Unsure Of How To Proceed--please Help!

[AliceW]

Hello all,

This is my first post, and I'm hoping someone can help me...I'm very confused!

I have been having various GI issues for many years, and lately I've begun to wonder if a wheat intolerance could be to blame. I became very sick with mononucleosis at the age of 19, and from that point onward I had terrible gastritis/acid reflux on a daily basis, even though I'd never had heartburn for a day in my life up until that point (I'm 36 now). I've been controlling my symptoms with medication (a proton pump inhibitor, taken daily) for years, but lately my symptoms seem to have gotten worse. I've also been having a lot of gas (embarrassing!), bloating, and constipation for the last couple of years.

I've had two endoscopies (no biopsy, though), and they just showed gastritis. My doctor has no idea what's causing all my symptoms. I really want to get to the bottom of what's causing this and to try to get off the medication if at all possible.

Here are my questions:

-Can severe acid reflux/gastritis and gas/bloating/constipation be symptoms of wheat intolerance/celiac disease?

-Can gulten intolerance/celiac disease be triggered by something like a severe viral illness?

-Should I try a gluten-free diet and see if my symptoms imporve, and THEN go to the doctor, or is it better to ask for testing first?

-Is a celiac panel (blood work and stool sample) enough for diagnosis, or must I get another endoscopy (I hope not...they were horrible!)?

-How does one get tested for food intolerances in general? How would I know if I'm sensitive to soy or dairy, for that matter?

This is all very new to me. I am not allergic to anything that I'm aware of, so this whole food intolerance thing is a new concept for me.

Thank you for any information you can provide. I have an appointment for my yearly physical next week, and I'm not sure how best to proceed.

Thanks again,

Alice

[jerseyangel]

Hi Alice--welcome to the board

Lets see here..

-Can severe acid reflux/gastritis and gas/bloating/constipation be symptoms of wheat intolerance/celiac disease?

Yes, they can be. There are close to 200 symptoms of Celiac.

-Can gulten intolerance/celiac disease be triggered by something like a severe viral illness?

Yes. Pregnancy, surgery, extreme stress are some other things that can trigger it.

-Should I try a gluten-free diet and see if my symptoms imporve, and THEN go to the doctor, or is it better to ask for testing first?

It would be best if you continued with your regular diet, and have the testing done first.

-Is a celiac panel (blood work and stool sample) enough for diagnosis, or must I get another endoscopy (I hope not...they were horrible!)?

Some doctors still feel that the endoscopy/biopsy is the 'gold standard' of Celiac diagnosis. That idea is becoming outdated, though. A positive biopsy can rule it in, but a non-positive one cannot rule it out. Many, though will diagnose on positive bloodwork and positive response to the gluten-free diet.

-How does one get tested for food intolerances in general? How would I know if I'm sensitive to soy or dairy, for that matter?

There are blood tests you can get, through independent labs like Immuno Labs and others--I figured mine out through an elimination diet--on the suggestion of my allergist.

I have an appointment for my yearly physical next week, and I'm not sure how best to proceed.

I would go in with a list of your symptoms and history. Ask them to run the Complete Celiac Blood Panel.

Good luck at the doctors! Let us know how you make out

[CarlaB]

Welcome! I don't have anything to add to Patti's complete answer. She's right!!

[AliceW]

Thanks, jerseyangel and carlab!

In a weird way I almost hope that gluten intolerance is what's causing my problems, because at least then I'd have a potential way to solve them. But on the other hand, I ADORE pasta and bread (I love to bake bread) and I live in NYC and eat out all the time, so going gluten-free would be a major lifestyle overhaul. I know I'd miss certain foods terribly. I also travel a lot, and I can't begin to imagine how I would stay gluten-free when travelling someplace like Japan, for example...I've been there twice already, and there is simply no knowing what's in the food...it is unrecognizable (although delicious)...and the language barrier is such that finding out would be next to impossible.

