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Could It Be Celiac? (Waiting For Blood Results)

tfr

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tfr Newbie
tfr
Posted

Hi,

 

  I'm a 36 year old male and since my early twenties I've had some problems with panic attacks (fortunately these seem to be gone for some years now), anxiety, intolerance to milk (haven't drank it for at least 8 years), persistent fatigue, apathy (I'm never too happy or sad), irritability and abdominal discomfort and/or migraines after eating some foods (some wines, liquor and ciders are a big no no as they cause sinus congestion leading to migraine). I also have seborrheic dermatitis in my face and scalp which seems to get better or worse according to weather and food intake (though the doctor seems to dismiss any relation with diet or weather). I've also been very skinny all my life (currently 50kg/110lbs, which is nearly the highest weight I've ever had).

  I've dismissed these symptoms for many years as unrelated to each other or due to stress, but recently I've began to challenge this and seriously think at least some of them might be related. This past September I went 2 weeks gluten free to see if symptoms would improve but wasn't sure of the result as I was on vacation and so also less stressed out. The thing is that when I got back to eating gluten I had the worst dermatitis rash I ever had to date and developed an external otitis on the left ear (never had otitis before in my life and it is possible that it was due to the dermatitis attacking the ear). It took nearly a month for the skin to go back to normal (in my case, dry skin but not scaling too much).

  Two weeks ago a couple of fingers on my right hand began to swell on the articulations and spread out to most of the hand giving the fingers an appearance of sausages. Went to a rheumy and have a probable diagnosis of Psoriatic Arthritis (though I have no psoriasis on the skin, at least yet) :(

  With all this going on I decided to also schedule an allergies consult to ask if there was some allergy that could be related to any of this symptoms and she told me to have blood work for possible celiac. The tests are to tTG-IGA, total IGA and total IGE(PRIST). They should be ready in 2 weeks or so. She also wants me to go to a GI and do an endoscopy but I rather wait for the blood results first, which among the blood work requested by the rheumy should confirm the diagnosis of the arthritis.

  Anyway, my question is if any of you had similar symptoms to this or I just happen to have the bad luck of getting all this sort of unrelated problems. Just to be sure, as soon as I did the blood work yesterday morning, I went 100% gluten free and will remain so at least until the results are ready. I guess its better to be safe than sorry.

 

All the best 

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cyclinglady Grand Master
cyclinglady
Posted

Sorry that you are unwell!

But until all testing is complete, you should continue to consume gluten! Here is a link to the University of Chicago's celiac website regarding testing (and so you are not just getting information from a layperson on a forum....):

Open Original Shared Link

The blood test you had was only part of the celiac blood panel. If I had my GI had not ordered the complete panel, I never would have received my diagnosis. I had moderate to sever intestinal damage and my main symptom was anemia.

good luck!

tfr Newbie
tfr
Posted
  • Author

  Thank you for your reply.

  My hand has thankfully been gradually getting better over the past 3 days, probably due to the prescribed NSAID. My reasoning to get gluten free imediately was to try and eliminate the possible "offending" gliadin from the body until I get the confirmation that it is not related to the psoriatic arthritis (or otherwise).

  I understand though that the correct procedure would be to wait for the blood panel and if needed (tTG-IGA coming back positive or if it comes negative along with a low total IGA) undertake the endoscopy in order to check for villi damage. The thing is, I'm not so sure I'm willing to submit to such an invasive procedure just to confirm the diagnostic since, I've understood it correctly from some sources, it won't affect the outcome of treatment that is to completely remove gluten for good.

 

  Regards

cyclinglady Grand Master
cyclinglady
Posted

Autoimmune disorders do seem to run together. If you do have celiac disease, it can take up to three years to resolve symptoms. A few weeks, normally does not make a huge difference in symptom reduction.

The choice is yours, but going gluten free for those with celiac disease or Non-celiac Gluten Intolerance is a lifelong commitment. Without biopsy confirmation, I could not personally make that commitment. It also allowed for me to set a benchmark for future biopsies to insure dietary compliance, rule out other gastrointestinal disorders and help other family members to get testing for celiac disease with or without any symptoms as well as getting better support medically and emotionally.

Again, my TTG was negative and my total serum IGA was normal. I am thankful that my GI ordered a complete panel:

Complete Celiac Blood Panel

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA - a control test

AGA IgA and AGA IgG - less reliable older tests

endoscopic biopsy - make sure at least 6 samples are taken

Good luck!

GFinDC Veteran
GFinDC
Posted

Hi Tfr,

 

Welcome to the site! :)

 

You may want to read up on dermatitis herpetiformis (DH).  DH is an auto-immune condition that occurs in people with celiac disease.  People with DH may not "test well" on the regular celiac disease antibodies tests.  Sometimes they have to get a skin biopsy of the area near the lesions to detect the antibodies in the skin.  The IgA antibodies build up in the skin.  If you do have DH then you have celiac disease even if the blood antibodies aren't detected.

tfr Newbie
tfr
Posted
  • Author

Hi GFinDC,

 

  I've checked it out but I don't think I have DH. No blistering itchy rash as far as I can remember.

  Unfortunately, since yesterday, I've 2 swollen fingers again and a new symptom. All my joints seem sore, popping and cracking when I do some movements (elbows, knees, ankles) though they no not seem swollen. This is completely new to me and started all of a sudden.

  All the blood tests have come up negative, the bad part being that I still won't have a definite diagnosis beyond the tentative Psoriatic Arthritis based solely on the Reumhy's physical evaluation. The tTG-IGA test has also come up negative with a normal Total IGA count, so I guess that might exclude celiac to a fair degree.

  On a positive note, its been a week since I went gluten free and my seborrheic dermatitis has completely cleared... I mean, I guess it could be a coincidence but I can't remember the last time my skin was this good. I guess the only way to be sure would be to reintroduce gluten again. Not quite sure what to do next though.

 

All the best

nvsmom Community Regular
nvsmom
Posted

 All the blood tests have come up negative, the bad part being that I still won't have a definite diagnosis beyond the tentative Psoriatic Arthritis based solely on the Reumhy's physical evaluation. The tTG-IGA test has also come up negative with a normal Total IGA count, so I guess that might exclude celiac to a fair degree. 

 

The tTG IgA is just one celiac disease test, and it has a false negative rate as high as 25%, which is not all caused by a low serum IgA.  This World Gastroenterology report on celiac disease (pages 10-12) discusses the tests and how sensitive and specific to celiac disease they are: Open Original Shared Link As you can see, results are more reliable if you get more tests run.  Some people are positive only in the IgG based tests even when IgA levels are normal.  Some are only positive in the DGP tests and others are only positivein the biopsy.  If you suspect celiac disease, you should get more tests done.

 

Arthritis is a symptom of celiac disease. It was one of my worst symptoms before going gluten-free. Actually, it was my worst symptom until I had been gluten-free for about 9 months.  If you suspect celiac disease is causing the arthritis, give the gluten-free diet at LEAST six months before yu judge it's effectiveness.  Arthritis is one of the slowest symptoms to improve.

 

Best wishes.

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