I'm getting biopsied, and have been told I must consume gluten for a week beforehand. (I've been gluten-free for about 2 months now.) I don't want to eat any more gluten than I have to. I've seen suggestions of anything from one slice of bread a day to four. How much do you all think is reasonable? I was so sick prior to going gluten-free that the idea of falling off the wagon really doesn't appeal to me.

Being gluten free for two months, you most likely have had some healing during that time. I don't think a week of gluten can reverse that. Your biopsy may or may not indicate Celiac.

Research seems to indicate that you need to be eating gluten for longer than a week.

If you are going to still do the procedure, I'd eat a whole heck of a lot of gluten (more than four slices of bread per day!) I know it may make you miserable, but there isn't a point to the procedure unless its done correctly. You will have a higher risk of false negatives. However, if you are positive, then you DEF have it!

Good luck, and I hope it goes well. Hang in there.

That's what I was afraid of! I'll check with the GI who is doing the biopsy and see whether he thinks a week will be adequate. It was my GP who told me to eat gluten for a week, and I'm not sure where she got her info. In the meantime, I guess I'll go make myself another sandwich! I'll be glad when this diagnosis fiasco is over.

Unfortunately, even most GIs are so ignorant about celiac disease that I wouldn't be so sure that his answer will be true, either.

After two months gluten-free, you'd likely need to eat the equivalent of four slices of bread a day for three to six MONTHS to even have a chance of the biopsy being valid (and even then it could end up being a false negative, because you may have healed enough that it could take a year or more for your villi to be destroyed again).

One week of gluten at this point will very likely give you a false negative, and is probably going to be completely useless.

I don't enjoy being the bearer of bad news. But that is the truth.

I'm going to hope that, since I had such severe malabsorption problems, I'm not completely healed yet.

Good luck and I hope you have a "successful" test.

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Hi, I am new here so I hope I am doing this correctly. I apologize in advance for the length of this post.

I am "in the same boat" as you. My son was diagnosed unexpectly in October 2007. He was told he definitely has celiac disease because he also has DH (which we thought was exzema). We had never heard of celiac disease or DH before. My son suggested that I check it out because he remembered all my symptoms.

I had blood tests in November and they came back negataive for celiac disease. I am not sure which tests I had but I will find out on my next DR visit. The test may have been negative but my liver enzyemes were defintely not normal. It indicated that my liver was enlarged, had an US & was advised that I have a "fatty liver".

On the same day that I had the blood tests I went gluten-free. All by symptoms (except the fatique) disappeared. In 2 days my stomach felt normal - not that yecky feeling I had all my life. Within the first 2 weeks the nausea, insomnia, gas, and diarrhea disappeard, except for the odd time that I accidentaly glutened myself. When I first went gluten-free a rash broke out on my face (by nose & mouth) which was diagnosed as Rosacea - strange that it came out when I went gluten-free.

2-1/2 months after going gluten-free I had another blood test to check the liver enzyemes. The results were unbelievable according to the Surgeon that I was sent to for the biopsy. I will list the results so you can see what I mean - but first I have to tell you what my surgeon said.

"You can't be celiac because you are too fat" (maybe not the exact words but it may as well have been). When I told him I thought I had celiac disease since a child he said "Children don't get celiac". I almost walked out - I don't have much confidence in him if he believes those 2 statements. When I asked if he could send me for a different blood test he said that "It is too expensive". Imagine! I was so mad when I left that office that I couldn't see straight. Now I know what all you fellow Celiacs have been going through. These doctors have to be educated on Celiac.

He told me that I would have to eat gluten for 3 months before having the scope. I don't know if I can go that long. I have been eating gluten for just 1 week & a lot of the symptoms are back. I go to my family MD next week so I will ask him to send me for the "expensive test" for celiac disease. If that comes up positive I will cancel the scope. My son's Gastro told him to eat gluten for only 2 weeks before having the scope. Like you, the idea of eating gluten for that long scares me - I don't want to feel like that again. Even if the scope comes up negative I plan to stay gluten-free.

Here are my results -

Gamma GT (normal 1-33) mine was 906 before going gluten-free & 195 after 2-1/2 months gluten-free (sounds like the cause of the high 906 is gluten - don't you think?) The Surgeon was amazed - he wanted to know what I did to get it down - I said "I went gluten free" He had no comment. The new result is still high but it dropped considerably.

