Brain Fog Having Trouble Coping

[squirmingitch]

After all this time I am now having trouble coping. I am having brain fog and it feels like I'm going crazy. I feel like a newbie all over again.

I found out several months ago that I actually have a real reaction to even certified gluten-free oats. All my symptoms started coming back including the dh. So I ditched the oats for sure! Months went by & I was doing well. Then I began eating Udi's bread & slowly I began to have symptoms returning. I couldn't figure out where in the world the cc was coming from. We have a gluten-free household and never eat out. We had begun eating Perdue gluten-free breaded chicken tenders and Udi's bread and Glutino cookies. I thought the Perdue chicken was getting me because Udi's & Glutino are certainly gluten-free in a gluten-free facility. Then it hit me like a ton of bricks. Palm slap to forehead. Udi's makes some products containing gluten-free oats. So I called them to ask about cc. The lady I spoke to said that because it's a gluten-free facility and any oats are certified gluten-free then they do not clean the lines between runs unless they ran a product that contains 1 of the top 8 allergens such as milk but since oats are not 1 of the top 8 then they do not clean after running products with oats. She told me there is very real possibility of cc of the bread with gluten-free oats. That would also apply to the Glutino products.

So yes, I have been glutened by the bread & cookies. I realized - DUH - that any company but especially gluten-free facilities are going to consider gluten-free oats as "not an issue" for celiacs. So now I'm in the process of checking everything all over again as if the clock was rewound 3.5 years. I have to ask companies if there are gluten-free oats in the facility, are they on shared lines & if so are the lines cleaned between runs.

So my husband brings up the Jimmy Dean sausage patties we eat that I had checked with them about 4 or 5 times previously and they always said they are gluten free. But my hubby can't get the image out of his mind of the sausage biscuits they sell. So to pacify him once again, I call Jimmy Dean today and the gal tells me they are not gluten free. Say what???????? She says the fully cooked original pork sausage patties are NOT gluten-free! I asked her about the ingredients list which does not list any wheat, barley or rye and she said it could be in any of the ingredients, I asked her which one contained the gluten & she said she did not know but it could be anywhere, in the spices, or anything else. She said the Original Fresh pork sausage patties are gluten-free & labeled as such on the package but the cooked ones are not. She said they do not recommend celiacs eat the ones that are fully cooked. I asked her if this is the old standard cya statement because they can not guarantee all the ingredients coming to them are gluten-free & she said that's not what this case is & maintained the fully cooked sausages are not gluten-free and are not safe for celiacs. Further, she stated that they never have been.      I made the distinction to her several times that when I called in the past I was told the standard, "we can't guarantee some of the ingredients we source are gluten-free but we don't add any gluten ingredients" and she continued to maintain her stance that they never have been safe and they aren't now.

 

Have I lost my ever loving mind???? Did I forget the rules somewhere along the line??? Am I going completely insane???? 

If you read the ingredients wheat MUST be listed and it is not and I have never heard of rye being in any sausage and there is no malt or barley listed in the ingredients.

 

Sooooo, is this girl right or is she confused on the cya statement or is this a new company policy since they now supposedly have products that are actually certified gluten-free so they tell you the other items are not? I did check on their website & can't find anything that is listed as gluten-free including the fresh pork patties. 

 

At this point I think I've lost it.

[bartfull]

I'm so sorry you are having yet another setback. I guess the best thing would be to ditch ALL of the suspects and see what happens. It sounds like the woman you talked to was really sure about the sausage. If that's what it turns out to be it'll be easy to give that up. As for the Udi's, I am really surprised that a company dedicated to gluten-free wouldn't realize that so many of us react to gluten-free oats and institute better practices. I am very disappointed with them.

[obesiac]

Yes  insanity ! Thats the life with this celiac. And dont eat vegetarian  fake meat. They use gluten as a main ingredient. Who knew ?

Speaking of brain fog, yep , still got it after 5 years gluten free. 

[squirmingitch]

Thanks Barty. Well as far as the Udi's/Glutino goes I really should have thought of that earlier and realized they are not going to think about certified gluten-free oats affecting us. After all, the study that was done found 8% of 73 participants reacted to the oats in a way they could measure. I think it would cost them considerably to isolate the gluten-free oat products from the rest of the gluten-free products and they wouldn't gain a large market for their trouble. Perhaps they could run the products containing oats as the last run of the day before the facility is cleaned for the next days production but they would also have to clean the air filtration system. I'm disappointed for myself but I guess i can't blame them. 

