MitziG

Tom, depending on the extent of the damage, a week or two could make the difference between a positive or negative result. For instance, if the OP has only mild villous blunting, a week or two could make the villi appear normal. After all, the intestinal lining renews itself every three days. Now, if the OP has total villous atrophy, likely a week or two would make no difference. But since they have no way of knowing the extent of the damage (if any) all precautions should be taken to avoid a false negative biopsy.

The blood tests are very reliable, howver, most doctors won't give you an "official" diagnosis without a biopsy. As was mentioned above, biopsies can easily miss celiac, so whether you get an "official" diagnosis or not, trust the bloodwork. False positives are almost unheard of.

That said, in the UK you may be eligible for subsidized gluten free food, for which you would need an official celiac diagnosis. So be sure to find out before deciding to opt out of the biopsy.

Also it is critically important that you do NOT go gluten free until after the endoscopy. Biopsies look for damage, which can heal quickly on the gluten free diet.

Welcome to the forum, you will learn a lot here.

Exactly. I was one of those who had several periods of "remission" throughout my teenage and young adult years.  I had been told by doctors that I had outgrown my "wheat allergy" and since it didn't make me sick anymore I believed them. But celiac stays forever, sometimes quietly lurking, waiting for the next illness or stressful event to make it active again. It is frustrating when you talk to people who swear they or their children outgrew it. I simply tell them that doctors only recently learned that the disease never actually goes away, even when it seems dormant, and suggest they look into some recent research. Its pointles to send them to thei doctors- few of their doctors would even recognize the fact.

I believed I had some weird, unidentifiable disease that would ultimately kill me. I believed I was slowly dying. I believed I would never feel better. So glad I was wrong!

I would not consider her chance of celiac small at all. She has the genes. She has symptomms. She has a positive response to a gluten-free diet. She is a celiac.

Blood tests in young children are not great at catching celiac disease (even worse when they don't run a full panel!)

It is probably the rice cakes- guessing they were cc with oats, which would not have to be labeled. Most oats are cc with wheat.

As for PF Changs...could be anything. Sadly, the risk with eating out is a big one, and those who have severe reactions like your daughter often opt to just stop taking that risk!

And if you don't know "what cutting dairy out will do"...well I have to ask,"what rock have you been hiding under?!" Gluten and casein are the two most inflammatory foods there are, and are responsible for a myriad of health issues, for more people than just celiacs!

Actually, the stats you quoted for the DGP were for the older test. The new ones have something like 99% specificity.

For your sake, I hope you are right, and this all goes away. But I wouldn't count on it.

Also wanted to add...in regard to blood tests. The only tests my doc ran were the TTG IGG and TTG IGA. The IGG test was 6, a weak positive (less than 4 was normal) the IGA test was negative. Yet when I had my endoscopy the damage was so severe it was visible to the naked eye- dr dx me on the spot and said it was clear I had celiac for many years. Biopsy showed total villous atrophy.

Do not let your doctors tell you that you have to be highly positive to have celiac! Positive is positive. It is sort of like being a "little bit pregnant"!

I know you don't want this- none of us did either. The reason everyone is being so insistent is because we have all "been there, done that." Yes, you would think a GI who specializes in diseases of the gut would know what he is talking about- but the truth is, few do. There is a lot of relatively new research on Celiac Disease that the vast majority of docs are in the dark about. Celiac isn't profitable. There is no pill they can prescribe. Therefore, they aren't being educated about the latest info by pharmaceutical reps. They just don't know. Those of us who have suffered have scoured every bit of info available...we KNOW.

Yes, your ttg could be elevated because of inflammation- possibly. But the DGP? Nope. Gliadin IS gluten. Your body is making antibodies against gluten. Period. If you can't accept that, get the EMA- I bet it is positive too.

As for feeling better when you eat gluten, that is typical. Many of us, myself included, craved gluten, and felt sick when we didn't eat it. Gluten has an opiod effect, just like a heroin addict feels better when they take a hit, it doesn't mean they need heroin, or that it isn't bad for them. I never felt sick after eating gluten- but I felt crappy fatigued all the time, and I had bouts of "IBS" type symptoms. I was only tested because my son and daughter were diagnosed. And I found out the reason I felt like death all the time. And now I feel pretty darn great.

None of us would wish celiac on you. But we can see pretty clearly what many can't, simply because of experience. In a perfect world, you could rely on your doctor totally to give you the best advice. But you are hearing from people who have been misled and failed by those same doctors, for years and years, before FINALLY finding out what the problem was. I hope you will hear what we are telling you.

And colonoscopies are big money makers for docs and not that much value. Do some research- it soured me on them!

I would personally just consider him celiac and start him on the diet. Perhaps the doc will agree to dx him based on resolution of the growth issue on a gluten free diet.

The bloodwork isn't going to show it as long as he is deficient in iga and igg.

It sounds like they didn't even biopsy the duodenal bulb so of course they missed it.

I would say enough is enough.

I am going to provide you the opportunitty to save a lot of time, pain and frustration.

You are not likely to test positive on any celiac test. It isn't impossible, but it isn't likely.

You either have celiac or gluten intolerance. Your gi will suggest you do a gluten challenge, probably eating a full load of gluten for several months, at which point he will test you. If you have celiacs, you have a 70% chance of getting a positive test.

