Had Initial Appointment With Gi Today, I Don't Get It...

[Meg123]

Hi Again

The good news is that he basically took one look at my blood results and said I definately need the biopsy, so I didn't have to fight for it .

He spent time and looked at all my past history of tests etc.

He did say that whatever happens after the biopsy that I obviously need to get off the gluten. He told me not to just go light but to go free, so that was also good to hear, as I was planning on that anyway. He actually used the term gluten intolerance.

He said that yes it could be celiacs, but that he's never heard of anyone putting on weight when eating gluten, usually they lose it . Since I've been doing the challenge (6 weeks now) I've put on 7 kg's. Which is a lot of weight. I look seriously pregnant, and my face looks like eyes, a nose and a mouth on a blob of fat right now

Anyway, what I don't understand is that he said there's probably a 50% chance it's celiac disease ... ?? I don't understand where this comes from? All the reading I've done seems to indicate that it's about 80 - 90%....

Anyway, I'm feeling a quite fearful as the secretary said probably wont get me in for the biopsy until 6 weeks. Well, as far as I can see that's another 6 kgs, plus today i broke out in ulcers in my mouth.

I asked, and he takes 6 biopsy's.

he also wants a stool sample. From what I can make out on the scrible, it looks like he's querying 'malabsorbtion'. Can you detect malabsorbtion from a stool sample?

Also I had another blood test, looking for B12 deficiency.

He said not to worry about my consistently raised ESR, he said it's not that high and that a million things could cause .

I stressed as much as possible, how I need to get off the gluten asap, and the secretary said, she'd do what she can, but it's not looking too hopeful. Another 6 weeks seems like forever to me

Hope everyone is doing well.

[T.H.]

So sorry this has been so difficult!

  Quote

He said that yes it could be celiacs, but that he's never heard of anyone putting on weight when eating gluten, usually they lose it.

how sad that he's not familiar enough with it to have come across this. Every member of my family (4 diagnosed now) was overweight when diagnosed. When I get low level glutening from cc, my weight shoots up every time. I'm right there with ya.

His percentage makes no sense to me, either. Unless he's making some ridiculous conclusion re: your weight gain or something, bleh.

Do you feel like you need to get the biopsy, or would be be comfortable going off the gluten. If he wants you to go off the gluten whether the biopsy is positive or not...what's the purpose of the biopsy, exactly, then? If it's NOT for celiac disease vs. gluten intolerance, then going off gluten shouldn't affect it. If it is for celiac disease vs. gluten intolerance, how important is it to you to have a diagnosis of one vs. another?

shauna

[Meg123]

Thank you Shauna, I know what you are saying re the biopsy. I thought long and hard about it, and I do plan on going gluten free, but I would always wonder what the biopsy would show. I guess it is important to me. For a few reasons really. I want to (ideally, it I don't get a false negative) know for sure either way, since I have children. I also think it would help my friends and family support me more. Also only with a postive biopsy am I entitled to join the Australia Coeliac Society. (very supportive and informative etc) Also I just think I'd def stick to the diet well, if I knew it was celiac. Either way I'll def give the diet a good try for a few months.

Thanks for telling me about you and your weight, I was wondering...... I mean I see 'overweight' etc on symptom lists, but you cant' help but wonder. I cant' believe how much I've blown up in the past 6 weeks. I wonder how much of it is bloating, inflamation, fluid retention too.....

yeah, i def don't get the 50% thing

[mushroom]

Never seen an overweight celiac?? What rocks does this man hide out under??? Oh, maybe you're in Sydney and it's THE ROCK

The New Zealand Coeliac Society is like that too. I called up and gave them an earful, and told them that we gluten intolerants (if that's what I am because I was never tested) need just as much help and support as diagnosed coeliacs. She said I should have my doctor write them a letter - I told her I probably know as much about it as they do and I wouldn't bother

Actually, I do know where your doctor is coming from on the 50/50 part., although with positive bloods the odds of celiac are a lot higher, maybe 75/25. You can have positive bloods, negative bioopsy, positive biopsy, negative blood, negative both or positive both, and still have to be gluten free for life and still have the most horrible symptoms from gluten. The positive/positive is probably the rarest outcome, actually (and I have absolutely nothing to back this hunch up with so don't bother asking). It is just my gut feeling and after listening to Dr. Rodney Ford, and even reading Dr. Fasano's writings and research, that this throne of celiac that everyone worships at is actually the smallest part of gluten intolerance. Dr. Ford estimates that for every celiac there are three gluten intolerants When you think of all the negative blood tests not given biopsies, and all the positive bloods with negative biopsies, and all the people who have been patted on the shoulder and told they are not celiacs and to go away and eat gluten and be happy......aaaargggh, it just boggles my mind. Don't forget that there is an approximate 20-30% so-called false negative rate on the biopsy. Now, does this include all those people who are "merely" gluten intolerant, or does it only include misdiagnosed actual celiacs??? And who determines this?? See, many more questions than answers.

