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Hi,

I am desperate and I hope someone who has any knowledge about this will respond. I even wrote about penicillin shots and hughes syndrome yesterday. I got results for CRP and it seems so high. I am waiting to talk to the doctor over the phone but do you know anything about this. Thanks.

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Whoa!  Slow down!  A high CRP just means you have inflammation or infection anywhere in your body.  You have a sore throat right?  That might the cause of a high CRP.  Active celiac disease is another contributor.  Heck, my thyroid can cause a high CRP.   I read that it can take up to three years to diagnosis Hughes Syndrome.  Have you had clots?  As far as penicillin goes I read that it can impact some of the tests for Hughes.  But it sounds like you need the antibiotic.  I have taken the shots.  Back in the old days it was preferred.  You said that you reside in a less develped country.  Doctors might not have access to the latest and greatest, but penicillin is effective.  

I googled Hughes and penicillin and here is what I found:

https://labtestsonline.org/understanding/analytes/antiphospholipids/tab/test/

THIS IS REALLY IMPORTANT!  Your doctors should know if penicillin cause an adverse reaction for you.  They know your history and they wear a white coat.  I can only offer you comfort, friendship and a little common sense, but your doctor is best for medical advice.  

 

I hope you feel better soon! 

Edited by cyclinglady
Additional information.

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Thanks Cyclinglady, I really appreciate your support and being the voice of reason. I have been hiding most of this from my family until I know for sure what is happening.  I put them through so much already. I really do not want to be all dramatic on this forum but it is the only place where I can look for help and support in moments of despair. My family and a couple of great friend have been through thick and thin with me and I really feel bad to burden them with even more issues.

I really do not know how to feel anymore. I am just tired of dealing with all of this. Honestly, I am not afraid of celiac but all other possible AIs. It just seems that every time I get a bit more hopeful about getting better, I get knocked down. To my knowledge, when I was tested in another country, CRP was ok. Now, all of the sudden it is so high that it freaked me out.

The doctor that is thinking of Hughes seems to think it is possible I have it based on some specific tests she ran. She said if the results are the same the second time around, it means I have it. I feel like I am going to end up being a ticking bomb (with possible blood clots and other cardiovascular problems). I still do not have my ANA and ENA results, RF came back negative and I am still so worried about lupus. High CRP was mentioned in relation to lupus, pneumonia, arthritis, pelvic inflammatory disease, and inflammatory bowel disease.

I have not had clots that I know of.  The healthcare here is not the best. You have to wait months for appointments and tests. We do have some good doctors but it is hard to get to them. If they do not have their own practice and they work at hospitals, you wait for them for a long time. The otolaryngologist has his own practice, so I was able to get to him faster. He said he feels safer giving me penicillin shots because of celiac disease so that he ensures that we avoid getting me glutened with antibiotics since I seemed to react to them the last time.

THANK YOU AGAIN especially for even looking up additional info.

 

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I completely understand your fear of getting additional autoimmune disorders.  But freaking out (anxiety) maybe contributing to the development of them.  

I have Hashimoto's thyroiditis, celiac disease, allergies, and diabetes (not typed).  I guess I really don't want to know  what kind of diabetes that I have.  Eventually I will know, but I am dealing with it fine now and my doctor is happy.  When I got my Hashi's diagnosis I worried about the next AI.  Well, maybe I did not worry then, but it was in the back of my mind.  I had no idea that celiac disease would be the next AI disorder I would be diagnosed with.  My mom has Graves and Fibromyalgia.  My grandmother has RA and Lupus.  I am probably going to get something else but I could go crazy with worrying.  I think you need to find something that will help reduce your anxiety.  First, avoid a celiac  flare-up -- no gluten.  That is probably is your best defense.  Think about mediation, prayer or exercise.  I find that getting on my bike ? makes me happy.  Helping others does too.  It takes my mind off me!  

Hang in there!  

Hugs! ?


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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THANK YOU CYCLING LADY! I really try not to think about it but once I do not feel well, I start thinking of all changes that I have noticed happening in my body and combined with some bad test results, I get so scared. Thank you again for being there for me on Thursday. You helped so much.

Hugs.

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