AST (normal 8-35) mine was 167 (now 35)

LDH (normal 42-166) mine was 187 (now 137)

ALT (normal 10-140) mine 234 (an indication of celiac disease as per MedlinePlus Medical Encyclopedia) (now 30)

Thanks for listening - it feels good to vent to someone that understands .

Wow, that is one ignorant doctor. It must have been hard not to storm out of there! Many people with celiac are not underweight. Some people actually gain weight as a consequence of celiac. And if he thinks that children can't have celiac, he really needs to educated. Do you know whether they ran the full celiac panel on you? That would be the way to go, though you need to be eating gluten to get reliable results, just as you do for the biopsy. Whether you get positive test results or not, you already know that you feel much better off gluten. I'd definitely agree that you should stay away from it.

I had positive blood test results and was talked into the biopsy by my doctor "to confirm diagnosis." If the biopsy comes back negative (as it very well may), I'm going to consider it a false negative. My medical history and my reaction to gluten are really enough reason to stay away from the stuff, even if I hadn't tested positive on the blood test.

Good luck with your doctors. I hope the liver issues continue to improve!

Are you now actively glutening yourself for the biopsy? I sure do hope not. That statement may not be popular with some but with your positive reaction to the diet and the fact that so many nasty numbers were so far going back toward normal ranges I don't think there is any doubt about gluten being toxic to you. You body is not going to like you injesting large amounts after finally getting rid of it. If you start to have unusually severe symptoms please contact your doctor as soon as possible and see if he will give you your 'official' diagnosis based on that. If that is the reason why you are doing the challenge. My doctor demanded gluten challenge after 2 months gluten free almost killed me, literally. It also logically set my healing back a great deal. And it was only a week back on. I could have never made it 3 months. You know now that gluten is poison to you, you don't need a doctors permission to eat gltuen free.

I think that with a family member diagnosed as celiac, your similar history and symptoms, and your amazingly positive response to the diet, you really don't need any more testing to know what you have to do!

Also I think the caution already mentioned about any severe symptoms is very important. Please be careful!

I agree - I have been eating gluten for 9 days now. I go to my GP on Monday for my monthly B12 injection so I figured I would eat gluten until then to see if he will send me for a complete celiac disease panel. I don't know exactly what he sent me for so I am going to ask for a copy of the report. I haven't seen him since my second test for the liver came back (I got the results from the GI). Maybe he can give me an official diagnosis with those results. It seems a no brainer to me.

I read somewhere that an ultrasound is sometimes given to diagnose celiac disease (especially for kids) & also there is a biopsy of the rectum that can be done. Has anyone had any of these tests?

I'm not sure as to whether or not this applies overseas, but in New Zealand, the "gold standard" test for Celiac is biopsy via gastroscopy, which involves inserting a "flexible telescope" down the throat and taking samples of the duodenum. As far as I know, a rectal biopsy (aka colonoscopy) usually tests for other, potentially serious illnesses. My GP has said that ultrasounds cannot be used to diagnose celiac disease - but then again, she has also sent me running in circles for several months now, so what can you say...

I have never heard of an ultrasound diagnoseing celiac. I have heard of MRI's being used for those that have severe neurological impact. Celiac will cause lesions similar to MS lesions but not around the mylin sheath. In the US the lesions are called UBOs (unidenified bright objects), they show up as a very white spot on films, but here they are not recognized as anything by most neuros. Mine looked at the films and said that they were nothing, lots of people have them and they didn't mean anything. It wasn't until my neurological problems started to resolve that I started researching on my own and discovered what the UBO's actually were.
As for the rectal testing, that is one of the most precise methods of diagnosing us. However it is not used in very many countries as the test is very sensitive and precise and tends to find too many of us. Gluten is absorbed by mucous membranes and in the rectal challenge they insert a suppository and then biopsy the tissue three hours later to look for the changes gluten will have on the mucous membrane. Some places also use the oral mucosa to do this rather than the rectum. Unfortunately as I mentioned these tests are not commonly in use. Too bad because they would save us a lot of pain from the months of oral gluten that are needed to reactivate the process in the intestine after being gluten free for a while and it would be a quick way to diagnose us before we were almost dead. But I guess then they wouldn't get all those dollars while they test for everything but celiac for years.

Just a couple more days to go, and I'm not sure I'm going to make it. I seem to be losing blood (stools have turned bright green). I'm going to call the doc and see whether we should continue with this.

If I'm not mistaken, losing blood that way would make stools blackish (or maybe really dark red?), unless you're a Vulcan

Maybe digestion isn't happening properly, especially is there's D. Food gets sent out before being broken down, so if you eat green veggies, well that might explain it.