Oh well, I'm getting ahead of myself....I'll just see what the results of the test are and take it from there. I just really, really, really want to figure out what's wrong with me once and for all.

Thanks again!

Alice : )

[happygirl]

Alice,

Welcome to the board!

Patti answered your questions very well.

I would like to add that there are many celiacs/gluten intolerant people on this board that believe that for them, mono (age 22) triggered their Celiac. I am one of them!

I highly recommend a book written by Dr. Green, a leading Celiac researcher and physician at Columbia University. It is called Celiac Disease: A hidden epidemic. It is a GREAT, factual resource.

Remember that a biopsy can only rule IN Celiac, not rule it out. (Damage can be very spotty, if at all, and the chances of them finding the flattened villi in some patients is very hard.)

On this board, you have members who have both positive bloodwork/positive biopsy, positive bloodwork/didn't do the biopsy, positive bloodwork/negative biopsy, negative bloodwork/positive biopsy (I have a friend that this happened to!)...some have negative on both....some were never tested. Some people have debilitating symptoms, some have NO symptoms whatsoever....and every thing in between.

My point is, Celiac is a medical "chameleon" and can be hard to diagnose. Or, you may have gluten intolerance and not Celiac. Either way, if eating gluten free (whenever you start it) makes you feel better, you don't need a doctors diagnosis or prescription or his orders to do it...you can do it on your own (if it gets to that point. Certainly, it is much easier to get a standard dx, but, sometimes, it doesn't work that way).

Let us know what we can do to help. There is no stupid question. We've all been there, and gone through the frustration of not knowing, and not knowing what to do. So let us help!

Good luck and keep us updated.

Laura

[AliceW]

I would like to add that there are many celiacs/gluten intolerant people on this board that believe that for them, mono (age 22) triggered their Celiac. I am one of them!

I highly recommend a book written by Dr. Green, a leading Celiac researcher and physician at Columbia University. It is called Celiac Disease: A hidden epidemic. It is a GREAT, factual resource.

Wow, Laura, that's so interesting that mono seeems to have triggered celiac disease for you!!! It has always seemed so weird and suspicious that I would have NO gastrointestinal problems whatsoever before having mono, but terrible symptoms requiring daily medication ever since...but every doctor I've spoken to has just shrugged when I've mentioned that.

So as for my upcoming physical, I guess I should continue eating gluten until then and ask for a "complete celiac panel" while there? And then I guess I could start the gluten-free diet immediately afterwards?

Anyway, thanks for your reply, Laura. I'll definitely check out the book you mentioned. I have such mixed feelings about all of this...I feel such renewed hope that maybe I've finally found a clue to what's been causing me all these problems for some many years, but I also worry about how I'll deal if it does turn out that I'm gluten intolerant. I'm afraid people would think that I've turned into a crazy hypochondriac!

Anyway, thanks again for the support and information!

Alice

[AndreaB]

Alice,

Everyone has given such good advice already.

I wanted to add that you could go through enterolab with a stool sample instead of undergoing a biopsy if you don't want to go through that again. Definately get the blood panel. Enterolab isn't accepted by a lot of doctors yet and if your bloodwork is positive you really wouldn't need to pursue it.

Enterolab does test for dairy, soy, egg and yeast aside from gluten. I saw an allergy doctor who did the ELISA test and was gluten light for 1 1/2 months before finding out about this site and talking to my doctor. I choose enterolab since I had read that the tests wouldn't be accurate (in all probability) since I had been gluten light.

Anyway, welcome, and keep us posted on how your testing goes.

[evie]

Wow, Laura, that's so interesting that mono seeems to have triggered celiac disease for you!!! It has always seemed so weird and suspicious that I would have NO gastrointestinal problems whatsoever before having mono, but terrible symptoms requiring daily medication ever since...but every doctor I've spoken to has just shrugged when I've mentioned that.

So as for my upcoming physical, I guess I should continue eating gluten until then and ask for a "complete celiac panel" while there? And then I guess I could start the gluten-free diet immediately afterwards?

