Positive Dgp Iga With Negative Biopsy?

[KRJ]

Hello -- been lurking here the past few weeks, reading and acquiring knowledge.

I visited the gastro last month due to a severe up-tick in my reflux symptoms. While there, she noticed the anemia in my history, started quizzing me, and decided to test me for celiac. This gastro is a very well-known reflux specialist, but she and the rest of the office seemed to struggle with ordering celiac tests. It was apparent she didn't do so often.

I got the results back from Prometheus: DQ2.5, 10x increased risk, high relative risk (I know most of you know those stats in your sleep!).

My serology was as follows:

DGP IgG: .6 (<1.3)

DGP IgA: 18 (<2.9)

TTG IgA: 1.4 (<10.3)

EMA IgA: Neg

Total IgA: 403 (44-441)

They didn't run the old gliadin tests. So really, it's just my DGP IgA that's high (and quite high, it seems to me).

Had a biopsy done last Thursday. I don't know how many samples she took or where she took them from. The nurse called today, said they were normal, and that I was fine. I asked why my bloodwork was so elevated, and she told me it wasn't, that it was "high" on a scale of "extremely low" to "extremely high"; that on the scale of 1-8, I was only moderate. Um, yeah... that's genetic markers. I'm talking serology, specifically DGP IgA. AGAIN, after that explanation, she says it's only "high" on a scale of "extremely low" to "extremely high". She said I could come in next month to discuss with the dr. Nice.

I had signed up for an eClinic with Dr. Rodney Ford a week or so ago, and prior to my biopsy, he felt (based on bloodwork) that I was probably in early stages of celiac and that there was a good chance my biopsy would come back negative.

So, I'm frustrated. I have symptoms. I have genetic markers. I have another autoimmune disease (Graves). I'm horribly anemic. I've struggled with infertility. I'm horribly fatigued. And then there's the intestinal discomfort that I've lived with for so long that I've adapted and started to not really think of it as being abnormal. What part of this is "fine"?

Dr. Ford suggested that I go gluten-free regardless of my results. My concern here (and I've seen several of you echo similar feelings) is that no one will take me seriously without a diagnosis. And when times get tough and I want a piece of cake on my almost 7-yr old's birthday, a diagnosis is what will keep me on track.

Any advice? Have any of you had similar bloodwork/biopsy results as mine?

Thanks for your help.

-- Kelley

[mushroom]

Hi Kelley, and welcome to the board.

What your nurse was probably trying to tell you about your DGP result is that the lab gives results on a scale. Each lab's scale is different but it could be something like 1-8 is negative, 9--20 moderately high, >21 extremely high, or something similar. 18 is not too far from 21, so I would agree that your DGP is high, and I would agree with Dr. Ford (whom I respect) that you had probably not yet done enough damage for it to show up on biopsy. If you were to continue eating gluten for another year I am sure your results would go up to extremely high and your biopsy be positive, meaning you had done considerable damage to your small intestine.

So what you need to decide is if you have the willpower to avoid gluten no matter what and go gluten free now, or wait until you have really damaged yourself so that you test extremely high with positive biopsy, and in the process do more damage to your body, at which time you will HAVE to go gluten free, or at least your doctor will tell you to and give you the piece of paper with the diagnosis on it. If it were me, I would consider myself diagnosed and quit gluten right now, knowing all the other mischief it can do to your body if you continue to consume it.

Not too many doctors are familiar with the ins and outs of celiac disease and you were lucky she even thought of testing you. But with symptoms, genetic marker, and anemia and Grave's disease it is obvious that gluten is already doing or has already done considerable damage to your body. I would follow Dr. Ford's advice and go gluten free, tell everybody you have celiac disease (only a small lie because I am sure you do, just not badly enough to test positive). Your health is more important than other peoples' opinions, in my book, anyway. But you can find a way, by being strict with the diet, showing them your reaction when you get gutened (and it will be worse once you stop eating gluten), and be firm with them (and yourself) that you will not eat it again knowingly.

As you say, many posters on the board have had trouble making this decision and commitment, but I believe it is important for you and your health; you really do not want to end up like me and so many other posters on here who did not know (and whose physicians did not know) about celiac disease. Most everything that is wrong with me is an on-flow from gluten

[RL2011]

Well said mushroom!

[nora-n]

the deaminated gliadin test is the latest and best test for celiac, and a bit more specific than the ttg test (which may be elevated because of other tissue damage)

Now I do not know what else could cause elevated deaminated gliadin tests other than celiac.

Now you are anemic, so there must be a lot of gut damage, but the biopsy must have missed the spots. (celiac nowadays is typically patchy, and the ttg test only picks up about 11% of patchy celiac)

I have read postings by people who had the video capsule and that one looks at every part of the intestine, and finally the video capsule found the celiac lesions.

Maybe an idea to get the official diagnosis?

[KRJ]

Thanks for the great replies, everyone. I think the sooner I learn to quit caring what other people say, the better off I'll be. I've been preparing myself to make a commitment to living gluten-free for the last few weeks, but I'm such a wuss when it comes to peer pressure! I'm 34 now. Somehow, peer pressure didn't bother me in high school, but I digress...

