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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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parmeisan    2

Hi,

My doctor is, in his own words, "not an expert on Celiac disease". I have no intention of switching doctors because from what I've read, I am far more likely to end up with a worse doctor, not a better one - and I know this guy cares. He's also pretty agreeable so if I go to him with a list of tests I need done or medication that I want, as long as it makes sense, he'll give it to me.

Is there a reference somewhere that I can give him that will tell him what other things I need to be tested for, what other specialists I should be referred to, etc etc? Bonus points if it's prioritized because he's busy and I doubt he's going to be willing to do everything at once. It will take several 15-minute appointments to get it all done.

Failing that, you could all just tell me your opinions on what to test for, and I'll try to compile a list from it. :)

Oh, and I have already tested for iron, magnesium and B12 deficiencies.

Thanks!

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Lisa    457

Hi,

My doctor is, in his own words, "not an expert on Celiac disease". I have no intention of switching doctors because from what I've read, I am far more likely to end up with a worse doctor, not a better one - and I know this guy cares. He's also pretty agreeable so if I go to him with a list of tests I need done or medication that I want, as long as it makes sense, he'll give it to me.

Is there a reference somewhere that I can give him that will tell him what other things I need to be tested for, what other specialists I should be referred to, etc etc? Bonus points if it's prioritized because he's busy and I doubt he's going to be willing to do everything at once. It will take several 15-minute appointments to get it all done.

Failing that, you could all just tell me your opinions on what to test for, and I'll try to compile a list from it. :)

Oh, and I have already tested for iron, magnesium and B12 deficiencies.

Thanks!

Since you have already been tested for Celiac - Positive. I would recommend a Full Metabolic Panel, while you wait for your biopsy.

And as a note, do not go gluten free until you have your biopsy. Use this time to learn all you can as well as learn to read labels. :)

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GottaSki    459

A Complete Metabolic Panel provides information regarding your kidneys, liver, blood sugars and proteins, but does not check for key vitamin/mineral deficiencies.

Since you have already been tested for B12 and Iron, I'd add:

B1 (thiamine)

D

K

Ferritin

Copper

Zinc

If you did not have a full celiac panel - some docs only run a tTG IgA (tissue transglutaminase IgA) - it would be good to get the full panel before you go gluten free to have the data.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

As far as doctors - a GI that specializes in Celiac Disease is helpful, but once diagnosed there is no reason that you can't manage Celiac with your primary - especially if you have already found one that is willing to work with you.

Good luck with your endo -- remember to keep eating gluten until the test. You can go gluten-free immediately after the test, no need to wait for the results.

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IrishHeart    1,634

Here are the tests my GI doctor runs as part of my follow-up care:

CBC

CMP

SED RATE

C-reactive Protein levels

IRON/FERRITIN storage levels

B-12

Folate

Vitamin D

THYROID panels

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parmeisan    2

Oh, I should have said. I am already gluten-free and acting with the assumption that I do have celiac disease. I mentioned in the other thread that they are still planning on giving me a biopsy but I expect it to be inconclusive because I am not eating gluten. (I wish I had read your advice much earlier, Lisa! ... both Lisa's.)

Is "Ferritin" the same as "Iron/Ferritin storage levels" ?

Thanks all!

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IrishHeart    1,634

Is "Ferritin" the same as "Iron/Ferritin storage levels" ?

Thanks all!

yes, the amount of ferritin in the blood shows how much iron is stored in your body.

Hon, as I recall, many members did, in fact, tell you on the other thread that you would need to re-gluten for the biopsy.

And many of us also suggested since you had a positive blood test that maybe it was not necessary, but you said you wanted to have one done anyway, which is your prerogative, of course.

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parmeisan    2

I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.

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Lisa    457

I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.

Since you already have a diagnosis for celiac by positive blood work, a biopsy might be a good thing anyway, in the least, a base line test. And there are other issue to look for with an endo exam, regardless of whether your biopsy is conclusive or not. With any history of digestive issues, I personally think it's a good idea.

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GottaSki    459

I agree that getting the endo is still a good idea. While it is possible that your time gluten free may effect the results, you will still have the data for comparison should you have another endo in the future. I've had three: my first during diagnosis, my second at a year showed almost no improvement although I'd been completely gluten-free and my last was because I've had some digestive symptoms pop back up the past months. Getting a snapshot while you are newly gluten-free is worth it since you have never had one.

Additionally, as Lisa mentioned they do look at other parts of the digestive system on their way down.

Good Luck :)

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IrishHeart    1,634

I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.

I remember. Yes, that happens a lot. Not to worry, though. You have a diagnosis via blood work, you feel better off gluten and your GI doc is doing the endo/biopsy. You are doing all you can do.

