Am I Doing This For Nothing?

[tea-and-crumpets]

I got a copy of my blood test and biopsy results. I'm so mad! The doctor only took THREE samples during the biopsy. I thought she was supposed to take more than five? I feel like I did the procedure, anesthesia, etc for nothing.

Here's what I have. Can anyone help me interpret them?

Endomysial Antibody IgA

t-Transglutaminase (tTG) <2 (negative 0-3)

Immunoglobulin A, Qn, Serum 242

Antigliadin Abs IgA

Deamidated Gliadin Abs, Iga 3 (negative 0-19)

Antigliadin Abs, IgG

Deamidated Gliadin Abs IgG 31 (moderate to strong positive >30) -- it was this result that triggered the biopsy

t-Transglutaminase (tTg) IgG 2 (negative 0-5)

The biopsy shows 3 samples negative for celiac disease. No H. Pylori in the stomach and some acid problems in the esophagus. That's what I originally went to see her for two years ago and she's been on me to get a scope for it ever since. At the end of the day, I was told to fill a script for antacids and go on my way. This doctor has also told me that I can take immodium every day, forever. I think I'd rather figure out why I have chronic D.

I feel like I'm going crazy. I went gluten free on Sunday and started to feel great almost immediately. Starting Monday, I woke up for the first time in eighteen months without horrible stomach cramps. I had one bad night of gluten withdrawal symptoms but I have had more energy than I have in so long. I ran errands this afternoon and was able to go to six or seven different stores. Two weeks ago, the last time I tried to buy groceries, I made it to the market that's five minutes from my house, spent a few minutes there, and came home to take a nap.

But yesterday and today I've felt rotten, both times after eating something with buttermilk powder. (Stupid, I know, but I was looking for wheat ingredients. I know better! I will look better in the future, for sure.) I had to run to the bathroom and spend a lot of time in there. But now I feel like -- what if it's just lactose intolerance? I had that as a baby but grew out of it. I had to be on special formulas, etc. I just figured it was back. So if it is just lactose intolerance, I just redid my whole kitchen, gave away all my gluten food, filled my cupboards up again, bought new toaster and pots and pans and for what?

I respect the experience and education that doctors have, but I take what they say with a big handful of salt. I was told in my early 20s that I did not have poly cystic ovarian syndrome, which turned out to be wrong. Because I didn't treat my PCOS, I now can't have children without lots of expensive fertility treatments. I will never again let a doctor blow me off. But if the test results are coming in like this, am I just grasping at straws? I know she won't certify me as celiac. I have a follow up appointment in a couple of weeks to discuss the biopsy but I'm tempted to cancel it.

I know that part of this is panic at the thought of going gluten free forever. And I know that the answer is to stay gluten free for at least three months and do a challenge. That high IgG result means something, right?

I started getting sick eighteen months ago, but I developed lactose intolerance and rosacea in the months before that. I am afraid this is all in my head or that I'm chasing windmills.

I know this is long. Thank you if you read this far. Any advice?

[mushroom]

Tea_and_Crumpets, calm down, take a big breath and look at all this rationally, with your brain and not with your emotions.

We all know that the testing is not highly accurate - that there is a 20% false negative rate, both on blood work and biopsy. Your DGP was positive, which is one of the most specific tests they can run for celiac. The biopsies are hit or miss, whether or not they biopsy the right areas, or whether you actually have reached the point of having villous damage in the first place. (and whether or not their doc took enough samples). Many people are lucky enough to be tested before they reach this stage. And many are unlucky to have a doctor who does not take enough samples, or samples the wrong areas None of this means a lot in the big scheme of things, trust me on this. The doctors only look at the tests; we live in our bodies and our bodies give us messages that the doctors do not receive.

Okay, so when you give up gluten, regardless of what your biopsy said, you should give up lactose too for a while (you know this) because although your biopsy did not find it you probably have damage to your villi. Do not panic and think you have done the wrong thing. Stay the course!! I had lactose intolerance long before I realized I had gluten intolerance. And it's only been in the last six months or so that I have added ice cream and milk back into my diet. Do not to be impatient!!! You have spent a long time getting sick, and it is going to take you a while to get better. But get better you will. You will probably even notice an improvement in your PCOS and may well ultimately be able to conceive naturally without IVF, based on the stories I have read here.

