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Please help me understand all of this.

Crysvicca

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Crysvicca Newbie
Crysvicca
Posted

I suffer from so much more than Celiacs. That my life is miserable and I'm looking to have a little relief of some sort. I did the gluten free diet for 8 1/2 months felt no different. This is my most current celiac panel. Could someone please put this in English for me.  Thank you in advance.

Screenshot_20161002-235006.png

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Your antibody tests are still positive. Have your numbers gone down from when you were diagnosed?

It can take a long time to heal but you should be feeling at least a little better. How strict are you with the diet? Do you live in a house with gluten eaters? If so what precautions are you taking? Do you eat out at restaurants or non-celiac folks homes?

You should read the Newbie thread at the top of the Coping section to make sure that you are doing all that you have to do to keep yourself safe.

You mention having other issues besides celiac. You may be surprised how many of those clear up once you have healed.

GFinDC Veteran
GFinDC
Posted

Hi C,

Yep, you are still positive on the gliaden antibodies.  Both IgA and IgG are positive and you have the DQ2 gene for possible celiac development.  Ravenwoodglass has it right.  I assume you are still eating gluten-free?  It might be time to look hard at your diet and see where gluten might be sneaking in.

Irene Joanne Explorer
Irene Joanne
Posted

I still tested really high on my celiac test after six months. I'm getting it done again at the end of the month- that will be a year then. I'm not optimistic since I feel awful most of the time still. I do know that some of the problem is food sensitivities other than gluten - also fibromyalgia. It's so depressing though- because honestly- I feel worse in general now than I did before I was diagnosed. I am extremely careful with my diet- but I do live in a household with gluten eaters. 

Crysvicca Newbie
Crysvicca
Posted
  • Author
12 hours ago, Crysvicca said:

I suffer from so much more than Celiacs. That my life is miserable and I'm looking to have a little relief of some sort. I did the gluten free diet for 8 1/2 months felt no different. This is my most current celiac panel. Could someone please put this in English for me.  Thank you in advance.

Screenshot_20161002-235006.png

No I am not still doing the gluten free diet. I know that sounds horrible. My GI tract is paralyzed and does not work at all.  There is nothing medically they can do anymore now all that is left is surgery. So as of right now I enjoy the small things in life. Because when I have my surgery I will be put on TPN and be NPO for the rest of my life. If you would like me to go into further details I will. As to what else is wrong with me. So you all can see and understand and help me with the whole picture. So with my results how bad is the Celiacs because the doctor believes I have lymphoma from the gluten. I just found out I had Celiacs in 2014. Thank you all in advance for your time consideration understanding time and help

Crysvicca Newbie
Crysvicca
Posted
  • Author
3 hours ago, Irene Joanne said:

I still tested really high on my celiac test after six months. I'm getting it done again at the end of the month- that will be a year then. I'm not optimistic since I feel awful most of the time still. I do know that some of the problem is food sensitivities other than gluten - also fibromyalgia. It's so depressing though- because honestly- I feel worse in general now than I did before I was diagnosed. I am extremely careful with my diet- but I do live in a household with gluten eaters. 

That's how I felt like I got no relief and felt worse when I was doing the gluten free diet. I have numerous things wrong with me. If you would like me to go into further details I will be more than happy to so you have a better understanding of what is wrong with me. If interested just reply and I will open up and explain it all. Thank you for your time 

Crysvicca Newbie
Crysvicca
Posted
  • Author
8 hours ago, GFinDC said:

Hi C,

Yep, you are still positive on the gliaden antibodies.  Both IgA and IgG are positive and you have the DQ2 gene for possible celiac development.  Ravenwoodglass has it right.  I assume you are still eating gluten-free?  It might be time to look hard at your diet and see where gluten might be sneaking in.

What does all that mean? IgA and IgG and dq2 mean and everything else that is extremely high. I have no idea what any of this means. Thank you for taking time to explain this to me 

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kareng Grand Master
kareng
Posted
2 hours ago, Crysvicca said:

 

What does all that mean? IgA and IgG and dq2 mean and everything else that is extremely high. I have no idea what any of this means. Thank you for taking time to explain this to me 

It means you have Celiac disease.   Sounds like your doctors have told you that, too.  But it also sound like Celiac might not be the whole problem and that you have some more severe health issues.  You can not expect a gluten free diet to take care of lymphoma and what ever else is wrong.  But, not being gluten-free will certainly add extra health issues and discomfort.

