Test Results, Not Convinced...

[iamashley07]

Hello. I'm a little frustrated and confused and could use some input. I am a 26 yo female. In high school, I went through some stress and depression which I believe triggered my Hashimoto's. It wasn't until 2009 when my goiter was discovered and a few years after that I was put on Levothyroxine. My levels have been under control since, but I still yo yo and don't feel well. I have had two miscarriages and chemical pregnancy and one successful pregnancy. I had my gallbladder removed a year ago (gallbladder attacks started while pregnant and had it removed 11 post partum).

 

A few months ago, my depression and anxiety sky rocketed. I've been bloated, bowels are wierd (hard in the morning, soft in evening) hair is falling out despite thyroid being under control, multiple ear infections, lower back pain (been seeing a chiropractor), extreme brain fog (and I'm getting plenty of sleep), my periods have been wacky (returned about five months ago, I'm breastfeeding), gas has been taken to a whole new level although i've always been gassy, my hips have hurt since pregnancy (thought it would go away but hasnt), my vitamin d was tested and it was 27 (considered normal, but on the low end),

 

In the last few years I've had swollen gums, terrible sinuses, headaches (related to sinuses, who knows), am constantly tired (basically my whole life on that one), I occasionally get dizzy and light headed, I get hives at least once a day on my chest and face and my hands and arms have been getting weird bumps on them after sun exposure usually, I also have a "butterfly" rash on my face (my endo addressed this after my daugther was born and it was determined I have "indeterminate lupus" which means I might have it but not enough signs or proof to diagnose me with it, I just followed up with that again in the last few months).

 

SO, these are my test results from this week with only two tests of the celiac panel.

 

TRANSGLUTAMINASE IGA ANTIBODY <7.0 U/mL 0.4 TRANSGLUTAMINASE IGG ANTIBODY <7.0 U/mL

<0.6

     

 

 

My doctor said they are normal. I asked if I could get the other three tests done in a celiac panel and she wants to refer me to a GI. I feel like I'm being brushed off... I've been finding conflicting research on what these mean or no research at all so here I am. Could these results be scewed because I have at least one other autoimmune disorder? I should add my thyroid antibodies were over 6,000 a couple years ago when 60 or below is normal. Could that effect the results?

 

Should I move on and just feel like crap or pursue this because it looks like it could be celiac? I have had two people in the last year tell me I show signs of celiac and I brushed them off thinking no way, but recently I really feel like it could be a possibility.

 

Thank you so much for your time!

 

Ashley

[kareng]

Open Original Shared Link

 

"Which blood tests should I have to screen for celiac disease?

You should have both tTG-IgA and total serum IgA tests to screen for celiac disease. As long as you produce IgA (total serum IgA confirms you do), tTG-IgA is 98% accurate in measuring elevated antibodies. If IgA deficient, or if there is some other equivocating factor to potentially compromise the blood test, then an Open Original Shared Link is also given."

 

 

 

I don't know much about lupus, but aren't a lot of these symptoms of lupus?

[iamashley07]

Open Original Shared Link

 

"Which blood tests should I have to screen for celiac disease?

You should have both tTG-IgA and total serum IgA tests to screen for celiac disease. As long as you produce IgA (total serum IgA confirms you do), tTG-IgA is 98% accurate in measuring elevated antibodies. If IgA deficient, or if there is some other equivocating factor to potentially compromise the blood test, then an Open Original Shared Link is also given."

 

 

 

I don't know much about lupus, but aren't a lot of these symptoms of lupus?

They can be yes, along with a lot of these symptoms mimicing thyroid disorders. Thanks for responding!

 

What levels would make the IGA defiecient? Since my IGA was .4 is that still normal?

[kareng]

They can be yes, along with a lot of these symptoms mimicing thyroid disorders. Thanks for responding!

 

What levels would make the IGA defiecient? Since my IGA was .4 is that still normal?

 

 

It doesn't look like you had the total serum IGA - that just checks to see if you can make IGA that they are testing for.  A few people (10%?) can't and those types of test are not valid for them.

 

Open Original Shared Link

 

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.

[nvsmom]

You would need the normal range of the serum Iga to know if your 0.4 was normal.  Most labs have ranges into the hundreds so I suspect that your lab is not using the typical range.  Open Original Shared Link

 

The tTG IgA is not perfect and can miss up to a quarter of all celiacs.  It really is a good idea to get the tTG IgG, DGP IgA, DGP IgG, and maybe the older AGA IgA and AGA IgG done if the DGP tests are unavailable.