Now I know this is celiac.com, and this is what we are all usually here for, at least initially, but lots of us are gluten intolerant without meeting the celiac criteria, especially if being underweight is considered to be one of the delimiting criteria . I certainly hope for your sake that you get a definitive positive from your biopsies after suffering through this long process.

A lot can be read from a stool sample, depending on where he sends it and what he asks for. The primary testing is usually checking how fat is being handled, whether it is being digested and absorbed or just sitting there. They can also check for casein and soy intolerances, and also check for parasites and bugs like giardia, things like H. pylori, and on and on, so it's a good test to have done although he probably isn't going to do all that.

Anyway, try not to stress over it. What is, is. And he does agree that you need to stop eating gluten and he is going to take six samples. So the piece of paper will be nice to put in your scrapbook and show to your family that you do indeed have a diagnosable disease, which many would give their eye teeth for because of the same said family probleml. So hopefully you will get it Good luck!.

[ravenwoodglass]

Can you call your GI's office and ask to be put on the cancellation list? There are times when folks will cancel at the last minute and if you can go on short notice you may be able to slide into their appointment. Sometimes this can get you in sooner.

[Meg123]

  On 6/1/2011 at 11:30 AM, mushroom said:

Never seen an overweight celiac?? What rocks does this man hide out under??? Oh, maybe you're in Sydney and it's THE ROCK

The New Zealand Coeliac Society is like that too. I called up and gave them an earful, and told them that we gluten intolerants (if that's what I am because I was never tested) need just as much help and support as diagnosed coeliacs. She said I should have my doctor write them a letter - I told her I probably know as much about it as they do and I wouldn't bother

Actually, I do know where your doctor is coming from on the 50/50 part., although with positive bloods the odds of celiac are a lot higher, maybe 75/25. You can have positive bloods, negative bioopsy, positive biopsy, negative blood, negative both or positive both, and still have to be gluten free for life and still have the most horrible symptoms from gluten. The positive/positive is probably the rarest outcome, actually (and I have absolutely nothing to back this hunch up with so don't bother asking). It is just my gut feeling and after listening to Dr. Rodney Ford, and even reading Dr. Fasano's writings and research, that this throne of celiac that everyone worships at is actually the smallest part of gluten intolerance. Dr. Ford estimates that for every celiac there are three gluten intolerants When you think of all the negative blood tests not given biopsies, and all the positive bloods with negative biopsies, and all the people who have been patted on the shoulder and told they are not celiacs and to go away and eat gluten and be happy......aaaargggh, it just boggles my mind. Don't forget that there is an approximate 20-30% so-called false negative rate on the biopsy. Now, does this include all those people who are "merely" gluten intolerant, or does it only include misdiagnosed actual celiacs??? And who determines this?? See, many more questions than answers.

Now I know this is celiac.com, and this is what we are all usually here for, at least initially, but lots of us are gluten intolerant without meeting the celiac criteria, especially if being underweight is considered to be one of the delimiting criteria . I certainly hope for your sake that you get a definitive positive from your biopsies after suffering through this long process.

A lot can be read from a stool sample, depending on where he sends it and what he asks for. The primary testing is usually checking how fat is being handled, whether it is being digested and absorbed or just sitting there. They can also check for casein and soy intolerances, and also check for parasites and bugs like giardia, things like H. pylori, and on and on, so it's a good test to have done although he probably isn't going to do all that.

Anyway, try not to stress over it. What is, is. And he does agree that you need to stop eating gluten and he is going to take six samples. So the piece of paper will be nice to put in your scrapbook and show to your family that you do indeed have a diagnosable disease, which many would give their eye teeth for because of the same said family probleml. So hopefully you will get it Good luck!.

Thank you Neroli Yes it seems like one big expensive, painful, and sickening gamble really If it comes back negative, I guess I'll have to be asking why I have the positie ttg then? Perhaps it's another autoimmune disorder.... I dont' have any of the other conditions which are recognised as producing a postive ttg.

The next thing I'll have to do, is read more and more on here to teach myself about gluten intolerance. I'm still new to all this, so it's going to take a lot of will power, and education to get me in the right frame of mind to stay gluten free.

