Advice On Re-Glutening

[parmeisan]

Hi,

I had a positive blood test for Celiac Disease a few weeks ago. When I saw that my biopsy would not be for 5 months, and feeling that my symptoms (migraines, stomach pains, etc) were unbearable when I knew how to fix them, I decided to go on the gluten-free diet for a while. Yes, I know that many of you would probably have told me not to, but what's done is done.

Now I am looking to re-gluten, as I knew I would eventually have to do. Assuming I do have Celiac or at least an intolerance (as if I don't, the question is moot) I would like some advice on how best to do so. I have some time yet before it's 3 months before the test, ie when I need to be at a certain minimum level of gluten per day... so my question is, will I be in less pain if I try to re-introduce it slowly, just a bit per meal or per day, or should I just go all out and gluten myself like crazy?

I suspect that probably no one knows for sure which is best, but personal stories and/or best guesses about one vs the other might help too.

Also welcome: any other suggestions you might have for me.

Thanks!!

[rosetapper23]

Okay, you're going to get varying responses on this. I'm in the camp that says that, as long as your blood test was positive, accept that you have celiac and cancel the biopsy. While false-negatives are common, false-positives are not so common. Leading celiac expert Dr. Alessio Fasano has stated in articles and publicly at conferences that if your blood test is positive, your symptoms resolve on a gluten-free diet, and the symptoms return when gluten is reintroduced, no biopsy is necessary. Biopsies used to be considered the gold standard; however, times have changed. Studies have shown that the accuracy of the procedure is based on the competence of both the surgeon and the pathologist. Also, sometimes the scope isn't long enough to reach the damaged area. Lastly, it's a hit-and-miss procedure, since the surgeon can't see the blunted villi and is forced to take random samples that may miss the damage. All in all, it's a straight-up gamble if you ask me. If you decide to go ahead with it, I hope you'll consider staying gluten free even if the biopsy comes out negative. There's such a high probability of your having an inaccurate biopsy, you should ignore a negative outcome, since your blood test was positive.

But, as I said, others will disagree. Only you can decide what's best for you.

[IrishHeart]

5 months? what the hell is your doctor thinking?

A positive blood test would be enough of a diagnosis for me. (if they are as accurate as they claim, what's the point?)

I would never be able to withstand a gluten challenge. I cannot imagine doing that to myself.

And yes, GOOD doctors like Dr. Fasano have flat out said the biopsy is no longer necessary.

To me, it's barbaric to make a celiac wait that long while consuming gluten and causing worsening symptoms.

It's your call, of course.

Oh, and where are my manners-- Welcome to the fold!

[parmeisan]

Okay, you're going to get varying responses on this. I'm in the camp that says that, as long as your blood test was positive, accept that you have celiac and cancel the biopsy.

Hi,

Thank you for taking the time to respond. However, I have done a lot of reading (books and internet forums) in the past few weeks, and I believe I have already heard most of the reasons not to have a biopsy. I have pretty much made the decision to keep the appointment:

1. For my own peace of mind & resolve. My symptoms were always pretty sporadic so I did not feel the immediate relief that many describe. I felt pretty good for the first week, but then not so well... did I gluten myself, or am I just not Celiac? Besides, I have General Anxiety and that means I really hate not knowing things.

2. I think that the chances of getting a positive diagnosis are pretty good. If I have Celiac, then I've had it for at least 9 years when I was first diagnosed with anemia, so my villi are probably pretty damaged.

3. For what I can tell others. As a few examples, it will: give me the confidence to tell other people, "I can't eat that" as opposed to "I won't eat that"; be easier for me to insist on care against cross-contamination at restaurants; make me feel less guilty when friends go to the trouble of making gluten-free meals for me; give me something to tell my boss about why I'm sick when I accidentally ingest gluten.

4. On a similar note, it will be much easier to get access to medical specialists. I know that if you've been Celiac for a while, you can have other issues that need to get looked at, such as vitamin deficiencies or other autoimmune problems, and that will be easier if I've been officially diagnosed. Also, nutritionists/dieticians... eating healthy was already hard for me, so it would be nice to have some professional advice in that area from someone local.

5. I live in Canada, so the cost of the biopsy isn't an issue... but I've heard that you can get some financial relief for the greater cost of gluten-free pastas, cereals, breads, etc if you include a medical report (the biopsy, I assume) and your receipts when you file your taxes.

