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kaki_clam

Am I Really Back To Square One?

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I feel like a crazy person right now. I have scoured and scrubbed my cupboards, I have tossed out anything suspect..even though i know it's gluten free when I bought it...i have done the same thing at my boyfriends house....and yet...I am almost as sick right now as I was when I first went Gluten free over a year ago!!! Things got soooo much better at the 10 month mark...I thought i might actually be able to do this....and now it's like i am starting all over!!

I have been ill since Monday...severe cramps, my kinda diarrhea (which is normal poops 3-5 times per day....stupid constipation!!), depression..(I cried at work today 3 times and I don't know why!) I cried when my boyfriend stopped by at lunch to give me a kiss....

I have done nothing different in any way, shape or form in my life that might have caused this!! I have been racking my brain and come up with two things.....one..cat liter??? Does it have wheat in it???.....two..stress....and i don't know how to fix that. Help....can anyone think of anything i haven't thought of??? I can't go through this again.

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Going gluten free is not for wimps. It's hard and it's often a mystery.

I would suggest that you write down every thing that touches your mouth, including kisses.....new meds, new shampoo, new lotions, new lipstick...bla, bla...

You might not know what's zapping you, but try going back to simple, clear and clean. (ie. no processed foods, clear shampoo, revisit meds/vits. And take a second or third look at what's new in your life.

AND, your are wonderful! I smoked for over 30 years, and quit four years ago. You are a cooler person for not smoking. I know I'm cool. :P


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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I cried when my boyfriend stopped by at lunch to give me a kiss....

Is your boyfriend really ugly? :D :D :D Sorry bad joke.

Now, Lisa had some good advice there. Check everything again, ingredients can change. BC has recently added soy flour to their cake mixes. Duh!

How about other food intolerances? Could be you have developed another one or two and need to eliminate some additional foods from your diet. I had several show up after I had been gluten-free for a while and get worse over time. Like soy, nasty, yucky horrible stuff it is. Made me feel much much better getting off it too. Something to think about.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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First thing I would think is this:

Check out if any of your products' companies have changed practices lately. We had an oil that had been fine, then we had problems with, and found out later that they were processing wheat germ oil on the same line as the other oils. So companies that you had trusted products from could have added a new product on the same line, a new product in the same room, new sources for ingredients they use, a new soap that contains gluten that they use to clean the processing machines - all sorts of stuff. We ended up chucking everything processed and starting anew (we even a salt has made us sick, at this point. :blink:)

Another possibility. My daughter is 14 months gluten free right now. About 4 or 5 months ago, she started getting sick again, and it was the same thing. We couldn't figure it out. We hadn't done anything new.

Now we've figured it out - she's reacting to foods that used to be safe. I don't know if she's more sensitive, or if she is just finally having reactions to foods that were always bothering her and her body just didn't react noticeably before, but we had to drop a LOT of food in her diet.

IF that's what's happening to you? First, I'd start a food journal and track brands, foods, reactions - everything. And here's things that you can look to if you are getting more sensitive (at least things we had to look at).

Any gluten free grains - they all have some level of gluten cc. Many below the 'gluten free' level, but if you're getting more sensitive, they can make you sick. You might try to ditch them for a while and see if things improve.

Beans and nuts - also usually cc at some level, because of processing and farming practices.

Produce can be a gluten source, too, if you are sensitive enough. Mulch, pesticides, sprays, wax coatings - it can all be CC with gluten or contain gluten derived ingredients. So washing and peeling all your produce might help, too.

oil, salt, and spices - can be a cc risk, too. A rare one, but it can happen. Worth checking.

oh, the cat litter - yeah, they have wheat cat-litter now, but most doesn't have gluten, I believe. But have you looked at your dish soap, shampoo, laundry detergent, lotions and such? If it touches you or your lips, or touches things that touch your lips (like your dishes), maybe it's not getting rinsed off enough and is getting you sick.

Also, if you eat processed gluten-free products (crackers, breads, and so on), you can still get too much gluten during the day, since these are actually 'super low gluten' rather than 'zero gluten.' so if you've been eating more, or if you've become more sensitive, the amount of the gluten-free food you eat could be the problem rather than the type, ya know?

Hoping very much you feel better soon. Really, a lot of us here have been in that place and can honestly say we feel for you. It's hard, it sucks, but you can do it!

Oh, ahem... you mentioned kissing the boyfriend. Has HE changed any of his eating practices? ;) My hubby can't have gluten for hours before we kiss or I get sick as a dog. <_<


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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one more thing....i did quit smoking..it's been 1 month today! thought i should add that.