Anyway, thanks for your reply, Laura. I'll definitely check out the book you mentioned. I have such mixed feelings about all of this...I feel such renewed hope that maybe I've finally found a clue to what's been causing me all these problems for some many years, but I also worry about how I'll deal if it does turn out that I'm gluten intolerant. I'm afraid people would think that I've turned into a crazy hypochondriac!

Anyway, thanks again for the support and information!

Alice

Welcome to this board, you have been given some very good advice from some of our forum experts, many of these people know more than Dr's!! One thing Iwould add is that after you have your bood tested and found to be slanted toward Celiac your Dr. will probably want you to have an endoscopy where he would take 6 to 8 biopsies from the upper intestine. I had that a year ago but it showed less problem than a GI considered to be Celiac then had Capsule camera (swallowed) test which showed damage but not enough for a 2nd GI to consider Celiac. So I was asked by 2nd GI to do another endoscopy after 3 mos. of eating gluten, I did not feel I could do that after months of weight loss and major stomach & BIG D problems.

Gi said we will call you 'assumed Celiac', that works and have been gluten free since Feb 06. Some people have trouble with their ins. companies / Celiac word in their records, should not be that way.

Just another idea for you to pursue, many have been very happy/ enterolab testing but I did not know about it at the time. anyway you will find (from a list nini has that their are many restuarants gluten free) and their are many good gluten free cookbooks to help you. Lots of us are doing well even those who were diagnosed in later life, I have good quality of life ( better than some people I know my age), I should be slowing down now anyway, most do.

Just wishing you all the best in your search for better health!! evie

[StrongerToday]

Welcome! Everyone's advice is right on. I'm one of those people who's bloodwork came back "normal" but I had such an improvement on the diet my dr. thought it would be a waste to do a biopsy, and that if I was feeling better eating gluten-free then just eat gluten-free. No hocus-pocus, just smart thinking.

Welcome, and feel better soon!

[happygirl]

Alice,

Celiac is an autoimmune disorder (not an allergy!). One theory behind auto-immune disorders is that they are "triggered" by something in the environment. Things such as a severe bacterial or viral infection, pregnancy, trauma, severe stress, etc. (This applies to all autoimmune disorders, like MS, lupus, etc.). Now, it doesn't explain why some people are born with autoimmune disorders, but is merely a theory. Doctors should not shrug you off with that, but, unfortunately, many doctors are not educated about Celiac. Which is why I recommended that book, so you have a factual reference!

There are many ways to approach it, but yes, (If I were you, knowing what I know now), I would keep eating gluten if you can get in relatively soon (next few weeks) to have the blood work done.

Dr. Fassano (a leading researcher at the U of Maryland, Baltimore) says that you should have tested:

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

I would recommend printing out this list and bringing it with you. Sometimes they do not run all the tests. Demand that they are ALL run...you don't want to go gluten-free then find out he didn't run them all. This list is also in Dr. Green's book.

You have numerous options once you have your blood work done. Let me try to think of them all (and not in rank order...just off the top of my head). This is going to sound like a choose your own adventure book.

1. Wait until results are in...do not go gluten free until they are in.

a. If they are positive, your doctor is going to want to schedule an endoscopy with biopsies to look for damage (this is the gold standard to dx Celiac).

i. They do the biopsy, find damage, give you the Celiac seal, you go gluten free, never having to worry about a diagnosis because you have positive bloodwork and positive biopsy.

ii. They do the biopsy, do not find damage (which can be very, very common!!!), and your doctor tells you either a) you don't have Celiac, that gluten is not your problem, that the blood tests don't matter (which is incorrect). or he says, go ahead and try the gluten free diet, see what happens.

iii. You decide you don't want the endoscopy (which, really, isn't bad), and decide to just live with the positive blood work and see how you do on the diet. (Important note: Remember though, if you go off gluten, and decide later on that you want a biopsy, you will have to consume a lot of gluten for an extended period of time....I, personally could not do that because of how debilitating my symptoms are. Others could do it and be mildly bothered by it. If you do have Celiac and are ingesting gluten, however, you are causing damage.)