 

Lupus and celiac disease have a lot of overlapping symptoms.  You might as well look into celiac disease testing and even consider trying the gluten-free diet after testing is done; it can sometimes help those with other autoimmune problems.

 

Are you sure your thyroid is fine?  Your free T3 and free T4 should be in the 50-75% range of the lab's normal reference range.  Some times taking just a T4 supplement will not do that for a patient.  I used to take Synthroid, and it got my TSH down to normal but my FT3 and FT4 barely moved up.  I had to switch to something with T3 in it (and to a new doctor) to get my free T's into a better spot.  I felt a lot better for it.

[iamashley07]

on 5/29 my t4 was 1.12 and my tsh was 5.29. my levo was increased from 125mg to 150 mg (I also had a chemical pregnancy right after these results) and I have an appt next week with my endo with new labs drawn just prior to the appoint. so yes, my tsh is climbing and that could very well be the culprit. I have a referrel into a GI and may have him do some more celiac testing just to be sure then focus on my thyroid I guess.

 

trying gluten free may be an option after all this is done. thanks for all the advice. when i get other labs done, I'll make sure to update.

[Gemini]

You really need to have proper Celiac testing done because Hashi's happens very often with Celiac (I have Hashi's) and also lupus.  If you have undiagnosed Celiac, it will be nearly impossible to get your thyroid under control and lower your antibodies.  That TSH is high and indicative of a need to change thyroid meds.  Many people with Hashi's find they do much better on a T3/T4 combo. (I did)  Do they ever check your T3?

 

Having Hashi's may raise your tTg, not show a lower/normal range and this is why you should have a full Celiac panel done to make sure you are not IgA deficient. You have a lot of Celiac symptoms and possibley 2 autoimmune diseases associated with it.  Do not just move on and feel like crap...that is no way to live.  Demand more complete testing.......you deserve to have whatever testing needs to be done to get to the root cause of your issues!

[janeycar]

Hello. I'm a little frustrated and confused and could use some input. I am a 26 yo female. In high school, I went through some stress and depression which I believe triggered my Hashimoto's. It wasn't until 2009 when my goiter was discovered and a few years after that I was put on Levothyroxine. My levels have been under control since, but I still yo yo and don't feel well. I have had two miscarriages and chemical pregnancy and one successful pregnancy. I had my gallbladder removed a year ago (gallbladder attacks started while pregnant and had it removed 11 post partum).

 

A few months ago, my depression and anxiety sky rocketed. I've been bloated, bowels are wierd (hard in the morning, soft in evening) hair is falling out despite thyroid being under control, multiple ear infections, lower back pain (been seeing a chiropractor), extreme brain fog (and I'm getting plenty of sleep), my periods have been wacky (returned about five months ago, I'm breastfeeding), gas has been taken to a whole new level although i've always been gassy, my hips have hurt since pregnancy (thought it would go away but hasnt), my vitamin d was tested and it was 27 (considered normal, but on the low end),

 

In the last few years I've had swollen gums, terrible sinuses, headaches (related to sinuses, who knows), am constantly tired (basically my whole life on that one), I occasionally get dizzy and light headed, I get hives at least once a day on my chest and face and my hands and arms have been getting weird bumps on them after sun exposure usually, I also have a "butterfly" rash on my face (my endo addressed this after my daugther was born and it was determined I have "indeterminate lupus" which means I might have it but not enough signs or proof to diagnose me with it, I just followed up with that again in the last few months).

 

SO, these are my test results from this week with only two tests of the celiac panel.

 

TRANSGLUTAMINASE IGA ANTIBODY <7.0 U/mL 0.4 TRANSGLUTAMINASE IGG ANTIBODY <7.0 U/mL

<0.6

     

 

 

My doctor said they are normal. I asked if I could get the other three tests done in a celiac panel and she wants to refer me to a GI. I feel like I'm being brushed off... I've been finding conflicting research on what these mean or no research at all so here I am. Could these results be scewed because I have at least one other autoimmune disorder? I should add my thyroid antibodies were over 6,000 a couple years ago when 60 or below is normal. Could that effect the results?

 

Should I move on and just feel like crap or pursue this because it looks like it could be celiac? I have had two people in the last year tell me I show signs of celiac and I brushed them off thinking no way, but recently I really feel like it could be a possibility.

 

Thank you so much for your time!

 

Ashley

Wow! A lot of the same symptoms that I had and I know how frustrating that is. By all means go to a GI that is experienced with Celiac's and knows what to look for. I saw many doctors and spent a small fortune going to different doctors that would just brush me off. After 9 years I finally feel like I am under control. The depression is mostly gone. I had hives too and my allergist put it all together and sent my blood to the Mayo clinic and the butterfly rash and hives were diagnosed as "autoimmune urticaria" which proved it was an auto-immune reaction. Please check that the GI you go to knows what to look for. I had an endoscopy a few years ago (before I had even heard of Celiac's; I just felt awful) and he told me there was nothing wrong. So frustrating....

