Do I Really Have Celiac?

[alliecr]

The blood test my doctor did was inconclusive. He put me on a gluten-free diet for a month, but it was too hard--i'm in college--so, I cut back on gluten and only had it once or twice a day and did FINE. I had a little trouble going to the bathroom, but in about three days or so I would. I went back and he says that I DO HAVE CELIAC DISEASE and IBS and GERD. How does he know this? How can I make him do the biopsy for the Celiac disease? I am a huge bread lover and gluten-free bread is gross!

Please help. My life is upside and I want viable proof that I have this.

[quietmorning01]

The blood test my doctor did was inconclusive. He put me on a gluten-free diet for a month, but it was too hard--i'm in college--so, I cut back on gluten and only had it once or twice a day and did FINE. I had a little trouble going to the bathroom, but in about three days or so I would. I went back and he says that I DO HAVE CELIAC DISEASE and IBS and GERD. How does he know this? How can I make him do the biopsy for the Celiac disease? I am a huge bread lover and gluten-free bread is gross!

Please help. My life is upside and I want viable proof that I have this.

It's odd that the blood test would be inconclusive, yet he would insist. Perhaps ask him to do an upper endoscopy? Are you seeing a GI or a GP? I've been misdiagnosed so many times that I insist going in - before ANYTHING is done that ALL rule out testing will be completed before a diagnosis, or I'm not buying it. My GI doc, now, said he completely understood, and despite a positive endoscopy biopsy, he's running a few more tests. I really appreciate that he's willing to do this.

I did start the diet, and wow, for me, it's a HUGE IMMEDIATE difference.

Constipation can be a factor in my symptoms - and it usually clears up in three days as well. . .so don't rule that completely out as being a possible symptom.

If you are not seeing a GI, you may want to ask for a referral to see one. There are other things the problem could be, and not finding out with some sort of assurance at least to rule those other things out may be doing yourself a disservice, especially if the treatment ends up being harmful. Are you malnurished? That's another question you might want to pose to him.

Being your own advacate when you go into the doctor may save your life one day - in the mean time, continue to do research - and really look at it with as little bias as you possibly can. Being diagnosed with something serious always has this denial factor that kicks in for the first while. If it IS this, then the risk of not treating it is way high - may not be worth the risk.

Hope you get to the bottom of everthing soon and you feel way better!

[alliecr]

It's odd that the blood test would be inconclusive, yet he would insist. Perhaps ask him to do an upper endoscopy? Are you seeing a GI or a GP? I've been misdiagnosed so many times that I insist going in - before ANYTHING is done that ALL rule out testing will be completed before a diagnosis, or I'm not buying it. My GI doc, now, said he completely understood, and despite a positive endoscopy biopsy, he's running a few more tests. I really appreciate that he's willing to do this.

I did start the diet, and wow, for me, it's a HUGE IMMEDIATE difference.

Constipation can be a factor in my symptoms - and it usually clears up in three days as well. . .so don't rule that completely out as being a possible symptom.

If you are not seeing a GI, you may want to ask for a referral to see one. There are other things the problem could be, and not finding out with some sort of assurance at least to rule those other things out may be doing yourself a disservice, especially if the treatment ends up being harmful. Are you malnurished? That's another question you might want to pose to him.

Being your own advacate when you go into the doctor may save your life one day - in the mean time, continue to do research - and really look at it with as little bias as you possibly can. Being diagnosed with something serious always has this denial factor that kicks in for the first while. If it IS this, then the risk of not treating it is way high - may not be worth the risk.

Hope you get to the bottom of everthing soon and you feel way better!

On Feb. 9 my GI--I have a GI doctor, sorry I wasn't specific --did and upper and lower scope to find out why i had been having trouble with my bowel movements since Christmas when i had a 5cm cyst on my right ovary. He then suggested the blood test for celiac. I want him to give me 100% evidence, though. He said that if he does a biopsy that the piece he takes could be a Celiac piece or not. He doesn't want to do this form of testing I guess. As for malnourishment--That is a positive. I am a huge bread person and am lost. I had two snickers bars and a coke for lunch--that is totally unhealthy. I bought some cheese dip that I thought was gluten-free but now I see that it says modified food starch. I hate my life right now. I am about to be a junior in may in college. I need to focus on that, and I cant.

[Lisa]

Don't worry about the diet, we can walk you though it.

Could you post your blood work information, and someone can help interpret it. Accuracy in testing is not where we would like, but we have to deal with what we have. Your doctor is correct, biopsies can be hit and miss regarding giving your a conclusive diagnoses. And blood test rarely show false positives. If you test in the possitive range, it's likely that you do have Celiac.

1. Positive serology blood test

2. Positive endoscopy and biopsy

3. Positive dietary response

Combine all three and you have as close to a diagnosis as you can get.

