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Also Feeling Overwhelmed.

LuLuBee

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LuLuBee Newbie
LuLuBee
Posted

Hi!

I am soooo tired of feeling sick and tired! Through trial end error over the past 9+months I have figured out that I am at least Gluten Intolerant/Sensitive. 6 Day's out of the week, I seem to experience some symptom related to GS. Sever abdominal pain and swelling, flatulence, irritability just to name a few. After reading another recent post about being new to Gluten Intolerance, I am convinced that testing is the way to go. I pay my Naturopathic Dr. out of pocket for blood work, visits and meds. This is because I lack insurance. The Celiac test will 1) require me to pay $250 and 2) remain on Gluten for at least 2 weeks. Here's my question:

How much gluten do I need to have in my system? More than the frightfully high cost of the test, I'm seriously considering dealing with the pain its going to cause to make sure the test is done as thoroughly as possible. As it is, I keep trying desperately to keep it OUT of my system, but I manage to slip up sometimes. I recently had one week of feeling really really good! No flatulence, no bloating etc. I managed to ruin it all with 3 small bites of rice with GRAVY. I didn't even think! Within 30 minutes I was in pain. ( for me I describe the pain as akin to swallowing liquid razor blades) And the after affects are not much nicer.

Would I have to eat a little bit of something gluten-y everyday? or just once or twice per week before the test?

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mushroom Proficient
mushroom
Posted

Hi, and welcome, LuLuBee. I am afraid you are not going to like my answer to your question :( A gluten challenge for testing requires you to eat the equivalent of 3-4 slices of bread every day for a minimum of six weeks for the testing to be valid. Medical professions give varying false information about what it takes, but the above figure is the generally accepted one.

Cara in Boston Enthusiast
Cara in Boston
Posted

My doctor said 4-6 MONTHS of eating a "regular" amount of gluten daily before going for testing - this was after a short time being gluten free (2 weeks). I'm afraid you would be wasting your money if you tried to get tested after just a couple of weeks. (and perhaps your doctor is not as knowledgeable as you would like to think.) If you already know you are gluten sensitive, why do you feel you need the test? What would you do differently?

Cara

kareng Grand Master
kareng
Posted

The Celiac Center at the Univ of Chicago does free blood testing in October. They sent me a postcard about it and it said you must have 3 months on a "regular" gluten diet.

ravenwoodglass Mentor
ravenwoodglass
Posted

The Celiac Center at the Univ of Chicago does free blood testing in October. They sent me a postcard about it and it said you must have 3 months on a "regular" gluten diet.

3 months was my understanding also. However if you body reacts very badly to the challenge let your doctor know. Some will have you stop the challenge.

Skylark Collaborator
Skylark
Posted

If you want to be sure of a relapse since you're paying out of pocket, you need three months of gluten challenge. As everyone else has said, that means a "normal" amount of gluten like 3-4 slices of bread a day.

I never challenged for testing. I decided it wasn't worth poisoning myself to learn what I already knew, that I need a strict gluten-free diet.

tom Contributor
tom
Posted

Stanford says a half slice of bread/day for a month.

Isn't the only thing to agree on is that there isn't consensus?

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Skylark Collaborator
Skylark
Posted

Stanford says a half slice of bread/day for a month.

Isn't the only thing to agree on is that there isn't consensus?

It's more likely we'd agree that many doctors/clinics have not read the scientific literature. Here is some gluten challenge stuff I found from a thread a while back.

LuLuBee Newbie
LuLuBee
Posted
  • Author

All that information is great guy's. Thank You. :)

Its funny, because I'd originally decided that the pain was to great. I think I was just grasping at straws. I'm still trying to understand it all. Cara, I don't honestly know what KNOWing would change. I don't know what I'd do differently. That was a great question. My ND actually suggested I NOT get the test because it was too painful. But if I WANTED to, I could. Knowing that it is hereditary, I may have my son and daughter tested instead. They are not having any painful symptoms yet, and they are definitely not gluten free....yet. :-).

tom Contributor
tom
Posted

It's more likely we'd agree that many doctors/clinics have not read the scientific literature. Here is some gluten challenge stuff I found from a thread a while back.

Well I went & read those - or the abstracts anyway. I don't think any of them sheds light on the length/quantity issue of a gluten challenge.

For starters all 3 are about dx'g children, notoriously more difficult for whatever reason than dx'g adults.

From the referenced post:

...

Here is an article showing median time to relapse in children with gluten challenge with a low amount of gluten is 13 weeks.

Open Original Shared Link

...

The abstract says the 13 wk median time was the duration of the challenges. With just monthly blood tests & an end-of-challenge endoscopy, the experiment wasn't designed to measure "time to relapse".

All 24 kids were quantifiably affected, including the one w/ the shortest challenge, at 5 weeks.

Quoting the abstract's entire Conclusion:

"Gluten intake during the challenge varied widely, and the parents were unable to give their children the recommended amount. Despite the small amounts given, all children showed signs of relapse at a clinical, laboratory, or histologic level. Much smaller amounts of gluten than previously suggested seem sufficient to cause relapse during gluten challenge in children."

They don't know either.

It's not an easy experiment to do. Gotta convince celiacs to challenge until they're sick & continue self-glutening for months. Who'd sign up for that?

We'll better know the characteristics of a minimum length/quantity of a valid gluten challenge someday, but today I've seen knowledgable forum members differ by 2x plus.

Skylark Collaborator
Skylark
Posted

Fair enough. This whole "poison yourself to get a diagnosis" issue stinks. I know kids are a little different in terms of antibodies but do you really think they are that different from adults in terms of time to relapse? I guess we really don't know.

You're right that the correct experiment is an awfully tough sell for your subjects! :lol:

LuLuBee Newbie
LuLuBee
Posted
  • Author

Thank you Guys, for all of the comments and support. I decided to give up on the idea of championing. I have been making a stronger effort to live gluten free, and have succeeded in 1 week without too much pain; I can tell when things get "stirred up" that that is when I feel a little queasy, but that's it, and it didn't last to long. I will continue to stay as gluten-free as possible. I have felt great all week! I will be getting my children tested soon though, as $$ allows. ;)

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