Worth Getting Diagnosed?

[GFMochi]

Hi everyone,

I am new to this forum, let me quickly introduce myself, I am 22, and suffered from migraines and severe stomach aches daily, for two years. I self diagnosed myself as allergic to gluten and within days, my symptoms disappeared. I have now been gluten free for a year and a half and I am wondering if it is worth eating gluten again to get tests run to get a definitive diagnosis?

My main question, is, is it worth me going and getting the tests done?

Thanks!

[txplowgirl]

The only question I have for you is, Do you need a piece of paper that might tell you that you have Celiac? The only treatment there is is what you are doing. Now, you might want to do a biopsy to see if you have any damage but you have been gluten free for over a year. Your intestines may have healed by now and not show any damage at all. You might want to have blood tests run to see if you're deficient on vitamins and minerals, have your thyroid checked. Things of that nature.

By the way, you need to go back to eating gluten for tests. The recomendation is 2 to 3 slices of bread or equivelant for 2 to 3 months before you might show positive. The tests are notorious for giving false negatives though.

I was where you are. Went gluten free to feel better and a year later tried to do a gluten challenge. Bad, bad sick for 2 weeks, couldn't take it. Had to stop, i'll never know for sure but my body tells me I am. That's good enough for me.

I wish you well

[eatmeat4good]

Hi everyone,

I am new to this forum, let me quickly introduce myself, I am 22, and suffered from migraines and severe stomach aches daily, for two years. I self diagnosed myself as allergic to gluten and within days, my symptoms disappeared. I have now been gluten free for a year and a half and I am wondering if it is worth eating gluten again to get tests run to get a definitive diagnosis?

My main question, is, is it worth me going and getting the tests done?

Thanks!

You are a very, very, smart girl to have figured this out so early in your life and on your own! I would treasure the fact that you know what makes you ill. I figured mine out the hard way and much later in life. But when I thought about getting tested, my Dr. said, "Why would I ask you to make yourself sick so that I can test you and then tell you to stop eating gluten?" You already have your answer. But if you fear you may not stay gluten free...without the testing...you could get it done. To thine own self be true. I am happy whenever I read a post from a young person who already knows gluten's harm. I wish I had learned so young. You saved yourself from years of thoses migraines girl! Hang in there...and best of luck to you!

[AZGirl]

Hi everyone,

I am new to this forum, let me quickly introduce myself, I am 22, and suffered from migraines and severe stomach aches daily, for two years. I self diagnosed myself as allergic to gluten and within days, my symptoms disappeared. I have now been gluten free for a year and a half and I am wondering if it is worth eating gluten again to get tests run to get a definitive diagnosis?

My main question, is, is it worth me going and getting the tests done?

Thanks!

I am also new to this site and while I have nothing of worth to offer just wanted to say that I am in the same boat. I had blood tests that were moderately elevated, but I had already been gluten free for over a month. I also have vitamin and mineral deficiencies. I am supposed to schedule an appointment with a gastro for the scope but have been dragging my feet because I have been gluten free for 4 months now and am starting to feel much better. No more stomach/bowel issues, muscle cramps and pains, memory fog is lifting etc....

I have read that a gluten challenge is required if you are gluten free, so the scope test has a better chance at positive. I want to cry (literally) when I think of putting myself through the agony of bread again. I'm thinking if I have my vitamin and mineral levels checked again in a month or so it'll help to determine if I am healing or not. If those levels are still not correcting then I will have the scope, but if they are I am tempted to skip the scope and live happily ever after-- gluten free.

I guess I do have something to offer: You need to know if you are gaining nutrients from the food you eat, so blood tests are a must in my opinion. Best of luck to you.

[Skylark]

If you are willing to stick to a celiac diet and are feeling healthy, there is no reason to get any further testing. Celiac tests are inaccurate and even if you poison yourself for a few months, you may get false negatives. I've had three doctors in a row now tell me to stay on the diet and not bother with testing because it's so hard to get a positive result even if you're celiac. The diagnosis is only necessary if you question the diet. For me, gluten is so obviously a problem that I am perfectly happy to eat a strictly gluten-free diet without any label.

Tell your doctors you are on the gluten-free diet and ask for monitoring of vitamin D, B12, bone health, iron, and thyroid, especially if you're symptomatic of a deficiency. Doctors test everyone for D and watch for bone health anyway nowadays. You do not need a celiac diagnosis to be tested if you're symptomatic of B vitamin deficiency or thyroid disease. Those are all pretty normal things to watch anyway and a good doctor will run the tests for you to be sure you are absorbing your food.

(Assuming you're in the US. If anything the diagnosis is a liability for insurance reasons here. In much of Europe you can get a food allowance and the diagnosis is worthwhile.)

