New Here - Ongoing Symptoms After Glutening

[JustCricket]

Hello, all! I'm "new" but have lurked here, many times, trying to figure out what was wrong with me. So, thank you, to the powers that be and the posters for providing this resource.

 

I have been gluten-free since about mid-July. I had gone Low FODMAPs after a particularly evil bout, slipped a few bites of cookie and ended up in the bathroom for several days.

 

I made an appointment with a GI doc, but as I was suffering from a lack of funds (always am, it seems), I bowed out on the scopes. *sigh*

 

I couldn't bring myself to eat gluten, except for on the occasion I needed to prove to myself that it is the culprit. I needed this, because the gluten-free diet is so exorbitant, when you don't know what to eat, except for premade items.Every time, I'd get sick. I was at my dad's house, and they didn't have much that I could eat. My stepmother, half-jokingly, said she had the mini Snickers candybars in the fridge. I read the package, picked out what I could have and liked, and munched a few down, just to have something to eat. 

 

For a time, I thought I was able to have milk, but without gluten in the diet, I was noticing some mild issues with it. I seemed to have a threshold, though, rather than an out-and-out reaction. 

 

Fast-forward to Halloween.I bought the same package for my trick-or-treaters, but ended up not being at home, since I have kids and took them to their parties. So, I started munching on these things. A few Snickers. some Midnight Milky Ways, 3 Musketeers...regular Milky Ways (totally forgot). I also had a spinach dip the maker's celiac father can eat, and corn tortilla tacos, which might have contained wheat modified food starch or maltodextrin or something. I can't remember. (I think it was Old El Paso.)

Oh, GAWD! I was sick. Not so much in the "running" way, if you know what I mean (a little the first day after), but the OTHER way. BAD! I even took a laxative, which I rarely do, unless it's B.A.D.. I started juicing vegetables. My appetite had dropped so low, the heartburn kicked up. Milk? Forget it. Started juicing fruits (more like making dairy-free smoothies). Mostly liquid diet, as I had cut down even the gluten-free bread products. I was bound up for a week, and not just not going, but hurting and not going, being able to FEEL that stuff isn't getting through. (Aren't these intro's just peachy? O.O ) Had other symptoms, too: backache, fatigue, itchiness, joint pains, dehydration, dry eyes.

 

My friend suggested the saltwater cleanse, which just seemed extreme, but I was nearly desperate enough. Finally, things started working again.  

It's been about another week, now, I tried milk again. Did okay on a little. Tried more. NOPE! Got a little loose. Now, I'm starting to cramp in the middle of my abdomen. My toilet product is looking strange. Yesterday seemed to be slight steatorrhea, I've also had some strange sensations in my leg, tingling at about the knee, with weakness, and I felt it in the arm on the same side (right), too. So, tonight, I have tummy rumblies (I haven't had milk, but did have a slice of cheese, in a totally DUH moment as I made a gluten-free sandwich earlier--It was provolone, c'mon ;p ). Toilet + Mayo Clinic says possible gall bladder/bile trouble. (Aren't these website maddening?)

Any ideas, besides, "Go see the doctor there is no way you can afford, right now?" I know it's coming to that, but I'm trying to stave it off until I can afford it. And yes, I know how ironic that is.

 

Thanks.

[GF Lover]

I think it's kind of obvious what your trouble is.  You seem to be getting glutened regularly enough to keep these reactions going.  If in the next 6 months you feel you will be able (from a money standpoint) to see the Doc then start eating a regular gluten diet now so Celiac testing will be accurate.  If you feel that you know that gluten is the culprit then you may decide to go the self-diagnosis route and become 100% gluten free.  It sounds as if you may need that Celiac diagnosis to remain completely gluten free since you keep testing your theory.  If you've been lurking on the site, then you have read all the nasty things that come with Celiac.  You've also most likely read how diligent you need to be to successfully eat gluten free.  Whichever decision to go with, we can help you get there. 

 

Colleen

[nvsmom]

I think Colleen may be right. If you pursue testing, the endoscopic biopsy requires only 2-4 weeks of gluten (about 2 slices of bread per day) whereas the blood tests need 8-12 weeks for accurate testing. If you can stay away from all gluten, even the tiny amounts in some candies and sauces as well as being more careful eating away from home (bring your own food), then testing isn't as needed as you are already treating it by being gluten-free.

 

Constipation can be a sign of celiac disease. D might be more common but I would guess about a third of celiacs deal with C. I know it can get pretty uncomfortable.   Nuts and coffee helped me a bit. Exercise can be helpful... and for some reason the library seemed to help me.  LOL 

 

Best wishes.

