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gluten-free Diet Isn't Working Anymore


Teddy's mom

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Teddy's mom Rookie

After 7 years of diarrhea, my daughter was tested through blood work and biopsy for celiac. Both results were negative, but she went gluten-free anyway in Feb. 2010. She improved dramatically and felt she was gluten intolerance. She had been doing great, but diarrhea has returned, somewhat. Could she have become more sensitive? I saw her gastro MD and told her she was doing well on gluten-free a few months ago. MD said great, but a lot of people who go gluten-free have symptoms disappear for 6 mons and then the diarrhea etc. comes back. She didn't know why. Has anyone else experienced this? Should she be tested for other food allergies or intolerances? This is frustrating. What will there be left for her to eat? Just don't want her to give up gluten-free in case gluten could cause other health probs down the road, lupus, etc. Anyone else experience this?


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RiceGuy Collaborator

Having additional intolerances or allergies show up later is very common. However, there may also be gluten sneaking in someplace unsuspecting, such as CC from foods produced on shared lines or in shared facilities, shampoo, cosmetics, or skin/hair care products. Foods prepared in pans which are also used to prepare gluten-containing foods may be a source too. A toaster used for wheat bread is not safe (and cannot be reliably cleaned), so if she wants to toast gluten-free bread, she needs a dedicated toaster. Wooden utensils and cutting boards are also a no-no.

If the problem is from an additional allergy or intolerance, you might start looking at the top allergens, which include wheat (obviously), dairy, soy, eggs, corn, tree nuts, peanuts, and shellfish.

Processed Foods are subject to occasional reformulation, so rechecking labels is a good idea if you haven't already done so. Some foods may be more prone to CC than they used to be.

Hope you get it figured out soon!

i-geek Rookie

Have there been any changes in her diet recently? Something as simple as switching brands of a favorite food or beverage?

Otherwise, sadly other intolerances can develop. I'm 8 months gluten-free and am having GI issues again (although thankfully not anywhere near as bad as those last few months pre-gluten-free). Now I'm trying to figure out if I'm still recovering from being badly glutened a few weeks ago or if I'm developing a secondary casein intolerance. Not fun. Really hoping it's the former.

cassP Contributor

how old is your daughter??

im asking, because- as an adult- i've done a lot of dieting. and now, ive finally gathered enough info to know that some of the diet foods ive eaten cause bloating and "D". anything with Sorbitol, Malitol, Mannitol, etc... (even just chewing the gum!!)

also, SOMETIMES dairy gives me "D".

and if i've had too much tea or coffee.

too much Fructose can give me HORRIFIC bloating and pain- but usually doesnt give me "D"

and stay off the gluten- she felt great going gluten free- so i would stick with it

Teddy's mom Rookie

Thank you everyone for your responses!

dilettantesteph Collaborator

I got more sensitive to cc as time went on. I eat a whole foods diet now. I hope that she improves.

missy'smom Collaborator

We've discovered, much to our suprize, that we've developed a number of food allergies. Alot of folks say testing wasn't helpful for them but it was for us. We didn't have good luck with the standard allergist but I found one who is informed about food allergies and routinely runs large food panels and believes in eliminating foods even if there is no anaphylaxis. We have been through a process of eliminating those foods that we tested pos. to and re-introduced them one by one to see how or if we reacted. It's been eye opening and very helpful. I've found that many of my reactions were GI in nature.


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sandsurfgirl Collaborator

Make sure she isn't getting glutened somewhere first. Did you switch soaps, shampoos, conditioners? All that stuff gets in your mouth in the shower and bath, gets on your hands and then you eat. Look for hidden sources. Is she sneaking foods behind your back?

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
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