b. If blood tests are negative, your doctor will tell you there is no way in H*ll you have Celiac and that gluten is not your problem.

i. You decide to give the gluten free diet a try, regardless of what Doc says.

ii. You decide gluten isn't the problem and explore other reasons for your health problems (which could very well be the case).

iii. Very few doctors will schedule an endoscopy without positive bloodwork. Some will, but usually they are Celiac specialists. This could be an option.

2. You have the bloodwork done and go gluten free from that moment on.

a. You get a call in two weeks saying your blood work was positive and Dr. wants to schedule an endoscopy with biopsies.

i. You say no thanks and keep on with diet.

ii. You decide you want one, but then have to delay the biopsy because you need to be eating large amounts of gluten (Sidebar....my un-informed GI TOLD me to go gluten free before the biposy...for over a month. They didn't find any damage. Go figure. What was the point of having a biopsy then?!!! Obviously, I had no clue about Celiac back then).

b. You get a call in two weeks saying your blood work was negative. However,

i. Already, you are starting to see some changes in your health that are positive and want to keep trying the diet. You may be gluten intolerant and not a Celiac.

ii. You don't want to do the diet anymore and you explore other health options.

iii. You aren't really feeling any better, but you want to give it the diet a shot, still, because the damage can take months to heal, and it takes your body a long time to recover and adjust. Just because you take 100% gluten out for a day doesn't mean your body will spring back over night...it is a long process.

There are other options---One is enterolab. They do stool samples and do not diagnose Celiac, but only if you are reacting to gluten. They can also do gene testing. However, it is not widely accepted by doctors. If you are looking for a standard diagnosis, I would go through the bloodwork/biopsy/response to diet approach first.

Another approach is to not deal with doctors and just go gluten free on your own. Positive: you are in control of your health. Negative: You may never get a dx, may have difficulty with doctors later on, etc. Plus, some people need the dx to help them realize the severity of it, to stick to the diet, etc. Plus, you may have celiac and have no symptoms. Just because you eat a piece of bread and don't react doesn't mean you don't have Celiac/gluten intolerance.

Ok, that just fried my brain and I'm sure overwhelmed you. Let me know if you have any questions at all. I'd be happy to help. Take care and let us know what you decide.

Laura

[AliceW]

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

I would recommend printing out this list and bringing it with you. Sometimes they do not run all the tests. Demand that they are ALL run...you don't want to go gluten-free then find out he didn't run them all. This list is also in Dr. Green's book.

You have numerous options once you have your blood work done. Let me try to think of them all (and not in rank order...just off the top of my head). This is going to sound like a choose your own adventure book.

1. Wait until results are in...do not go gluten free until they are in.

a. If they are positive, your doctor is going to want to schedule an endoscopy with biopsies to look for damage (this is the gold standard to dx Celiac).

i. They do the biopsy, find damage, give you the Celiac seal, you go gluten free, never having to worry about a diagnosis because you have positive bloodwork and positive biopsy.

ii. They do the biopsy, do not find damage (which can be very, very common!!!), and your doctor tells you either a) you don't have Celiac, that gluten is not your problem, that the blood tests don't matter (which is incorrect). or he says, go ahead and try the gluten free diet, see what happens.

iii. You decide you don't want the endoscopy (which, really, isn't bad), and decide to just live with the positive blood work and see how you do on the diet. (Important note: Remember though, if you go off gluten, and decide later on that you want a biopsy, you will have to consume a lot of gluten for an extended period of time....I, personally could not do that because of how debilitating my symptoms are. Others could do it and be mildly bothered by it. If you do have Celiac and are ingesting gluten, however, you are causing damage.)

b. If blood tests are negative, your doctor will tell you there is no way in H*ll you have Celiac and that gluten is not your problem.

i. You decide to give the gluten free diet a try, regardless of what Doc says.

ii. You decide gluten isn't the problem and explore other reasons for your health problems (which could very well be the case).

iii. Very few doctors will schedule an endoscopy without positive bloodwork. Some will, but usually they are Celiac specialists. This could be an option.

