Please Somebody Help Me Make A Decision!

[chatycady]

Today the Dr. called and said my blood test was "inconclusive". and he wants to do a biopsy, but first I have to start eating gluten again. I CAN'T!! I get so very sick! My ears start to ring, my heart races, my stomach cramps into knots and then my blood pressure drops dangerously low. I told him this, but I don't hink he believes me.

My husband said he was going to live in the barn with the dogs if I go back on gluten! 4 weeks of pure poison. I won't be able to work or function.

Do I really have to do this for a diagnosis? Isn't my reaction enough to determine celiac?

He only tested the IgG and IgA wasn't he suppose to do more? One was 28 one was 35. I don't know which was which the nurse didn't really know what she was telling me over the phone either.

Please help me. Do I really need a confirmed diagnosis? I know I'm whinning. I really had hoped for a negative so I could forget it and continue on my gluten free diet. I'm so frustrated! And scared!

chaty

[Tritty]

Ok...I'm new at this too, but I think he should have done a ttg too?

How long have you been off of gluten? My doctor didn't make me go back on for the diet - I was gluten free for almost 5 weeks and there was still plenty of damage to see...

[PeggyV]

As much as I would like to know, I wouldnt go back on gluten to find out. I understand, but if you plan to stay gluten free forever why put yourself (and your husband) through it?

Just my opinion....others might have a good reason why you should.

[CarlaB]

Four weeks wouldn't be long enough. The celiac experts talk more in terms of four months! And, four slices of bread per day!

If you know gluten bothers you, just don't eat it. It doesn't really matter much whether you're diagnosed celiac or whether you are "just" gluten intolerant. They both have the same cure ... gluten free.

Plus, you won't have this diagnosis on your medical records. Sometimes people get turned down for insurance because of celiac.

[happygirl]

You asked for opinions. You are obviously in the right place as we all have them in regards to gluten!

Yes, your doctor should have run the full Celiac panel. Ask him point blank why he didn't?

The tests are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You don't have to do anything you don't want to do. I don't know what the reference ranges were for your tests, so I don't know if your "scores" were positive or not. But, if they were positive, it indicates a problem with gluten.

You don't need a prescription to go gluten free. You don't need a doctor's permission to take something out of your diet. People (i.e., doctors) often overlook the important of the patient doing better....a positive dietary response. Doctors are often so wrapped up in the tests that they don't see what is in front of them. (the whole story of a patient going in, and saying "Doc, it hurts when I do this" (insert any action). Doc says, "Well, don't do this then!") In a symptomatic patient, the goal of the patient is to relieve the symptoms. If you have symptoms on a gluten filled diet, then it is (to us, and to you, but not your doctor!) common sense to stop eating gluten. In all honesty, on a day to day basis, it doesn't matter but *so* much if you have confirmed Celiac or call it a gluten intolerance. Th diet is the same. Now, some people need a confirmed dx, to help them stick to the diet, but that is a personal decision.

You can tell your doctor that you do not trust his medical care because he did not run the correct tests and that you will find other care. Do you need other care? I don't know what to say. But if you feel confident that gluten is your problem, and do fine on it, then that is great. When you do see a new doctor, you can just tell him/her that you noticed that you reacted to gluten and stay away from it (gluten intolerant). The other thing to keep in mind is this...say you went back to eating gluten, and had the biopsy. What would happen if it was negative? Would you still stick to the diet? If the answer is yes, you are still ending up in the same place, it depends on the path you want to take to get there. A biopsy can rule Celiac IN, but cannot rule it OUT. (A negative biopsy does NOT mean that you do NOT have Celiac).

Best of luck, and I hope this helps your thought process!

Laura

[chatycady]

Ok...I'm new at this too, but I think he should have done a ttg too?

How long have you been off of gluten? My doctor didn't make me go back on for the diet - I was gluten free for almost 5 weeks and there was still plenty of damage to see...

I'm sorry, they did a TTG earlier and it was negative. I believe, because of my symptoms he wants to do the biopsy. But he also wanted to do a colonoscopy just because I'm 50. I think he just likes to do these tests

.

[chatycady]

You asked for opinions. You are obviously in the right place as we all have them in regards to gluten!

Yes, your doctor should have run the full Celiac panel. Ask him point blank why he didn't?

The tests are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You don't have to do anything you don't want to do. I don't know what the reference ranges were for your tests, so I don't know if your "scores" were positive or not. But, if they were positive, it indicates a problem with gluten.

You don't need a prescription to go gluten free. You don't need a doctor's permission to take something out of your diet. People (i.e., doctors) often overlook the important of the patient doing better....a positive dietary response. Doctors are often so wrapped up in the tests that they don't see what is in front of them. (the whole story of a patient going in, and saying "Doc, it hurts when I do this" (insert any action). Doc says, "Well, don't do this then!") In a symptomatic patient, the goal of the patient is to relieve the symptoms. If you have symptoms on a gluten filled diet, then it is (to us, and to you, but not your doctor!) common sense to stop eating gluten. In all honesty, on a day to day basis, it doesn't matter but *so* much if you have confirmed Celiac or call it a gluten intolerance. Th diet is the same. Now, some people need a confirmed dx, to help them stick to the diet, but that is a personal decision.