I was thinking today about someone like me who puts on weight with gluten, who doesn't have the horrendous D that so many have (I have small bouts of D, some bouts of minor C, and just really revolting abnormal stools which can only be described as mud, which makes a terrible mess, alternating with floaty.....I wonder if that means it's got fat in it?) Anyway, I was thinking that maybe this Gi hasnt' seen that many people with celiac disease who put on weight with gluten because so many of the general population wouldnt' dream that their issue WAS gluten. Where's the health campaign and awareness? . I've eaten less food in past 6 weeks than I usually do, becuase I always feel full and heavy, and feel like my food is coming up all the time.

[Meg123]

  On 6/1/2011 at 12:27 PM, ravenwoodglass said:

Can you call your GI's office and ask to be put on the cancellation list? There are times when folks will cancel at the last minute and if you can go on short notice you may be able to slide into their appointment. Sometimes this can get you in sooner.

Good Idea, I'll look into it.

This Dr only does his procedures / goes in to surgery once per fortnight at this hospital. I think he must travel around.

He wanted to book me in for today fortnight, which is is very next time in surgery, but his secretary said he's already fully booked, and that HE IS ON HOLIDAY FOR FOUR WEEKS AFTER THAT!!!!!!! So that is the issue

[Darn210]

  On 6/1/2011 at 12:40 PM, Meg123 said:

Good Idea, I'll look into it.

This Dr only does his procedures / goes in to surgery once per fortnight at this hospital. I think he must travel around.

He wanted to book me in for today fortnight, which is is very next time in surgery, but his secretary said he's already fully booked, and that HE IS ON HOLIDAY FOR FOUR WEEKS AFTER THAT!!!!!!! So that is the issue

I would still ask to be put on the cancellation list and since he's only available in a fortnight, I would even be prepared to go in at the last minute . . . that is, not eat or drink after midnight or whatever it is and tell the secretary/nurse that you are doing that so if there is a cancellation that morning you are prepped! It's not something I would do if he was in surgery a couple times a week, but since it's one day, I might take the chance and be ready.

[kareng]

He actually doesn't sound too bad. Most of them are taught that you waste away with Celiac.

I saw an interesting theory on a website about overweight, even obese, people having Celiac. His point was that we aren't absorbing the nutrients our bodies want and so we keep eating trying to fill that void. And because our whole 16 feet of small intestine isn't damaged on some people, we are able to get the calories in. This site sounded great up to this point, then it got wierd & wanted to sell us something. The English got bad (like that sentence )

Are you able to go to one of his other locations? Maybe go on vacation with his family?

[maximoo]

6 wks is insane! What kind of health care system do you have down under? Is is socialized like the UK & Canada? Or do you pay thru the nose like us Americans?

As far as I know there is no other disorder that would make you show antibodies to gluten. If I am wrong then somebody please correct me. I can understand your reasoning for getting the biopsy but for my kids I passed. They both have positive blood results. The bottom line is you gotta go gluten-free regardless. Think about it some more. I initially was quite willing to let my DD get it done but the more I've learned I realized how insane it is. Do you really want to go another 6 wks in your current state or start healing & feeling better asap? Whatever you decide good luck and a return to good health.

[October3]

  On 6/1/2011 at 11:56 PM, maximoo said:

6 wks is insane! What kind of health care system do you have down under? Is is socialized like the UK & Canada? Or do you pay thru the nose like us Americans?

As far as I know there is no other disorder that would make you show antibodies to gluten. If I am wrong then somebody please correct me. I can understand your reasoning for getting the biopsy but for my kids I passed. They both have positive blood results. The bottom line is you gotta go gluten-free regardless. Think about it some more. I initially was quite willing to let my DD get it done but the more I've learned I realized how insane it is. Do you really want to go another 6 wks in your current state or start healing & feeling better asap? Whatever you decide good luck and a return to good health.

My son is in the same boat with a positive tTG and some symptoms (recurrent anemia, tooth enamel issues). His GI told me ahead of the scope that there was only a 10-15% likelihood of him being diagnosed with celiac on the scope. I, like you, could not figure out what he was basing his numbers on since the reading I did said a positive tTG was much more indicative than that. But in any case this is a pretty well known, well respected pediatric GI doc who is the department head and a professor at one of the best med schools in the county so I'm thinking he might know more than I do about it. I just don't understand it. In the end my son's scope was negative and we don't have a diagnosis yet.

As for the tTG, though, yes it can be elevated with other autoimmune issues like diabetes and with liver disease and with some other GI inflammatory diseases such as with Crohns. Like you, my son doesn't fit any of these other diseases.