[FooGirlsMom]

One more 2c worth

The main school of thought is -- if you don't think you can stay gluten-free then it might be worth getting tested -- well...how about you stay gluten free and if you find you can't -- then do the gluten challenge -- as you'll already be eating gluten anyway lol

I wish wish wish I'd discovered what my issue was in my early 20's. (That's when the worst of these symptoms started) and I accidentally landed on a gluten free diet (Body Ecology) to treat Candida. I got better but once the Candida was gone, I went back to gluten. Started feeling not so great again but the problem wasn't yeast. I thought since I have hypoglycemics in my family and was starting to show signs of insulin resistance, tried Atkins (another gluten-free diet I accidentally landed upon). I controlled symptoms for the next 10+ years by living on the Induction phase of Atkins for a month at time, sometimes totally 6 months out of the year. But once my mom got sick and I couldn't physically tolerate the diet, I really started to get sick. It took about a year, with the stress, and my body was so broken down I thought I was dying.

Those of us who don't figure it out until later in life have all sorts of auto-immune issues to contend with that you won't if you start now. You have no idea how this issue will rob you of the best years of your life. So my challenge to you is: How badly do you want to want to live a full life? If I could turn back the clock, I'd never have cared who validated my disease.

If you find you don't have the conviction to stay on the diet (I mean it's easier after you have suffered horrifically from gluten for years) then do the gluten challenge at that point. But if you can do it yourself, I question the wisdom of poisoning your body for a diagnosis.

Good luck

FooGirlsMom

[AZGirl]

Thank you all for the information. I think I have made my decision, no endoscope unless it is absolutely needed...for me.

I just want to take a minute and say how sorry I am for all of those who have suffered for so long. I have only been sick since March of last year and can't bear the thought of purposely eating gluten again. I am in awe of those who have struggled all their lives with the mental and physical pain this condition invites. So many strong persevering souls who are winning their lives back. I'd also like to thank you for fighting to be heard...I know in some way you have made it possible for many of us to be diagnosed quickly and therefore not have to endure the agony so many of you have.

I hope you can find some peace in knowing that you're fight was not in vain and that you are appreciated and respected for all you have endured.

With most sincere thanks.

[GFMochi]

Thanks everyone for the help and encouragement!!

I keep getting heat that I am just putting myself and my loved ones, through the challenge of a gluten free diet, without a correct diagnosis. I started to doubt myself. I do not want to eat bread for 2 to 3 months! I have to work and think clearly. That will not work.

Thanks again for everyone's help!

My next question, then, is, what is the difference between having celiac disease, and gluten intolerant? I thought that if you are gluten intolerant, then your tests did not come up positive, but how would you consider someone if they do not become tested?

[cO-ol]

Thanks everyone for the help and encouragement!!

I keep getting heat that I am just putting myself and my loved ones, through the challenge of a gluten free diet, without a correct diagnosis. I started to doubt myself. I do not want to eat bread for 2 to 3 months! I have to work and think clearly. That will not work.

Thanks again for everyone's help!

My next question, then, is, what is the difference between having celiac disease, and gluten intolerant? I thought that if you are gluten intolerant, then your tests did not come up positive, but how would you consider someone if they do not become tested?

Can you lie and say you were diagnosed? I do that sometimes.

Generally, when people make a distinction between gluten intolerant and Celiac, the difference is the damage done. Gluten intolerance shows no signs of intestinal damage, whereas Celiac does. Some say that gluten intolerance IS Celiac disease, just a "lite" version or maybe the beginning stages and the damage just hasn't shown up yet. Or maybe different people have different sensitivities to gluten, and the gluten intolerant folks are not *quite* as sensitive as a "typical" Celiac (if there ever was such a thing!).

I didn't get tested, but I say I'm Celiac. I had vitamin deficiencies and I also have food intolerance issues besides gluten though, which give away that some damage has been done. I'm inclined to think that gluten intolerance vs. Celiac is just a matter of degree, not kind. There are differing opinions, but I don't know anyone who's offended by someone who reacts badly to gluten calling themselves Celiac for that reason alone.

[txplowgirl]

Thanks everyone for the help and encouragement!!

I keep getting heat that I am just putting myself and my loved ones, through the challenge of a gluten free diet, without a correct diagnosis. I started to doubt myself. I do not want to eat bread for 2 to 3 months! I have to work and think clearly. That will not work.

Thanks again for everyone's help!

My next question, then, is, what is the difference between having celiac disease, and gluten intolerant? I thought that if you are gluten intolerant, then your tests did not come up positive, but how would you consider someone if they do not become tested?

I agree with Cool, I also believe gluten intolerant is just the begining stages of Celiac. I tell all my relatives and friends that I am Celiac. No one has aked to see any paperwork yet. lol

[GFMochi]

Thanks! I am going to just continue to say Celiac.