2. You have the bloodwork done and go gluten free from that moment on.

a. You get a call in two weeks saying your blood work was positive and Dr. wants to schedule an endoscopy with biopsies.

i. You say no thanks and keep on with diet.

ii. You decide you want one, but then have to delay the biopsy because you need to be eating large amounts of gluten (Sidebar....my un-informed GI TOLD me to go gluten free before the biposy...for over a month. They didn't find any damage. Go figure. What was the point of having a biopsy then?!!! Obviously, I had no clue about Celiac back then).

b. You get a call in two weeks saying your blood work was negative. However,

i. Already, you are starting to see some changes in your health that are positive and want to keep trying the diet. You may be gluten intolerant and not a Celiac.

ii. You don't want to do the diet anymore and you explore other health options.

iii. You aren't really feeling any better, but you want to give it the diet a shot, still, because the damage can take months to heal, and it takes your body a long time to recover and adjust. Just because you take 100% gluten out for a day doesn't mean your body will spring back over night...it is a long process.

There are other options---One is enterolab. They do stool samples and do not diagnose Celiac, but only if you are reacting to gluten. They can also do gene testing. However, it is not widely accepted by doctors. If you are looking for a standard diagnosis, I would go through the bloodwork/biopsy/response to diet approach first.

Another approach is to not deal with doctors and just go gluten free on your own. Positive: you are in control of your health. Negative: You may never get a dx, may have difficulty with doctors later on, etc. Plus, some people need the dx to help them realize the severity of it, to stick to the diet, etc. Plus, you may have celiac and have no symptoms. Just because you eat a piece of bread and don't react doesn't mean you don't have Celiac/gluten intolerance.

Ok, that just fried my brain and I'm sure overwhelmed you. Let me know if you have any questions at all. I'd be happy to help. Take care and let us know what you decide.

Laura

Wow, Laura, this is extremely helpful!!

As it happens, my yearly physical is scheduled for Monday, so I am going to ask for the tests you suggested. (Anyone have any suggestions about how to broach the topic with the doc? Just tell him about my GI woes and tell him I want to rule out gluten intolerance for peace of mind, I guess?). So, I I (hopefully) get the bloodwork done, and then take it from there. I will most likely try a gluten-free diet for a while regardless of the outcome, but I think that if the bloodwork turns up negative I may try enterolab just to be sure.

Can you guys tell me what a positive result on the blood test would mean? Does the bloodwork only indicate celiac disease, or can it also indicate gluten sensitivity? And, would positive bloodwork be a 100% definite indication that I am sensitive to gluten? Also, I was gluten light for about 8 days until about a week ago, when I went back to eating wheat in anticipation of having this bloodwork done. That shouldn't affect the results, right?

And, one last question: does EVERYONE have to be SO careful about cross contamination etc, or is it sufficient to simply avoid eating gluten-containing products at home, order meat, rice, and vegetables in restaurants, and leave it at that if your symptoms aren't too severe?

Sorry I am so clueless, and thanks for everyone's help!!

Alice

[AndreaB]

Alice,

The tests could be skewed depending on how long you were gluten lite. If it was a short time (less than a month) they should be ok. If you do have celiac than even if you don't have a very bad reaction to gluten, you would still be causing damage to your intestines. You won't want to make a habit of eating out alot without concern for cc.

[happygirl]

Hey Alice,

I'm happy my thoughts helped...it certainly is overwhelming.

I would tell your doctor that you are having GI problems and would like him to run the blood panel. He might hem and haw, but TELL him, not ask him (i.e., I want the test run!). Then, say, I want to make sure that these tests are run and show him your sheet.