The gluten free diet has a steep learning curve in the beginnig, but it's very doable. I would also suggest that you order the Triumph Dining Grocery Guide, here on the Gluten Free Mall or www.triumphdining.com. It's the best thing you can do for yourself in the first year.

Here is some information to get you started: (thanks to happygirl)

Open Original Shared Link

[raisin]

Doctors are usually very hesitant to label someone celiac, because it leads to a restrictive diet. If he is insisting.. He probably has strong evidence. Or he's a loon. If you have an inconclusive test, they may ask you to go gluten-free as a secondary test, and it would be very important that you actually do so. If you haven't been told yet, you can (and many do) die from complications (like cancer or malnutrition) if you have celiac and continue to eat gluten.

The easiest way to be sure your diet is gluten free (If you're even willing to try, and I'm assuming you are, because if not why post right?) is to stick with "from scratch" foods and shopping guides.

* This includes fruits, vegetables, eggs, and fresh (not deli or most prepackaged) meats.

* When your first starting the diet, cross-contamination isn't usually as big of an issue. Assuming your perfectly average, just selecting any given food labeled "gluten free" should be fine. If you want to be on the safe side, only buy foods that don't say "produced in a facility that also processes wheat/gluten."

* This is going to sound like blasphemy - reading ingredients isn't necessarily something you have to do. If it's confusing or difficult, just buy a gluten-free Shopping Guide book, or google/search here look up lists of safe products in whatever genre you need.

* If there is a product you are unsure about, almost all packaged items have a 1800 number. It may feel awkward at first, but calling companies while shopping is the most effective way to find out if it's gluten-free.

* PS : Not all gluten-free food is for health nuts. They make candy bars, sugary cereals, cheeses, hotdogs, etc. If you have large grocery or health stores locally, they should sell a number of more tasty foods like those.

Another thing to keep in mind : Almost everyone here started out as a serious bread lover. Actually, that can be a sign of celiac disease or bread allergy. Part of allergies is that, usually, you will either hate the food or be, quite literally, addicted to it. Bread, as an unhealthy food, is known to be extremely addictive to almost everyone. The first 2-3 months you will still crave it, afterward, it may begin smelling awful to you. Some gluten-free breads are disgusting, like Ener-G. Others are very good, like Kinnikinnick. Glutino makes great crackers, and Enjoy Life makes amazing cookies. (personally, I gave up replacing all bread-like products half a year ago as I no longer crave them, and I used to eat subs toast and sandwiches every day) Also, as a college student, you must know by now that taste buds change over the period of about a month, and so after that first month, everything in your "new and healthier" diet will taste much better to you.

Have you also seen an allergist, also? Many people get IBS and other digestive problems from allergies and in tolerances of all sorts. Many with celiac also have other food sensitivities. - I'm 19, probably even younger than you, and I was actually relieved to be labeled celiac. It got rid of my health problems so I could focus on my studies.

[wendstress]

I just want to mention, too, that I was (am?) a bread addict and pasta lover. Never EVER thought I'd be able to live without them. But my tastes have changed (been on the gluten free diet for about 2 months) and I am slowly feeling better.

I can imagine that going gluten free in college is a tough thing.

My advice is to find a few easy things you can focus on eating for a few weeks to see if it helps you feel better. I personally felt some immediate relief from going gluten free, although it was unfortunately short lived. I've slowly been feeling better since.

Some easy gluten-free things to eat:

Rice Chex/Cocoa Pebbles

Rice

Plain rice cakes (I get Quaker's Lightly salted, topped with Peanut butter, or cream cheese)

Corn Chips and salsa

I have a list of about 100 things a Celiac can eat right away. Let me know if you are interested and I can email it to you.

Here is the unfortunate part (I'm trying to be upfront with you):

1) If you truly do have Celiac Disease, continuing to eat gluten will do serious damage to your immune system/digestive system. Cancer is at the top of that list. It won't happen overnight, but it will happen.

2) When you are successfully Gluten Free for a few weeks, any accidental gluten-ing will likely make you feel much more sick than when you were eating gluten every day. Crumbs can literally make me sick now. I used to eat bread like it was going out of style, and it didn't rock my body the way a simple crumb can now.

Lastly, have you had a colonoscopy? Microcolitis (found out I have this too) can have a lot of the same symptoms as celiac disease. Treatment is roughly the same, too....gluten free diet. However, people with microcolitis can be sensitive to many other things, too (soy, milk, etc). Not sure where I fall in this range, yet.

Good luck! Having Celiac isn't the end of the world. It is an inconvenience. It is an annoyance. But it isn't terminal (unless you ignore it) and you don't have to take medicine to fix it.

