Figuring Out Gluten Challenge (How Much Gluten To Add To gluten-free Muffin?

[sreese68]

*Edited to clarify* this is not a challenge so I can get another blood test or biopsy. I only mentioned the blood test to show that I don't have a definite diagnosis. I feel better off gluten, but I also feel better off fructose and fructans, which I cut out the day I cut out gluten. I don't know if going off all of them made the difference or only the fructose/fructans. I want to challenge with gluten to see if I really do need to be off it permanently. *end of edit*

My blood test was negative, but my neurologist thinks I’m most likely gluten intolerant. Says he sees too many false negatives to rely on blood work alone. I’ve been gluten-free for 7 weeks, and I’d like to try a gluten challenge to see if it really does effect me. What complicates matters is that I definitely have an intolerance to fructose and fructans. Since fructans are found in wheat, rye, and probably barley, a reaction to those foods may just be a reaction to fructan and not gluten. (If I'm ONLY intolerant to fructans, I don't have to worry about CC, and I may eventually be able to add small amounts of wheat back in.)

So I plan on adding vital wheat gluten flour into a gluten-free muffin mix and eating one muffin. (Technically, I’m going to ask a friend to do it at her house.) I just don’t know how much. I want to provoke a reaction but not end up making myself overly sick. I found out that NON-gluten-free muffin mix has 3g of protein, so I assume that’s how much gluten is in it. Vital wheat gluten flour from Bob Mills has 5.75 grams of protein per tablespoon (round it to 6 to make things easier). So wouldn’t half a tablespoon of vital wheat gluten flour be the equivalent amount of gluten in a muffin? And I’d have to put 6 tablespoons into the mix to imitate a non-gluten-free muffin? Or am I way off here? It just sounds like a lot.

I guess I should ask if one muffin is too much? *Another edited in addition* When I react to fructose or brown rice (not sure why that bothers me!), there's a two-day delay before reactions show up. Not sure how long it'd take for gluten to bother me if it does.

[ravenwoodglass]

  On 5/12/2011 at 7:24 AM, sreese68 said:

My blood test was negative, but my neurologist thinks I

[sreese68]

  On 5/12/2011 at 11:37 AM, ravenwoodglass said:

To challenge gluten you should eat the equivalent of 3 to 4 slices of bread or another gluten source for 2 to 3 months if you have been gluten free. If you react and your doctor recognizes that reaction then you would stop the challenge then. If you are trying to get the best chance at positive blood work or biopsy then you would continue on the challenge and at the end of the 2 to 3 months get the tests done.

Sorry I wan't clear that this challenge is strictly for peace of mind. I'd have to find a whole new GI doc to get testing, and I figure if I react to eating gluten again, a test wouldn't be necessary. My GI doc said that he wasn't sure why my neurologist wants me off gluten since according to him it only causes D and not C like I have and it's only a disease of the GI tract - doesn't effect other systems. He told me this over the phone, and I promptly said "OK. Goodbye." Figured if he wouldn't educate himself after talking to my neurologist, he certainly wouldn't do it if I talked to him!! Anyway, edit my OP to be more clear.

[ravenwoodglass]

  On 5/12/2011 at 1:09 PM, sreese68 said:

Sorry I wan't clear that this challenge is strictly for peace of mind. I'd have to find a whole new GI doc to get testing, and I figure if I react to eating gluten again, a test wouldn't be necessary. My GI doc said that he wasn't sure why my neurologist wants me off gluten since according to him it only causes D and not C like I have and it's only a disease of the GI tract - doesn't effect other systems. He told me this over the phone, and I promptly said "OK. Goodbye." Figured if he wouldn't educate himself after talking to my neurologist, he certainly wouldn't do it if I talked to him!! Anyway, edit my OP to be more clear.

Your GI doctor is flat out uneducated about all the body systems celiac effects. Do go with your neuro's advice and keep in mind that it can take some time for neurological issues to be relieved on the diet. IMHO your neuro symptoms are much more likely to be gluten induced so stick with it for a while. If you have fructose intolerance you may find you are more able to tolerate it after you have fully healed from the effects of gluten.

[sreese68]

  On 5/12/2011 at 8:26 PM, ravenwoodglass said:

Your GI doctor is flat out uneducated about all the body systems celiac effects. Do go with your neuro's advice and keep in mind that it can take some time for neurological issues to be relieved on the diet. IMHO your neuro symptoms are much more likely to be gluten induced so stick with it for a while. If you have fructose intolerance you may find you are more able to tolerate it after you have fully healed from the effects of gluten.

Thanks! I do think the tingling in my hands takes longer to be triggered than it used to, so I think I'm seeing improvements there. I still get tingling in my feet and calves from time to time. I'm beginning to wonder if my C is from my nervous system and not just food related. However, I got really backed up after testing brown rice last week, so maybe it is food. Trying to up the fiber and will talk to my neuro during my next appointment. I'm waiting another day or two to do a gluten challenge to let my system calm down a little from that brown rice!

[ravenwoodglass]

  On 5/14/2011 at 4:30 PM, sreese68 said:

Thanks! I do think the tingling in my hands takes longer to be triggered than it used to, so I think I'm seeing improvements there. I still get tingling in my feet and calves from time to time. I'm beginning to wonder if my C is from my nervous system and not just food related. However, I got really backed up after testing brown rice last week, so maybe it is food. Trying to up the fiber and will talk to my neuro during my next appointment. I'm waiting another day or two to do a gluten challenge to let my system calm down a little from that brown rice!

Celiacs often can not utilize B12 from food or swallowed supplements and low B12 can cause that tingling. You may want to get some gluten-free sublingual B12 and see if it helps.

[sreese68]

  On 5/14/2011 at 7:16 PM, ravenwoodglass said:

Celiacs often can not utilize B12 from food or swallowed supplements and low B12 can cause that tingling. You may want to get some gluten-free sublingual B12 and see if it helps.

My neurologist has checked my B12 levels twice now, so they're good so far. Also checked my thyroid functioning and for diabetes when I told him I was dehydrated. All were normal (turned out to be the Allegra I was taking). I love how this guy actually LISTENS to what I say and is proactive into looking into what may be causing symptoms!

[ravenwoodglass]

  On 5/14/2011 at 7:34 PM, sreese68 said:

My neurologist has checked my B12 levels twice now, so they're good so far. Also checked my thyroid functioning and for diabetes when I told him I was dehydrated. All were normal (turned out to be the Allegra I was taking). I love how this guy actually LISTENS to what I say and is proactive into looking into what may be causing symptoms!

If the levels are below 500 or if the second test was lower than the first it might still be a good idea to try the sublinguals. It can take quite a while from when our bodies stop being able to utilize B12 until it shows in blood work. My neuro thought mine were fine also because they were right at the old cut off which was 250. That has been raised to 500 not to long ago. B12 is a water soluable vitamin and there is no toxic level so it won't hurt you to give it a shot while you are healing from the gluten. It can also help the nerves regenerate a bit faster from what I understand.

[awwashburn]

Sharon, how did your fructan versus gluten challenge go? Ive also bought Bobs Red Mill gluten flour to do the same thing. I figure just a pinch would be enough to cause me to react, but no idea really. There are some carbs in the flour according to nutrient label. Hopefully they don't represent fructans but I havent been able to find out. Thanks for any advice.