This blood work only indicates Celiac Disease, not gluten sensitivity.

From what I know (and I might be incorrect-please correct me if I'm wrong, someone!), gluten sensitivity is usually found through other labs (york, enterolab, etc) or an elimination diet.

Positive blood work means you have Celiac Disease. Negative bloodwork does not necessarily mean that you don't have Celiac (there is a higher chance of a false negative than a false positive from what I've read on this board). Part of the blood tests measures the antibodies that your body is producing in its response to gluten.

This is the hardest part about the diet: gluten free means gluten free. Not, gluten lite. It is not merely sufficient to worry about ingredients and not worry about cross contamination, or order 'seemingly' safe things at a restaurant without asking the server/chef/manager. There are two analogies on this board that are used and it helps me a lot.

1. Celiac is like pregnancy. You can't be a little bit Celiac or a little bit pregnant. You either are or not. Now, there is a WIDE variety (over 200) of symptoms associated with Celiac. Some are "silent" Celiacs, meaning they do not have any noticeable symptoms; but, gluten is still damaging their intestines and can lead to problems down the road. Others have just about every symptom in the book and it can be debilitating (joint/muscle pain, weight loss, fatigue, horrible D, neuropathy, etc., etc., etc.)...they also have damage to their intestines. Some react very soon to eating gluten, some take hours, some take a day or two....all Celiacs! (hence, the medical chameleon). This is similar to pregnancy....some women glow, barely gain weight, don't have morning sickness, and are as cute as a button. Others are sick the entire 9 months, gain a lot of weight, and have complications. But, they are all pregnant!

2. Gluten, to a Celiac, is the equivalent of rat poison. It is harmful to our bodies and causes an autoimmune reaction to occur in which our bodies react and our intestines (particularly, the villi in the small intestines) are damaged as a result. There has been research indicating that even tiny amounts of gluten can cause the autoimmune reaction. Just because you do not react to a tiny amount of gluten does not mean that damage is not being done (i.e., the example of silent Celiacs is the best way to explain it).

So, cross contamination is a big worry. Our bodies do not care if we purposely cheated (took a bit of bread) or if it was an accidental glutening (oh, I didn't check the ingredients, but I'm sure its ok). It hates gluten! Would you feel comfortable eating a steak cooked on a grill that had rat poison, was handled by someone wearing gloves that had rat poison all over it, utensils had remnants of another meal on it that had rat poison, etc? Would you feel comfortable eating a salad that orginially had croutons on it (rat poison) and then you just 'picked them off' ... that the salad would be safe? All butters, mayos, cream cheeses, (dippable things in your fridge) need to be safe (i.e., can't be dipped in with a knife, then spread on bread, then the same knife dipped back in the butter.)

Yes, it is being paranoid and you have to be conscientious all the time. Most (if not all!) asked the same questions you are asking now....there is no way you would know this stuff if you weren't dealing with a food allergy/intolerance. However, for those who do, this becomes a normal way of life. Notice I say it BECOMES a normal way of life. Certainly is not in our nature...but, it gets that way.

Hope this helps. Sorry I'm so wordy lately

If you haven't already read some of the info on celiac.com (the parent site to this forum), I highly recommend it. Here are some good ones:

https://www.celiac.com/st_prod.html?p_prodi...-10106599478.65

about tiny amounts of gluten:

https://www.celiac.com/st_prod.html?p_prodi...-53106609878.79

a list of faq's and answers:

https://www.celiac.com/st_main.html?p_catid=2

dx, testing, treatment:

https://www.celiac.com/st_main.html?p_catid=3

associated diseases and disorders:

https://www.celiac.com/st_main.html?p_catid=7

(these can all be found by going to www.celiac.com, scolling down, and seeing a list of links to click on, all about Celiac).