 

This oat thing really has me in a pickle though. The kick in the rear is that gluten-free facilities used to be a yay moment for me & now it's a beware, be very wary of them. Also, as I'm checking with companies about gluten-free oat contamination they just don't "get it". I'm having to explain to them 4 & 5 times that it's the gluten-free oats I have to be careful of. The 1st 3 or 4 times I tell them they keep reading me the standard company policy on gluten-free and then when they finally understand what i've been telling them; they don't have the answer &  have to send it to the research department and get back to me. I contacted about 5 companies on Monday & have yet to hear back from them. I got answers back from King Arthur flour but we had to go back & forth numerous times for them to understand & in the end they never did "get it" & ended up giving me their standard gluten-free statement once again so I give up on them. I feel like if they can't understand the question then I can't have any faith in their answer being knowledgeable & correct. 

[bartfull]

OK, I just looked up the ingredients in every product Canyon Bakehouse makes and it looks like they are not only a gluten-free facility, but an oat-free one too. (And corn-free for those who have trouble with corn. Come to think of it, I didn't see any soy listed either but I could be mistaken 'cause I wasn't checking for that.) It's my second favorite bread. Gets kind of "wet" when I make a grilled cheese but it's pretty good right out of the package. I don't even own a toaster anymore but I bet it's really good toasted. If you can't find it in your area you can get it online.

[squirmingitch]

You are so sweet!!!! Thank you for researching that for me! It's not available here but I can order online barring it costing an arm & a leg. 

[squirmingitch]

Wait a minute!!!!!!!!!!!!!!!!! I just checked their site for stores & it says my local Publix carries it. I will call them & make sure but WOOOOOOOOOOOO HOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!

[bartfull]

It DOES cost an arm and a leg but so does Udi's.

 

The way my hands are right now I could give them an arm and an arm and never miss them. (hmm...I wonder if I could play guitar with hooks?)

[squirmingitch]

Yes, I know it all costs the earth but having Canyon Bakehouse shipped would be totally insane price wise.

 

Oh you're a funny girl.  

 

Whoops! Forgot to say, I called Publix & they DO carry the Canyon Bakehouse! Yaaaaaay! Must be a new thing for them because I've checked all their gluten-free breads before & never saw Canyon Bakehouse. If I had, I would have picked some up as I've heard so many people say it's good.

[ravenwoodglass]

So sorry you are going through this.  Have you been eating those sausages for a while? If you have maybe, hopefully, it isn't oat CC and was the sausages that were causeing the issues. That would make things much easier for you so I am keeping my fingers crossed for you on that one. I use Jones sausages which are labeled gluten free. Don't know if you can find them where you are but when you are feeling better you may want to look for those instead.

I hope this resolves for you soon.

[squirmingitch]

So sorry you are going through this.  Have you been eating those sausages for a while? If you have maybe, hopefully, it isn't oat CC and was the sausages that were causeing the issues. That would make things much easier for you so I am keeping my fingers crossed for you on that one. I use Jones sausages which are labeled gluten free. Don't know if you can find them where you are but when you are feeling better you may want to look for those instead.

I hope this resolves for you soon.

I spoke again with Jimmy Dean yesterday and got a different person - one in the research department and it all comes down to what I was told from day 1 each time I called in the 3.5 years I've been gluten-free. They can't guarantee it's gluten-free because they don't test it but there are no gluten ingredients in it that they know of. The usual cya statement. So the gal I spoke to on the 16th was not good in her communication to me. 

We have been eating those sausages for 3.5 years now & there hasn't been any problem with them.

 

 

Meanwhile. I called about gluten-free oat cross contamination in the gluten-free Rice Chex. I spoke to a gal named Zee (Zea?) (Z?). I asked if gluten-free oats were in the same facility, on shared or dedicated lines, & what kind of cleaning procedures there were if any to prevent cross contamination of non gluten-free oat products with the gluten-free oats. I quote what she said to me:

"I can not provide you with that information".

I asked her who could and she repeated her above statement time after time. I then asked her to send it to research & she said no one would be able to provide me with that information.   I kept pressing and she said they can not research that question. I told her someone in that company has to know and she held fast on her statement that no one would be able to provide me with that information.