Did you use any quit smoking products, patches, gum, script etc?


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Did you use any quit smoking products, patches, gum, script etc?

Nope, I quit cold turkey...I am back to chicken broth (gluten free) and water only...and even that is making my ill.....but i am starvin!

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Going gluten free is not for wimps. It's hard and it's often a mystery.

I would suggest that you write down every thing that touches your mouth, including kisses.....new meds, new shampoo, new lotions, new lipstick...bla, bla...

You might not know what's zapping you, but try going back to simple, clear and clean. (ie. no processed foods, clear shampoo, revisit meds/vits. And take a second or third look at what's new in your life.

AND, your are wonderful! I smoked for over 30 years, and quit four years ago. You are a cooler person for not smoking. I know I'm cool. :P

Yea, this is great advice.

To simplify, you may consider using Dr. Bronner's magic castile soap (unscented) for cleaning everything - it's made for cleaning literally everything and when I'm reacting to stuff, that's my stand-by for hair, face, body, floor cleaning, even laundry. Helps make the crazy itchies go away.

Read all labels twice. Sometimes ingredients change.

Can you eliminate ALL GRAINS from you diet for about two weeks? And just eat simple meats, fruits, veggies, salads (watch the dressing for hidden offenders!!!)? Even some naturally gluten-free grains can have easily been contaminated - where they were stored (shared silo with wheat), how they were harvested (same equipment in the field), how they were transported (truck), how they were handled in a warehouse (next to wheat? or in the grocery store in those bins with scoops...those are terrifying!).

If there is any CC left in your house after knocking out all of the above, hopefully a very strict food journal would find it.

Good luck to you!!!


Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**

Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

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You might try gluten-free beef broth and see if that's better - chicken has a highger CC rate than beef, due to how they defeather the birds (the grains the birds ate void some in the defeathering machine and get all over the skin. The poultry is sterilized later, but that can't get all the gluten off. <_<


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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You might try gluten-free beef broth and see if that's better - chicken has a highger CC rate than beef, due to how they defeather the birds (the grains the birds ate void some in the defeathering machine and get all over the skin. The poultry is sterilized later, but that can't get all the gluten off. <_<

:blink::blink::blink:


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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I cried when my boyfriend stopped by at lunch to give me a kiss....

Is your boyfriend gluten-free? Those kisses can getcha. If he has a sandwich, beer, or fried-chicken before the kiss, you can easily be glutened. Make sure he brushes before the smooch.


Jenn

dx celiac 9/2007: gluten-free 9/2007

corn intolerant: corn-free 5/2010

nut allergy: nut-free 8/2010

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I've heard that smoking can mask celiacs disease, and quiting smoking has been a trigger for some to develop symptoms. Perhaps smoking was hiding trace ingestion of gluten, and it's now rearing its head?

Doesn't explain anything if you've been strictly gluten-free though. If it was me, I'd go back to basic food stuff and see if that helps symptoms. If it does, then something you've been eating has been getting you (Eg. processed food, cappuccino at work etc) One of the processed foods you buy might have changed their ingredients or where/how they process their food, leading to something getting to you.

Good luck in hunting down the culprit!


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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SKIPPY SUPER CHUNK PEANUTBUTTER this is a new thing i have been eating. I can find where regular skippy is gluten free...I can't find anything about the super chunk...does anyone know?

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You've gotten good advice. I may just confuse the issue, but a few thoughts from my experiences with mystery reactions.

After I went gluten-free, I was doing pretty well on the diet when I started having GI reactions I hadn't had before. It took me a few months, but I realized it was an intolerance to tree nuts. I'm still questioning the peanuts. I had never had this problem before, but I hadn't ever eaten nuts in that volume before.

Additionally, here is the list of items that accidentally glutened me: dried split peas (no wheat listed on the bag), tortilla chips that were processed on the same lines (previously, I had not had a problem with this brand), public rest room soap that contained vitamin E/tocepherol acetate, wet wipes before eating, pizza sauce the customer service rep said was gluten-free, but also stated he should have me speak with the dietitian on Monday. I was too eager to make pizza, eating too much gluten-free processed foods over 2-4 days at a time. Eating out 50% of the time. Other more obvious items. I almost got glutened by a soy milk that I didn't catch had gluten until I was unloading it from the grocery cart. A soy ice cream that was labeled gluten free, but must have been made on the same lines as their gluten items, because it made me sick every time I ate it. I've noticed they stopped advertising it as gluten free now. Bird food that went airborne as I picked up the garbage bag from the can.