Still, I do appreciate your advice. I know you're trying to help.

5 months? what the hell is your doctor thinking?

I suspect this is that "Canada" thing... possibly, specifically "Saskatchewan" where we have trouble retaining medical staff. However, I have long been a proponent of free health care because when it REALLY matters, they always come through. I would likely be dead right now if I had lived in the States, as last year my kidneys shut down on me and it just seemed like food poisoning at first. If we hadn't decided to head to the hospital exactly when we did (about 48 hours into the "food poisoning") I doubt I would have made it, and I doubt we'd have gone when we did if we had known we'd have to pay. So.. I won't complain.

Oh, and where are my manners-- Welcome to the fold!

Thanks!

[Takala]

:lol: :lol:

Q.

5 months? what the hell is your doctor thinking?

A.

$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

Yeah, I'd be perfectly willing to waste a half year of my life with migraines and more brain damage. Not.

[IrishHeart]

You are resolved to do this thing, and I am not trying to talk you out of it.

But, if you have done all the reading, then surely you know that no one heals immediately.

I did not have immediate relief. I am 18 months in and I STILL have symptoms to resolve. (this is what happens when someone goes undiagnosed for so long)

I have not met a single celiac with immediate relief. It takes 6 months to 2 years or more to heal from celiac damage.

If they INSIST on the biopsy in Canada for a DX, then there isn't much you can do, I guess.

If your blood work is positive, you have celiac, even if the biopsy is negative. It just means your villi aren't blunted YET.

So, let's say you decide to continue to eat gluten, despite a neg biopsy, well, now you are risking further AI diseases.

It is interesting you mention your kidneys shutting down. If you do not think that isn't relevant to celiac, you may wish to read more about the organs that are affected. Kidney damage and disease (like in my father) are very relevant.

And finally, your anxiety is gluten-induced. It is one of the top 20 symptoms of celiac. I know, I had it too. It's gone now!

But if it is going to make you feel at peace with this whole thing, then you absolutely should do it.

Best wishes to you!!

[parmeisan]

[quote name='IrishHeart' timestamp='1338761412' post='800369'

]But, if you have done all the reading, then surely you know that no one heals immediately.

[ravenwoodglass]

If your biopsy is in 3 months go back on gluten now. Eat at least 3 servings a day until the biopsy. Be forewarned that symptoms can be much worse when you add it back in than they were before you went gluten-free. Don't be surprised if it takes a few days for you to start to react. Maybe call your doctor to get your blood test redone before you start to see if the antibody levels have dropped since you went gluten free. Then keep your doctor advised of your symptoms and if they get to bad some doctors will stop the challenge and diagnose. There are quite a few of us who were not able to do a full challenge because of the severity of symptoms.

Good luck. I hope you get the positive endo you are seeking so it is worth the pain. You can go back on the diet the day of the endo and start healing as with positive blood tests you need the gluten-free lifestyle no matter what the biopsy results.

[psawyer]

I live in Canada, so the cost of the biopsy isn't an issue... but I've heard that you can get some financial relief for the greater cost of gluten-free pastas, cereals, breads, etc if you include a medical report (the biopsy, I assume) and your receipts when you file your taxes.

I, too, reside in Canada. I don't know of anyone who has actually benefited from the tax "break."

You can claim medical expenses which exceed 3% of your net income. You can claim the difference between the cost of a gluten-free item and the cost of a similar item. If you do not live alone, you must also keep track of any gluten-free food eaten by another household member--that food does not qualify. It is a non-refundable credit on Schedule 1. Expect the claim to trigger an audit. An audit will cover your entire return, not just the one deduction.

It sounds good, until you actually look into it. Then you discover it just isn't worth it.

[IrishHeart]

To answer your question about various diseases/conditions associated with celiac, here are some articles for you:

https://www.celiac.com/articles/21927/1/Celiac-Disease-Head-to-Toe/Page1.html

Open Original Shared Link

Open Original Shared Link

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/Kidney-Disease-and-Celiac-Disease/

I did not mean you were going to ignore me in a dismissive way,

by the way, I just meant you were going to ignore what I suggest to you because you have your mind made up already. And that's your prerogative. It's your body and your health. It was not a criticism, and not intended to be one at all. It was just a statement.

