 years ago was apparently negative...yet I noticed something the doctor never mentioned. My IgA was LOW...upon doing some research I discovered that having LOW IgA can result in false negatives of the celiac profile. My doctor never even noticed the low IGA (it was 60 two years ago and 59 when I had it retested last week). I have been tested for just about everything under the sun (RA, Sjogren's, pinched nerves, muscle issues with an EMG- negative, etc,) and all my bloodwork & tests have come back normal (though I'm not sure which, if any, may be affected by my low IgA), except that I have 3 leaky heart valves (very mild), chronically low Vitamin D (even with supplementation my level is only 33), low folate, and low B12, as well as high homocysteine--I am homozygous for the MTHFR gene mutation so that is not unexpected). I now get B12 injections monthly and my B12 levels are high normal and I take methyl folate and a number of other supplements that have helped me to feel somewhat better, but not at all close to healthy. Oh, and my calcium level has dropped from 9.6 to 9.2 (range of 8.7-10.2) over the past few years, in spite of dairy making up a huge portion of my diet. Additionally, I did an Organic Acid profile which indicated issues with -- Glucose oxidation, Amino Acid Insufficiency, Impaired Isoleucine Metabolism, Tetrahydrofolate insufficiency & Inflammatory cytokine stimulation. I have been IgG tested for gluten sensitivity (negative ) and IgM for wheat sensitivity (negative). 

My doctor is nowhere near ready to do a scope on me, but I'm begging him to do the Cyrex Labs panel. Has anyone had their test? I did manage to have him refer me to a GI and my appt is the 27th of June. 

Does anyone here have low IgA and initially tested negative for celiac then eventually got diagnosed with it? I honestly never even considered it until I saw that odd result. Then I looked up celiac symptoms and talked to my sister and niece. I just assumed people with celiac *only* exhibited nausea/vomiting, diarrhea, abdominal pain, etc-- where my main symptoms are extreme fatigue, constipation & gas. I SO don't want to have celiac, I eat TONS of wheat gluten containing products. BUT, if a diet change can alleviate my symptoms, I am all for it. I am soooo tired of being sick and tired :-( I'm sure you all can relate. I just want answers. A couple years ago, I did the 23andme DNA test and according to what they test for, I am negative for the 2 most common celiac genes, though I am positive for several others. Here's a study regarding genes other than HLA that are now being associated with celiac disease.  Open Original Shared Link

 

and another helpful article I found- Open Original Shared Link

I also have a very rare polymorphism of a PTPN22 gene rs2476601. I am homozygous for that one, as well as the REL gene rs842647 & FUT2 gene rs601338 and heterozygous for genes LPP rs1464510 and rs6441961

I'm sorry this was so long and appreciate any feedback. And thank you for having this board and wealth of information!!! 

 

Carey

[cyclinglady]

An IgA deficiency can cause false negatives on the celiac IgA tests (DGP and TTG).  Did you have the celiac IGG versions?  If not, you can ask your GI for the complete panel.  

As far as Cyrex:

Open Original Shared Link

[workingk9]

12 minutes ago, cyclinglady said:

An IgA deficiency can cause false negatives on the celiac IgA tests (DGP and TTG).  Did you have the celiac IGG versions?  If not, you can ask your GI for the complete panel.  

As far as Cyrex:

Open Original Shared Link

OH wow. Thank you. I heard it mentioned in a podcast but now I won't waste my money on it. I thought it was a blood test. 

 

Carey

[cyclinglady]

These are the celiac disease blood tests:

Open Original Shared Link

[workingk9]

14 minutes ago, cyclinglady said:

An IgA deficiency can cause false negatives on the celiac IgA tests (DGP and TTG).  Did you have the celiac IGG versions?  If not, you can ask your GI for the complete panel.  

As far as Cyrex:

Open Original Shared Link

2 years ago I had these tests and results--

Deamidated Gliadin ABS, IgA, result 2. range 0-19 for negative

Deamidated Gliadin ABS, IgG, result 2, range 0-19 for negative

TTG, IgA, result <2, must be 4 or more for a positive result. 

TTG, IgG, result 2, must be over 5 for a positive result

Endomysial Antibody, IgA, Negative

IgA, QN, Serum, result 60 LOW , range 91-414

So I'm guessing that the EMA, TTG IgA and Deamidated Gliadin IgA results cannot be accurate and should be tested some other way since I'm low IgA?