[Tay]

Hi Alice:

I am relatively new to the board, but I want to give you my perspective. I applaud you for self-educating and trying to find the truth about your continued GI problems. My recommendation is to try to seek a diagnosis using the medical system, if possible. This can be difficult, the average time to diagnosis is published as 11 years. However, if you can establish a positive relationship with your doctors, they can help you deal with any additional conditions or vitamin deficiencies that may come up in the future (for example, I had anemia, vitamin B-12 deficiency and osteopenia). If you have positive serology with the celiac panel, the standard is to see a gastroenterologist and get an upper endoscopy with biopsy. They will tell you to keep eating gluten until the biopsy, which can be hard. However, this way, if positive, you will know that you have the disease. This will strengthen your resolve when facing the lifelong diet change and related symptoms / conditions. When I went to my hematologist (my first sign was anemia), I wrote on the history form under additional questions "GI disease, chrones, celiac?". But it took well over one year from that point and an additional doctor (and I actually had to convince her to run the pannel) to get someone to look for celiac. However, I recommend persisting, so that you can get the best possible care, we deserve to have our doctors on our side.

The social aspects of the gluten-free diet are a challenge. I can relate to your anxieties, as I am your age and also like to travel. All I can say is, take one day at a time and don't let that overwhelm or stop you. I still travel and enjoy eating out, it is just takes planning and patience. Most of all, don't let anyone make you feel like a hypochondriac. Some people wont get it, but who cares? Our health is our most valuable asset.

Best of luck!!

Taylor

[happygirl]

Taylor,

Extremely well said!

You are right, the diet and eating out is a challenge...but, again- you are right - all challenges can be overcome so that we can live 'relatively' normal lives.

Welcome to the board (although a bit belated!) ....we are happy to have you here.

Laura

[AliceW]

OK, I had an appointment with my primary care doc, and he is running a Celiac Panel. He also wants me to get an endoscopy (mostly because of my chronic gastritis and acid reflux), but I'm reluctant, even though I know it's silly. I just found the previous two endoscopies I've had to be SO unpleasant...major retching and gagging even though I was very sedated, and I felt like crap from the sedation afterwards because they gave me such a high dose) and neither of them showed anything of note other than "mild antral gastritis." Ugh.

So I guess I'll wait for the results of the blood panel (they are due in this Friday or Monday) and try to decide what to do next in the meantime. I'm leaning toward simply trying the gluten-free diet for a while and seeing if my gastritis/acid reflux/constipation/bloating/gas clear up, and having the endoscopy only if the symptoms are not helped by the diet. I kind of doubt I have full-blown celiac disease (I'd be sicker than I am, wouldn't I??), but I do suspect a gluten intolerance, and the biopsy is only useful to rule in celiac, not to diagnose gluten intolerance, right? I'm considering the endoscopy mostly for the GERD/gastritis, and I'm hoping that maybe the gluten-free diet will clear those up, and thus prevent me from having to have the scope again.

I also can't make up my mind about enterolab. I'm sort of curious about it, and I think having the information might be helpful to me (ie, if my results suggest that I do indeed have a gluten intolerance it might help me stick to the diet, maybe). However, it also seems kind of pointless...if the diet helps, it helps, and if it doesn't, it doesn't...what more do I really need to know than that? Also, if 30% of the population tests positive fro gluten intolerance, I do wonder how meaningful the results really are. Obviously a third of all Americans aren't deathly ill. I just keep coming back to the idea that the response to the diet is the be-all end-all in this case. I dunno.

Anyway, I'm rambling! I'll keep you guys posted on the results of the blood panel. Now I just have to decide when to start the diet (I'm definitely going to...the question is when, and that depends on the endoscopy question.)

Thanks again to everyone for the warm welcome and all the incredibly useful info!

Alice

[happygirl]

Alice,

Well, you knew at least I would respond I was thinking about you yesterday and wondered how your app't went.

I think getting the blood results will help you decide what to do. Just remember, if you ever want an endoscopy later, you'll have to eat a ton of gluten for a long time. So for some, its easier to do it now and get it over with. An extra week or two might give you a definitive answer (on the other hand it might not). Plus, some people have neg bloodwork and positive biopsy. (So many things to consider!!!!!!!)

