So Confused!

[newlife]

Four weeks ago my Dr. diagnosed me as having celiac disease. She stated I needed to remove glutin from my diet and that I would need to visit a nuritionist. The nutritionist they set me up with was told I had gerd, not celiac and told me she wasn't qualified to treat celiac. At this point I was starting to realize that this would be my battle and I was going to have to get informed FAST. I asked them to fax me my blood results. They are as follows:

Antigliadin Abs, IgA-Neg

Antigliadin Abs, IgG-42

t-Transglutaminase (tTG) IgA-Neg

Reticulin IgA Ab-Neg

Reticulin IgG Ab-Neg

As I started researching it appeared to me that this was not, or should not have been a definitive diagnosis. I then contacted my GI specialist for a second opinion. In the meantime I have been glutin-free for a month and I feel better than I ever have in my life. I had my appointment today with the GI specialist who spent the twenty minutes of my appointment telling me why I didn't have it becuase the IgA blood markers were neg. He agreed to do a biopsy to get a definitive answer. As I'm about to leave he calls me out in the hall and has a blood script for me. Apparently in the time it took me to check out he must have researched and discovereed that in 15% of celiacs they have no IgA markers, they only have IgG markers. He said that depending on the result of this blood test I believe it was SPPE or something similar to that he would be able to diagnose me with celiac but would still follow it up with the biopsy. I have never heard of this test and am wondering if anyone knows anything about it.

My biopsy is scheduled for June 23, I hope this enough time for the wheat to get back in my system. I should note that I have just about every symptom of celiac and a few extra including: excessive fatigue, osteopenia at age 30, chronic fatigue diagnosis 10 yrs. ago, IBS, bloated stomach, hair loss, testosterone deficiency, mouth sores, was 95 pounds until I turned 30, constant gnawing feeling in my stomach which leaves when I ingest sugar-this is what prompted my Dr. to test for celiac. I really thought I had an ulcer.

Needless to say I am totally confused and feel that neither of my Dr.'s have a good handle on this disease. I tried to get ito a celiac GI specialist but I would have had to wait until Sept. and I was afraid what the glutin would do to me at that point after being off it for so long. I think I got cross contamination at the Outback the other night and the next 24 hours were extremely unpleasant. Based on that I felt I was better off sticking with my current Dr. through the biopsy and then switching.

I would greatly appreciate any advice that any of you have.

[Guest jhmom]

Hi I am not familiar with your blood tests and cannot offer any advise on that but if you felt better on the gluten-free diet than you have in a long time THAT IS A TEST RESULT and I would remain on the gluten-free diet for life!!!!

You will have to go back on gluten in order for the blood test and/or biopsy to come out accurate (I use that term loosely) however, keep in mind the test results can still come back negative and you can still have Celiac / gluten sensitivity because it takes time for a disease to show up in blood / biopsy.

Most GI docs WILL accept an improvement on a gluten-free as a diagnosis. There is NO WAY I would begin eating gluten again to satisfy a doctors need to properly dx me. I went through all the standard testing and every single one of them came back negative (according to my doc), my GI doc thought I had IBS, I knew I didn't! I finally ordered a stool panel test from Open Original Shared Link and it came back positive. This way of testing is more sensitive than blood and more accurate and you DO NOT have to be on gluten when you are tested, my daughter had been gluten-free for a month.

Good luck to you!

[gf4life]

Have they tested you for IgA deficiency? Something like 10% of Celiacs have this and it accounts for a large protion of those that tested negative on their IgA based celiac bloodtests. Most doctors do not know to test for this.

After a month on the gluten free diet three weeks of gluten may not be enough to cause enough damage to be seen on the biopsy. If they do the biopsy at the end of the month, ask them to make sure they do a CD3 stain and count the number of Intra-Epithelial Lymphocytes. This is what is seen in the early stages of damage with Celiac, but most doctors only will diagnose if there is complete damage to the villi. That is like saying you don't have cancer because the tumor is small, or you are only a little bit pregnant! You still have a disease, even if it is in the early stages! I would suggest educating yourself as much as possible so that you are well informed before you go in to have your biopsy.

I was gluten free before my biopsy and went back on gluten for two months. It was not enough to cause visible damage and my doctor did not do the slides for the IEL count. I will not go for another (that was my second, the first never took one tissue sample!), I am Enterolab disgnosed and happily gluten free. I spent two years fighting for a diagnosis, and I did not want to waste anymore years of my life feeling sick. I have been gluten free now for about 6 months and I feel much better. My kids are now on the diet also and they are starting to grow better and are much happier. I hope you are able to get your answers.