[GFinDC]

Sounds like celiac to me.  The gluten-free diet should not be expensive.  Most of your diet should be whole foods, not processed foods.  Whole foods cost the same for us as they do for anyone else.  Processed foods are more expensive, but you don't need to eat them.  There are some processed foods that are made with limited ingredients and are not expensive.  Like Mission corn tortillas and chips.  "Natural" kinds of peanut butters, frozen veggies, even some canned veggies.  The fewer ingredients the simpler it is to figure out if there is gluten in it.

[JustCricket]

Thank you for the welcome and support. I'm sorry I haven't gotten back before now. I was dealing with my daughter being tummy-ill yesterday. I broke down, given that this happens often with her. She wakes up in the early morning with stomach ache and she often gets nauseated.

 

PCP--> referred to GI doc.---> Script for bloodwork. We did that this morning. 

 

The GI ordered metabolic panel, thyroid check, and IgA. She didn't put on there the anti-gliadin Ab, though, which surprised me a little bit. 

 

I have learned that eating the processed GI foods isn't really good for the padding on the middle. ha! They're just a denser form of calories. I like to have a Lara bar on the run. I'm a tutor, so this happens a LOT! I've even had to make "emergency" calls. So, I think I would benefit, greatly, in reading about how others handle things on the run, especially if you guys are also short on time.

 

Again, I thank you all for your hellos and information and support.

[nvsmom]

I usually have (home made) trail mix or Lara bars with me. If I am out for many hours I will sometimes bring a veggie and fruit smoothie. Hard boiled eggs are handy to ave in the fridge, and most nuts and fruit or veggies travel well.

[JustCricket]

Now that it's not the middle of the night, I have time for a proper response.

gluten-free Lover,

I'm having the compulsion to test the theory less and less. lol. The problem, lately, is trying to get my children on board with being meticulous about keeping the gluten-free and regular utensils and baking tools separate. I think we'll need my daughter's diagnosis to make my kitchen completely gluten free. Besides for that, I'm not sure what to do. 

 

I'm still trying to decide if it's better to have the diagnosis or to go the DIY route. I do okay with it, but as I said, my children aren't very thoughtful sometimes, which makes for problems. As I'm a single mom, I need them to be diligent, and they're not there yet. 

 

NVSMom,

 

I experienced the "library effect," too! Maybe it was the coffee. ;p Every morning (or nearly), on my way to the university, I would stop for coffee, and by lunchtime, I was RUNNING to the restroom. The last time I had the C, I did situps, everyday, which had helped before. Even though I had taken the laxative, juiced everything in sight, drunk water until you could see the waterline in my eyeballs, I still had no relief. It was BAD. A time before, my dad suggested I could have a blockage. My stepmother has severe AI/GI problems, too, so I suppose he would know. I didn't get it checked, and I got relief eventually, thank goodness. I'm keeping a watch, and I know the signs.

Anyway, thank you for saying that about C versus D. I'm not underweight, either (far from it!), so I don't fit what most people think as Celiac, either. 

I like the idea of carrying fruits with me. I've been trying to figure out how to fit my trunk with a cooler or two, but then, even though I am gone for long hours sometimes, I'm not driving like I was in my first semester as a tutor. The cooler seems like more of a luxury now. haha! 

 

GFinDC,

 

I agree. At first, I missed the foods I could no longer have. I tried to replicate them without gluten, Searched recipes, gave in to cravings. Booo...

Of course, the effects of a few months of this have not been kind. heh. But I made the decision that if I had to have something "starchy" I would limit my intake and supplement the calories with raw foods and meats (cooked!). 

Thank you for the information about the Mission corn chips and tortillas. I actually seem to tolerate corn more than rice, and I've always had some issue with oatmeal. (My mom said she would vomit oatmeal up, if she tried to eat it in the morning.) 

I decided, when I went on the Low FODMAPs diet, that I would rather have celiac disease than IBS. Either are bad, but celiac disease focuses on gluten, while the Low FODMAPs diet has all of those sugars to look out for. Giving up mangoes and mushrooms, AND wheat and other foods? No thanks! I would rather focus on eliminating gluten. 

Again, thank you, ALL, for the responses, and I'm sure I will enjoy learning more from and getting to know all of you.

[nvsmom]

Anyway, thank you for saying that about C versus D. I'm not underweight, either (far from it!), so I don't fit what most people think as Celiac, either. 

 

Before going gluten-free I never experienced D unless I had a severe stomach bug. Now it is a fairly common occurrance... I don't fit the celiac mold either... and I've lost a good 20+lbs without trying after going gluten-free. I gain weight whem I don't feel well as I eat for comfort and to find energy. When I am well, food isn't as needed. Go figure, eh?  LOL

[NoGlutenCooties]

Just wanted to add that you should beware the chocolate miniatures.  The miniatures are often made with run-off chocolate - meaning the chocolate could have been used to make a different type of candybar, one with gluten in it, and then the extra run-off chocolate is used to make the miniature - thus contaminating the miniature.  So a full-sized Snickers is safe, but you're taking your chances with the Snickers miniature.

