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Calling All Sleuths

thumper

By thumper
in Coping with Celiac Disease

Recommended Posts

thumper Apprentice
thumper
Posted

Hey everyone,

I have been gluten-free for alittle over a month now. I have had my ups and downs and I still have ALOT to learn yet, but I have great friends in this wonderful group that have helped me tremendously.

Well once again I find myself over my head this is the second day of having really terrible symptoms return to me, Imodium has helped some and I KNOW that I have not been glutened.

So I am calling all sleuths to help me out with this...... when you have a terrible flare up like this one where do you start to look for the cause of it ?? The only new thing that I added to my diet was that I treated myself to Chocolate flavored Silk. I have been using soy milk (Silk) instead of dairy and never had a problem with it before. In the past I use to drink Silk trying to control my symptoms before I knew I have Celiac and never had a reaction to it but because I was still having gluten I am sure it made no difference.

Those are all the facts and I can't come up with anything can any one tell me where to start or does anyone have any ideas as what might of caused this ??

Thumper

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hi, Thumper!

I think we have a BamBam on this site, too...

Possibilities:

D caused by sensitivity to soy

D caused by sensitivity to chocolate or caffeine

D caused by virus

D caused by food-borne bacteria

D caused by hidden gluten in food (for example, deli tuna salad often has bread crumbs, "lite" ice cream has wheat starch, soy sauce contains wheat, many meats such as steak, chicken, and rotisserie chicken are pre-marinatd in a soy-sauce containing marinade, and many cereals contain barley malt, which is gluten, etc etc etc)

Immodium might not be the best thing, because diarrhea is your body's way of getting rid of toxins from the lower digestive tract as quickly as possible. If you take immodium, it stops that from occurring. Yes, short term you will be more comfortable, but long-term, you are poisoned for a longer period of time.

gluten15 Apprentice
gluten15
Posted

Well..here I go again with CARRAGEENAN. As soon as I gave up my Silk Soymilk..which contains this product..my problems got better. Not sure if it was the carrageenan..which can cause digestion stress and some more serious health problems..or it it was the soy.

I have given up so many things. I was in love with the plain sugar free Silk Soymilk. I was putting that on all these gluten cereals that I thought were healthy. It sort of all is crazy to look at now.

I thought eating all these 'healthy' grain cereals with Silk Soymilk was such a healthy thing. Shaking head now..just crazy sometimes.

sickchick Community Regular
sickchick
Posted

I stood for 20 minutes going through every different brand of soy milk... rice milk... oat milk... almond milk...hazelnut milk... and what I found is the only brand WITH NO carageenan is Rice Dream.

be well B)

Panopticism Rookie
Panopticism
Posted

Since going gluten free I've had to also cut out eggs, casein, caffeine, meat, high fat... anything and a bunch of other things. I just try to stick to the foods that human beings were originally supposed to be eating. Food for thought... literally.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
I stood for 20 minutes going through every different brand of soy milk... rice milk... oat milk... almond milk...hazelnut milk... and what I found is the only brand WITH NO carageenan is Rice Dream.

be well B)

But Rice Dream has undeclared gluten!!! :o

jerseyangel Proficient
jerseyangel
Posted
But Rice Dream has undeclared gluten!!! :o

Yes! Beware...it is marked gluten-free, but is processed with barley. <_<

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Guest j_mommy
Guest j_mommy
Posted

Start keeping a food diary, with symptoms. That has really helped me in the past.

mftnchn Explorer
mftnchn
Posted

On this forum it seems like some people develop sensitivities after going gluten-free. Perhaps this is because the immune system starts to work better. Anyway it seems to happen to some.

I'd try avoiding soy, and then retrying it. The soy protein is somewhat similar to gluten, and many of us do have trouble with it. It might be that you can handle very small amounts, or can do it once a week or something.

Again, a hidden gluten ingredient or cc could be an issue even when a label doesn't have it.

One other thought: have you replaced your gluten containing personal care products? That has made quite a difference for some of us.

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      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
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      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
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