If you are gluten intolerant, you have a zero % chance of getting a positive test.

Here is what you know- gluten makes you feel bad. So do a bunch of other foods.

Here is what WE know. If gluten makes you feel bad, you are either celiac or gluten intolerant. If you are either of those things than even teeny bits of cross contamination (such as with shared cookware or oats) will make you continue to feel bad. It will also cause you to develop other food intolerances.

Avoiding gluten is not like "cutting back" on other foods. It has to be an all or nothing thing if you want to heal. We can't tell you if you have celiac, but we CAN tell you that with your symptoms and another autoimmune disorder already going on, you are NOT barking up the wrong tree! Gluten is your root issue, whether you have celiac or not. So...your choice now. You can spend the next few months in misery trying to get a test result that proves this (but quite possibly will not) or you can accept the obvious and commit yourself to being 100% gluten free and a few months from now probably be seeing a positive change in your situation. I think we all understand wanting the "validation" of a diagnosis, and there isn't anything wrong with that. But they are hard to come by and you will be subjecting yourself to a lot for that "chance".

Yep, second the above. Unless you are suicidally depressed, I would hold off a bit. Depression and celiac go hand in hand and MANY people find that they no longer need meds after awhile on the diet. Once you start meds, it can be a vicious cycle...you don't just stop them and have things bounce back to the way they are.

They have their place, I am not anti-antidepressants. They saved my life. But don't go down that road unless you must.

If your depression is severe and you feel suicidal however, please seek help asap. And again, avoid your gp. They are uneducated about psychiatric meds and will toss whatever the latest pharmaceutical rep gave them at you. If you are going to do it, go to an expert.

I am going to be brutally honest because I sense you are looking for a way out- and you aren't going to find it.

You have celiac. No, your doctor didn't follow protocol in testing, but the blood tests are very accurate and your positive response to the diet confirms 100% that you are celiac. No ifs, ands or buts hon.

Sadly, celiac is a whole ball of ongoing health issues and for most of us, going gluten free does not magically make them go away.

What happened to you is typical. Initially, just eating gluten free was enough. Your body was so sick that the relief was immediate and profound. But defying logic, as usual, it didn't last. Welcome to the club.

As your immune system recovered it became hyper- vigilant. It is doing its job. It knows that gluten kills you, so its mission is to kill it first. Every teeny molecule. Living in a shared household with gluten eaters is almost a guarantee for cross contamination. Everything the above posters said is 100%. You need to go thru every item in your home looking for wheat- from Grandma's hand lotion to baby's teething biscuits. If they touch it, you touch it...and you put your hands in your mouth. Bam. Wash wash. As for staph, yes, get the biopsies done for DH. And with all the antibiotics, your gut bacteria are screwed up, start taking probiotics. Now.

Lastly, do not think for a second that you should humor your ill-informed relatives and "try a little." Your life is on the line. They don't understand this disease. They don't understand that a little gluten may not make you sick, but may set an irreversible chain of events in motion that leads to your death.

Do they want to care for you when you have lupus? Or MS? Or lymphoma? Or rheumatoid arthritis? Or type 1 diabetes? Are you prepared to have them raise your child because you are bedridden the rest of your life with dozens of chronic autoimmune issues? Because THAT is what they are asking you to do.

Now, you can put yourself thru a pointless gluten challenge that may or may not confirm what has already been confirmed. And you can risk everything. Or you can accept the fact that you have this, that continuing health struggles are going to be par for the course, and step it up a notch. Your choice.

As you probably gathered by now, there is no definite answer yet, but theories abound. One that was written about in the book "healthier without wheat" made the most sense to me, so I will share it.

When gluten protein is put in a petro dish with healthy tissue, the tissue suffers damage. Gluten itself is toxic to tissue. Now, if you have a healthy mucosal barrier in your intestine then theoretically, gluten would pass harmlessly thru. However, most everyone suffers SOME danage to that barrier, whether by antibiotics, illness, surgery, even stress can damage it. Once the tissue is exposed, gluten comes into contact with it, and voila, damage. In celiac disease, you have an auto-immune response where your own immune system is putting holes in your intestine, in addition to outside causes.

So...the root cause is different, but the end result is the same. Damaged intestines, and a permeable intestinal barrier, ie "'leaky gut" that allows harmful proteins, like gliadin, to enter the bloodstream where they can wreak havoc not just on the intestine, but the entire body.


If you subscribe to that theory, then you would possibly, with extreme care, maybe be able to restore your intestinal lining to health and it could again do its job. It seems doubtful to me though, that perfect restoration and maintenance would ever be likely unless you happen to live in a stress free, organic, non-inflammatory bubble....but....you know, its something to strive for! Anyway, if that happened, you could go back to eating gluten without issue. Which I think few people would be willing to risk.

A celiac, of course, could NEVER do that because any ingested gluten would just trigger the process all over again.

Now...your lactose issue there IS hope for. You don't need PERFECT intestines to digest lactose- just enough healthy villi that they produce lactase to digest it. That IS attainable, usually within 6 mos to a year of a gluten-free diet. But not always. Some peoples bodies simply don't work the way they should in that regard.

Hope this helped!