My symptoms have increased over the past 2 years. My drs and I suspect MS or now celiac, but I'm pretty sure that celiac is easier to rule out and would be a much preferable diagnosis, so I'm going that route first. 

 

Carey

[workingk9]

6 minutes ago, cyclinglady said:

These are the celiac disease blood tests:

Open Original Shared Link

Are "antidemaidated gliadin peptides" the same is Deamidated Gliadian ABS?

Thanks, 

Carey

[kareng]

It's pretty unlikely an MD will order " tests" from companies like Cyrex.  You do them yourself  and they aren't recognized by the medical community.  but you seem to like the "controversial ;diagnosis your self at home " tests, but I feel like I need to remind you they aren't currently considered medically valid.

for Celiac tests, a slightly low IGA doesn't mean anything.  

"Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age. January, 2013"

Open Original Shared Link

 

[cyclinglady]

2 minutes ago, workingk9 said:

Are "antidemaidated gliadin peptides" the same is Deamidated Gliadian ABS?

Thanks, 

Carey

Most likely yes.  

[workingk9]

1 minute ago, kareng said:

It's pretty unlikely an MD will order " tests" from companies like Cyrex.  You do them yourself  and they aren't recognized by the medical community.  but you seem to like the "controversial ;diagnosis your self at home " tests, but I feel like I need to remind you they aren't currently considered medically valid.

I'm not sure what you mean by "you seem to like the "controversial diagnose yourself at home" tests"?? ALL of my tests have been physician ordered by an MD. As I stated previously, while listening to a couple different podcasts on celiac, the Cyrex labs test was mentioned as being more sensitive and accurate. That's why I'm asking here. I also previously stated that  I would NOT be further pursuing such test when it was pointed out that it is not considered a valid or reliable test. 

Carey

[cyclinglady]

6 minutes ago, workingk9 said:

2 years ago I had these tests and results--

Deamidated Gliadin ABS, IgA, result 2. range 0-19 for negative

Deamidated Gliadin ABS, IgG, result 2, range 0-19 for negative

TTG, IgA, result <2, must be 4 or more for a positive result. 

TTG, IgG, result 2, must be over 5 for a positive result

Endomysial Antibody, IgA, Negative

IgA, QN, Serum, result 60 LOW , range 91-414

So I'm guessing that the EMA, TTG IgA and Deamidated Gliadin IgA results cannot be accurate and should be tested some other way since I'm low IgA?

My symptoms have increased over the past 2 years. My drs and I suspect MS or now celiac, but I'm pretty sure that celiac is easier to rule out and would be a much preferable diagnosis, so I'm going that route first. 

 

Carey

I am not a doctor, but it appears that you are negative on the entire celiac panel.  Even though you have an iGA deficieny, the IGG tests should have caught celiac disease and they did not.     It only takes one positive on the panel, for a GI to take notice and order an endoscopy.  

AI disorders run in families.  You might not have celiac disease, but it could be MS.  I encourage you to continue to advocate for your health!  

[workingk9]

7 minutes ago, kareng said:

It's pretty unlikely an MD will order " tests" from companies like Cyrex.  You do them yourself  and they aren't recognized by the medical community.  but you seem to like the "controversial ;diagnosis your self at home " tests, but I feel like I need to remind you they aren't currently considered medically valid.

for Celiac tests, a slightly low IGA doesn't mean anything.  

"Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age. January, 2013"

Open Original Shared Link

 

I appreciate the quote, and I hope it is accurate, though I cannot figure out to whom it should be attributed, so therefore cannot consider it to be a reliable source. I've also read that even if someone has tested negative previously on a celiac panel, if they continue to have symptoms, they should be retested every so often because just because you have one negative panel doesn't mean they are *always* negative, especially with my family history. Just like the villi in the intestine don't flatten overnight with celiac, neither does the bloodwork go from negative to positive like a lightswitch.

 

Carey

 

[workingk9]

10 minutes ago, cyclinglady said:

Most likely yes.  

Thanks. I appreciate your help.

 

 Carey

[kareng]

Just now, workingk9 said:

I appreciate the quote, and I hope it is accurate, though I cannot figure out to whom it should be attributed, so therefore cannot consider it to be a reliable source. I've also read that even if someone has tested negative previously on a celiac panel, if they continue to have symptoms, they should be retested every so often because just because you have one negative panel doesn't mean they are *always* negative, especially with my family history. Just like the villi in the intestine don't flatten overnight with celiac, neither does the bloodwork go from negative to positive like a lightswitch.

