Should I Switch To Another Gi?

[floridanative]

My biopsy is scheduled for Jan 17th but I'm not sure if I should find another GI to do it. I called last week to the current doc and asked for a full panel celiac disease blood test. I'm pretty certain this was never done. One antibody was supposedly too high at 11.1 (normal being 3-4) but that's all I know, not the name of the test. So today the nurse calls to say the doc says I don't need any more blood tests, only the biopsy. Okay so now I'm thinking, the doc doens't know what he's doing, with regards to celiac disease at least.

Next month I'm seeing a hemotologist (anemia) in case I don't have celiac disease at all but if he finds nothing, I will have the biopsy in Jan. But the blood doc is at a digestive health center with many GI docs in it. I'm thinking I may switch to one of them for the biopsy if they have someone there who knows a lot about celiac disease - or at least claims to. Do any of you recommend I do this? The extra hour drive may be well worth my time if I find a better doc.

Thanks for reading and any help you can offer.

Tiffany M.

[kbtoyssni]

I haven't gone through all the extensive testing for celiac so I don't really know what tests you should be getting done, but it seems like three months is a long time to wait to get a biopsy. They should be able to get you in before that, and you shouldn't have to be sick for three more months while you wait to find out what's wrong.

I figured out I had a gluten sensitivity by doing an elimination diet. My doctor would have done a biopsy for me, but I didn't want to keep eating gluten. I opted to not get an official diagnosis because I know gluten makes me sick. If you can't get in before January, maybe you should try the gluten free diet and see how you feel. The only problem is that once you've gone gluten free, the biopsy won't come back positive, but who cares if you feel better?

[CeliacMe]

I never got a biopsy either. I did have a colonoscopy because they originally thought that I had ulcerative colitis, so my colon was biopsied, but not my small intestine. My very smart and inquisitive primary physician ran that bloodwork.

My feeling is that if your bloodwork comes back positive and you have syptoms, than its safe to assume that you have Celiac. Besides, the other post is right, who cares if you have the biopsy as long as you are feeling better? Maybe you'll need one down the line for other health reasons, but not to go on a gluten free diet, that's ridiclous. Gluten free is healthier anyway, you'd be doing yourself a favor even if you're not Celiac. Gluten is terrible, I am reading dangerous grains now. If you haven't read it, you should. It's a big eye-opener.

If you dont trust this doctor to do the test, go with your gut! (no pun intended) Don't let him do it if you don't feel comfortable. Would you get sugery from a surgeon you didn't trust? NO! So don't do it! If I were you and I didn't trust him, I'd find someone else.

[zakismom]

I don't know about your Dr but, I didn't have any blood testing for celiac disease I only had the endoscopy done. (Well, they did a lot of other testing but, not for celiac) The biopsy was definatly positive so the blood levels don't matter as far as a diagnosis is concerned.

[Guest nini]

My doctor only did the full blood panel.. it was highly positive and he told me to start the diet right away. He said the biopsy was NOT NECESSARY if the blood test was positive. Everything that I've been reading has confirmed that views are changing. The biopsy is not the gold standard of dx anymore because they are missing a lot of celiacs who may not have damage YET.

Since you had positive results, my personal opinion is that you don't need a biopsy to confirm it. The sampling error rate for not finding damage is too high for my comfort level.

I'm willing to bet you that if you start the gluten-free diet 100% today, you will start feeling better. And as far as insurance is concerned, if you get a positive dx of celiac because of the biopsy on your permanent record, you can be denied health insurance coverage in the future. I was denied coverage so I had to go with a more expensive group policy that didn't look for pre existing conditions. So it may not be so terrible to not be dx with celiac IF the gluten-free diet helps you.

The point is, if your health starts to improve on the gluten-free diet, you don't need the biopsy to confirm that gluten is bad for you.

[nettiebeads]

My biopsy is scheduled for Jan 17th but I'm not sure if I should find another GI to do it. I called last week to the current doc and asked for a full panel celiac disease blood test. I'm pretty certain this was never done. One antibody was supposedly too high at 11.1 (normal being 3-4) but that's all I know, not the name of the test. So today the nurse calls to say the doc says I don't need any more blood tests, only the biopsy. Okay so now I'm thinking, the doc doens't know what he's doing, with regards to celiac disease at least.

Next month I'm seeing a hemotologist (anemia) in case I don't have celiac disease at all but if he finds nothing, I will have the biopsy in Jan. But the blood doc is at a digestive health center with many GI docs in it. I'm thinking I may switch to one of them for the biopsy if they have someone there who knows a lot about celiac disease - or at least claims to. Do any of you recommend I do this? The extra hour drive may be well worth my time if I find a better doc.

Thanks for reading and any help you can offer.

Tiffany M.

<{POST_SNAPBACK}>

I was dx's nine years ago by the gluten-free diet. But I'm in the very small minority of celiac disease sufferers - I had had D for only 6 weeks before I went to my gp. He put me on the diet, went back two weeks later much improved and voila! celiac disease! But he's since retired, had to use another dr (ins. reasons) who didn't understand celiac disease at all. Then changed drs again (ins. reasons) and am comfortable with this one. It's your health, if one dr. isn't helping you to maintain optimum health, then by all means switch.

