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Years Of Searching

Soconfused27

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Soconfused27 Rookie
Soconfused27
Posted

Please bare with me, this is going to be a long post. I am here in search of opinions. I have been unwell for at least 6 years, maybe most of life but most noticeable the last 6 years. Over these years I have had an increase in symptoms and after numerous doctors visits I was told its all anxiety.

My symptoms include weight loss, hair loss (head and eyebrows), memory loss, cognitive disfunction, anxiety, I get this feeling of having a cloudy head, can't think, going to pass out feelings sometimes after eating sometimes not, joint pain and stiff joints, swollen fingers and puffy face in the morning, dark circles under my eyes, bloodshot eyes, tiered, headaches, swollen glands in my throat, severely inflammed gums and sore mouth. My sympoms seem to come and go but I never really feel 100%.

At my wits end last week in serious pain again I went to the doctor with a list of tests. I actually found a caring doctor who decided to take me on. One of the tests was anti-transglutaminase IgA. I have never heard of this one before and since it was high I decided to google it which led me here.

It says on the form 8.6 with a range of <7.0 so its a weak positive. Other then that I have a positive ANA but that's it everything else looks good. I see the doctor on Friday and assume more tests will be ordered.

My question is does such a weak positive mean anything? Can IgA be indicative of anything else? Can celiac cause all these symptoms that come and go?

Thanks in advance

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1desperateladysaved Proficient
1desperateladysaved
Posted

Your list sounds like lists I have read on here.  Sorry you have been suffering.  I hope you are really going to be able to solve this now.  I don't know much about the specific tests, but trust someone will be able to help.  keep us posted on further tests.

 

D

nvsmom Community Regular
nvsmom
Posted

A weak positive tTG IgA usually means celiac but your symptoms of thinning hair, memory and cognitive problems, anxiety, swollen glands, puffy face and eyes, and headaches are also symptoms of hypothyroidism....outer edges of eyebrows thinning out is CLASSIC hypothyroid symptom. You might want to ask your GP about thyroid testing. Good thyroid tests are:

  • TSH - should be near a 1
  • Free T4 and Free T3 - should both be in the upper 50-75% range of your lab's normal reference range
  • TPO Ab - should be very low

A weak tTG IgA can also indicate Crohn's, chronic liver disease, a severe GI infection, and diabetes. But as I said, it usually indicates celiac disease. It is a fairly specific test.

 

Your symptoms are also celiac symptoms so you might want to do further testing. The celiac panel is:

  • tTG IgA and tTG IgG (positive tests indicate intestinal villi damage)
  • EMA IgA (this picks up more advanced damage to the villi and is similar to the tTG tests)
  • DGP IgA and DGP IgG (a newer and really good test)
  • total serum IgA (a control test to make sure you don't get false negative in the other tests)
  • AGA IgA and AGA IgG (older less reliable tests that show gluten sensitivity rather than intestinal damage)

There is also the endoscopic biopsy for further testing.

 

The tests are discussed in the following report on pages 11-12: Open Original Shared Link

 

Make sure you continue to eat gluten prior to testing or it could negatively affect your results.

 

Good luck. I hope you are able to find some firm answers.

Soconfused27 Rookie
Soconfused27
Posted
  • Author

Thank you for your reply! If I have finally found an answer then I will be extatic. Even if it wil be very difficult, I will finally have an answer and be able to get better. My memory has gotten so bad lately!

I have my thyroid function tested numerous times, and while my numbers aren't ideal they are still within range. Also all my antibody tests are neg (tpo, tgab and TSI) so even if mild hypothyroidism were at play it would be secondary I would think. My eyebrows are falling out all over, the outer edge and the inner edge.

I also should add that my CBC, liver function and kidney function were normal. I also had a normal CRP and sed rate. They also tested for anti ds DNA and ENA which were neg.

Since I have a long list of symptoms, I don't have a clue what's going on. This is the first test that's shown anything to date. I also get chest pain, but that is suspected to be muscle. I bruise really easy, and have bad scarring acne that came from nowhere. Whatever this is, it's in my family, undiagnosed.

The only gut issues I've had are chronic constipation but I never thought anything of it since its been that way since I can remember (my daughter was born like this too). No matter what I eat it doesn't really help. There was a few times where I remember lying awake at night with this strange gut pain where it hurt so bad I didn't want to move, but that was only a few times so I thought nothing of it. I also get this gassy feeling in occasion but no gas comes. Other then that my gut seems pretty inactive (literally).

Honestly through out this search, celiac never crosse s my mind . I didn't think it could affect my head! Thanks for the reply... Hoping for answers on Friday.

nvsmom Community Regular
nvsmom
Posted

Thank you for your reply! If I have finally found an answer then I will be extatic. Even if it wil be very difficult, I will finally have an answer and be able to get better. My memory has gotten so bad lately!

I have my thyroid function tested numerous times, and while my numbers aren't ideal they are still within range. Also all my antibody tests are neg (tpo, tgab and TSI) so even if mild hypothyroidism were at play it would be secondary I would think. My eyebrows are falling out all over, the outer edge and the inner edge.