I respect your decision!!

[IrishHeart]

I didn't mean full healing - I wasn't expecting that. A lot of people talk about some immediate relief though - I was only trying to point out that the gluten-free diet has not proved anything yet. (Specifically, I was responding to this from rosetapper: "if your blood test is positive, your symptoms resolve on a gluten-free diet").

You took that part out of context. She said "If your symptoms resolve and then return when you go back on gluten for the challenge, then many doctors think a biopsy is not necessary." And I am sure ROSETAPPER meant the symptoms resolve IN TIME.

A few weeks being gluten-free is not an adequate assessment for anyone to tell if the gluten-free diet is truly working. IMHO

[parmeisan]

Maybe call your doctor to get your blood test redone before you start to see if the antibody levels have dropped since you went gluten free.

Huh. That's very practical. And then I could get another blood test after I go back on. If the numbers go down and then up again, then even if the doctor doesn't diagnose, it would give me quite a bit of peace of mind on the question.

If your biopsy is in 3 months go back on gluten now.

I've still got 4 months so I am thinking a little more time gluten-free to see how it feels. It also gives time to get the blood tests set up.

You can claim medical expenses which exceed 3% of your net income.

Hrm. That right there probably makes it pointless for me. Thanks for the info.

To answer your question about various diseases/conditions associated with celiac, here are some articles for you:

Wow, thanks! I will read those today.

I did not mean you were going to ignore me in a dismissive way,

I'm glad to know that. Thank you.

You took that part out of context.

Ah... I think you're right, or at least I misunderstood it. Where I quoted it there though it really sounds out of context ie, IF you're Celiac, THEN expect to feel better. I was understanding IF you're Celiac AND you feel better... but misunderstanding how soon to expect to feel better. But I think the ones I am hearing about had it really quite bad before the diagnosis.

As I said, I still have time yet to go. So I am thinking the best "decision" for me at this point is just to stay off gluten for a few more weeks. Get at least one blood test during that period. Then get back on in time for the 3-months-prior-to-the-biopsy, get another blood test, and assess how I feel. As hard as it is for me (I hate not knowing; I hate not having decided something) I should not make any decisions until that point. Unfortunately, that makes it super hard for anyone they try to move up into that spot. But I guess that office doesn't just do biospies for celiacs... two or three months is enough warning for most gastroscopies.

Thanks all for your help and advice. (I'm not trying to shut you down, by the way, and saying "no more advice", I just mean I feel significantly better now, and thank you.) I'll try to keep you all updated as I find things out.

[jeanzdyn]

before cancelling the biopsy --are you getting an endoscopy, a colonoscopy, or both?

I would still get a colonoscopy, as that is also a method for detecting colon cancer, which is preventable if a colonoscopy is performed at the right time. In other words, while they are there, the doctor can remove any polyps, etc. and send that in for biopsy as well. AND they can test for celiac disease.

[Christine0125]

I re-glutened for the biopsy as I am much like you and wanted the confirmation plus I wanted to find out if anything else was going on (ulcers, etc). I had only been gluten free for approx 7 weeks prior to the biopsy. I only ate gluten for about 2 weeks and not in abundance and introduced it very slowly. I had my favorites (beer, some crusty bread) but I didn't overdo it because I knew I had celiac based on the bloodwork. After 7 weeks and a very short gluten trial the biopsy confirmed the diagnosis with sub-total villous atrophy.

[IrishHeart]

Thanks all for your help and advice. (I'm not trying to shut you down, by the way, and saying "no more advice", I just mean I feel significantly better now, and thank you.) I'll try to keep you all updated as I find things out.

Okay, hon! Well, good luck and do let us know how you make out.

Maybe you will feel so much better off gluten, that when you go back on to "re-gluten" for the biopsy, you'll understand what we mean about why some people just bag the challenge and go with DX from the blood test.

We can still help you out with a gluten-free diet, etc!!

[parmeisan]

I figure it's about time for an update. In a way a lot has happened; in a way, not much.

I talked to my doctor again and got a copy of my initial blood test results, two requisitions for further blood tests, and the assurance that he would not require me to get a biopsy in order to get me sent to further specialists (as per point 4 in my second post) if the blood tests and the challenge pointed to celiac disease.