You said: I kind of doubt I have full-blown celiac disease (I'd be sicker than I am, wouldn't I??), but I do suspect a gluten intolerance, and the biopsy is only useful to rule in celiac, not to diagnose gluten intolerance, right?

I disagree about the full blown Celiac. Researchers estimate that up to 70% of Celiacs are nontypical Celiacs, including silent Celiacs (those with absolutely NO symptoms, but the autoimmune reaction is occurring, and damage is being done). There are a variety of people on here...from silent Celiacs, to lots of symptoms, to in between (think the pregnancy example!) So NO, you wouldn't necessarily be sicker. (that is not to say either way if you have it, though!)

This endoscopy will be specific in that they will take biopsies of your intestine (which should be multiple biopsies, from multiple sites). Normally, unless something jumps out at them, they do NOT biopsy during 'normal' endoscopies. Many times the intestines look normal until the biopsies are examined.

The diagnosis, whether it be bloodwork, endoscopy, enterolab, or one of the other labs (optimum health) that checks for celiac/gluten intolerance is REALLY useful for some people....to help keep them on their diet, to help keep them strict/not lapse/not cheat, to help with family members, the medical field (my most recent GI told me after two years gluten free to eat gluten so we could biopsy...go figure), etc., etc., etc. Others don't need it and remain as strict as those with it. Some don't want the little voice saying, "Is this it" and questioning it all the time. It really is a personal decision; what works best for one doesn't work for another.

You could always be gene tested through enterolab to see if you have any of the celiac disease or gluten intolerance genes. Might help you wrap your head around it.

Please let us know when you get your results...(will you actually PM me? I'm in the middle of moving (this weekend) and don't want to miss it among all the threads)

Take care----

Laura

[AndreaB]

Alice,

Thank you for posting about your doctors visit. I will be waiting for your results.

I would like to second the suggestion to get the gene testing through enterolab so you know what you have.

[tarnalberry]

I'm also very undecided on enterolab, and despite inconclusive blood tests and no biopsy, I haven't used their tests. I did a dietary challenge, got sick when I ate gluten after a month gluten free, and decided that was my answer. That was sufficient for me - and my doctor. So that's that.

Do what you need to do. We're all a bit different, and take different routes.

[AliceW]

Hi everyone!

Thanks for the insights. I'm pondering the whole thing and will let you know what I decide to do next. I'm definitely going to try the diet no matter what, though...the things in question are the endoscopy and shelling out the $$ for enterolab. It's only $350, though, so maybe it's better just to do it.

Maybe I'll at least wait until the blood work comes back Friday or Monday before deciding anything, or maybe start by going gluten light immediately and take it from there. I'm really eager to start the diet, though...I was gluten light for about a week two weeks ago and I swear I felt a better already, but it was subtle, so who knows.

The one thing I can see about endoscopy/enterolab is that a diagnosis would help one make ones case to friends and family about avoiding gluten, and also an official, medically sanctioned diagnosis would help one convince doctors to get tests for things like vitamin deficiencies, osteoporosis, etc. Hmmmmm.

Alice

[AliceW]

Hi everyone,

I think I've decided to proceed as follows:

I've already gotten the blood tests (I'm waiting for results now), and I'm going to get the enterolab tests. I'll then get a biopsy only if my blood test results are positive AND the gene test is positive.

And, I'm going to try the gluten-free diet (unless my enterolab results are 100% normal), but not until it's clear whether or not I'll need a biopsy.

Do you guys think that sounds reasonable? Also, another question: if I don't have the celiac genes, I can't have actual celiac disease, but I could still be gluten sensitive, right?

Also, I'm thinking I might start transitioning slowly into being gluten light now, since I'd be getting the biopsy (if I need one) in about a month. Would that be likely to mess up the results?

Thanks for everyone's help!!!

Alice

[Matilda]

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