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Very New To This.lots Of Questions

dragonsrebel

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dragonsrebel Rookie
dragonsrebel
Posted

I am very new to this site only being diagnosed two days ago(april 7,2008).I have to say i am very scared and very frustrated. Scared cuz I know nothing about celiac and frustrated because I have been misdiagnosed for 23 years. I have been through surgeries and test I know i probably could have avoided had i been properly diagnosed. I have suffered from the following > Insomnia, acid reflux, severe muscle pains, siatica, headachs, neck pain, numbness and tingleing in my face and arms, depression,anxiety, constant yeast and bladder infections, and skin irritations. I have no idea how many of these are caused by wheat. Altho im sure alot of them are. I have seen doctor after doctor anly to be told either nothing is wrong with me or sent for more tests which only come up negative. Finaly i was sent to the right doctor who only had to do a simple blood test.The blood test was postive. The doctor told me that normal levels are 4.0 mine were 99.2!!!!! I have been reading this forum non stop and have had a few questions answered but have many many more. I go for biopsy on april 28 and have no idea what is involved. If there is anyone who can help me with my questions please reply to this

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MELINE Enthusiast
MELINE
Posted

welcome to the forum!

It is actually a pitty that you had to wait for 23 years but unfortunately that is the case for many others in the forum. For me it was only 12 years....any way

You are going to have a biopsy.That's good. Your doc has to see yor intestine and see the damage. I promise you will not understand any thing. You are going to fall asleep and when you wake up the doctor will tell you it is over. Some feel a pain in the throat. I did not. But do not start the gluten free diet before the biopsy cause this will have an effect on the results.

You are scared cause you now nothing about celiac .Well the most important is that you have to stick on a completely gluten free diet for the rest of your life and if you do so all the symptoms will disappear as time goes by. If they are going to leave in 1 month or in 2 years no one can tell you. But they will eventually go away. The gluten free diet sound scary in the beginning but it is not.....there are so many products (chocolate, pasta, cookies) and so many recipes that you are going to have no problem at all. It is very important that you are very careful not to eat hidden gluten (cosmetics, shampoo, mouthwash, tooth paste, food that you consider to be innocent). You can get a lot of help in the forum as far as hidden gluten is concerned.

I don't know what else you need to know......What are your questions???

Meline

happygirl Collaborator
happygirl
Posted

Post your specific questions---I'm sure that many members will be happy to help in any way they can.

jmcbride4291 Contributor
jmcbride4291
Posted

Unfortunatly you must stay on gluten for biopsy. However your choice since blood positve, the only 100% test is the gluten free diet. Biopsy and other tests can come up negative and are very wrong. Once you do go gluten free be very careful with foods. Make sure you speak to the manufactures. Some state glute in ingredients, some do not and it could be in natural flavorings or citric acid, or coloring. It is not as hard as it sounds. The biggest hurdle is shopping in the begining. Yes Celiac can cause a great many other health problems. Bone, thyroid, diabetes, cancer, neurologic, etc. You name it. When in recovery if you accidently ingest, you will know, becausse your body becomes more sensitive. You might also crave the exact things that make you sick. This will change in most cases. Once gluten free your likes and dislikes can change. Infact your head will clear and its almost like you never got to meet the real you due to your whole life you been basically poisoned and it affects your brain. I am not an expert but have done extensive research and it was not too long ago when I went gluten free. Many doctors do not have extensive knowledge. Becareful of medicines. Tylenol, iboprophen, and prescription. Many can contain gluten. Im sure many in this forum can verify this and all our members are very helpful. Do not hesitate to contact me, even by personal message. If I can help I will. Good luck!

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      Does High DGP IGA Typically Mean Celiac?

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      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
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      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
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    • Skg414228
      Does High DGP IGA Typically Mean Celiac?

      By Skg414228 · Posted

      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
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