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gluten-free Diet Isn't Working Anymore


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7 replies to this topic

#1 Teddy's mom

 
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Posted 14 September 2010 - 05:51 AM

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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#2 RiceGuy

 
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Posted 14 September 2010 - 08:17 AM

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!
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#3 i-geek

 
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Posted 14 September 2010 - 09:36 AM

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.
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#4 cassP

 
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Posted 14 September 2010 - 02:58 PM

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
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#5 Teddy's mom

 
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Posted 14 September 2010 - 06:12 PM

Thank you everyone for your responses!
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#6 dilettantesteph

 
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Posted 15 September 2010 - 04:05 AM

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

 
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Posted 15 September 2010 - 05:45 AM

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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Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11
Son: ADHD '06,
neg. CELIAC PANEL 5/07
ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08
ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08
Gluten-free-Feb. '09
other food allergies

#8 sandsurfgirl

 
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Posted 15 September 2010 - 11:08 AM

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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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!




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