Confused Re Biopsy Results And Lab Results

[carteem]

Hello everyone!

So I recieved my biopsy results in the mail today and all it read was that the biopsies were normal. I do not have any other guidance as far actual diagnosis or diet.

My blood results showed elevated Deamidated Gliadin IGA . (My result was 88.9 and greater than 30 was a strong positive) All of my other labs were within normal range.

I understand that the biopsy is the "gold standard" for celiac diagnosis, but where does the elevated Deamidated Gliadin IGA come into play? Do doctors say that the biopsy was normal so negative celiac, or do they take into effect the lab? Or, do they say that a pt is then just gluten intolerant? I also understand that the intestine is very large which could affect biopsy accuracy.

Could the elevated Deamidated Gliadin IGA result suggest gluten intolerance vs celiac disease?

Thank you for your input, I am just a little confused!

I do have several and significant s/s celiac.

[ravenwoodglass]

The blood test you had that was positive is quite diagnostic in itself. False negatives on biopsies are pretty common. Consider yourself celiac and follow the diet strictly.

[nvsmom]

I think that positive DGP IgA indicates that you have antibodies to gliadin (and conversely to gluten). That is found in normal people and in celiacs... well normal people who are gluten sensitive. It can possibly indicate that you have not yet developed tTg antibodies, and perhaps you won't.

As I understand it, without elevated EMA or tTg, you won't have intestinal damage.

It looks like gluten is your enemy though.

Check outPeter Green's book {u]Celiac Disease A Hidden Epidemic. It's a really good book and goes through all of the tests.

Nicole

[MitziG]

It depends on the doctor you have, and how knowledgeable they are of celiac. Your body is making large antibodies to gluten. Whether you have intestinal damage yet is anyones guess- it may not be there yet, or the doctor may have missed it. Happens a lot. But, it is a given,if you continue eating gluten. Consider yourself a celiac now.

[pain*in*my*gut]

Hello everyone!

So I recieved my biopsy results in the mail today and all it read was that the biopsies were normal. I do not have any other guidance as far actual diagnosis or diet.

My blood results showed elevated Deamidated Gliadin IGA . (My result was 88.9 and greater than 30 was a strong positive) All of my other labs were within normal range.

I understand that the biopsy is the "gold standard" for celiac diagnosis, but where does the elevated Deamidated Gliadin IGA come into play? Do doctors say that the biopsy was normal so negative celiac, or do they take into effect the lab? Or, do they say that a pt is then just gluten intolerant? I also understand that the intestine is very large which could affect biopsy accuracy.

Could the elevated Deamidated Gliadin IGA result suggest gluten intolerance vs celiac disease?

Thank you for your input, I am just a little confused!

I do have several and significant s/s celiac.

First of all, normal people do NOT have positive DGP antibodies. They are very specific for Celiac. Some normal people can have anti-gliadin antibodies, which are different from the DGP, and much less specefic. If you were gluten intolerant, you would have no positive blood work, as an intolerance does not activate the immune system. It can still make you sick as hell, but there is no blood test for it.

I had the same situation as you. My DGP was 89, everything else was normal, including my biopsy. I do have the genes, and I was very symptomatic. But because my biopsy was neg, my GI dismissed me from his care ( nice, huh)? I also have RA, so I went to my rheumatologist, and he said that I was Celiac, no doubt in his mind. Biopsies are notoriously falsely negative. Even the world's leading experts on Celiac are backing off on the biopsy as the Gold Standard. I went gluten free, and the results were dramatic. When I accidentally get glutened, I get sick. So, there is no doubt for me.

Welcome to the board. In my opinion, you are one of us. Do you have any other autoimmune diseases? Celiac and Hashimoto's thyroiditis are best friends. You might want to get checked for thyroid antibodies if you haven't already. That was more proof for me that I have Celiac, as I have Hashimoto's as well.

[carteem]

Thanks for your input!