 

Carey

 

I put the link to the quote - The University of Chicago Celiac Center.  

[cyclinglady]

6 minutes ago, workingk9 said:

I appreciate the quote, and I hope it is accurate, though I cannot figure out to whom it should be attributed, so therefore cannot consider it to be a reliable source. I've also read that even if someone has tested negative previously on a celiac panel, if they continue to have symptoms, they should be retested every so often because just because you have one negative panel doesn't mean they are *always* negative, especially with my family history. Just like the villi in the intestine don't flatten overnight with celiac, neither does the bloodwork go from negative to positive like a lightswitch.

 

Carey

 

Karen did provide a link to the University of Chicago's celiac website which is a leading celiac disease researcher.  Frankly, we both reference them because their website is excellent compared to others.  

When did you actually get tested for celiac disease?  I do know that you can develop celiac disease at anytime (my kid gets tested every two years even though she is asymptomatic).  

Sorry, it has been two years.  I guess you can ask your doctor to repeat the celiac disease panel.  Just be sure the IGG versions are done.  

[workingk9]

6 minutes ago, kareng said:

I put the link to the quote - The University of Chicago Celiac Center.  

Frequently Asked Questions

Q

 

Is an IgA result of 39, where normal is 81-463, considered deficient and could it invalidate anti-IgA tests?

Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age. January, 2013

 

A

That doesn't quote the source. It has a date and is on the website for them. -- it appeared to be a question and answer type forum, sort of like this. I wasn't aware and it wasn't clear that a physician was answering the question. 

I hope it's accurate. That would be helpful for me. 

Thanks, 

Carey

[workingk9]

2 minutes ago, cyclinglady said:

Karen did provide a link to the University of Chicago's celiac website which is a leading celiac disease researcher.  Frankly, we both reference them because their website is excellent compared to others.  

When did you actually get tested for celiac disease?  I do know that you can develop celiac disease at anytime (my kid gets tested every two years even though she is asymptomatic).  

It was 2 years ago. That is one reason I think I should be retested at the very least. If they are negative again, I can pretty safely rule it out for now (and hopefully forever). 

Thank you. 

 

Carey

[kareng]

Just now, workingk9 said:

Frequently Asked Questions

Q

 

Is an IgA result of 39, where normal is 81-463, considered deficient and could it invalidate anti-IgA tests?

Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age. January, 2013

 

A

That doesn't quote the source. It has a date and is on the website for them. 

Huh?  It's the FAQs section of the University of Chicago Celiac Center .  That's the date they first put it on.  They are some of the leading authorities and researchers of Celiac disease.  They have made information about Celiac disease easy for everyone to understand on thier website.  

I don't understand how you can think a " podcast" about a blood or stool test or a genetic test with lots of published articles critizing it are " good sources".  But dismiss the info from a medical center that specializes in celiac disease.  

I see there isn't much I can help you with at this time.  I hope you find a solution/ diagnosis for your problems.

[workingk9]

Just now, kareng said:

Huh?  It's the FAQs section of the University of Chicago Celiac Center .  That's the date they first put it on.  They are some of the leading authorities and researchers of Celiac disease.  They have made information about Celiac disease easy for everyone to understand on thier website.  

I don't understand how you can think a " podcast" about a blood or stool test or a genetic test with lots of published articles critizing it are " good sources".  But dismiss the info from a medical center that specializes in celiac disease.  

I see there isn't much I can help you with at this time.  I hope you find a solution/ diagnosis for your problems.

You seem very....judgmental. I'm not sure if you aren't reading my actual replies or are just ignoring them. I have said that I am NOT pursuing the Cyrex test. I did NOT know it was a stool test. I thought it was a blood test. I do NOT prefer to get my information from a "podcast" (not sure why you put podcast in quotes...but I digress". Sorry I like to keep myself informed. I listen to a WIDE variety of podcasts while I clean, workout, whatever. I ALSO said that I didn't realize it was a FAQ, that it was not clear who was posting-- and that now that I understand it was from a DR on that website, I'm GLAD, but still would feel most comfortable being retested with my family history. 