You can tell your doctor that you do not trust his medical care because he did not run the correct tests and that you will find other care. Do you need other care? I don't know what to say. But if you feel confident that gluten is your problem, and do fine on it, then that is great. When you do see a new doctor, you can just tell him/her that you noticed that you reacted to gluten and stay away from it (gluten intolerant). The other thing to keep in mind is this...say you went back to eating gluten, and had the biopsy. What would happen if it was negative? Would you still stick to the diet? If the answer is yes, you are still ending up in the same place, it depends on the path you want to take to get there. A biopsy can rule Celiac IN, but cannot rule it OUT. (A negative biopsy does NOT mean that you do NOT have Celiac).

Best of luck, and I hope this helps your thought process!

Laura

He only ran the anti gliadin test and a prior dr only did the TTG it was negative.

[Tritty]

I actually am glad that I had my biopsy done. It was not a big deal and they did find some answers to some other questions. I have a small hiatal hernia and now that I know about it, I can try and keep it small

I also have some erosion in my esophogus that explains some issues that I have with getting food to go down.

I KNOW I would not have gone back to gluten for it though. I was way too sick and loosing WAY too much weight...

How long have you been off?

[chatycady]

I actually am glad that I had my biopsy done. It was not a big deal and they did find some answers to some other questions. I have a small hiatal hernia and now that I know about it, I can try and keep it small

I also have some erosion in my esophogus that explains some issues that I have with getting food to go down.

I KNOW I would not have gone back to gluten for it though. I was way too sick and loosing WAY too much weight...

How long have you been off?

Only 2 weeks. He insists I need to start back on gluten. I question whether or not he knows a lot about celiac. I don't think I can heal in two weeks. I'm not worried about the test, it's the thought of my reaction to gluten. I believe I have anaphylactic reactions, and I could pass out and end up in the ER.

[Tritty]

I wouldn't go back on. Especially when you've only been off two weeks. I felt great after two weeks - but still had plenty of damage to show the doctor 3 weeks later...It's not worth risking your health over.

I would call and get put on his cancellation list - maybe you can get in quickly and get it done. Or go without the test at all.

Good luck in whatever you decide

[Mtndog]

The other option is to go in WITH your hubby, explain the situation (how sick it makes you and that you won't be able to work) and tell him to do the gene test (my Gi did this through Prometheus and insurance paid for it). A gene and positive dietary response= a diagnosis.

Or, if you know gluten makes you sick, just stay gluten-free. I knew going into my biopsy that regardless of the results (which were negative0 I would stay gluten-free. I did a 2 week gluten challenge and gave up after 10 days.

[Jo.R]

If you read my signature, you will see I refused my endoscope. I for greedy reasons, but after research. You could eat all that gluten and suffer, AND the biopsy still be inconclusive. I wasn't paying 20% for a test that wasn't 100%. My Dr. supported this, and said we can reschedual if the diet doesn't work. The diet works for me, so no endoscope. Now having said that, I had a positive blood test. You have to ask yourself, if for your peace of mind, do you need a positive test?

[tiffjake]

If you read my signature, you will see I refused my endoscope. I for greedy reasons, but after research. You could eat all that gluten and suffer, AND the biopsy still be inconclusive. I wasn't paying 20% for a test that wasn't 100%. My Dr. supported this, and said we can reschedual if the diet doesn't work. The diet works for me, so no endoscope. Now having said that, I had a positive blood test. You have to ask yourself, if for your peace of mind, do you need a positive test?

Me too. And I wouldn't eat gluten again for anything. I tried, for more blood work for a different doc, and made it three days before I was vomiting in the bathroom for hours after eating. Nope. Not for anything.

[jayhawkmom]

My blood tests were inconclusive as well. But, I did go ahead with my endoscopy and I was very glad I did. Much like the previous poster - they found a hiatal hernia as well as damage to my esophagus due to GERD. I've been a "silent refluxer" and never had heartburn or anything, just an odd and constant necessity to clear my throat. Once we found out about the other issues, they were able to help me correct them.

Had I not had the scope done, I would have continued to further damage my esophagus - and that could have been way more detrimental to my health.

Personally, I would NOT have an endoscopy done if Celiac was the ONLY thing they were looking for. Nor would I go back on gluten for *any* reason. I do agree with Mountain Dog - take your hubby with you, and let HIM tell the doctor how you are when you are consuming gluten!

I wish you the best with whatever you decide.

[chatycady]

I decided not to do it. I was going to have it done so I could have a diagnosis for my children. I think if I tested positive they would be more serious about checking them out. ALso, my dad has real bad ezcema.

But I just can't afford to be sick for a month, and I really think I would end up in the ER. Thanks for all the comments. They really, really helped in making my decision!