Covid virus/vaccine triggering celiac

[Bronwyn W]

  On 4/4/2022 at 5:01 PM, trents said:

Blistering is one of the characteristics of DH that sets it apart from other "rashes" though, DH is not considered a rash. I would recommend getting it biopsied for DH the next time you have an outbreak. Of course, it can be difficult to get a dermatologist appointment when you need one on short notice.

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Thank you so much for your amazing support. As it turns out, I have a bout right now. It always seems to manifest when I am exposed to too much sun 🤷🏼‍♀️ but then again, it may be food - I really don't know 🙈 and must be guided by the professionals. 

[trents]

If you do go in to get it biopsied make sure you explain to the doctor you specifically want it checked for DH.  Remember, a lot of physicians just don't have celiac disease on their radar. They are operating on very dated information from medical school. Those of us veterans in the celiac community have discovered we can't assume any doctors will automatically think to check for celiac disease. We have found we need to be armed with knowledge and be appropriately assertive, i.e. be our own advocates.

[Bronwyn W]

  On 4/4/2022 at 6:29 PM, trents said:

If you do go in to get it biopsied make sure you explain to the doctor you specifically want it checked for DH.  Remember, a lot of physicians just don't have celiac disease on their radar. They are operating on very dated information from medical school. Those of us veterans in the celiac community have discovered we can't assume any doctors will automatically think to check for celiac disease. We have found we need to be armed with knowledge and be appropriately assertive, i.e. be our own advocates.

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💯 % I will 🙏🏻

[michyaz]

I am new to this forum and have been reading for an hour straight. I have not been formally diagnosed yet, but the more I have read the last few months the more I think what I have is Celiac. My blood test came back negative, but I have a diagnostic colonoscopy and endoscopy scheduled for the 20th. In August of 2020, I got very sick with what I believe was COVID. I lost taste for three days and had severe gastro issues (which at the time was not widely reported as a COVID symptom). I had three separate tests done at three separate providers (my SIL is in healthcare so that helped). All three were negative. However, it took me almost six weeks to fully recover. However, since then I have had worsening fatigue, brain fog, reflux, chronic (sometimes violent) diarrhea, nausea, temperature sensitivity, chronic dehydration, etc. etc. 

I recently switched GPs and the new one is amazing. I've been diagnosed as anemic with low blood volume (they keep throwing around chronic blood loss witch is scary). I've had stomach issues for years, but nothing like the last almost two years. There have been times I felt so ill I wanted to go to the ER and thought surely I have a horrible cancer eating away at my insides. Anyway, I could go on and on, but I want to say that the "illness" was definitely the start of this and I have been vaccinate and boosted once, so I really feel there is some sort of link to what I have and that illness.

[trents]

Welcome to the forum, michyaz.

Can you be more specific as to which blood test was run? There is more than one blood test that can be done to diagnose celiac disease. Do you have access to the results and could you post them here along with the reference rages for negative/positive?

You have many symptoms that are classic for celiac disease but also common for NCGS (Non Celiac Gluten Sensitivity). There are no tests for NCGS as of yet so celiac disease must first be ruled out.

Concerning your endoscopy, make sure they know that you want them to biopsy for celiac disease. Don't go gluten free yet. Going gluten free before testing, either the blood antibody test or the endoscopy/biopsy will allow some healing and compromise the results. The guidelines are to be eating daily two slices of wheat bread or the equivalent leading up to test day.

[michyaz]

  On 4/9/2022 at 11:09 PM, michyaz said:

 

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Thank you for your reply. Below are the tests they ran. My doctor did say the biopsy needs to be done since it’s not unusual to test negative on blood then positive on the biopsy. I will absolutely make sure they test for celiac. I have not stopped eating gluten. However, this last week I’m having a hard time eating anything because it’s making me so sick. This morning coffee with half and half  landed me in the restroom for 20 minutes. 
 

My heart just breaks for all living with this or anything similar.

This is taking a huge toll on my life right now. I work full time and I am completing my bachelors degree. I’m thinking of withdrawing from school temporarily because I can’t keep up. I also had an amazing job opportunity in Jan that I turned down because I knew physically I would not be able to handle it.

I and just very fortunate to have an amazing husband who is picking up the slack for me.

IgA = 430 does not list a range

tTgA = >.5

over 15 positive

Tissue Transglutaminase
Antibody lgA Result
Negative