 

So you're right, you can't help me.  Not when you don't read ALL the information and replies and you *assume* plenty without actually knowing (like your snarky " but you seem to like the "controversial ;diagnosis your self at home " tests, " which had absolutely NO merit to it whatsoever--I went back and read my original post and if you are referring to my 23andme test-- THAT was suggested by the CLEVELAND CLINIC PHYSICIANS to assist my sister in a diagnosis of a serious medical condition-- ALL her siblings and family members were suggested to do the test for a specific genetic issue.....so, again, NO "controversial diagnose yourself at home kits" have been used by me. Ever. It's really offensive to come on a board such as this and lay my life out there and have someone like you judge me without even knowing that facts. What a downer. 

 

Appreciate it. 

[kareng]

3 minutes ago, workingk9 said:

You seem very....judgmental. I'm not sure if you aren't reading my actual replies or are just ignoring them. I have said that I am NOT pursuing the Cyrex test. I did NOT know it was a stool test. I thought it was a blood test. I do NOT prefer to get my information from a "podcast" (not sure why you put podcast in quotes...but I digress". Sorry I like to keep myself informed. I listen to a WIDE variety of podcasts while I clean, workout, whatever. I ALSO said that I didn't realize it was a FAQ, that it was not clear who was posting-- and that now that I understand it was from a DR on that website, I'm GLAD, but still would feel most comfortable being retested with my family history. 

 

So you're right, you can't help me.  Not when you don't read ALL the information and replies and you *assume* plenty without actually knowing (like your snarky " but you seem to like the "controversial ;diagnosis your self at home " tests, " which had absolutely NO merit to it whatsoever--I went back and read my original post and if you are referring to my 23andme test-- THAT was suggested by the CLEVELAND CLINIC PHYSICIANS to assist my sister in a diagnosis of a serious medical condition-- ALL her siblings and family members were suggested to do the test for a specific genetic issue.....so, again, NO "controversial diagnose yourself at home kits" have been used by me. Ever. It's really offensive to come on a board such as this and lay my life out there and have someone like you judge me without even knowing that facts. What a downer. 

 

Appreciate it. 

You changed your response while I was replying.  Yes.  the Univ Of Chicago is a site run by doctors who study and treat Celiac disease.  It looked to me, based on your initial response that you didn't consider the U of C a source,  that you weren't interested in legit medical info.

 

if you haven't been tested for Celiac in a few years , you should get re- tested.  You could have developed it by now.  

[GFinDC]

Hi WorkingK9,

It seems like a re-test of the celiac antibodies is a good move at this point.  Two years is plenty of time for things to change.  If your current doctor won't re-test you for the antibodies, maybe you can find a different one to test you.

If you don't get anywhere with antibody testing though, you can decide to go ahead and try the gluten-free diet.   Testing and diagnosis for celiac disease isn't a perfect thing, so the final answer may require a diet test.  Just be aware that if you decide to pursue celiac testing later, you will need to start eating gluten again ( a gluten challenge ).  Which can be painful and unpleasant.

[Jmg]

One potential source of confusion here. I believe that Cyrex do both stool and blood tests:

Open Original Shared Link This is their wheat gluten one:

Quote

Array 3 – Wheat/Gluten Proteome Reactivity & Autoimmunity

Wheat/Gluten Proteome Reactivity & Autoimmunity   Wheat IgG ( CPT CODE : 86001 ) Wheat IgA ( CPT CODE : 83516 ) Wheat Germ Agglutinin IgG ( CPT CODE : 86001-59 ) Wheat Germ Agglutinin IgA ( CPT CODE : 83516-59 ) Native + Deamidated Alpha-Gliadin-33-mer IgG ( CPT CODE : 86001-59 ) Native + Deamidated Alpha-Gliadin-33-mer IgA ( CPT CODE : 83516-59 ) Alpha-Gliadin-17-mer IgG ( CPT CODE : 86001-59 ) Alpha-Gliadin-17-mer IgA ( CPT CODE : 83516-59 ) Gamma-Gliadin-15-mer IgG ( CPT CODE : 86001-59 ) Gamma-Gliadin-15-mer IgA ( CPT CODE : 83516-59 ) Omega-Gliadin-17-mer IgG ( CPT CODE : 86001-59 ) Omega-Gliadin-17-mer IgA ( CPT CODE : 83516-59 ) Glutenin-21-mer IgG ( CPT CODE : 86001-59 ) Glutenin-21-mer IgA ( CPT CODE : 83516-59 ) Gluteomorphin+Prodynorphin IgG ( CPT CODE : 86001-59 ) Gluteomorphin+Prodynorphin IgA ( CPT CODE : 83516-59 ) Gliadin-Transglutaminase IgG ( CPT CODE : 86256 ) Gliadin-Transglutaminase IgA ( CPT CODE : 86256-59 ) Transglutaminase-2 IgG ( CPT CODE : 86256-59 ) Transglutaminase-2 IgA ( CPT CODE : 86256-59 ) Transglutaminase-3 IgG ( CPT CODE : 86256-59 ) Transglutaminase-3 IgA ( CPT CODE : 86256-59 ) Transglutaminase-6 IgG ( CPT CODE : 86256-59 ) Transglutaminase-6 IgA ( CPT CODE : 86256-59 )