Medical tests are not the be all and end all of everything. There are many false negative on the testing, and the most definitive test of all is how your body reacts. If you quit eating gluten and get better, you have your answer no matter what the test results show. Doctors rely on their tests, but we rely on what our bodies tell us. Go strictly gluten and lactose free and listen to your body.

[ravenwoodglass]

I agree fully with the previous poster. You are not doing this for nothing you are doing this because you are celiac. You got lucky and have a doctor that did the best test we have so far for celiac, the DGP, and that was positive. You even saw some quick results from starting the diet. Give yourself some time to heal and do give up the dairy for a bit.

[nora-n]

There are lots of people with negative biopsies and test results that improve dramatically off gluten.

The reason the blood tests have so high cutoffs, and the endoscopy was not done with the pill cam (which clearly shows celiac, flattened villi, which is typically found being patchy nowadays), is that in some countries diagnosed celiacs get money from the government, and the criteriae must be strict.

In patchy celiac, the blood tests typically can be negative or borderline.

Of course you get lots and lots of symptoms and other autoimmune illnesses get triggered with patchy celiac.

In the old days, only total villous atrophy qualified for the celiac diagnosis, and they only took one sample.....

[cassP]

lactose intolerance often goes hand in hand with gluten intolerance, plus- you got that newer test with a result of 31. My antigliadin (older test) was negative and my ttg was only a 7... And now i have DH- so you really should listen to your gut (and pun included,lol), and stay on the gluten free path! It is NOT in your head

[Skylark]

That deamidated gliadin peptide (anti-DGP) test is very good, and very sensitive for celiac. You are absolutely doing the right thing going gluten-free, especially with the dramatic improvement in how you feel. Biopsies can be negative in early celiac but people with anti-EMA or anti-DGP tend to end up with damage if they keep eating gluten. Celiac can be a gradual process in some people, and it starts with the antibodies and progresses to damage. If your doctor has any common sense, she'll tell you that she can't formally diagnose you with celiac but that you shouldn't eat gluten if it makes you feel sick. Very few doctors seem to have read the latent celiac studies so don't be surprised if she doesn't think of celiac as a gradual process the way the researchers are demonstrating.

Lactose is made at the tips of the mucosa, so if you have patchy damage you might have trouble with it. Also, an awful lot of celiacs react to casein, the protein in milk. For me, I reacted to all cow dairy for about nine months, then was able to eat milk again once my intestine healed. I had to go gluten, soy, and cow dairy free at first to feel well. I was able to eat goat and sheep's milk cheeses.

Also, as others have mentioned, there are quite a few women on this board who thought they were infertile and conceived within months of going gluten-free.

[tea-and-crumpets]

Thanks everyone. Sorry for the freakout. I have an anxiety disorder, too, so I'm thinking the withdrawal triggered something.

I had no idea that there were different types of tests. So the IgG means celiac, for sure? When I called for my biopsy results (before I got them in my hands) the nurse told me -- "No gluten allergy! You're fine!" I guess it just really shows how I need a new doctor.

I have continued off gluten and will stay off. I'm going to do a challenge at month three but I don't think it will really matter.

[Skylark]

That anti-deamidated gliadin IgG test is about 98% specific for celiac disease.

https://www.celiac.com/articles/22055/1/Diagnostic-Performance-of-IgG-Anti-deamidated-Gliadin-Peptide-Antibody-Assays-is-Comparable-to-IgA-Anti-tTG-in-Celiac-Disease/Page1.html

That plus your noticeable reaction to gluten means that even if your mucosa is not damaged, you are almost certainly somewhere in the process of developing celiac disease. Mucosal damage can be patchy too, so it's possible that the biopsy simply missed damage. You have about twenty feet of intestine so the tiny samples for biopsy really don't cover that much of it. It's actually a really good thing that there isn't a lot of damage!

By the way, you may find your anxiety disorder improves considerably once you're gluten free. Lots of us (me included) had problems with anxiety and our anxiety flares when we eat gluten by mistake.

[tea-and-crumpets]

That anti-deamidated gliadin IgG test is about 98% specific for celiac disease.

https://www.celiac.com/articles/22055/1/Diagnostic-Performance-of-IgG-Anti-deamidated-Gliadin-Peptide-Antibody-Assays-is-Comparable-to-IgA-Anti-tTG-in-Celiac-Disease/Page1.html

That plus your noticeable reaction to gluten means that even if your mucosa is not damaged, you are almost certainly somewhere in the process of developing celiac disease. Mucosal damage can be patchy too, so it's possible that the biopsy simply missed damage. You have about twenty feet of intestine so the tiny samples for biopsy really don't cover that much of it. It's actually a really good thing that there isn't a lot of damage!