My initial blood test results:

- 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)

(Which, because I am a bit of a math nerd, I calculated to mean that purely based on the last two blood test results, I have about a 60% chance to have Celiac disease. But I'm not sure I interpreted the tests right - I wasn't even sure what the first one was, for one thing. This is also ignoring all symptoms.)

Then, I got a second blood test (results came later) and went back on the gluten. I decided to go quickly, because I wanted to react as quickly and violently as possible. I got permission to work from home the Thursday and Friday before the long weekend (Monday off in lieu of Canada day, which was a Sunday) and then had all gluten-filled meals starting Wednesday night. I had gotten the impression somewhere that this would/should cause a Celiac to get quite very sick. Maybe this is the wrong impression? Either way, it did not happen. There has been little to no change for me.

I am determined to take nothing from this. For one thing, it is quite likely that I was not as gluten-free as I thought. In hindsight, I feel stupid because I never did figure out whether my BC medication was gluten-free or not. I guess I figured that that tiny amount wouldn't do any harm. But I have done all the reading; I should know better. It would certainly explain why I felt really good for about one week during the gluten-free trial and then only about average again. I don't recall if it coincided with my week off the medication but maybe it did. Or maybe there is another cause. But it means that going through with the biopsy will not be a difficult, painful thing.

I just called the doctor's office and finally got the results for the second Celiac Panel: the IgG actually went up after a month or so "off" gluten (13.9 U/mL). So, we will definitely not be making a diagnosis without the biopsy. I guess my doctor wants to see me for follow up but I can't imagine what he might want to say, so I expect there will be no real progress on my case until the end of October.

Cheers!

[ravenwoodglass]

IMy initial blood test results:

- 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)

(Which, because I am a bit of a math nerd, I calculated to mean that purely based on the last two blood test results, I have about a 60% chance to have Celiac disease.

Did they do a total IGA for you? If your total IgA is low that would make IgA testing worthless.

The test you did come back positive for is one of the newest and best tests for celiac. The fact that it is positive is significant and I think raises the likelyhood that you are celiac higher than 60%.

[parmeisan]

Did they do a total IGA for you? If your total IgA is low that would make IgA testing worthless.

They only did the three I named, so I guess not.

The test you did come back positive for is one of the newest and best tests for celiac. The fact that it is positive is significant and I think raises the likelyhood that you are celiac higher than 60%.

Oh, that's good to know! I was having trouble connecting the names given on the bloodwork results to names used online when explaining what the various tests mean. I thought that the Gliadin IgA was the test that had 70% sensitivity, meaning that the fact I was negative gave me 30% to still have it, but the Gliadin IgG was 90% specific, giving me a 90% chance. But that really was a lot of guesswork and I know it doesn't mean much anyway - 1 person in 100 would probably still have it if all of them had only a 1% chance. There's no way of knowing for that person just how lucky or unlucky they will be. I like numbers though.

[beachbirdie]

Hi,

I had a positive blood test for Celiac Disease a few weeks ago.

Thanks!!

Welcome.

From an economic standpoint, it doesn't make sense to do any more testing. You have positive bloodwork; you have celiac. But, since you are determined to go through with it, your best bet is to load up as intensely as possible to try generating enough damage to insure the outcome you seek.

[tom]

Welcome.

From an economic standpoint, it doesn't make sense to do any more testing. You have positive bloodwork; you have celiac. But, since you are determined to go through with it, your best bet is to load up as intensely as possible to try generating enough damage to insure the outcome you seek.

Parmeisan's in Canada, so like every other 1st world country but one, there is no economic standpoint.

[beachbirdie]

Parmeisan's in Canada, so like every other 1st world country but one, there is no economic standpoint.

Yes, that is true, but I didn't want to bring up health care politics unless the discussion took place in "anything but celiac", LOL.

[parmeisan]

That's not how I have understood it. From everything I have read, the tests all have some chance of false positives and false negatives. Some of the tests are as sensitive as possible, in order to pick up all the people who might have it, but naturally this means more false positives. Others are more specific, meaning that you get a lot of false negatives but not many false positives. Even those have something like a 98% specificity, meaning 2% of non-celiacs would get a positive. I have seen several threads where people on this forum confidently tell the poster that if they have a positive blood test, they are a celiac - but depending on the tests that were positive, there is a 2-10% chance that you are simply wrong. Now, I know having symptoms increases your chances significantly, but there is still no certainty. (Does anyone have the numbers on the particular test for which I was positive? I would really love to see them).