God bless,

Mariann

[newlife]

Thanks for your responses. Do you know the name of the test that tests for IgA deficiency? I believe that is what my GI is doing now. Where do you find your information? I can find a lot of info on the diet but not a lot of detailed info on the disease. I am strongly considering waiting until I can see a GI who is a celiac specialist, I do not have confidence in my present GI. I inquired the other day and they said I would have to wait until September which is a long time to be sick but it may be worth it to be able to put this behind me once and for all. I'm trying to get some strings pulled to get in earlier. It would give me a longer time with the wheat so hopefully it will show up. I am not too sick yet, nauseous after I eat and extremely fatigued after two days on wheat. I can't believe how quickly I got tired again. I'm sure the worst is yet to come, how long after you eat wheat do you react? Thanks again for all your help, I really appreciate it.

[gf4life]

The test for IgA deficiency is a Total Serum IgA blood test.

Waiting until you can get into a doctor in September would be hard, but might be worth it. Doctors familiar with Celiac Disease are much more helpful that ones who don't. The average doctor will base their diagnosis (or lack thereof) on outdated information from medical textbooks or similar outdated information they were taught in medical school. I think you would benefit from waiting and having the new doctor do the endoscopy in the fall. It is obviously your decision to make, but if you are not comfortable with your current doctor, there must be a reason. If the biopsy is negative your new doctor might not want to repeat it and your insurance might not cover it the second time around in one year.

I felt so much better being gluten free and within a day of being back on gluten I was exhausted and the stomach issues were back almost imediatedly with gas and bloating, but the diarrhea took about a week or two to come back, I was constipated first. The pain was the worst. And the headaches! I was so relieved to get back to the gluten free diet, although I still don't have an official diagnosis. It just isn't worth it to me to push harder and still have the possiblity of being denied the diagnosis. The difference with how I feel off gluten combined with the results of my Enterolab tests (all positive and I carry the main celiac disease gene HLA-DQ2) are enough for me.

God bless,

Mariann

[newlife]

Thanks again Mariann, I agree with you in that I think it's worth waiting. I figure I've lived this way for 36 years, so what's a few more months? We'll see in a week if I still feel that way! This Doctor that I would like to see works very closely with the local celiac group and is also my mother's boyfriend's Dr. He has Crohn's disease. He's got an appointment in the beginning of July so he was going to see if he could get me moved up. He's gone to him for over twenty years and is a big success story of his-hopefuuly he's got some clout. My whole family would prefer that I go to him so I've certainly got support there, if they can live with me!

Where have you obtained your medical knowkedge of the disease? I read one book and have ordered two more, none of the bookstores around here carry any in stock. They have the cookbooks in stock but that is it.

Thanks again for your concern and your help!

Lisa

[gf4life]

Most of my knowlegde of the disease has come from my reading everything I could get my hands on (either books or online information). I have spent the better part of 3 years doing research on the subject, and I am still learning more everyday! My children's GI says that I certainly know more about the disease than most doctors. He is the first doctor I've met who has bothered to learn about the disease. Most still think it is rare.

Some of the best books I've read are:

Wheat Free, Worry Free by Danna Korn

Dangerous Grains by James Braly & Ron Hoggan

Against the Grain by Jax Peters Lowell

(I have gotten them all at amazon .com, since they offer a large selection, lowest price and free shipping over $25.)

Some of the places I have found good information online are:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And of course here at Celiac.com there is a ton of articles and information available. I think I've read them all, but there are so many it is hard to know if I have missed any!

I hope this helps. And I hope you are able to get in to see the new doctor ASAP!

God bless,

Mariann

[newlife]

Thanks again Mariann. I've looked at those articles and they were very interesting. My books arrived yesterday, I think I'm going to start with Danna Korn's book. I also made my appointment with the celiac specialist yesterday. It wasn't as bad as they originally said, it's for August 19. Hopefully my Mom's boyfriend can get me moved up! Thanks again for all the support!

Lisa

[holdthegluten]

Who is your specialist and where. I need a good dietician that specializes in it.

[Lisa]

Who is your specialist and where. I need a good dietician that specializes in it.

You should take notice that this thread was last posted June 2004.