I Know This Has Been Run Into The Ground, But...

[Arcanine]

I'm sorry to ask again!

I have taken a general gluten intolerance test (bloodwork) about a year ago that measured from 1 - 16 (1 being no sensitivity whatsoever, 16 being extreme sensitivity) and measured a '15'.

I was offered by my doctor to do a complete blood panel - however, I am in another country and will be for quite a long time before I can perform the official, wide-spread test for Celiac.

A friend has offered to purchase the 'Biocard' at-home test for me to attempt, as it is highly accessible in many of the stores here. However, I understand that with any test, I need to be eating gluten for a proper result.

I know that Entero Labs offers a test that does NOT require the consumption of gluten for an accurate test. However, I am but a college student that can hardly afford my little loaves of gluten-free bread (goodness knows I wish I could jump on the cheap Ramen diet like every other starving student - my food costs more than my tuition, if I ate properly).

Here is my plight: The last few times I ate gluten, I had reactions so severe I was sent to the hospital on several occasions. I'm talking restricted breathing, extreme diarrhea, vomiting, fluttering pulse, and uncontrollable shivering and quaking (as if my body went into shock). This was consistent with every encounter, even with as little as half a slice of bread.

Out of the astronomical fear that has developed from the memory of these unfortunate events, I have been strictly gluten-free for 7 months. I won't even allow my S.O. to place his bread next to my gluten-free crackers.

I am quite literally terrified to begin the 'gluten challenge' to properly assess a gluten intolerance, but I think it is important to know for sure if I have Celiac's, as friends and family are chiding my terrific fear of all things gluten as a phantasm of my imagination. I must admit that I am apprehensive to attempt this challenge being in a foreign country (though I am only about 4 miles from the hospital if a complication were to arrive).

I do feel a bit better after reading this article of the possibility of not torturing myself for months. However, I am extremely leery due to the exceptionally violent reactions I encountered in the past.

Has anyone been in my shoes to this caliber?

[Jestgar]

Here is my plight: The last few times I ate gluten, I had reactions so severe I was sent to the hospital on several occasions. I'm talking restricted breathing, extreme diarrhea, vomiting, fluttering pulse, and uncontrollable shivering and quaking (as if my body went into shock). This was consistent with every encounter, even with as little as half a slice of bread.

Even with this your friends/family "need" a stranger's opinion that gluten makes you sick? Why don't you just tell these people to take a flying leap, and you see no reason to make yourself ill because they seem to feel they have the right to comment on what you eat.

[MitziG]

I agree. It is no ones business but yours what you eat. Why should you make yourself sick for MONTHS so that you can get a test that may or MAY NOT say you have celiac? You may be gluten intolerant, and there are no reliable tests for that.

Your friends and family have no say. I understand wanting validation, but sometimes you need to simply say "I am an adult, and this is my decision."

[GottaSki]

I see no reason to challenge unless the individual doing the challenge is the person that is not convinced that they need to be gluten-free. You already know you need to live gluten-free, there is no reason to make yourself sick to please others.

Stick with what you know to be true. Remind others that you are not asking them to give up gluten, just respect the fact that it causes your body harm. I don't think they'd want to eat something that sends them to the hospital - why should you?

Hang in there

[GFinDC]

The article link is interesting, but you can't count on being diagnosed in 2 weeks time. The research isn't the practice at this point.

I agree, if you are that sick when you eat gluten a challenge would be a very bad idea. And what would be the point? Since you already know you get violently ill when eating gluten, a diagnosis does nothing to change that. You still need to stay entirely gluten-free for the rest of your life. There isno treatment for celiac disease except the gluten-free diet.

Eating gluten-free should not cost a lot more than eating regular food. In fact it can cost less. You don't have to eat gluten-free breads and baked goods. You don't need to buy gluten-free labeled anything. Instead buy whole foods and cook them yourself at home. Take your lunch with you in a cooler. Eat fruits and nuts when out . Chicken, beef, etc and veggies when at home. Try some corn tortillas for roll ups. Avoid processed foods. Your foods are more likely to be healthy for you if they have 3 ingredients or less. Foods like this cost no more for us than they cost for other people. And the are better for you because the have fewer additives and preservatives etc. And less chance of gluten CC too. But you can always wash your food before you eat them too.