As far as I know I do not have any other type of autoimmune disorder. 2 years ago I had participated in a health challenge and the last 2 months of the contest I was meticulous with my diet. (As I look back, I think I had very little gluten, if any). I felt amazing, but I had thought it was due more to adrenaline and winning the challenge. After the challenge I started to reintroduce whole wheat pasta and started to eat ezekiel bread. Within about a month I felt like I was hit by a train! I had terrible muscle and joint pains, my hair was coming out in handfulls, I had also expierenced insomnia, hypoglycemia,cold hands,rapid weight gain, etc... I had gone to the doctor and asked for a thyroid test and had my hormones to be drawn as well. (I had a miscarriage approx a year before and I experienced the same hit by a train feeling.) My thyroid was normal but my progesterone was undetectable. So, for the last 2 years I have been associating all of my symptoms with estrogen dominance/leutal phase defect (Im 34yrs old). I had suspected my diet about a year or so ago,and tried the paleo diet for about 2 weeks. Once again I felt awesome! I then reintroduced healthy grains etc... Within a few weeks, I was bombarded with GI problems, and had my gallbladder was removed the next month. I have had GI symptoms since then. I have not had my thyroid rechecked.

Ironically, I worked in a Rheumatology office through all of this! I do remember entering many many celiac panel labs, but was never present when the doctors discussed results with pts. ( I also remember the labs being very in depth with additional antibodies for other disorders) Pts would be referred to GI specialists for postive labs. To be honest, I think working with Rheumatologists for 5 years is what confuses me at this time with my results. I read into the antibodies and look at it through a rheumatology aspect vs the GI aspect. So, when the GI says all is normal and you might be able to tolerate gluten in small amnts etc....I second guess myself and go back and forth. I see an antibody as an antibody and the engraved memory my body has to gliadin. Then I picture inflammation and reaction/destruction if gluten makes an appearance in my gut. But, then I tell myself that Celiac is GI realted so listen to my GI. SO...thanks for validating my thoughts, I feel much better about it!

I have been closely watching my symptoms since my labwork. I no longer work at the clinic but would probably be able to email one of the docs I worked with. Did you develop your RA/Hashimotos after your celiac diagnosis and going gluten free? I hope that your RA is well controlled as that can be a booger sometimes!!

[Cara in Boston]

I had positive blood and negative biopsy.

All my symptoms went away when I went gluten free.

My son has celiac and his doctor just laughed and shook her head when I told her my doctor would not diagnose me based on my biopsy. She said there are LOTS of reasons why the biopsy might appear negative and it DOES NOT mean you don't have celiac disease.

You tested positive. You have celiac disease.

Once you go gluten free for good you will feel so much better.

Cara

[pain*in*my*gut]

Thanks for your input!

As far as I know I do not have any other type of autoimmune disorder. 2 years ago I had participated in a health challenge and the last 2 months of the contest I was meticulous with my diet. (As I look back, I think I had very little gluten, if any). I felt amazing, but I had thought it was due more to adrenaline and winning the challenge. After the challenge I started to reintroduce whole wheat pasta and started to eat ezekiel bread. Within about a month I felt like I was hit by a train! I had terrible muscle and joint pains, my hair was coming out in handfulls, I had also expierenced insomnia, hypoglycemia,cold hands,rapid weight gain, etc... I had gone to the doctor and asked for a thyroid test and had my hormones to be drawn as well. (I had a miscarriage approx a year before and I experienced the same hit by a train feeling.) My thyroid was normal but my progesterone was undetectable. So, for the last 2 years I have been associating all of my symptoms with estrogen dominance/leutal phase defect (Im 34yrs old). I had suspected my diet about a year or so ago,and tried the paleo diet for about 2 weeks. Once again I felt awesome! I then reintroduced healthy grains etc... Within a few weeks, I was bombarded with GI problems, and had my gallbladder was removed the next month. I have had GI symptoms since then. I have not had my thyroid rechecked.