Mushroom, the nurse was actually referring to the 1-8 categories on my genetic test. I'm a 4 (and she kept saying, "You're a 4 on a scale of 1-8!"). My DGP is 18 EU/ml with a reference of <2.9 EU/ml. This is why I always ask for my printed results. And they FOUGHT me on that; didn't want to give them to me.

I heard back from Dr. Ford (who has been just wonderful with me) -- "Suggest that you go gluten-free and see if you feel better

Celiac disease is a progressive disease. Your other option is to stay sick until you have more severe symptoms and worse gut damage

[nora-n]

if you google the videocapsule and maybe include celiac in the query, there are some newish articles about the subject. This is quite new.

[Takala]

If you start practicing now, you should be able to get the gluten free cake and frosting edible by the time the birthday rolls around. ; )

You know what these negative biopsies remind me of ? You're driving down the freeway and manage to miss all the orange cones, temporary lane markers and cement dividers, so in spite of the fact that you are driving on subsurface that is ridged and pot hole patched, and managed not to hit anything, the the highway must be fixed.

[Skylark]

If you start practicing now, you should be able to get the gluten free cake and frosting edible by the time the birthday rolls around. ; )

That's easy! Grab the Betty Crocker gluten-free cake mix and one of the many gluten-free Betty Crocker frosting choices. Your daughter will never know the difference and you'll be able to share her cake.

[KRJ]

Takala, that's a terrific analogy!

And you and Skylark have given too much credit to my baking skills. If I can't get a gluten-based cake right, what makes you think I could do any better with a gluten-free one? LOL Good to know that even Betty Crocker makes a gluten-free mix, though. I do have friends who can bake, so...

Again, thanks everyone. Talked everything over with my husband last night, and he agrees with me that gluten-free is the way to go. Dr. Ford's assessment makes sense to me -- moreso than my in-person doctor's assessment. Until someone can present to me another cause of elevated DGP IgA results, as far as I'm concerned, the tests caught celiac disease in its early stages. I realized last night that my in-person doctor's opinion is no more valid than Dr. Ford's. I mean, this is his specialty and all.

[Takala]

Takala, that's a terrific analogy!

And you and Skylark have given too much credit to my baking skills. If I can't get a gluten-based cake right, what makes you think I could do any better with a gluten-free one? LOL Good to know that even Betty Crocker makes a gluten-free mix, though. I do have friends who can bake, so...

Most people have skills that they use to do something well. It is merely transferring some of those skill sets over to another activity.

Unless your friends are using dedicated gluten free cake pans, rubber spatulas, and mixers, and working on a clean surface with clean potholders, don't let them bake you a "gluten free" item at their house, because it will likely be cross contaminated. Instead, after you have set up for gluten free baking, you can invite them for instruction, if need be.

Since gluten free baking is a bit different than regular wheat baking, not being "good" at it isn't really a handicap, because it's just learning slightly different techniques, anyhow.

There are several principles of gluten free baking:

1. Blends of several gluten free flours or seed/nut meals work better than just a single type of gluten-free flour to get a good result, besides being more nutritious.

2. Gluten free flours tend to want to be baked at slightly lower temperatures for a longer time.

3. Many gluten free recipes are screwed up. This is because they were either not proofread and duplicated successfully, or the end user had to substitute because they are allergic or didn't have one of the ingredients, so flexibility is in order. Since each gluten free flour "acts" slightly differently, this means your binder, the substitute for the gluten stickiness, may not perform the same way in the altered recipe. Binders can include, but are not limited to, eggs, xanthan or guar gum, flax in hot water, chia seed soaked in water, soaked psyllium husk, pumpkin or sweet potato, or using a bit of pure gluten free apple cider vinegar and pre soaking some types of gluten free flours in vinegar water. Stickier gluten free flours include buckwheat (a seed), almond meal, amaranth, garbanzo bean, tapioca starch. If you want something to crumble and be dry, use straight rice flour.

4. Most gluten free recipes can be made to work by paying close attention to what the dough or batter LOOKS LIKE as liquid is slowly added, instead of dumping it in all at once, then being surprised that it's too runny - or too thick. Your typical bread dough will be much wetter and softer than normal bread dough, more like a thick batter.

Also, using a smaller loaf pan size always helps, such as an 8" by 4" or a mini loaf size and making 2 minis.

5. Testing something before you pull it from the oven is essential. This means you give it a bit of a poke with your finger, to see if it springs back. Then you stick a butter knife into it and see if it comes out clean. Otherwise, continue to bake. Following this simple advice can save you many, many doughy in the middle problems.

6. Microwave baking in cereal bowls is fun, and you can test many new recipes without using massive amounts of expensive flours. Flatbreads and pancakes on the stovetop, the same way. Dedicated clean gluten free cast iron is a wonderful cooking surface.

[gailc]

Negative biopsies-- what if you had allergy skin tests all using distilled water? What about a glucose tolerance test if you didn't drink the little bottle of syrup?

I was not consuming gluten but they did the tests anyway.

Why are doctors so adverse to accept that a person could be Celiac and still test negative?

gailc

--about 40 symptoms went away on gluten-free diet, including lactose intolerance.

[melissa222]

I'm curious if the diet has helped you? I also had a high DGP IgA, and just got my biopsy results...normal. Dr said it is not celiac, but celiac explains everything. Now I'm depressed because I had so much hope, but maybe there still is hope.