 

You really should be asking your doctors these questions.  They have the whole picture and can explain what is going on with you.

RMJ Mentor
RMJ
Posted

I am sorry you are having such severe problems.  You asked for the results to be put into English, I'll try.

The genotype and haplotype results are from genetic tests looking at genes related to celiac disease.  These confirm that you have the genetics to develop celiac disease.  About 30% of the population has these genes.

IgA - this is just a control test measuring all of your IgA (celiac related and not) to ensure that the other IgA tests are valid if they are low.  Your IgA is in the normal range and the other IgA results are high anyway.  IgA is short for immunoglobulin A, a type of antibody.  

Transglutaminase and endomysial Ab - Ab is an abbreviation for antibody.  These two tests are high/positive for celiac disease and show that your body is making IgA antibodies against yourself.  Celiac disease is an autoimmune disease, the body attacks itself.

Gliadin deamidated Ab - These tests are high and show that your body is making both IgA and IgG antibodies against part of the gluten molecule in wheat - another sign of celiac disease.

Continuing to eat wheat is like getting a booster shot - encouraging your body to continue to make the antibodies against itself, leading to more injury of the intestine.

I hope this helps.

ravenwoodglass Mentor
ravenwoodglass
Posted
1 hour ago, Crysvicca said:

No I am not still doing the gluten free diet. I know that sounds horrible. My GI tract is paralyzed and does not work at all.  There is nothing medically they can do anymore now all that is left is surgery.

You really need to get back on the diet.  Will it 'cure' everything that is wrong with you or not I certainly can't say. However celiac has over 200 symptoms and can impact all areas of the body not just the GI tract. That includes the nervous system.

There is a lot to the diet. More than just food. The trouble is well worth it in the end though.  Once folks are gluten free when they get glutened the reactions can be even worse than the symptoms they had before they went gluten free. When glutened it causes a spike in antibdies flooding the system.  This is a good thing as it is your bodies way of letting you know not to do it again.

Please read the Newbie thread and please get back on the diet.

Crysvicca Newbie
Crysvicca
Posted
  • Author

Thank you so much for explaining this all to me... It helped alot.... Now as for my doctor explaining all of this to me I go to the Cleveland Clinic and I have to wait till my next appointment. Which now I'm in intestinal rehab and transplant. I no longer see a doctor as I mentioned above there is nothing medically they can do anymore now all that is left is surgery so I now only see my surgeon and coordinator. So now I won't be seen again until they schedule my surgery consult.

GFinDC Veteran
GFinDC
Posted

I hope everything works out well for you Crysvicca.  Celiac disease affects the small intestine, while Crohns can affect the any part of the GI system.  There is an increased risk of lymphoma for untreated celiacs, but it is a small % (as far as we know) of celiacs who actually get it.  I've read somewhere in the past that the chance of getting lymphoma decreases after going gluten-free.  I don't know how closely researchers actually track such things though.

There is celiac condition called refractory celiac disease.  Refractory celiac disease is pretty rare.  Refractory celiac disease does not respond well to the gluten-free diet.  The immune system continues it's attack on the gut even after going gluten-free.  Anyway, most people feel some relief after a few months gluten-free.  Some continue to have symptoms for a much longer time though.  One research estimate was that symptoms resolve after 18 months gluten-free for most celiacs.  We are all unique and our bodies react to their own drummer.

kunger Rookie
kunger
Posted

My mom was diagnosed 6 years ago and it took her a very long time to heal. She had a list of foods that she could not eat because her body was so damaged. You may also think about getting a food allergy test done. Many of the foods she couldn't eat 6 years ago she can eat now.

I was just diagnosed last week and am having trouble wrapping my brain around this. Please get back on a gluten-free diet and continue to consult with your doctors. I am brand new at this for myself but I have seen my mom deal with this. It is not easy and it sounds like you have a lot going on. Please don't give up!!

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