Ironically, I worked in a Rheumatology office through all of this! I do remember entering many many celiac panel labs, but was never present when the doctors discussed results with pts. ( I also remember the labs being very in depth with additional antibodies for other disorders) Pts would be referred to GI specialists for postive labs. To be honest, I think working with Rheumatologists for 5 years is what confuses me at this time with my results. I read into the antibodies and look at it through a rheumatology aspect vs the GI aspect. So, when the GI says all is normal and you might be able to tolerate gluten in small amnts etc....I second guess myself and go back and forth. I see an antibody as an antibody and the engraved memory my body has to gliadin. Then I picture inflammation and reaction/destruction if gluten makes an appearance in my gut. But, then I tell myself that Celiac is GI realted so listen to my GI. SO...thanks for validating my thoughts, I feel much better about it!

I have been closely watching my symptoms since my labwork. I no longer work at the clinic but would probably be able to email one of the docs I worked with. Did you develop your RA/Hashimotos after your celiac diagnosis and going gluten free? I hope that your RA is well controlled as that can be a booger sometimes!!

I was dx with Celiac by rheumy, so then he tested me for thyroid antibodies (my TSH was normal, BTW) and they were very high. Saw an endocrinologist who then did a FULL thyroid panel (free t3 and t4) and both were low, consistant with Hashimotos's. So she started me on levothyroxine and within weeks I was feeling better. At the same time my rheumy did the thyroid antibodies, he checked me for RA because of the joint pain I had been having (which I was hoping was due to the Celiac disease). My labs came back very positive for RA. . I am now on Humira, and it seems to be working!

Looking back, I think I developed Celiac disease after a bowel resection in 2007. I had major complications , required several more surgeries. My health tanked during this time. They actually tested me for Celiac then and I was told that the results were negative. It turns out that I was the highest number on both anti-gliadin normal reference ranges ( normal was 0-9, and I was 9). I found this out several years later when I requested all of my medical records. Now, if you were a doc, and you had a patient who kept getting bowel strictures, rectal inflammation and bleeding, major weight loss and chronic diarrhea and had those kind of Celiac panel results, why on earth would you NOT think that maybe we have a gluten problem here? Instead of telling your patient that they need anxiety meds, why not a trial gluten-free diet? This just infuriates me, because I went on eating gluten and kept getting sicker. In 2010, I had a miscarriage ( probably related to undiagnosed celiac). Six months later, I went into autoimmune ovarian failure ( menopause) at the ripe old age of 36! My health continued to decline, I was horribly fatigued, bloated belly, stomach cramps, joint pains. In July of 2011, I went to see my GP because of a lingering pain in my upper left abdomen under my ribcage that wouldn't go away. It just so happened that my regular GP wasn't in that day, so I saw her associate. Call it fate, God, karma, whatever you want, but this doc had JUST had a patient similar to me who wasn't the typical Celiac patient ( skinny, malnourished) that they are trained to think in med school. This patient had also been having this left rib pain and bloating, and she turned out to have celiac. So, she decided to test me again, this time with the new DGP antibody screen. BINGO!!! I immediately scheduled my biopsy, and it was negative. GI doc didn't even give me the courtesy of a follow-up appt., he just sent me a letter that said my biopsy was normal and there was nothing he could do for me. Luckily, I am in the medical profession (medical technologist, worked in an immunology lab for 10 years), so I knew that the positive DGP was not to be ignored. I saw my rheumy, who confirmed that I had Celiac, normal people do NOT have high DGP antibodies. That was when I was dx with Hashimoto's, Sjogren's and RA. I firmly believe that if I had been dx in 2007 and gone gluten free, my immune system would have calmed down, and I wouldn't have developed all these other autoimmune diseases. I would also have a baby who would be turning 2 this summer, instead of a single ultrasound picture and a memory box.

Sorry this turned into a rant. I am so frustrated and angry that there is so much ignorance amongst the medical community about celiac. They failed me. Now I am stuck with the consequences of their ignorance. I am so glad that you were able to figure it out before it destroyed your health! Always go with your gut ( pun intended)!