Gluten Challenge-Questions

[crampy girl]

Ok, I am on day 7 of this gluten challenge. I have to admit I have not been doing the full on 4 servings, started with one, progressed to 3 due to fear of reoccurance of my horrible stomach cramps and D. I have mild cramping after I eat gluteney stuff (cheezits, triscuits, bagels, bread, cream of wheat) but no diarrhea yet. My scopes are in 3 weeks. My question is this:

1. Do I have to eat the same amount that were causing my symtoms to get the "damage" to show up on endoscopy? ( I was having daily cramps, and 2x a week dibillitating episodes) Everything I have read says 4 servings 4 weeks, I was gluten free for 12 weeks prior to the challenge.

2. Since I haven't had a major reaction, is it possible that I have a threshold and as long as I stay under it, I am ok, ie, no damage to intestines, organs,etc. and that I don't have Celiac but rather just gluten intolerance, therefore I can sneak some amount. Does this hold true for casein, soy?

3. Does Dr. Fines Enterolab results of IgA really hold true for anyone, I wonder if I am really milk protein/soy allergic and symtomatic?? Has anyone found this to be true????? I do have cramps with lactaid milk if I am overdoing it on milk products (usual consumtion is 3-4 servings of dairy daily)

those are loaded questions. I don't expect a straight foward answer just wanted to see what you guys with celiac/gluten intolerance thought or have experienced......

thanks in advance. You guys have been so helpful and I really appreciate it.

Crampygirl.....

[jerseyangel]

Hi Crampy,

I've not done a gluten challenge myself, and I'm not an expert-- but having been around here for years I notice that many times people that have gone gluten-free for a while and then reintroduce gluten have varied responses. I don't think there is an established pattern--it kind of depends on how damaged you were, how quickly you heal, and just your own reaction pattern.

I've seen people that reacted strongly to trace amounts when on the diet take a while to react when eating gluten full on. Some get awful reactions right away. From personal experience, I wouldn't equate reactions with possible damage--they don't always go hand in hand.

My advice to you would be to stay the course and try to stay as close to the "4 slices a day or the equivalent" as you can if you want as accurate a result as possible.

[crampy girl]

Thanks Jersey angel, I had some more cramps and 3 trips to the bathroom so far, no D yet, but scared. I will stay on course with 4 pieces of bread. 2 more pieces to go today.

[cassP]

some members on here suggest that at least 2 months or more is required for a proper gluten challenge.

my doc only put me on a 2 week challenge- and my tests were pretty weak.. they werent positive enough for the docs to think i was Celiac 2 years ago.. but i am indeed a Celiac..

honestly tho- i dont think i could have handled more than 2 weeks- i was emotionally DONE... oddly my bowels were not as bad off as they had been in the past- but my anxiety and shakiness was thru the roof- i was DONE

good luck with your challenge- i know how uncomfortable/painful it can be

PS-make sure they do all the blood tests so that the challenge wasnt a waste of your time

[Skylark]

1. Do I have to eat the same amount that were causing my symtoms to get the "damage" to show up on endoscopy? ( I was having daily cramps, and 2x a week dibillitating episodes) Everything I have read says 4 servings 4 weeks, I was gluten free for 12 weeks prior to the challenge.

2. Since I haven't had a major reaction, is it possible that I have a threshold and as long as I stay under it, I am ok, ie, no damage to intestines, organs,etc. and that I don't have Celiac but rather just gluten intolerance, therefore I can sneak some amount. Does this hold true for casein, soy?

3. Does Dr. Fines Enterolab results of IgA really hold true for anyone, I wonder if I am really milk protein/soy allergic and symtomatic?? Has anyone found this to be true????? I do have cramps with lactaid milk if I am overdoing it on milk products (usual consumtion is 3-4 servings of dairy daily)

1. You have to eat a LOT of gluten if you are only challenging for 4 weeks. One study showed the median time for reappearance of damage for a challenge with a light amount of gluten is about 12 weeks. Yours may come back faster since you weren't gluten-free for too long.

2. You have DQB1*0201, which is linked to DQA1*0501. That means you have pretty good chance of having a copy of DQ2.5. If I had DQB1*0201, cramps from wheat, and all your symptoms, I would personally go strictly gluten-free. You may not have full-blown celiac disease, but you have what we currently think is the genetic background to develop it. You can always reintroduce wheat if we learn more in the future and there are more tests. You can't "undo" celiac from eating wheat beyond when your body starts to complain. (This is based partly on seeing a talk by Markku Maki. He is of the opinion that everyone with DQ2.5 and reactions to gluten should go gluten-free for life.)

3. Dr. Fine's Enterolab is not a validated clinical diagnostic test. There is no data to discuss whether it holds true for everyone, as he has not seen fit to publish any. If you have cramps from a food, that is a much more definite sign of intolerance.

[crampy girl]

Thanks Skylark, you are always so helpful. After this challenge, once I get my scope results back, I think I am going to redo the blood tests. But, everything I am reading and seeing posted here tells me what you do. It's just so painful. I am going to resolve that I will go gluten free no matter what my scope/blood work says since I am symtomatic from gluten (just takes a larger dose of it to get it flared up) and it's probably only a matter of time before the bomb will go off. Today was a borderline day, I had cramps with several bm but no D, but my reflux, burping and gas are all back when they had disappeared off gluten. I swear it's like a drug, you try a little and get little pleasure, up the annie and taste starts to come back and before you know it, I am out of control and want to eat a box of cheese its, or pig out on bread and butter.

It would be so much easier if my husband would do it with me. And if my kids had it too. I am thinking of testing them for the celiac blood profile and enterolab and if either come back positive for gliadin or Ttg auto antibodies that will make it so much easier to convert my entire house hold to meat and potatoes. Sighhhh. thanks for always being there Skylark, I mean that.

Anita

[Skylark]

Glad to help a little. As far as your kids, they have a 50% chance of having DQB1*0201 so it makes sense to get them celiac panels, especially if they show any GI or nervous system trouble.

You'll get used to the diet, even with gluten-eaters around. You don't need to push your husband into the diet, unless you turn out to be highly sensitive and need a gluten-free kitchen. What you DO need is support from him, not waving pizza in your face, keeping crumbs cleaned up, maintaining separate jars of peanut butter and mayo - that sort of thing. It's pretty easy to find "normal" foods that are gluten-free to feed your family at mealtime. Really it's better if your husband and kids are healthy on a normal diet, right?