So, you decided NOT to "gluten up"?--and just going to stay off it and see what it looks like?

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parmeisan    2

Well, I couldn't stand the idea of being on gluten for a full 3 months, so that's right out. I guess I haven't really decided yet about how long. I was thinking 1-3 weeks? Enough to get *some* chance of a positive biopsy without hurting myself too bad. Right now I am just finally starting to feel so great so I don't want to lose that, either. If you guys think that it's possible to be off gluten for like 6 full months, and not go back on, and still get something out of the biopsy, then maybe I could try that. Or is that with a week or so back on gluten?

I'm totally up for suggestions on whether or not to back on gluten and for how long. I still have about 2 months before the biopsy but I don't think I want to be on gluten for more than 3 weeks unless you all think it's really the best way.

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GottaSki    459

This is a tough call. I can't remember - you had positive celiac blood tests, right?

Given the following variables:

- any positive celiac blood work

- improved health while living gluten-free for several months

- harsh reactions to consuming gluten

I would not eat gluten at all.

The reason I say that in this scenario is you could ingest gluten for very little gain - a positive blood test and positive reaction to removing gluten leaves no doubt of Celiac Disease. The endoscopy may still show damage and the biopsies may still indicate Celiac - mine did at a year strictly gluten-free. The endoscopy may indicate little or no damage which could mean your dietary changes have started healing or your damage had not yet become severe.

I'm just not seeing the benefit of making yourself ill in this scenario.

If any of the above variables are different, I might suggest the challenge - hard to say - everything I have read indicates the best chance for correct results is a challenge of at least 6 weeks.

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IrishHeart    1,634

I think that what Gotta Ski has reasoned out here with you makes

perfect sense.

I told you before that I honestly felt a positive blood test was enough for a DX (IMHO) if I were you-- but I also understand why you want to do the endo/biopsy. I have to have a follow up biopsy myself next year. (Doc wants to be sure I'm healing as I was left UNDxed for so long.)

I, personally, would never be able to withstand a gluten challenge

and I would never put myself through that again, so I do not blame you one bit for not wanting to eat it again. :unsure:

Whatever you decide, I wish you all the best!

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parmeisan    2

OK, well that helps. I did have a positive blood test although I was never able to confirm from my doctor about how sensitive/specific they were (he told me that the one I tested positive on was just used to measure compliance - but I think he doesn't really know much about the tests). And yes, I have felt much better off of gluten. And a dozen symptoms that from my reading can come from celiac disease. I'm not sure about the harsh reactions to gluten - maybe, or maybe I still have an undiscovered allergy. Haven't figured that part out yet. But I feel very confident at this point that I do have it.

If 6 weeks is the absolute minimum for a challenge, then I may as well not bother at all. Especially if you are saying that it wouldn't be odd to find damage after a year. The GI did say he wanted to do the test even I wasn't challenging, that they just needed to know that going in. Maybe they take more samples. So I'll continue to stay off, and I'll just make sure they know that's the case. (I was kind of looking forward to eating a couple of things just one time more, but I'm also relieved at the thought of not poisoning myself again, even just for a week.)

Thanks again. I am so glad I found this forum.

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GottaSki    459

I wanted to be clear about something:

I think it is probably unusual, not common to have damage at a year. I did have very severe damage at diagnosis - I didn't mean to suggest everyone with Celiac Disease would have the same results - only to show that sometimes post gluten free endoscopy do show damage.

There are NO absolutes in those with Celiac Disease.

Again I'm operating off the fact that you had positive blood work and are therefore Celiac - so I personally don't see the need to challenge for the endo. If you and your doctor feel that you need the biopsy to diagnose - a challenge would be appropriate - I don't recall - does your doctor know you've been gluten free. If you can tolerate the challenge, perhaps they would want to postpone the endo to give the best chance of accurate biopsy.

It is unfortunate that this diagnosis process is not more clear-cut. It would be wise to ask for copies of your blood test results so that you know which tests were run and the results. This information is important to have now and to be used as reference in the future.

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parmeisan    2

The blood results were thus:

- Anti-Tissue Transglutaminase IgA: 2.3 U/mL (negative)

- Anti-Deamidated Gliadin Protein IgA: 2.8 U/mL (negative)

- Anti-Deamidated Gliadin Protein IgG: 13.6 U/mL (positive)

I was never able to directly correlate the IgG to any research on sensitivity/specificity (ie, % false positives and false negatives). I thought I had, but my doctor told me it wasn't the same test. The words they use are always a little different than the words written on my tests. But I know that a positive test + symptoms + reaction is pretty darn suggestive.

