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Covid virus/vaccine triggering celiac

Tintern21

By Tintern21
in Related Issues & Disorders

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Bronwyn W Apprentice
Bronwyn W
Posted
1 hour ago, 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.

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. 

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trents Grand Master
trents
Posted

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 Apprentice
Bronwyn W
Posted
14 hours ago, 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.

💯 % I will 🙏🏻

michyaz Newbie
michyaz
Posted

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 Grand Master
trents
Posted

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 Newbie
michyaz
Posted
7 minutes ago, michyaz said:

 

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

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      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
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      By Nicola McGuire · Posted

      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
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