I think I've read or heard similar discussions to you Carey about them, where people are saying they're more comprehensive. I've no idea whether that's true or if the 'additional' tests have any clinical value. I know when I was stressing after testing negative on the UK's more limited test I considered sending a sample to them but in the end I had a (negative) biopsy in any case based on symptoms.

I think GfinDC has said it perfectly.  I recognise some of those symptoms from my own experince, as soon as you've had your blood test result, I would start a food diary and then go gluten free for a few weeks and see what happens. If you're like me you'll never go back to it, because no wheat gluten product tastes as good as how feeling healthier feels (to paraphrase Kate Moss :P)  But do make sure you've had that test result first in case the Dr's change their minds about the endoscopy based on its results. 

All the best,  I hope you find the answers and relief you need!

 

[SLLRunner]

57 minutes ago, Jmg said:

One potential source of confusion here. I believe that Cyrex do both stool and blood tests:

Open Original Shared Link This is their wheat gluten one:

I think I've read or heard similar discussions to you Carey about them, where people are saying they're more comprehensive. I've no idea whether that's true or if the 'additional' tests have any clinical value. I know when I was stressing after testing negative on the UK's more limited test I considered sending a sample to them but in the end I had a (negative) biopsy in any case based on symptoms.

I think GfinDC has said it perfectly.  I recognise some of those symptoms from my own experince, as soon as you've had your blood test result, I would start a food diary and then go gluten free for a few weeks and see what happens. If you're like me you'll never go back to it, because no wheat gluten product tastes as good as how feeling healthier feels (to paraphrase Kate Moss :P)  But do make sure you've had that test result first in case the Dr's change their minds about the endoscopy based on its results. 

All the best,  I hope you find the answers and relief you need!

 

It's important to continuing consuming gluten until all testing is complete, including the endoscope, because, otherwise, your tests will not be accurate.

[Jmg]

15 minutes ago, SLLRunner said:

It's important to continuing consuming gluten until all testing is complete, including the endoscope, because, otherwise, your tests will not be accurate.

I meant that Carey should wait for the result, not just the test and if negative (and the doc is apparently opposed to endo) then go gluten-free. However you're right I phrased it badly!

[workingk9]

11 hours ago, kareng said:

You changed your response while I was replying.  Yes.  the Univ Of Chicago is a site run by doctors who study and treat Celiac disease.  It looked to me, based on your initial response that you didn't consider the U of C a source,  that you weren't interested in legit medical info.

 

if you haven't been tested for Celiac in a few years , you should get re- tested.  You could have developed it by now.  

Thank you. I will be going for my B12 shot tomorrow and ask him to run them again. I'm sure he will.

 

Carey

[workingk9]

4 hours ago, GFinDC said:

Hi WorkingK9,

It seems like a re-test of the celiac antibodies is a good move at this point.  Two years is plenty of time for things to change.  If your current doctor won't re-test you for the antibodies, maybe you can find a different one to test you.

If you don't get anywhere with antibody testing though, you can decide to go ahead and try the gluten-free diet.   Testing and diagnosis for celiac disease isn't a perfect thing, so the final answer may require a diet test.  Just be aware that if you decide to pursue celiac testing later, you will need to start eating gluten again ( a gluten challenge ).  Which can be painful and unpleasant.

Ugh, yea. I wanted to cut gluten out a couple weeks ago when I started putting all this together but I did read to not do so until I had any testing completed....so I am preparing to go gluten free but won't until it is either ruled out or confirmed. I want to at least try the gluten free diet for a month or 2 even if I don't have celiec to see if it at least helps with my symptoms. If it doesn't and I don't have celiac, I'll know I can safely consume it and if it does help (whether I have celiac or not), I'll continue it. 

 

Thanks for the info!

 

Carey