Also, if it just started 2 weeks ago, it might be a one or two time exposure that has left you with an extended recovery.

Kitty litter. Swheat scoop I think is the brand that contains wheat. Check his food though. I'm always paranoid about when I have to put my kitty on dried cat food for vacation because it contains wheat. His moist I was able to get gluten free. We had to switch my bird to gluten free bird seed. That was hard to find. I don't think outdoor bird food typically contains wheat although I would read the label before handeling it.

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Yeah, I know, right? When I found that out, I was pretty much grossed out, honestly. Eeeeew.

:blink::blink::blink:


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I honestly don't, but if it has nuts, that ups the chances it can be CC. The parent company, unilever, also has no information or listed policy on gluten in any of their products on their main website (not a good sign). They did say, however, that you can ask them about gluten, if you list the product in question and the country where you bought it. And the link is broken. :-(

I'd drop it, honestly.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I honestly don't, but if it has nuts, that ups the chances it can be CC. The parent company, unilever, also has no information or listed policy on gluten in any of their products on their main website (not a good sign). They did say, however, that you can ask them about gluten, if you list the product in question and the country where you bought it. And the link is broken. :-(

I'd drop it, honestly.

Unilever does not have gluten free lists. The DO label all sources of gluten on their ingredient listing, or allergy warning. They are one of the great, reliable companies.

If wheat, barley, malt or rye is not on the label....it's free of gluten. ;)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Where do they list their policy on labeling gluten? Is it on the web anywhere, or does one have to get in touch with them for it? It's nice to hear that they do that - we need more of that! - but I couldn't find the information anywhere when I was looking, so I'd love to be able to link to it if it's available. :)

Unilever does not have gluten free lists. The DO label all sources of gluten on their ingredient listing, or allergy warning. They are one of the great, reliable companies.

If wheat, barley, malt or rye is not on the label....it's free of gluten. ;)


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Unilever owns Skippy peanut butter? While they list products and where they derive, they won't list it if the peanuts are cc. Since the Skippy is new, and maybe was started when the symptoms started, it would be a good idea to drop it to see if things improve. You may be more sensitive than some others who are able to eat it without issues.

You aren't back to square one, you just have to figure out what is getting you. I've been through this lots of times.

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CONGRATS on quitting smoking. One of the hardest things to do. Add it to going gluten-free. hats off to you!!!

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Where do they list their policy on labeling gluten? Is it on the web anywhere, or does one have to get in touch with them for it? It's nice to hear that they do that - we need more of that! - but I couldn't find the information anywhere when I was looking, so I'd love to be able to link to it if it's available. :)

Taken from their Website: (under FAQ)

Some of the people in my family have food intolerances & food allergies, can you tell me which food allergens are in your products?

Our product formulations and ingredients change from time to time; therefore we do not have a list which identifies specific sources of allergens or gluten in our products. If our ingredients contain even trace amounts of peanuts, tree nuts, sesame, milk, eggs, fish, soy, sulfites or wheat (and ingredients that may contain gluten), it will be stated on the label.

However, in the unlikely event that you cannot determine whether or not a product contains the ingredient in question, we suggest you do not use it.

For more specific information about the ingredients used in our products or other information you find on the packaging, please call our toll free Consumer Contact Centre at 1-800-565-7273 and they will be pleased to assist you.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Have your thyroid checked. Why? Smoking can mask the symptoms of a thyroid problem. I developed a problem when I quit. I was also pregnant at the time and that didn't help. But a thyroid problem can make you feel depressed and can mess up your digestion.

As for the cat litter, there is one that is wheat based but it says so on the package. I believe the name is Swheat Scoop.

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According to the Canadian celiac association tocopherols are safe. I've never had trouble with them and I'm crazy sensitive. They are in almost all shampoos and soaps and tough to cut out. Just wanted to put that out there. Peter knows more about it.

Hmmmm you've got me wondering. A thought I had was- Did you start drinking Rice Dream? It is processed with barley enzymes and some people have trouble with it.

If I think of anything else I will post.


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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One thing that comes to mind is that your body is purging a lot of toxins since you just quit smoking. When you go through this type of detox, it can really wreak havoc on your emotions. What are you doing now to control your stress, now that you don't have smoking as a crutch? I would also try to focus on anything that can help them process along, like drinking fresh veggie juice, eating "cleansing" foods, and making sure you don't ingest too many process foods. Also, during this time of year, because of the lack of sunlight, be sure you are taking vitamin D. Also, I find that fish oils always helps as well.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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