[GFinDC]

Hi Justcricket,

 

I don't have kids myself, but I hear they can be a lot of fun!   Or something like that.  Anyhow, the little rug rats may not be good at keeping gluten cleanliness top most in their minds like you said.  That's a good reason to consider making the whole house gluten-free.  If there is no gluten in the house, they won't be spreading it around.

 

There are also Food for Life brand rice tortillas, which are larger than the corn tortillas.  They are usually in the freezer section.  Rudi's makes gluten-free tortillas also.

 

Getting tested now is much easier than getting tested for blood antibodies later.  If you wait until you have been gluten-free for a while, the antibodies decline and the tests are no good.  You don't have to get tested of course.  But if you decide to get tested later, you will need to do a gluten challenge for possibly 3 months of eating gluten every day.  That can be very unpleasant and not everyone can make it through that without serious symptoms developing.  Basically, it sucks to get tested later, so don't assume you will do it.  Which is fine!  If you know it makes you sick, don't eat it!

 

I wouldn't worry about self testing yourself.  Many of us make plenty of mistakes at the start of the gluten-free diet.  It is hard to avoid gluten when you aren't used to doing it.  And even a small crumb can cause a reaction.  So there plenty of chances to find out you are reacting by accident.  Your kids may develop celiac disease also.  Celiac  is passed genetically, but not necessarily activated.  Many more people have the genes for it than actually develop the active condition.  But it is a good idea to keep it in mind as the kids grow.

 

[JustCricket]

Ugh! I didn't know that about the mini's. Why do they put the ingredients on the bag, then? I know, I know, it's not labeled "gluten free." lol.And, I guess it's a safe bet, since they're run in the same facilities. I knew I was taking a chance, but never reacted before I had the mini Milky Ways. 

 

Thanks for pointing that out, NGCooties. Love your moniker, by the way. ;p

 

GFinDC,

 

I thought I picked up some of those tortillas, but I put them back and got the burger buns, instead. Just my luck that it ended up being the tortillas I wanted. lol.

 

I have seriously considered making the whole house gluten-free. I have to learn to cook all over again, and I guess, taking a heaping helping of patience until we're completely converted. That's actually proving to be a long haul, anyway, so I'll stay as well as I can, until we're in the clear. 

 

Just a word about my background. I'm a private tutor, now, but I got my education in Biotechnology. I think I saw here (I'm hoping) that one or a few among us went into similar fields? At any rate, the methods for avoiding cross-contamination in the lab may help me in the kitchen. lol. Perhaps, too, I can find ways to clean up my kitchen in the meantime and for the future (when my kitchen is 100% gluten-free), While I know that denaturing proteins isn't enough, perhaps I can beat the...stuffing out of any residual gluten that happens to be lurking in there somewhere. (Notice my avoidance of a pun? ;p ) 

I had loads of fun turning the seasoning on my cast iron skillets into ash. ;p Now, there, the kids and I have had success!

[kareng]

I don't know about this run-off chocolate :fact".  I eat Snickers of various sizes and have not had issues.  In the case of Snickers & M&Ms, from Mars, the company has been labeling things made on shared equipment with a "may contain wheat" statement.  For some reason, my computer isn't letting me copy links.  Its mentioned in the gluten-free Halloween candy link I posted before - on Celiacdisease.about.com

[notme]

milky ways are not on the safe list, mini or not.  m&m mars is pretty good about labeling their products, so if it says it may contain wheat, i wouldn't eat it.  i don't eat too much chocolate because i have a secondary sensitivity to soy, and soy lecithin makes my insides wonky.    just make sure you check the labeling   i have been to the m&m mars facility - it is positively pristine - i used to deliver paychecks and if i brought my kids with me, we walked off with tons of 'mistakes' <bags of candies that were not u[p to their standards.  you couldn't tell anything was wrong with them (maybe the 'm' was off center or misprinted or something) my kids loved going up there!   so, the idea that they are putting 'run-off' chocolate into stuff just willy nilly is a little hard to believe.  some manufacturers will, around high-candy demand holidays (like halloween) sub out their novelty production, but it still should be labeled.  hope you feel better

[IrishHeart]

Just wanted to add that you should beware the chocolate miniatures.  The miniatures are often made with run-off chocolate - meaning the chocolate could have been used to make a different type of candybar, one with gluten in it, and then the extra run-off chocolate is used to make the miniature - thus contaminating the miniature.  So a full-sized Snickers is safe, but you're taking your chances with the Snickers miniature.

