New To This

[jbuckeye]

Hi--it's the weekend, and I just got a message from my gastroenterologist that my tTg came back at a 78.1 I'm supposed to follow up with her for "further testing and education regarding a strict gluten-free diet."

I'm almost 46 and have had a life time of stomach discomfort, so this is bittersweet news.

My questions are:

Is there any other reason a tTg can be high besides celiac disease?

The websites I've read are scaring me because of the risk of cancer. How scared should I be?

Thanks for anyone's help.

[Rikki Tikki]

I think that is a pretty high number, so I would imagine that you do indeed have celiac. I don't know of another reason to have such a high number. The further testing is probably an endscopy, but there is no guarantee that they will get the part of the intestine that has damage or that they damage is extensive enough at this point to show. Although, if you have had a lifetime of problems it probably will confirm it. Many doctors feel the endscopy is the gold standard for diagnosis. I am not one that feels the endscopy is a necessary test and probably would not have done it if I had actually understood that a high positive on the blood test was sufficient. She might be sending you to a nutirtionist and people have had varying degrees of sucess with one. I have found that I have received the most helpful and beneficial information from people on this board.

If you stay on the gluten free diet then you cut the risk of intestinal cancer quite a bit. I think what you are feeling is what a lot of people feel when first diagnosed, relief that they finally found the cause, usually after many years of being told it's stress, depression and many other diagnosis, but if you are a woman it's usually that it's all in our heads, then comes the daunting task of figuring out what actually contains gluten and then you become quite comfortable with feeling better and getting your life back.

So welcome, and I am sure you will get a lot of help here! If you have any questions, you can ask anything, no matter how personal and someone will have experienced it, we have all been there and done that. Glad you found your way to this site

[CarlaB]

I'm 43, my biopsy came back negative, but I had been eating gluten-free for a while before it, so I'm just relying on a stool test for antibodies for my diagnosis. That's less proof than you have already.

I, too, have had a lifetime of stomach problems. Once I couldn't even hold a job, and many times I've been to the er for and IV for rehydration. My doc (ob/gyn for my yearly checkup) told me to quit looking for clinical proof because my dietary response is clinical proof.

I've been gluten-free since December, and this is the first time I have felt good all the time in my life! This is not a diagnosis to be scared of (if you eat gluten-free, your chance of cancer is normal), or to dread. You will feel so much better. Once you get gluten-free, you will realize how many other symptoms you have from your reaction to gluten. There are many foods that are gluten-free naturally -- meat, chicken, fish, eggs, fruit, vegetables, rice, pototoes. I would start with those. It's basic and healthy. As you get used to the diet and start feeling better, add to it with gluten substitutes, etc. I still basically eat that way, but tonight I served a gluten-free lemon-vanilla pound cake with frosting for dessert!! It was too die for!!

I don't know the answer to your question about tTg, so I'll save it for someone else. My tTg was 60 on a scale of under 10 being normal. I think it's pretty specific, but there are people here who know a lot more about diagnosis than I do.

Welcome!

[jbuckeye]

Thank you both for your replies. It helps to know there are sites like this where I can go for info. and advice!

[lovegrov]

Don't know of any other reason for a ttg that high. You've got celiac.

Having celiac does indeed increase the risk of certain cancers (although it drops lower when you stay gluten-free), but the risk stays low even when you're not gluten-free.

richard

[jbuckeye]

Sigh....

Should I go gluten-free immediately, or do I need to wait for the further testing the doctor mentioned? (the biopsy, I guess)

I hate to think I'm "poisoning" myself by continuing to eat gluten so that I optimize results for a test. Especially when my stomach sticks out about 4 feet.

[Rikki Tikki]

Knowing what I know now I would answer that question by:

I will feel much better once gluten free

How soon do I see the doctor?

How badly do I feel I need the biopsy?

My thoughts now would be I don't want to feel bad another day

I couldn't possibly see the doctor fast enough

I don't really need the official 100% diagnosis for several reasons, one I don't need to have it on my insurance record.

Hope it helps

[jbuckeye]

This does help, thanks. I will be able to sleep tonight, and I will call the doctor first thing tomorrow.