I have had no feedback from going off or back on gluten, so unlike many of you I cannot self-diagnose that way. I understand the tendency, once you are familiar with the disease, to see it everywhere - I am doing the same thing - but there ARE people who don't have it, and for those people, a gluten-free diet can hurt more than it helps, because it is difficult to get all your nutrients without wheat. And because gluten-free items tend to be high in sugar. And because if it isn't celiac disease causing troubles, it might be something else. A person could spend a year or more trying to eliminate gluten, going for tests, not feeling better, etc etc before finally realizing that they have made a mistake. I want to be as sure as I can. Besides, health care politics does play a part, unfortunately - if I were paying $500 a pop for these tests, I wouldn't be doing them, but I'm not, and I'm pretty sure the government isn't either, because nobody is artificially raising the costs. So it's my health, not finances, that drives me, and I've seen nothing up to this point that makes me so confident I have celiac disease that I will eschew the final test.

That said, beachbirdie, I appreciate your advice and I will certainly eat as much gluten as I can, especially in the weeks leading up to the test. I will also bear in mind that even the biopsy can have false negatives, and I will go back off gluten following the test no matter the results. But if it's negative, I will continue to explore other options, and I will probably re-challenge at least once to see what happens.

[parmeisan]

OK, I just did a little more research, and if I am correct, the tests I had were normally abbreviated as such (in the same order as before):

tTG

Anti-dGp IgA

Anti-dGp IgG

And from the information I could find on the last one, for which I was positive...

"The specificity varied between 97.3% and 99.3%." Open Original Shared Link

"...the specificity [ranged from] 94% (1 kit) to 100% (5 kits)." Open Original Shared Link

...you're probably right that the chances are pretty dang good. I thought I was the 90% one. The first two tests are both tests that depending on your genetics, some celiacs cannot have positive?

Well, I'll see what my doctor has to say next week, and maybe try to push him that we don't need the biopsy. I know he can't be an expert in celiac disease - no GP would be - but he's a good doctor and I know he wants the best for me. So I want to see what he has to say.

Sorry guys for being a little all-over-the-board on this.

[ravenwoodglass]

but there ARE people who don't have it, and for those people, a gluten-free diet can hurt more than it helps, because it is difficult to get all your nutrients without wheat. And because gluten-free items tend to be high in sugar. And because if it isn't celiac disease causing troubles, it might be something else.

Yes there are people that don't have celiac but they would not have positive blood tests. What some doctors call false positive bloods are people who had positive bloods but a negative biopsy. A true false positive on blood tests is very, very rare.

The gluten free diet will not hurt anyone. It is not higher in sugar unless someone wants it to be. People can eat loads of sugar and junk food on a regular diet or a gluten free one. There are no nutrients in wheat that can not be gotten from other foods. The only reason bread products have the nutrients they do is because they are 'fortified'.

The only thing that can not be tested for gluten free is celiac. Some folks can have more than one thing going on and doctors can test for other issues even if someone is on the diet.

[heather806]

Yes there are people that don't have celiac but they would not have positive blood tests. What some doctors call false positive bloods are people who had positive bloods but a negative biopsy. A true false positive on blood tests is very, very rare.

The gluten free diet will not hurt anyone. It is not higher in sugar unless someone wants it to be. People can eat loads of sugar and junk food on a regular diet or a gluten free one. There are no nutrients in wheat that can not be gotten from other foods. The only reason bread products have the nutrients they do is because they are 'fortified'.

The only thing that can not be tested for gluten free is celiac. Some folks can have more than one thing going on and doctors can test for other issues even if someone is on the diet.

Great post! I don't feel like I'm missing out on any healthy foods so far -- I never considered pasta, bread, etc healthy. It's only been a month or so but I'm eating healthier than ever b/c of the diagnosis. Not to say it isn't challenging at times (eating out).

In comparison to the original poster, my blood tests were positive but I'm not going for a biopsy. I see no point...I asked here on the forums for feedback on my notion and people seem to agree. And I can't imagine purposely doing more damage to myself (gluten challenge) just to have a doc say, "yep, you have damage." Of course, my blood tests were very much positive and given my history of vitamin malabsorption and severe anemia I have no reason to think those blood tests were incorrect.