[debmidge]

Tiffany, Have you started a gluten free diet?

D.

[floridanative]

Tiffany,  Have you started a gluten free diet? 

D.

<{POST_SNAPBACK}>

No. Doc said not to go on the diet so I'd have an accurate biospy but I know there are a lot of false negatives out there and I've only had anemia a year (found out this March) so I'm doubtful that my test will show any damage in such a short time but maybe I'm wrong about that.

Anyway, I decided to have the bloodowork done with the hemotologist in two weeks and the biopsy right after Thanksgiving. That way I will probably have to start the diet then, regardless of the test results. If they come back negative, I'll have to do the diet and a gluten challenge maybe after three months and see what happens. I don't know what else I could do if my test shows no damage and the blood doc can't find another reason for my anemia.

I've already warned my family that I will be on the diet at Christmas and our annual international meal is polynesian this year. Is there a soy sauce that is gluten-free? My sister said she'll switch the sauce and use soy and honey but I think lots of soy sauces have gluten in them. Can anyone recommend a brand that is gluten-free?

Thanks!

[Guest nini]

I use San J wheat free Tamari Soy sauce... I get it at Life Grocery, and I think Whole Foods carries it too.

[tarnalberry]

The doc doesn't sound incompetant so far, but it sounds like there is a communication problem, and that may have nothing to do with the doctor. Please call the office back and ask them to send you the full results from the lab. They have to do that, and then you'll have the information you need. I'd hold on for the biopsy, since it's already scheduled, but do find out about the blood test results so you have the answer and don't have to go on "I think they did this...".

[floridanative]

nini- thanks for the info on soy sauce. I'll look for it at WF.

tarnalberry - I do know they didn't do a full panel blood test for Celiac, they told me that. And they said I didn't need it run because of one anti-body test result which the doctor told me was not conclusive at all. Anyway, I'm paying to see the hemotologist so I feel like he'll run the panel for me. That way, I will have more to go one besides one blood tests which was very low compared to others I've seen. 11.1 seems to be extremely low even if 3-4 is normal. But I'm guessing that's because I probably not have been sick for a very long period of time, just over a year.

Thanks for everyone's help/suggestions.

[floridanative]

Okay - I am now totally confused. The girl who schedules procedures for my GI is out sick so someone else called me back to change my endoscopy date to right after Thanksgiving instead of Jan. But she said something like we don't do biopsies here so I don't think I can help you. Now she is just filling in so I realize she probably doesn't know what the heck she's talking about but does anyone know if there are GI's out there that will just do the endoscopy and not take tissue to test for damage if they don't see the damage themselves? I'm certainly not willing to pay $250 for a total waste of my time. Anyone know of Celiac familiar GI's in the Atlanta area? I may have to get yet another referral to go to someone competant enough to do the test. I don't want to switch to another PCP, just another GI.

Help!

[jrom987]

Next month I'm seeing a hemotologist (anemia) in case I don't have celiac disease at all but if he finds nothing, I will have the biopsy in Jan. But the blood doc is at a digestive health center with many GI docs in it. I'm thinking I may switch to one of them for the biopsy if they have someone there who knows a lot about celiac disease - or at least claims to. Do any of you recommend I do this? The extra hour drive may be well worth my time if I find a better doc.

Thanks for reading and any help you can offer.

Tiffany M.

<{POST_SNAPBACK}>

Tiffany,

I went 10-15 years, maybe my entire life, before being diagnosed with celiac disease. I also have very low iron and took iron pills three times a day, with no improvement. I have seen every doctor imaginable in CA and 2 years afer moving to AZ, I was sent to a hematologist and he suspected right away what was wrong with me. Of course, he ran the blood tests and ordered the biopsy. He was right and I have started learning about a disease that I never even knew existed. I have been gluten-free almost 3 weeks now. See what the hematologist has to say and go there with as much information as you can. Good luck! Jo Ann

[Guest nini]

Tiffany, the Dr. that dx me is at St. Joseph's Hospital Medical Building in Atlanta. His name is Dr. Eugene Hirsh and I highly recommend him. This man saved my life!!

[floridanative]

Okay - this whole thing is getting old and I'm still in the testing stage. Those of you out there that have been looking for anwers for so long, well my hat is off to you! I'm sick only a year (only with anemia) and I'm so frustrated I could scream! My endosopy is scheduled for 12-5. I call the doc to say I want a biopsy done during the procedure and the doc's asst. says 'if the doctor sees something to biopsy during the endoscopy, he will do a biopsy'. Well is the damaged villi (if I have it) that apparent? Don't I need to have him take several biopsies regardless of what he can see? I can't afford a test that may not be done right so I think I need to go to someone else. One of you was kind enough to recommend thier doctor in my area but I hate to start all over if I don't have to. Am I confused about what should happen during the endoscopy? Will the damge be very apparent if there is damage or not? Help - again please.

[Guest nini]

I tried to send you a PM... let me know if you didn't get it.