Gi Doctor And Possible Celiac Diagnosis

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I was tested for Celiac 4 years ago, and was negative. At the time, I was being tested for everything imaginable to find out why I had severe fatigue, chronic pain, and some bad neurological symptoms.

I've since gotten better doctors - who've diagnosed me with Pernicious Anemia, an autoimmune disorder which affects the body's ability to absorb B12 from food (I give myself shots). Not working as well as it once did, so shots are now weekly. For my weekly migraines (they used to be daily), I take a daily preventative, an emergency triptan, and too much alleve, but I'm still getting a lot of migraines (and I have cut out all caffeine, chocolate, msg, and most processed food). I've gone from a size 14 to a 6 since September while eating anything I want. I thought it was a side effect of the migraine med. I thought the tingling in my feet and legs (and sometimes hands) was a side effect too. I have GI problems. I'm also having some intense pain in hands and feets that I thought was arthritis but isn't appearing on an xray. I have allergies and sinus problems as well.

My memory is shot, my fatigue is pretty bad & the GI is terrible at the moment. I'm also being treated for anxiety.

My primary care doctor didn't like the sound of all this - she thinks I shouldn't have so many 'little things' wrong. So she did more tests.

You could have knocked me over iwth a feather when she called to say that she thought I might have CELIAC of all things, especially when I had been negative before!

TTG - 35 (normal is under 7); Ferritin 6.8 (should be 11-306), Iron 62 (37-170) [apparently I'm not absorbing iron well, but I've still got some in storage] I can't take vitamin supplements w/o diarrhea or severe cramps.

So, on WEds. I see the GI doctor.

What will the GI doctor do? Does anyone have any ideas? What kind of information should I bring?

Do I have celiac disease? Could I have something else?

My p.c. doctor said to just go ahead and try eating as little gluten as possible. I haven't yet, because I haven't seen the GI guy yet, and I didn't know what he'd want to do. Is this right?

Sorry so long ... would appreciate any advice! I'm very nervous about the appt. and the dx.

[gfgypsyqueen]

You are lucky your pc dr even saw the signs of celiacs. the dramatic weight loss with no dieting is a big indicator of Celiacs. Most pc Drs. miss it entirely. However, the dr is wrong. DO NOT STOP EATING GLUTEN. You must be actively consuming gluten to have an accurate biopsy and blood work. You do not want to go gluten-free and then be told you must start eating gluten daily for a few months before a biopsy. Once you go gluten-free, the slightest amount of gluten will give you a bad reaction.

Bring your medical history to the GI doctor. Bring all Recent test results. Ask for a Celiac blood test (bring the test result if you already had it done.) Do not be shocked if you hear the blood work you recently had done by the other dr was not the right test for Celiacs. If the GI suspects Celiacs, you will have an endoscopy. They put a tube down your throat and look around in the upper intestines. They must take biopsies (you want quite a few). They are looking to see if the villi in your intestines are "flat". You may also want to ask for a gene test. If you have the gene the test will tell you if you do not have Celiacs now, to look for the signs later.

I know you had the Celiac test 4 yrs ago and were negative, but you could have it now. It is a genetic disease that can lay dormant for years and become active suddenly.

I have always found it helpful to write down your diet (what you eat and how much), all of your symptoms and problems and rate them: big issue, little issue, irritating, etc. The GI is probably going to review your history (Any celiacs in the family?) and talk with you about what is going on. The initial visit is not that bad. Ask tons of questions. The follow up visits and procedures sound unpleasant, but they need to do the tests.

Good luck and post more questions here after you talk to the dr. This site is full of very knowledgable Celiacs!

[aikiducky]

Celiac is a disease that progresses over time, and the blood tests can only detect it once it has progressed far enough. TTG being positive is a fairly strong indication that you indeed have celiac, and probably the GI doc will want to take a biopsy of your small intestine to confirm. You might want to continue eating gluten until that's done, just in case to not influence the results in any way. After that, I always think it's a good idea to give a gluten free diet try, because sometimes the tests can be inconclusive but the diet helps anyway.

Pauliina

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Thanks for the replies! I'm really glad to have found this forum... it's great to have a place to go!

I love my primary care doctor - she's great, really listens and thinks about her patients' health.

I will definately wait to go off gluten.

I'm scared for the specialist tomorrow though, and worried that he won't care about my positive TTG result or listen to me. I've had so many specialists think I'm a hypochondriac.

After reading the stories on this site and the books I bought at Borders last night (very big section where I am - they have a celiac on staff ), I think I'd really like to see if the gluten-free-diet works.

If it's working, will the blood test numbers change?

thanks again!

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