If you have had a positive reaction, you got ill, from reintroducing gluten you have your answer. If your stools have turned green you are impacting either your liver or your gall bladder. Do not downplay your symptoms to your doctor. He may tell you to continue but it is your choice. It is now obvious that gluten is toxic to you, hopefully your doctor will be savvy enough to realize this.

Now I suspect that celiac-induced paranoia and too much spinach may have been the culprit. Move along, nothin' to see here...

Just to bring some closure to this topic, I'll tell you how it all came out. There was clearly visible damage when the doc did the scope, and the biopsy came back positive. I was relieved, though I was absolutely not going back to eating gluten regardless of what the test showed. I saw this mostly as a step to take to avoid getting hassled by future doctors. Now I can get back to my gluten free life!

Onward and forward, glad it is finally over and you now know, for sure and for certain. Let the healing begin.

I also just received results to my blood tests and they were negative (no specifics yet, should be in the mail, will get them soon).

So- to get this straight- you CAN have negative results but have Celiac Disease?

So confused and frustrated.

I'm looking for an actual diagnosis because I don't have straightforward symptoms and I have only been gluten free for 5 days.

I'm going down this road for my daughter, who is 15 months. She appears to be gluten sensitive and shows clear signs of improvement on a gluten free diet. 2 out of three of her blood tests came back negative. The test that came back positive often has false positives.

Since a gluten free diet is challenging and we don't know for sure if she has Celiac, we will want to try to reintroduce gluten in a year or so. By then, though, I imagine that it will be harder recognize symptoms if she does have it. (Until a few days ago I was changing 4 putrid diapers a day and getting up with her in the middle of the night).

I want to know for certain if we have Celiac so that we can make sure that we are gluten free for life if necessary. Am I being unrealistic? Should I get a biopsy ASAP before I am gluten free for too long? Where can I read about how the biopsy is performed?

Thanks for your help- I am a first time poster.
Shelly

Hope that things work out for you.....

Hi gfjayhawk,
I am so glad your biopsy came back positive. I was waiting to hear your results. So many people say that 2 weeks is not enough time to eat gluten after being gluten free. My doctor said I had to go 3 months and I was gluten-free for 3.5 months. I am so sure that I had celiac disease all my life - I don't think that my intestines would heal that fast - especially when all the symptoms came back after eating gluten for only a few days. I gave my doctor an ultimatum last week - do the scope soon or I was cancelling it and going gluten-free forever. The fatique, nausea & dizziness were too much! So....I am going for my scope on the 20th. That will be 1.5 months on a gluten diet. I can't wait - one more week to go. Since your biopsy was positive I feel sure that mine will be too - as long as he gets enough samples in the right places.

Good Luck on you new Gluten Free life

Wow, 1.5 months on gluten sounds like a nightmare. I hope your biopsy comes back positive. Since you are so miserable, I have high hopes that it will. I'm convinced I've had celiac for my whole life, too. I'm not sure how long it will take to really heal my insides, but I suspect it will take a long time. I really hope the medical profession comes up with better ways of diagnosing us in the future. Making us damage ourselves like this seems like a really primitive and dangerous tactic.

Thanks for the congratulations! I'll be waiting to hear how your biopsy comes out.

Hi 'gfjayhawk'
Finally, I have something to report. I received the results of my biopsy on April 15. It was Negative unfortunately . Only 3 specimens were taken of the jejunum (I was hoping for more). Here is what the report said - "Small intestional mucosa with mild lymphocytic infiltration. No pathological changes of celiac disease is identified." The way I read it is that there were changes but not enough for them to say it is celiac disease. Nevertheless, I am Gluten Free for Life . It is 4 weeks now & I am feeling pretty good except for the occassional nausea (probably due to CC) & the fatique. I am patient about the fatique because I know it will take quite a while for that to get better.

Now I have to convince my sister to get tested - without a positive result from me she will not want to go. Her children & at least one grandchild shows signs also......but she is stubborn.

My son who has DH & had positive blood tests & biopsy is doing well. His DH has cleared up completely. . My other son is still waiting for the results of his blood test. He was away on business for 2 weeks so I hope he will go to his doctor this week for the results. A lot of his symptoms are the same as his brother except for the DH. I hope he gets a positive diagnosis right away so he doesn't have to go through what I am going through. He hasn't tried going gluten-free yet (which is a good thing) but he is ready when/if he gets a positive result.