By the way, you may find your anxiety disorder improves considerably once you're gluten free. Lots of us (me included) had problems with anxiety and our anxiety flares when we eat gluten by mistake.

Thank you for that link, Skylark. You know how there are five or seven stages of grief? I think I'm at denial. I keep reloading this page and reading over again all the responses so that I can convince myself that it's true.

[Jennirube]

I got a copy of my blood test and biopsy results. I'm so mad! The doctor only took THREE samples during the biopsy. I thought she was supposed to take more than five? I feel like I did the procedure, anesthesia, etc for nothing.

Here's what I have. Can anyone help me interpret them?

Endomysial Antibody IgA

t-Transglutaminase (tTG) <2 (negative 0-3)

Immunoglobulin A, Qn, Serum 242

Antigliadin Abs IgA

Deamidated Gliadin Abs, Iga 3 (negative 0-19)

Antigliadin Abs, IgG

Deamidated Gliadin Abs IgG 31 (moderate to strong positive >30) -- it was this result that triggered the biopsy

t-Transglutaminase (tTg) IgG 2 (negative 0-5)

The biopsy shows 3 samples negative for celiac disease. No H. Pylori in the stomach and some acid problems in the esophagus. That's what I originally went to see her for two years ago and she's been on me to get a scope for it ever since. At the end of the day, I was told to fill a script for antacids and go on my way. This doctor has also told me that I can take immodium every day, forever. I think I'd rather figure out why I have chronic D.

I feel like I'm going crazy. I went gluten free on Sunday and started to feel great almost immediately. Starting Monday, I woke up for the first time in eighteen months without horrible stomach cramps. I had one bad night of gluten withdrawal symptoms but I have had more energy than I have in so long. I ran errands this afternoon and was able to go to six or seven different stores. Two weeks ago, the last time I tried to buy groceries, I made it to the market that's five minutes from my house, spent a few minutes there, and came home to take a nap.

But yesterday and today I've felt rotten, both times after eating something with buttermilk powder. (Stupid, I know, but I was looking for wheat ingredients. I know better! I will look better in the future, for sure.) I had to run to the bathroom and spend a lot of time in there. But now I feel like -- what if it's just lactose intolerance? I had that as a baby but grew out of it. I had to be on special formulas, etc. I just figured it was back. So if it is just lactose intolerance, I just redid my whole kitchen, gave away all my gluten food, filled my cupboards up again, bought new toaster and pots and pans and for what?

I respect the experience and education that doctors have, but I take what they say with a big handful of salt. I was told in my early 20s that I did not have poly cystic ovarian syndrome, which turned out to be wrong. Because I didn't treat my PCOS, I now can't have children without lots of expensive fertility treatments. I will never again let a doctor blow me off. But if the test results are coming in like this, am I just grasping at straws? I know she won't certify me as celiac. I have a follow up appointment in a couple of weeks to discuss the biopsy but I'm tempted to cancel it.

I know that part of this is panic at the thought of going gluten free forever. And I know that the answer is to stay gluten free for at least three months and do a challenge. That high IgG result means something, right?

I started getting sick eighteen months ago, but I developed lactose intolerance and rosacea in the months before that. I am afraid this is all in my head or that I'm chasing windmills.

I know this is long. Thank you if you read this far. Any advice?

OMG you sound just like me. I had Chronic D daily for 5 years until my Vit b12 got back to normal. Now I only have it once in a while but now I deal with constipation. I have learned that you have to do what makes you feel better even if the correct diagnoses is not there. I am still struggling with this disease and eating gluten free.

If you haven't gotten a b12 test done yet you should!

Well best of luck to you.

[Skylark]

Thank you for that link, Skylark. You know how there are five or seven stages of grief? I think I'm at denial. I keep reloading this page and reading over again all the responses so that I can convince myself that it's true.

Gluten-free was a bit of a relief for me. I'd rather a diet change than medications. My gut works normally now. All the D is gone, and I don't spend days curled up around a heating pad wishing my stomach would stop hurting. My mental health is better and I'm not tired all the time either. I'd rather not have celiac, but figuring it out changed my life for the better.