[nvsmom]

on 5/29 my t4 was 1.12 and my tsh was 5.29. my levo was increased from 125mg to 150 mg (I also had a chemical pregnancy right after these results) and I have an appt next week with my endo with new labs drawn just prior to the appoint. so yes, my tsh is climbing and that could very well be the culprit. I have a referrel into a GI and may have him do some more celiac testing just to be sure then focus on my thyroid I guess.

 

trying gluten free may be an option after all this is done. thanks for all the advice. when i get other labs done, I'll make sure to update.

 

That TSH indicates hypothyroidism.  It really should be close to a 1.  I don't know your T4 range so I can't comment on that.

 

When you get labs done, get a free T3 and free T4 along with the TSH.  The free T's will tell you more than the T4 or T3 will.

 

Good luck!

[iamashley07]

Recently I've had some more testing done and Tuesday I had an endoscopy. During the endoscopy they did take biopsies (he said they sometimes don't if things good fine) and he said I had some acid and suggested taking omeprazole. The blood tests test negative for Celiac but I do carry the gene so it's possible. Just updating on my results and seeing if anyone has any input. Thanks!

 

VITAMIN B12 301-1100 pg/mL MINE 637

IMMUNOGLOBULINS IGA 70-312 mg/dl MINE 244

TRANSGLUTAMINASE IGA ANTIBODY <7.0 U/mL MINE 0.4

TRANSGLUTAMINASE IGG ANTIBODY <7.0 U/mL MINE <0.6

FERRITIN 125

 

LAB C-REACTIVE PROTEIN

Result

Value

Ref Range

 

C-REACTIVE PROTEIN

0.4

0.0-0.8 mg/dL

LAB IRON & IRON BINDING CAPACITY

Result

Value

Ref Range

 

IRON, TOTAL

64

35-140 ug/dL

 

IRON BINDING CAPACITY, T

299

245-400 ug/dL

 

% SATURATION

21

13-45 %

LAB FERRITIN

Result

Value

Ref Range

 

FERRITIN

125

29-322 ng/mL

LAB IMMUNOGLOBULINS IGA

Result

Value

Ref Range

 

IMMUNOGLOBULINS IGA

244

70-312 mg/dl

 

 

 

Comment:

 

 

 

Very high IgA levels (especially if due to a monoclonal gammopathy) may be falsely normal or low due to prozone effect.  Please call X53140 for re-analysis if this problem is suspected.  Specimens are held for 72 hours for re-analysis.

LAB CELIAC ASSOCIATED HLA-DQ TYPING (REFERRAL)

Result

Value

Ref Range

 

DQ ALPHA 1 (CELIAC HLA-DQ)

03,05:01

Not Applicable

 

DQ BETA 1 (CELIAC HLA-DQ)

02:01,03:01

Not Applicable

 

 

 

Comment:

 

 

 

Serologic Equivalent:

2,7

 

CELIAC GENE PAIRS PRESENT?

Yes

 

 

INTERPRETATION (CELIA HLA-DQ)

 

[cyclinglady]

I have Hashi's and I test negative to the TTG tests (just had one done recently after a glutening). I only test positive to the DGP IGA test and I had moderate to severed intestinal damage. Why? Doctor's are stumped. Maybe the Hashimoto's had something to do with it. I can also tell you that my endoscopy looked good -- no visual damage. Again, my biopsies revealed a Marsh Stage IIIB (mod to severe damage).

Perhaps before you write off celiac disease (and after you receive your biopsy results and let's hope they took plenty of samples), you could ask for the other tests:

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

[roomorganizing]

Okay.....this may be out of line since I'm not a doctor, but is anyone else totally frustrated that the only tests run are the tTg's?!?! My understanding is that, these days, celiac is just as likely (or maybe more so) to show up with the DGP tests and that running only the tTg's (IgA and IgG) is for screening purposes and for rechecks after diagnosis, not for all out initial testing. My son was diagnosed at 16 (five years ago) with only the tTg which lead to the endoscopy for confirmation, and I consider ourselves very fortunate! Our doc at the time knew almost nothing about celiac but had just gone to a presentation at our local hospital two weeks prior to hear Dr. Fasano speak. He requested the IgA serum and both tTg's out of simple curiosity. And my son's only symptoms were short stature and delayed puberty! We have since moved to a different state, and if our daughter's GI had only run the "screen", we would still be in the dark about her. Her DGP IgG was 160 with <20 being negative, and all the others were within normal ranges. I've been through this testing thing with all three of my brothers, an uncle (my dad had celiac disease), and 3 friends....all who asked for a celiac panel and all who got only the tTg tests! Uuggghhhhhh!!!