I will not be touching any General Mills product because they don't want to answer this question at all. I will be contacting them again on this subject & their treatment of this question but I will be addressing a much higher authority & expressing my dismay at this refusal to reveal what a product may be contaminated with.

[cyclinglady]

I completely understand your frustration.  I was glutened in July and I have no clue as to what it was.  Well, I do know that it was something that my husband never consumes since he gets gluten reactions.  He is my canary!   I narrowed it down to a brand of soymilk, a prescription drug or a series of glutenings while on a 10 day vacation.  The vacation is possible, but hubby did not get sick and I went to visit my family and I keep a box of stuff for me to cook with.  We did eat out but found restaurants that we ate at before (not that that means anything) and new ones with reviews from celiacs).  The soymilk will remain unnamed because I might be wrong but it was private labeled, so no way of really tracking anything.  My prescription?  I called and they confirmed the use of cornstarch but could not guarantee that the raw materials were gluten free.   Geez!  A drug and I get the CYA statement that a lowly food manufacturer hands out?  We as a group need to push for better drug compliance.  Really, drug companies make money hand over fist!    You would think they could test their end product for gluten!

 

So, no soymilk for me.  No prescription drug either.  It was not my thyroid medication, so I can live without it.  

 

I wish I knew for sure what glutened me.  I am not going to test either product.  I am really afraid to get glutened.  It has taken me so long to heal and I became lactose intolerant again!   I had to eat all soft easy-to-digest foods for weeks.  Everything went down poorly.  Eat, have pain, eat, have pain......Doctor thought SIBO but my antibodies were sky high.  Feeling better now, so I think it was just a glutening!  

[squirmingitch]

Thanks Cyclinglady. Yes, it is a PITA. Like you I am not about to go eating these items to test them. I prefer the "I recovered by eliminating them" method. So it seems this whole journey continues to be a learning curve right? I have vowed now to only add 1 item at the time and keep a food & symptom log each time I add a new item. Said new item will be given a few months before I add another new item. What a pain but better safe than sorry. I always assumed because so many reported that's how it went for them; that the rash would be almost instantaneously presenting when I got glutened but I have discovered that is not the case with me. The 1st thing is the dizzy thing, the heart pounding fast & whoosing in my ears, the hot flashes, & then the belching & gas starts then I will wake up with terrible bloat, the migraines returning & the rash flaring then comes the joint & muscle pain & D with those insane cramps, the fatigue & brain fog. That's what happened with the oat flour starting last December. That pattern repeated this time only now I am experiencing extended GI symptoms like I've never had before. Oh joy!

[cyclinglady]

I hear ya!  I did not even have any intestinal issues when I was initially diagnosed.  I went in for a routine colonoscopy because all my friends were getting them!    During the consult, the GI suggested celiac disease because I was always anemic.  I told him I have a genetic anemia.  He wrote down that I have anemia (due to low ferritin).  He asked about diarrhea and I said no.  Maybe if I ate some garlic or had milk.  But if I avoided foods that trigger tummy issues, I was fine.   I pointed out that there was no way I had celiac disease.  My husband has gluten issues -- not me.  Boy, was I wrong!  

 

With this new glutening (and I believe it really was my first), I got terrible intestinal issues.  So, it is strange how celiac disease symptoms can ebb and flow.  Nothing, nothing is constant in life!  

[squirmingitch]

You were really lucky with the doc you had. I know you have stated that many times yourself but boy were you ever lucky! 

 

I agree with you on the prescription meds ---  OTC meds should be required to list too. Thankfully I am not on any meds at present & the only OTC I take are Advil & Claritin as needed but I worry a lot about having to take prescription meds one day. Really I'm stunned they don't have to at least list wheat since it's 1 of the top 8 allergens. We have a nephew, my hubby's blood kin, who is anaphylactic to wheat (as well as the rest of the top 8 allergens & about a billion other things). He's been life flighted more than he's had birthdays. I can't imagine how difficult it is to try & make sure he doesn't take a hit. He could well be celiac but he's been anaphylactic since birth so there's no way he can do a gluten challenge. You know at some point in his life he's going to need prescription meds.

I can't believe we got the gluten free labeling law on food before a labeling law on meds. We're way behind on that one. it will take years & years just like it did with food!