 

I have never heard of this before. Is this something the company has shared on its website? 

[JustCricket]

If anything was verification that it's gluten that I should be worried about, it was the surprise I got after having the Milkways. Good I like the Midnights better. ;p 

 

While going through the candies and the kids' hauls, I found Whoppers. I've never been able to eat many of them. Even as a kid, they would make me sick. Telling? Maybe so. Anything malted (unless it was in a drink or something), made me feel icky, after. The icky factor increased with the more I had. Before realizing my sensitivity, I decided I could eat one little Whopper a year, and be just fine. lol. Maybe not. 

 

Thanks for the information. I will definitely keep my eyes open and won't make the same mistake regarding Milkways, again! (Except for maybe the Midnights. ;p )

[NoGlutenCooties]

The original Milky Way is off limits, but a couple other varieties are ok:  Open Original Shared Link

 

I know this isn't the original place I read about the chocolate miniatures, but Hersey's miniatures are listed on the "not gluten-free list":  Open Original Shared Link

I'm still looking for the other stuff I read.  Once I know it's on the off-limits list I don't bother to keep documentation on it...

[NoGlutenCooties]

The original Milky Way is off limits, but a couple other varieties are ok:  Open Original Shared Link

 

I know this isn't the original place I read about the chocolate miniatures, but Hersey's miniatures are listed on the "not gluten-free list":  Open Original Shared Link

I'm still looking for the other stuff I read.  Once I know it's on the off-limits list I don't bother to keep documentation on it...

 

 

I think I may have first read about the danger of the minis on this forum... https://www.celiac.com/forums/topic/77321-are-hersheys-miniatures-gluten-free/

[NoGlutenCooties]

Ok... now I'm obsessing.  I just wrote an email to the Mars people.  I'll let you all know what I find out.

[JustCricket]

LOL! I just got off the phone with Old El Paso. I accidentally picked up the soft and hard pack, instead of just the hard shell pack. I know I'm taking a chance, anyway, but I read that Old El Paso is one of the good ones. Plus, I ran today, and if I don't make exceptions, I'll be out of food money in a week.

 

He's going to give me a call back. I'll share what I find out.

[IrishHeart]

I think I may have first read about the danger of the minis on this forum... https://www.celiac.com/forums/topic/77321-are-hersheys-miniatures-gluten-free/

But that "run-off" statement.....That's a thought a former member expressed, not a fact.

 

 

The run off chocolate may have been used to coat the gluten containing chocolate bars too, at least that was the theory from what I have read.

[JustCricket]

NoGlutenCooties, Please let us know what they say at M&M/Mars. I'll post what I hear from Old El Paso. He's going to call me, though, so I won't have the benefit of copying and pasting from an email.

[kareng]

LOL! I just got off the phone with Old El Paso. I accidentally picked up the soft and hard pack, instead of just the hard shell pack. I know I'm taking a chance, anyway, but I read that Old El Paso is one of the good ones. Plus, I ran today, and if I don't make exceptions, I'll be out of food money in a week.

 

He's going to give me a call back. I'll share what I find out.

 

 

Are the soft tortillas wheat or corn?  Plain corn ones should be fine.  Does it contain a powdered spice packet?  Just read the ingredients, it will list if it has wheat.

[NoGlutenCooties]

But that "run-off" statement.....That's a thought a former member expressed, not a fact.

 

 

The run off chocolate may have been used to coat the gluten containing chocolate bars too, at least that was the theory from what I have read.

 

True.  But half the stuff we "know" about Celiac has come from someone's own analysis/thoughts.  If we waited for hard "facts", half of us would be dead before the medical professionals figured this out.

[JustCricket]

Are the soft tortillas wheat or corn?  Plain corn ones should be fine.  Does it contain a powdered spice packet?  Just read the ingredients, it will list if it has wheat.

 

It was the seasoning packet I was worried about. It has maltodextrin, so that's why I called. The package says "Contains Wheat" of course, because of the flour tortillas. I wanted to be sure the seasoning packet was fine, and I would avoid the flour tortillias.

[NoGlutenCooties]

Maltodextrin is gluten-free:

 

Maltodextrin

Maltodextrin is gluten free. It can be made from a variety of starches, including corn, potato, rice or wheat. However the source does not matter because maltodextrin is such a highly processed ingredient that the protein is removed, rendering it gluten free. If wheat is used to make maltodextrin, "wheat" will be appear on the label. Even in this case, the maltodextrin would be gluten free.

Open Original Shared Link

 

That said, many people (especially Celiacs) are sensitive to processed food because of all the additives and crap that's in it, gluten or not.