It used to be standard practice for people to take their lunch with them to work. There is no reason you can't do the same now if it is convenient for you.

It almost sounds like you have a wheat allergy in addition to a food intolerance. Food allergy can be more immediately dangerous and could lead to anaphylaxis type reactions.

[jerseyangel]

I agree that you could have an allergy in addition to an intolerance/possible Celiac given your symptoms.

In light of your extreme reactions, I would remain gluten free. As for "other people", well I always find it sad and perplexing that so many of us need "proof" of a diagnosis when no one would think of asking this of an individual with any other disease/restriction.

Best of luck to you:)

[eatmeat4good]

The proof is in how sick you get.

"To thine own self be true."

[cahill]

what they said

Validation is a double edged sword and rarely ( if ever ) is it worth the cost.

You do not need your doctor,family,friends permission ,you do not need ANYONE'S permission to go and stay gluten free.

In our world that is like asking permission to stay alive.No one has the right to take that from you.

[Arcanine]

First and foremost, I offer my extreme apologies to get back to this thread so late, especially since all of you were so kind as to reply in such a prompt manner.

Secondly, thank you all for your opinions. I have been contemplating the issue quite heavily (especially the posters that have pointed out that it may be a wheat allergy and that reintroducing wheat may be a dangerous affair), and I have come to the conclusion that I am just too worried about using the 'traditional' method to test for gluten intolerance. I have decided that, when I can, I will just pay for Entero Lab's tests, since I am not forced to consume gluten for a proper result.

Again, I thank you all so dearly for your words, which were both well-meaning and sage. I hope to see you each often in these forums in the future!

[GFinDC]

Good to see you back. We are glad to help when we can. Let us know how the Enterolabs testing works out if you do it. Another method is an elimination diet. Elimination diets works well when you have obvious reactions to a food.

[Arcanine]

Good to see you back. We are glad to help when we can. Let us know how the Enterolabs testing works out if you do it. Another method is an elimination diet. Elimination diets works well when you have obvious reactions to a food.

Thank you, GFinDC!

That's a great idea - I was considering a mono-diet to see what foods are all right, and which cause problems. I have colitis, so I thought perhaps it was just my intestines being cooperative again, as they don't seem to be happy with any food. However, my instances with wheat were so pronounced after immediate consumption that it frightened me away from gluten altogether. Perhaps I am just overreacting and should try again?

[ncdave]

I also have the same bad reaction to gluten as you. I don"t give advice on this board because if i can"t get myself well how can i give advice to others on how to get well. Now when it comes to getting sick, i"m pretty good at that. My advice is to try some cheap prepackaged food thats labled gluten-free in a very small amount. Some people are far more senstive to gluten than others. Eat a very small amount an see what happens. I have not found anything marked gluten-free that i can tolerate. If you try bread use a piece no larger than a small coin.

[GFinDC]

Thank you, GFinDC!

That's a great idea - I was considering a mono-diet to see what foods are all right, and which cause problems. I have colitis, so I thought perhaps it was just my intestines being cooperative again, as they don't seem to be happy with any food. However, my instances with wheat were so pronounced after immediate consumption that it frightened me away from gluten altogether. Perhaps I am just overreacting and should try again?

It doesn't sound like you are overreacting to me. We shouldn't ignore our bodies attempts to tell us something is wrong, if we want to get better. I suggest you wait 6 months before trialing gluten if that's is what you want to do. And then just try a little like NCDave suggested. IMHO there is no need to be in a hurry to get sick again.

For an elimination diet you can start the first couple weeks with a limited number of foods, say 5. Just eat those 5 foods only and see if you feel better. If not then consider removing one of those 5 foods ad replacing it with another. Of course we are talking about whole foods here, not processed foods. Once you have a safe group of 5 foods then you can start adding one new food at a time every 3 to 5 days. It can be a slow process but really helps if you don't know what foods are causing a problem,. Especially if there are multiple foods that are causing a problem.