The 6 week point is coming up on Friday. I am actually thinking now that I should try something that I *know* has a little gluten in it at that point. I have had several episodes of feeling sick that I have guessed must be cc, but it could also be an allergy or something. It's so hard to know what exactly made me sick. But if I'm actually getting sick now with just a little cc, then I should *definitely* react strongly to actual gluten now. I think before I maybe hadn't gotten rid of it as completely as I have this time (or for as long). Anyway, if I feel just fine, maybe it was a coincidence [edit: feeling bad the first time I tried to go back on gluten] and I can stay on gluten for the 6 weeks. If I feel bad, either right away or soon-ish afterward, then at least I've had one more, hopefully more "definite" reaction.

I know I probably shouldn't push it, but my parents are expressing doubts again about whether or not I'm celiac. I so want them to believe me enough that they get themselves tested. I'm kind of having trouble myself - I like to be certain about things. (This is me: http://xkcd.com/242/ )

Edited by parmeisan

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parmeisan    2

Every time I think I've made a decision, I find out something new. :P

I just did another celiac.com-binge and spent a couple hours surfing around on here. I discovered the possibility of gluten withdrawal, which I hadn't heard of before. So even if I get sick right away and don't eat any other gluten, and I get over it within a week or so (which seems reasonable because I've gotten over the cc's within a day - I'm guessing I'm not too sensitive yet because I'm still new at this) I might reset any progress I've made on getting over this addiction.

I just don't even know.

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Bubba's Mom    103

Every time I think I've made a decision, I find out something new. :P

I just did another celiac.com-binge and spent a couple hours surfing around on here. I discovered the possibility of gluten withdrawal, which I hadn't heard of before. So even if I get sick right away and don't eat any other gluten, and I get over it within a week or so (which seems reasonable because I've gotten over the cc's within a day - I'm guessing I'm not too sensitive yet because I'm still new at this) I might reset any progress I've made on getting over this addiction.

I just don't even know.

Yes..this comic looks like your reasoning right now. LOL. My recommendation would be to keep with the gluten-free for now. Without a reference range I'm not sure what your tests mean, but it's unusual to get a false positive.

What did the Dr, say? Are you trialing the diet or were you told to go gluten-free?

If you want inflamation to settle down in your system that might be due to gluten it's good to go for 3 months at least. It gives you time to heal and get the cc issues sorted out. Then, a challenge may be in order? If you were told you have Celiac then don't challenge at all.

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GottaSki    459

My recommendation would be to keep with the gluten-free for now. Without a reference range I'm not sure what your tests mean, but it's unusual to get a false positive.

What did the Dr, say? Are you trialing the diet or were you told to go gluten-free?

If you want inflamation to settle down in your system that might be due to gluten it's good to go for 3 months at least. It gives you time to heal and get the cc issues sorted out. Then, a challenge may be in order? If you were told you have Celiac then don't challenge at all.

I agree - give it three months or more gluten-free before you decide whether a challenge is a good idea. Removing gluten for a sufficient amount of time is often the best test.

Good Luck :)

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parmeisan    2

After the blood test, my doctor told me I "might" have Celiac. I asked him if it might be prudent to get off of gluten (at that point I knew very little) and he said OK, but that I would have to go on again prior to the biopsy. So I'd say that the diet was my choice. Anyway, after I tried to go back on gluten and didn't think I could stick with it, I talked to my doctor again and pushed him as to whether or not he'd be willing to give me a diagnosis without the biopsy, in case I ever needed it for anything. He said yes, but to talk to the GI in case he still wanted to do the biopsy without a challenge, which turned out to be the case. So... I don't think I'd call that "told I have Celiac". He wants to help and he's generally been a good doctor for me, but he really doesn't know what he's doing here.

I have been off gluten for nearly 3 months at this point (less about 10 days, I would say), going back to the three weeks I first challenged. Before that, I had been off for about 6 weeks. That's probably long enough to know? I mean, I certainly feel good right now. Great, even. But it's hard to know, and even harder for others who know very little about celiac disease to accept. And besides, even if I'm 98% sure that I have celiac disease (which on the good days, I am), this would help to tell me whether I have *other* allergies/intolerances/whatever that I need to know about. If the reaction to gluten is similar to my mystery episodes, then case closed, right? At this point in time I should get over it quicker than I ever will in the future. And if there *is* no reaction, then extra-bonus: I can challenge somewhat properly for the biopsy.

It sounds so reasonable (to me) when I think about it like that, but it IS stupid, isn't it?

PS. I believe the reference ranges for all three tests for "greater than 10 means maybe Celiac".

Edited by parmeisan

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