 

All I ask is that you know what tests are included in a true celiac panel and ask the doctor to see what he/she is ordering, and/or give them the list. Every time it has to be redone because it wasn't all inclusive in the first place is more money out of your pocket.

 

Rant over....for now....

[cyclinglady]

Okay.....this may be out of line since I'm not a doctor, but is anyone else totally frustrated that the only tests run are the tTg's?!?! My understanding is that, these days, celiac is just as likely (or maybe more so) to show up with the DGP tests and that running only the tTg's (IgA and IgG) is for screening purposes and for rechecks after diagnosis, not for all out initial testing. My son was diagnosed at 16 (five years ago) with only the tTg which lead to the endoscopy for confirmation, and I consider ourselves very fortunate! Our doc at the time knew almost nothing about celiac but had just gone to a presentation at our local hospital two weeks prior to hear Dr. Fasano speak. He requested the IgA serum and both tTg's out of simple curiosity. And my son's only symptoms were short stature and delayed puberty! We have since moved to a different state, and if our daughter's GI had only run the "screen", we would still be in the dark about her. Her DGP IgG was 160 with <20 being negative, and all the others were within normal ranges. I've been through this testing thing with all three of my brothers, an uncle (my dad had celiac disease), and 3 friends....all who asked for a celiac panel and all who got only the tTg tests! Uuggghhhhhh!!!

 

All I ask is that you know what tests are included in a true celiac panel and ask the doctor to see what he/she is ordering, and/or give them the list. Every time it has to be redone because it wasn't all inclusive in the first place is more money out of your pocket.

 

Rant over....for now....

I hear ya! I tested positive on only the DGP IGA and the rest of my celiac disease panel was negative two and half years ago. Yet my biopsies revealed a Marsh Stage IIIB (moderate to severe). Thank goodness my GI ordered the complete panel! My symptom was primarily anemia and no GI issues. I went in for a routine colonoscopy (yeah, I am over 50!). Our family doctor did order the complete panel for my daughter (due to my results) but the rest of my extended family have only received the TTg screening. Slowly they are getting retested. I sent them my results figuring that this might be the way my family tests out and to encourage their doctors to order the complete panel. My new insurance/provider only allows the TTG screening for PCPs and only GI docs can order the complete screening. My provider is new and I found this out when I asked to be screened after a severe glutening in July (still recovering from it!). I had to get a GI appointment (needed to anyway) to get the complete panel. Once again, only the DGP was positive.

It is frustrating. I know that I am not the only celiac in my genetic family!

[nvsmom]

Our doctor refused to run any other tests unless the tTG IGA came back positive, in which case they would do the EMA IgA.  Pretty sad.

[iamashley07]

I received a call back from the doctor who took the biopsies. He said there was intestinal damage but nothing severe and was actually hardly any there and said "borderline celiac" and recommended going gluten free. I had my follow up with the GI after wards and she was hesitant throw out a full blown Celiac Diagnosis and instead put on my problem list "Gluten Enteropathy" (when googled comes up Celiac Disaease) lol. The biopsy doc, the GI doc and the dietitian all said to go gluten free and not half assed. I am thankful for answers and am learning as much as I can. On my way to the endoscopy I was feeling silly but now am so glad I pursued and followed up. I HOPE this is the answer to my health problems and I start to feel better soon! Thank you all for your input.

I am a little confused about what to call this diagnosis though... lol It's not celiac according to the docs, but not just an intolerance as there was damage but I feel weird saying I HAVE celiac.

I also noticed just going off gluten for only four days, by stomach wasn't nearly as hard as usual! I know in the last two and half weeks I've ingested gluten but I am learning and am taking out the obvious for now.

[iamashley07]

I should also add they did find increased lymphocytes in the biopsies.

[Galixie]

Is "borderline celiac" similar to being "only a little pregnant"? Can you have only a little of an autoimmune disease?

There is a small portion of actual wondering in my question as well as some facetiousness. I think you're probably justified in calling it celiac. It sounds like both of those doctors are acknowledging that gluten is the cause of the damage. I don't know why they would avoid the word celiac, but it sure sounds like that is what they are saying.

[nvsmom]

I would just say you have celiac disease, but it was caught in the early stages. A gluten sensitivity NEVER causes damage unless it is celiac disease.