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Questions About Testing

LookingforAnswers15

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LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

Hi all,

 

Hope your summer is going well. I have not written in a while. I have had ups and down and possibly got glutened but my reactions/symptoms are just weird that I truly do not know when I get glutened. I am still looking for doctors who will carefully look at me but I know I won't find them at the hospital where I was going to so I have to go to some private doctors, which will cost me an arm and a leg. Hopefully, I find a good one and s/he helps me. 

 

I need advice regarding testing. I was diagnosed with celiac and my anti bodies are still high and I want to see if I can do the blood test again and see where I am at now. Can you please tell me exactly which blood tests I need? I know that some of you have been great at giving advice regarding the what type of tests we need to get diagnosis but I am wondering which tests can be done just through the blood test. I really do not want to do gastroscopy right now.

 

Also, the doctor never told me about vitamin deficiency and nutrition. So, can you please tell me all the vitamins that we might be deficient of as celiacs, so that I can see if the new doctor can test me? I am still loosing hair :(. I was going to ask about Iron, B12, Vitamin D but I think there are other ones that I ask for. Maybe Magnesium ...

 

Also, if I am able to get them to test me for other auto-immune diseases, do you know which ones I need to request? I feel like I am starting this process all over on my own. The previous doctor tested me for some but has not explain which test was for what. I googled what was written on the results, but I am still not certain which tests are for what. 

 

Very random and possibly stupid question: Do celiacs get grey hair sooner than others? Today I was shocked when I found grey hair and I feel like I am young for that :(.

 

 

Once again, THANK YOU!!! =)

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ravenwoodglass Mentor
ravenwoodglass
Posted

How long ago were you diagnosed? Were you just diagnosed in June when you joined the board? If so please be aware that it can take time for the antibodies to go down. Most doctors will want to wait 6 months or so before they recheck.

If in addition to the vitamin levels you mentioned if they can also check your B vitamin levels that might be a good thing. 

One of the most common of the other autoimmune issues that we can get is throid issues so do make sure that get checked.

It can take a while for hair to stop falling out and it usually takes about 3 months to notice regrowth once it starts. As to grey hair I got my first one in my teens. Don't know if that was celiac related or not although I was celiac even back then.

Not much time but I am sure others will be on to answer you a bit more fully.

cyclinglady Grand Master
cyclinglady
Posted

Here is an old blog from member, Jebby who has celiac disease and is a PED doctor:

https://www.celiac.com/gluten-free/blog/1038/entry-1822-up-to-date-management-of-celiac-disease-in-adults/

It discusses all the care needed after diagnosis.

Edited: the name is Jebby, not Jebay or Jenny! darn ipad!

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Hi all,

 

Ravenwoodglass and Cycling lady, thank you so much. I knew I could count on your advice =). I have noticed that a few members, including two of you :), are always willing to help others.

 

Ravenwoodglass - I was diagnosed a year ago and my antibody levels were very high: 230 and now 120 so they are dropping but I was hoping it would have been much better by the last testing. I just hope that they do not go up again because I think I was accidentally glutened. I am visiting family in a different country so I am thinking (if possible) to have them retested again (just a blood test) to see where I am at right now and if they can tell me anything more. My hair loss is weird...sometimes I loose less, sometimes more but overall it makes me sad to look at my photos from 3-4 years ago. I know that my levels are still high but for a year I was so careful, never cheated so I really was hoping for better results. Now, while I am visiting, I feel like I am surrounded with gluten (since I am the only one with celiac) and although my family tries very hard not to cc my food and I've got my own pots and dishes, it is easy for them to forget some small things because they are not used to having to deal with this. 

 

Cyclinglady- This is perfect. I needed something like this. I will write it all down and take it to my appointment. I scheduled an appointment with a private gp. 

 

Dilemma: I am debating whether or not I should immediate disclose to him/her that I was diagnosed. Some friends from here recommended not to. It is supposed to be a routine medical check up where I discuss with gp my concerns and hopefully s/he refers me to other doctors. The reason for that is that I want to see what they think might be happening. I am looking for a fresh set of eyes to look at me carefully. I am afraid that they will consider that all of my other random symptoms that I have been worried about stem from Celiac if i immediately tell them that I am one. I am worried that it is easier to just accept someone else's diagnosis and run with that. I am sure that s/he will immediately ask me when I go there whether I have any chronic illnesses, but since I have never been to a doctor here regarding these issues I am worried that they will just say do not worry it is from Celiac and won't take a more careful look at me. What do you think? Should I mention it immediately?How should I approach it? I think I will and use it the reason why I want to be checked for certain vitamins? I also would like to see If I am allergic to other things but I am not sure if they offer allergy tests. I want to be as honestd open as possible but I am also a bit concerned because of the insurance. I had to buy a new one here and I am not sure if the doctors will be willing to refer me to the specialists  if they think i already have a diagnosis( since additional tests will cost them more money).  I want to be as honest and open as possible but I am also a bit concerned because of the insurance. I had to buy a new one here and I am not sure if the doctors will be willing to refer me to the specialists  if they think i already have a diagnosis( since additional tests will cost them more money). 

 

Miss Eloise - you are so sweet. I know you are going through a lot now but you still find time to write to many of us offering advice and support. Thank you. Please know that I am keeping you in prayers and I hope you start feeling better as well.

 

Once again, thank you all!

mbpin11 Newbie
mbpin11
Posted

How long should it take to get back the test results from a celiac serology panel including serum tests?

Thanks you for any help.

ravenwoodglass Mentor
ravenwoodglass
Posted

How long should it take to get back the test results from a celiac serology panel including serum tests?

Thanks you for any help.

Usually about 2 weeks.

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