[alliecr]

Doctors are usually very hesitant to label someone celiac, because it leads to a restrictive diet. If he is insisting.. He probably has strong evidence. Or he's a loon. If you have an inconclusive test, they may ask you to go gluten-free as a secondary test, and it would be very important that you actually do so. If you haven't been told yet, you can (and many do) die from complications (like cancer or malnutrition) if you have celiac and continue to eat gluten.

The easiest way to be sure your diet is gluten free (If you're even willing to try, and I'm assuming you are, because if not why post right?) is to stick with "from scratch" foods and shopping guides.

* This includes fruits, vegetables, eggs, and fresh (not deli or most prepackaged) meats.

* When your first starting the diet, cross-contamination isn't usually as big of an issue. Assuming your perfectly average, just selecting any given food labeled "gluten free" should be fine. If you want to be on the safe side, only buy foods that don't say "produced in a facility that also processes wheat/gluten."

* This is going to sound like blasphemy - reading ingredients isn't necessarily something you have to do. If it's confusing or difficult, just buy a gluten-free Shopping Guide book, or google/search here look up lists of safe products in whatever genre you need.

* If there is a product you are unsure about, almost all packaged items have a 1800 number. It may feel awkward at first, but calling companies while shopping is the most effective way to find out if it's gluten-free.

* PS : Not all gluten-free food is for health nuts. They make candy bars, sugary cereals, cheeses, hotdogs, etc. If you have large grocery or health stores locally, they should sell a number of more tasty foods like those.

Another thing to keep in mind : Almost everyone here started out as a serious bread lover. Actually, that can be a sign of celiac disease or bread allergy. Part of allergies is that, usually, you will either hate the food or be, quite literally, addicted to it. Bread, as an unhealthy food, is known to be extremely addictive to almost everyone. The first 2-3 months you will still crave it, afterward, it may begin smelling awful to you. Some gluten-free breads are disgusting, like Ener-G. Others are very good, like Kinnikinnick. Glutino makes great crackers, and Enjoy Life makes amazing cookies. (personally, I gave up replacing all bread-like products half a year ago as I no longer crave them, and I used to eat subs toast and sandwiches every day) Also, as a college student, you must know by now that taste buds change over the period of about a month, and so after that first month, everything in your "new and healthier" diet will taste much better to you.

Have you also seen an allergist, also? Many people get IBS and other digestive problems from allergies and in tolerances of all sorts. Many with celiac also have other food sensitivities. - I'm 19, probably even younger than you, and I was actually relieved to be labeled celiac. It got rid of my health problems so I could focus on my studies.

I am 20. In a few minutes I shall be posting the results from my celiac test like someone asked. You seem very knowledgeable about Celiac. Today is day 4 of gluten-free and I cheated and had a biscuit. One biscuit and I felt like I ate 10 loaves of bread! Will not do that again.

[alliecr]

I just want to mention, too, that I was (am?) a bread addict and pasta lover. Never EVER thought I'd be able to live without them. But my tastes have changed (been on the gluten free diet for about 2 months) and I am slowly feeling better.

I can imagine that going gluten free in college is a tough thing.

My advice is to find a few easy things you can focus on eating for a few weeks to see if it helps you feel better. I personally felt some immediate relief from going gluten free, although it was unfortunately short lived. I've slowly been feeling better since.

Some easy gluten-free things to eat:

Rice Chex/Cocoa Pebbles

Rice

Plain rice cakes (I get Quaker's Lightly salted, topped with Peanut butter, or cream cheese)

Corn Chips and salsa

I have a list of about 100 things a Celiac can eat right away. Let me know if you are interested and I can email it to you.

Here is the unfortunate part (I'm trying to be upfront with you):

1) If you truly do have Celiac Disease, continuing to eat gluten will do serious damage to your immune system/digestive system. Cancer is at the top of that list. It won't happen overnight, but it will happen.

2) When you are successfully Gluten Free for a few weeks, any accidental gluten-ing will likely make you feel much more sick than when you were eating gluten every day. Crumbs can literally make me sick now. I used to eat bread like it was going out of style, and it didn't rock my body the way a simple crumb can now.

Lastly, have you had a colonoscopy? Microcolitis (found out I have this too) can have a lot of the same symptoms as celiac disease. Treatment is roughly the same, too....gluten free diet. However, people with microcolitis can be sensitive to many other things, too (soy, milk, etc). Not sure where I fall in this range, yet.

Good luck! Having Celiac isn't the end of the world. It is an inconvenience. It is an annoyance. But it isn't terminal (unless you ignore it) and you don't have to take medicine to fix it.

I had a scope on Feb. 9.

[alliecr]

My Celiac Results:

http://i252.photobucket.com/albums/hh17/alliecr/results.webp

http://i252.photobucket.com/albums/hh17/alliecr/part1.webp

http://i252.photobucket.com/albums/hh17/alliecr/part2.webp

[curiousgeorge]

Please remove the first one, it has your name on it.