I also should add that my CBC, liver function and kidney function were normal. I also had a normal CRP and sed rate. They also tested for anti ds DNA and ENA which were neg.

Since I have a long list of symptoms, I don't have a clue what's going on. This is the first test that's shown anything to date. I also get chest pain, but that is suspected to be muscle. I bruise really easy, and have bad scarring acne that came from nowhere. Whatever this is, it's in my family, undiagnosed.

The only gut issues I've had are chronic constipation but I never thought anything of it since its been that way since I can remember (my daughter was born like this too). No matter what I eat it doesn't really help. There was a few times where I remember lying awake at night with this strange gut pain where it hurt so bad I didn't want to move, but that was only a few times so I thought nothing of it. I also get this gassy feeling in occasion but no gas comes. Other then that my gut seems pretty inactive (literally).

Honestly through out this search, celiac never crosse s my mind . I didn't think it could affect my head! Thanks for the reply... Hoping for answers on Friday.

 

I too had a thyroid that measured "normal" but not quite ideal (a TSH of 2.5-6.5) for 15 years. Finally, a year ago, my TSH went into the teens and they believed me. I can honestly say that a TSH of 3 felt NO different than a TSH of 14 for me. My TSH put me at sub-clinical but my Free T3 and Free T4 were at the very bottom of the normal range. After one year of upping and tweaking my meds, I am now on a full replacement dose of thyroid hormones.... for my subclinical TSH scores!  :rolleyes:

 

And my TPO Ab was normal too, at the upper limit of normal, but still normal.

 

I would push to have all the thyroid tests done. The Free T's tell the actual amount of hormones available in the body where as TSH is a pituitary hormone that indicates how hard your pituitary thinks your thyroid should work.... not always accurate.

 

Constipation is another classic hypothyroid symptom and a celiac symptom too, although less widespread.

 

I too was tested for the rheumatic diseases... The Rheumatologist thinks celiac disease is the cause of my problems (I hope she's right because after 1 year gluten-free, I hope to turn a corner soon). My GP thinks I have a rheumatic problem (lupus?) and a new orthomolecular doctor I went to thinks most of my problems are due to unexplained hypothyroidism.... I just want to smack all their heads together, steal their prescription pads and handle it all myself!  LOL ;)

 

Good luck on Friday.

pricklypear1971 Community Regular
pricklypear1971
Posted

Ensure you get copies of all labs, and that you get all of the celiac antibody tests and the free t3/4 thyroid tests.

I'd request a trial of thyroid meds, regardless of tests. You may be subclinical. Even if you have to go to a witch doctor, try thyroid meds.

Soconfused27 Rookie
Soconfused27
Posted
  • Author

Thank you! Actually thyroid was my first route and with my numbers I'm not sure even my great new doctor would agree to a trial. My present numbers "while in a giant flare up of symptoms" are

Tsh- 2.37. (0.2-4.0)

Thyroxine free 10.3 (7.5-21.1)

Free t3 5.0 (3.5-6.5)

Tsh receptor antibody <0.30. (<1.75

Anti-thyroglobulin <20 (<40)

Anti tpo (in april) <10 (<50)

Anti dsdna 7 (<120)

ENA screen negative

Everything else is normal as well

I have normal ferritin, and vit b12. It could be better but def still in that normal range. Magnesium is good, calcium is good.

I have finally found a doctor who is thorough and willing to listen so I'm hoping this is a means to an end.

I also have sun sensitivity, and strange skim issues. The worst by far is the head is the head issues though. Thanks again for the help

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frieze Community Regular
frieze
Posted

Thank you! Actually thyroid was my first route and with my numbers I'm not sure even my great new doctor would agree to a trial. My present numbers "while in a giant flare up of symptoms" are

Tsh- 2.37. (0.2-4.0)

Thyroxine free 10.3 (7.5-21.1)

Free t3 5.0 (3.5-6.5)

Tsh receptor antibody <0.30. (<1.75

Anti-thyroglobulin <20 (<40)

Anti tpo (in april) <10 (<50)

Anti dsdna 7 (<120)

ENA screen negative

Everything else is normal as well

I have normal ferritin, and vit b12. It could be better but def still in that normal range. Magnesium is good, calcium is good.

I have finally found a doctor who is thorough and willing to listen so I'm hoping this is a means to an end.

I also have sun sensitivity, and strange skim issues. The worst by far is the head is the head issues though. Thanks again for the help

what is your B12 level, commonly the number used in the USA is much too low....it should be over 500.

Soconfused27 Rookie
Soconfused27
Posted
  • Author

I am in canada, but my number comes in around 250 all the time with the range being >150 pmol/L.

My ferritin is always between 30-40 with a range of 15-200 ug/L. I eat alot of red meat and green vegetables.

Vitamin D hasn't been tested in 4 years but when it was it was 94.

frieze Community Regular
frieze
Posted

much too low,  good luck

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